Fruity Pebbles for Dinner

My Biggest Fear

2012-01-31T12:42:00.010-06:00

There are so many things I have not learned how to deal with well when it comes to autism. Coping is a never-ending process, I suppose, and we all have our limitations. Mine are fairly gargantuan.

I still cringe when Daniel is having a billboard-sized autism-moment in public.

I sometimes display a total lack of patience when I am trying to get Daniel to stop the stims and participate in life the way I want him to ... the way his sister does ... the way I thought he would, too, back in the day when baby-giggles and first steps were enough to make me feel like I was the luckiest woman in the world ... in the days before autism entered stage-left and took over the show.

And I get frustrated at the end of a long day when he hollers. Screaming, you see, is one of his primary ways of getting my attention -- especially when we are in the car. He has something he wants me to know, and I should be sympathetic. If he could express his thoughts with words, after all, he would. And whatever it is, it obviously is important to him. But he can scream so loudly that one of these days, surely, I am just going to drive right off the road.

So many things I have not managed to do ...

And here is THE ONE -- the one thing I am not able to do that is of paramount significance:

I have not learned how to let go of the fear of what will happen to my son when I am six-feet-under.

I know there are so many special-needs-parents out there struggling with this fear -- this anxiety that can overwhelm you when everything is going relatively well -- emphasis on "relatively." This fear can sneak out of the dark and take you down. It is vicious; it is malicious; it is all-consuming.

I know that I can make plans for him. I can move to another state with better programs for adults with disabilities, and given that I currently live in Texas, I probably will. I can find a group home or some other living environment where I think Daniel will be safe. And even though I won't be around anymore to make sure that Daniel's days are dominated by the things that bring him the most joy, I can search for an arrangement where somebody at least promises trips to the pool, days at Six Flags, and Dairy Queen cones with chocolate coatings.

But when I am gone, will it really happen?

What will happen to this boy -- MY boy -- the baby who started moving in my belly whenever I turned on Norah Jones, the toddler who took his first steps from the couch to my extended arms, the eight-year-old who finds joy in so many things but who cries the tears that pierce my heat like arrows when he is struggling to tell me something and I just ... don't ... know ....

What will happen to Daniel when I am no longer here?

It is the fear that will haunt me, even though I have gotten fairly good at living in the here and now ... it is the fear that will haunt me until I take my very last breath.

Raindrops Keep Falling on My Nikes

2011-12-06T17:11:00.004-06:00

When I was a kid, I loved music and I loved to dance. But I hated P.E.

So I was thankful when junior high came around and I could replace P.E. with band.

No more running in front of peers.
No more feeling slow and awkward.
Yipee.

Last Sunday, I ran my third half-marathon.
The temperature was around 39 degrees.
And it was RAINING.

I finished in two hours and 46 seconds -- a personal best.
I finished 165 out of 981 in my age division.

Five years ago, I never would have thought of running a half-marathon. Maybe a 5K. But a half? In a cold rain? No way. I am too slow, too big, too clumsy ....

And then came autism. The kind of autism I could no longer deny.
With it came personal disappointments galore. Another child with a birth defect, a marriage in trouble, fear, stress, loneliness ... sadness.

If I hadn't started running, I am not sure where I would be.

Here is what I will take away from my last race:

(1) Maybe running a half marathon sub two hours isn't such a pipe dream, after all;

(2) When your knee starts to hurt, and then you see somebody pass you who is running with just one leg, you really don't feel like complaining;

(3) I really appreciate people who get up early and stand in some crap-weather to cheer;

(4) As difficult as it is to run 13.1 miles in a cold, non-stop downpour, it is not nearly as tough as parenting a child with autism, and it pales in comparison to the challenges my son faces every day.

And what do you know?
I don't really suck at this running-thing.
Yipee.

To Josh, from Round Rock

2011-11-24T23:43:00.007-06:00

In the spirit of Thanksgiving, I write this to sixteen-year-old Josh, from Round Rock,Texas.

Thank you, Josh, for playing with the boy who took such an interest in you in that hotel pool.

Thank you for not questioning why he invaded every bit of your personal space and clung to you like you were a long-lost friend, even though he had never seen you before.

Thank you for returning his laugh. Thank you for looking him in the eye. Thank you for talking TO HIM, and not around him.

When I told you that he has autism, thank you for responding as if you already knew.

When I told you that he is non-verbal, thank you for again responding as if this wasn't some kind of strange news.

And, mostly, when I told you that my son loves being thrown in the pool by his dad, thank you for throwing my 65-pound child around that pool.

After watching you interact with my son for just a few minutes, I knew you had to have some type of connection to at least one person with special needs.

You told me that you volunteer, through a program at your high school, to work with kids with autism.

Of course you do,

Because look at how wonderfully you interacted with my son -- a boy who usually keeps to himself in that pool and draws the occasional glances when his differences become apparent.

Thank you for welcoming his attempt to interact. As you saw, he doesn't have the skills to approach people in typical ways. Thank you for accepting his clear interest in you and returning the attention.

Thank you for commenting on his strong swimming skills.

Thank you for saying that "he seems high functioning."

He is not -- at least not according to the traditional indicators employed by school districts and educational evaluators. Daniel struggles. We struggle as his family. BUT thank you, thank you, Josh, for reminding me that someone who knows a little something about autism can see Daniel and see a lot of great things.

Thank you for talking directly to my daughter, who too often gets overlooked. Like me, she wishes her brother had friends. Like me, she loves watching her brother being happy. She was thrilled watching you interact with him in the fun, positive ways that you did.

Thank you for reminding me that there are kind, golden-hearted people in the world who can look at my son and see more than just a nonverbal child with autism.

If you read this, Josh-from-Round-Rock-who-was-in-DFW-for-the-Cowboys game, show it to your family and tell them how lucky they are to have a kid like you. And if you are still single when you are 35, look us up. You are, after all, only ten-years older than my daughter. ;)

2011-11-22T23:46:00.001-06:00

He is eight-years-old.

“Autism” has been spoken in my home for seven of those eight years.

Autism has wreaked havoc – on my son, on his sister, on my family, and on me.

My life, when I choose to go beyond the confines of my home, is a never-ending public service announcement.

This is what autism looks like, it says.
Real, down in the dirt, never let up, autism.

I am tired, and so this post might seem cliché. But parenting a child with autism is a lot like swimming upstream -- or floating in the ocean.

He is eight-years-old.

And I am still wondering: what is it that I am going to hang on to?

I look in all directions.

I take note of moms who embrace their faith, who turn to scripture and prayer and find not only strength, but reasons to hope and reasons to praise.

I take note of moms who embrace the fight, who spend their midnight hours reading every book, who wear out the tread on their tires by taking their children to people who claim to have found answers for others, who buy the supplements and the gluten-free foods.

I take note of moms who embrace a mission, who battle the insurance industry and lobby Congress members, and raise their voices in support of this growing community of families who see autism impact the lives of our children in debilitating ways.

I admire them, all of them.

But I am not one of them.

It is not something I am proud of.

I am part of that barely-hanging-on group.

I once fought with an insurance company, only to be shot down.

I have requested more services from a school district, only to be shot down

I have moved with my children so that my son could have ABA services, and I have driven him to multiples therapists … and there is autism, so very real, so incredibly disabling, still such a royal pain in the ass, robbing my son of so much.

I wish I could say that I have found resolve and strength from a renewed faith in God. But I have not. I do not hate God. But I have questions, big-time questions, for Him should we ever meet.

I wish I could say I have searched tirelessly for answers.

I wish I could say I have really advocated for my son in the way he deserves.

But I have not done these things.

I am living in the day.

He is eight-years-old.

And I am still wondering: what is it that I am going to hang on to?

My Visit the Second Graders: Part Five

2011-11-15T19:05:00.008-06:00

The last thing I want for you guys to know is that people with autism are a lot more like you than they are different from you.

If Daniel could talk, I think these are the ways he would tell you that he is like you.

I think he would say:

Hey guys, I really love to swim. I would swim every day if my mom would let me.

And I love waterslides, especially the really fast ones.

I also love rollercoasters. I love to go to Six Flags and ride all the scary rollercoasters, even the Shock Wave and the Titan. I love it when the rollercoasters go really fast and when they make me go upside down.

I love pizza and popsicles and popcorn. But my absolute favorite food is cupcakes and my favorite candies are Sour Patch Kids and peppermints.

I love to climb, and I love to watch the otters at the zoo.

I love to go to football, basketball and baseball games and I love watching videos on my I-pad.

I think that Daniel would tell you that he really likes going to school and that he is paying a lot more attention to you all than you realize.

And here is what I would tell you about Daniel, as his mom:

Daniel loves people more than anybody I know. He loves people very deeply. He doesn’t care what kind of clothes you are wearing, or whether you passed your spelling test. He doesn’t care about any of the things that don’t really matter. He just loves people who are nice to him.

And Daniel is also the bravest person I have ever known. He started riding the big roller-coasters at Six Flags, even the one that goes upside down, when he was just four years old. He wasn’t even scared. That is one of the ways he is brave. But there are others.

Every single morning when I tell Daniel it is time to go to school, he puts on his shoes and gets in the car with a big grin. And if I were Daniel, and I knew I was going to this great big school each day and I couldn’t tell people what I needed – I know for sure that I would not be as brave as Daniel.

I don’t think I will ever meet anybody as brave as Daniel for the rest of my life.

And I think Daniel would tell you that even though he is a lot different from you and even though he can’t talk to you, he likes it when you pay attention to him. I think Daniel thinks that all you guys are really awesome. And every time you try to help him, it makes him feel really good.

My Visit with the Second Graders: Part Four

2011-11-02T22:13:00.021-05:00

My answers to the rest of their questions:

Why does he run around the classroom and run away when people are trying to help him?

Oh, I LOVE this question. Because it tells me that you guys are trying to help Daniel. And that really means a lot to me as Daniel’s mom.

Well, I think there are a couple of reasons. And I think it depends on where Daniel is and who he is running away from.

Sometimes, I think Daniel is trying to get away from work!

Daniel is really good at escaping when he is tired of working, and I can hardly blame him. We all have things that are hard for us. When Daniel comes to school, he is being asked to do the things that are the very hardest for him -- like listening.

Another reason I think he runs away, especially if he is running away from you guys, is because he is a little nervous. He KNOWS he is different. He knows he can’t do all the things that you guys can do. But he doesn’t know how you guys are going to respond to that. So that makes him a little nervous, and probably even a little scared.

You guys are so great at talking and listening that when you are talking to each other it probably sounds a little something like this:

HEY! OH MY GOSH I HAD SUCH A GREAT WEEKEND AND DID YOU SEE JUSTIN BEIBER ON TV THIS MORNING AND CAN YOU BELIEVE ALL THIS HOME WORK WE HAVE TO DO IT IS RIDICULOUS.

Imagine how you might feel if one day you moved to a different country where everyone spoke a different language. And imagine if everyone in this county was talking that fast and you couldn't even ask them to slow down. I think that is sort of what it is like for Daniel every day, and sometimes he just wants to escape and take a break.

Why, in PE, does he squeal and cry out when the teachers are trying to help him?

So you guys have noticed that sometimes places like the gym can be hard for people with autsm.

And here is something else you should know about autism. Does anybody know what the five senses are?

(With a little help, they named them all.)

People with autism sometimes experience things with their senses a little bit differently, because the connections in their brains are different. So, sometimes people with autism see, hear taste, touch or smell things differently that the rest of us.

I know Daniel does sometimes. I know that when he looks at a waterfall, he sees things that I don't see. I think it is because he looks at it so much more closely while I am busy listening to what people are saying around me or thinking about a story I want to tell my best friend. Daniel is only looking at the waterfall.

I know he hears things differently sometimes too. I think he hears things louder sometimes. I have watched him before when we are outside and noticed that he is really listening to something. So I have stopped what I am doing and tried to listen really hard. And it is usually the coolest sound – like the pretty whistle of a bird in the distance or the buzz of a bug – something I never would have heard if I hadn’t really stopped to listen.

I think Daniel sometimes hears more things than we do and sees more things than we do, which, when you think about it, is really cool. But when language is tough, and when sounds are a little bit louder to somebody, someplace like the gym can be REALLY chaotic. It can seem SUPER loud and SUPER scary because what you guys are hearing sounds so much louder to his ears.

Why does he grab stuff and run?

I think the biggest reason is Daniel gets told NO a lot! The grownups in Daniel’s life are always pushing him to do things that are hard for him. We want him to listen to us all the time, so he will get better at listening and understanding. We want him to try to make sounds all the time. We want Daniel to try, try, try at the stuff that is hard for him so we tell him no when he wants to do something else. We tell him no when he wants to just grab something comforting to him, like those lids, and escape.

If I was used to getting told no all the time, I think I would probably try to grab stuff and run, too!

I think Daniel grabs things and takes off for the same reason his sister will grab a big bag of chocolate cookies and take off to her room. Because she really wants those cookies, but she figures she is probably going to be told no.

Why did he bite the teacher?

Oh, no, I really hate this question guys because I hate to hear about Daniel biting anybody at school. BUT I am still really glad somebody asked this question because it allows me to tell you something very important. I want you guys to know that Daniel never wants to hurt anybody.

I want you guys to think about the last time you had a rotten day. And if you can’t remember, then just try to imagine some things that would make your day really crummy. Maybe your dog is sick. Maybe your mom is sick. Maybe you missed seven words on your spelling test. And you just found out your best friend is moving away. I want you to think about some of the things you do when you are feeling just so sad and down and scared.

I'll tell you what I sometimes do when I get feeling super crummy or sad: I yell.

I even yell at people that I really love. I might even yell at my kids. I don’t mean to hurt their feelings, and I don’t want to hurt their feelings. I am just feeling so terrible in that moment that the words just come out, and they come out loud because I am feeling so badly.

Well, bad days for Daniel are even harder than my really bad days because he can't talk to anybody about why he is angry or sad. I think Daniel bites for the same reason I yell. It is his way, sometimes, of expressing his frustration.

One last post about my visit coming up

My Visit with the Second Graders: Part Three

2011-10-23T13:15:00.008-05:00

They were an enthusiastic audience, this group of second-graders who spend part of each school day with my son -- these kids who know very well how different Daniel is and wonder why. As I moved from their most fundamental questions -- was he born with autism; why doesn't he talk -- to those focused on his behavioral characteristics, I wondered if I could even begin to explain the things that are so mysterious to me.

I "know" Daniel better than anyone else "knows" Daniel. To know Daniel is to worry in immeasurable amounts, to accept that love transcends words, and to wonder about all the things you can't really know. When you think about it, you can say the same for all of our most treasured relationships. Autism just makes relationships so much more complicated, because -- and I speak for myself here -- it leaves you longing for the opportunity to communicate with your child in the typical ways that bond people together.

Just as Daniel is complicated, so is knowing him ....

... although he is so worth knowing.

So I did my best.

Why does he want to spin things?

Here is what I think: this world filled with words is tough for people with autism in a lot of ways. You guys are so good at talking, and when you are talking with somebody, you are really good at being able to tell how that person is feeling and what they might want to talk about next. People with autism are good a lot of things, but that kind of stuff is hard for them. So, I think they take comfort in things that are predictable to them.

And we all do that sometimes. I will give you an example. Do you guys have a favorite movie?

(Yep, they did.)

How many of you have watched you favorite movie more than once?

(Well, duh, they all had.)

More than twice?

(Yep. The hands stayed up.)

More than five times?

(Yep.)

How many of you think you have watched your favorite movie more than TEN times?

(They all looked around the room at each other, and they all seemed to be on the same track. These kids really liked their favorite movies.)

So, even though you know everything that is going to happen in that movie,even though you can probably repeat lots of it word-for-word, you still like to watch it.

And I bet that when you guys aren't feeling well, you'd probably like to just sit on the couch and watch your favorite movie, even though you have seen it so many times. Even though you know that whole movie by heart, watching it brings you comfort. It is familiar to you.

Well, its the same for Daniel: things that are very familiar to him bring him comfort. He knows that when he picks up a lid, or something else that spins, he can make that lid spin every single time by doing the same thing each time. It is predictable. It is easy to understand. And when he is spinning a lid, he can get lost in it, and he sometimes will tune out the world around him – just like you guys tune out the world sometimes when you are watching your favorite movie or TV show.

Why does he grunt and say uh?

Do you guys mean when he kind of screams like this: AAAHHH!

(Yep, they did)

You guys have noticed that sometimes Daniel can make a lot of noise. And sometimes, I bet, all this noise really surprises you! It surprises me, too. I can be sitting in Chic-fil-a with Daniel and he will see a picture of ice cream on the wall, and he will shout "AAHH" so loudly that I nearly fall out of my seat onto the floor!

But even though all that noise can really startle me, it is also exciting, and here is why: Daniel hasn't always used his voice box to get attention. When he was younger, whenever he wanted something, he would either try to get it all by himself or he would come and find me, take my hand, and lead me to whatever he wanted. And he would put my hand on what he wanted to show me. Now, he is really trying to use sounds to get peoples' attention. But it is hard for him.

I want you to try something with me. I want everyone to make the "t" sound. Like this. Now I want you to think about all the things your mouth is doing when you make that sound. Your tongue is going up to the roof of your mouth, right? And what else?

("My mouth goes tight, kinda like I am smiling," says one child. "And I am blowing air out of my mouth," says another.)

That's right! And you have to do all that stuff just to make ONE SOUND!

Well, remember those roadblocks we just talked about? They are making it really hard for Daniel's mouth and tongue and lips to do all that stuff. So, right now, he is making the sounds that come easiest to him. And he really wants to be sure he gets your attention, even though he can't say things the right way, so he is LOUD!

When he really slows down and tries hard, he can make a lot more sounds and he can say some words. I am hoping that some day he will be able to say a lot more, and that he will use a machine to help him with the words he has trouble saying ...

UP NEXT: the last of their questions and the ways that Daniel is so much like them.

Second Graders, Here I Come

2011-09-15T12:17:00.005-05:00

In less than two hours, I will be sitting in front of a group of second-graders at my children's school.

I will be talking to them about autism and, in particular, about Daniel. How do you talk about Daniel without talking about autism?

I will be attempting to explain to these seven- and eight-year-olds why they should see my son as different, and yet so much the same -- as in need of some assistance, and, yet, deserving of acceptance as an equal.

No small task.

I am excited and nervous.

Yes, they are "just" second-graders.

But they are my son's peers. They are the kiddos who see him every day.

They are the children who either will or won't ask him to sit with them in the cafeteria.

They are the children who either will or won't stand up for him when someone is treating him as "less than."

They are children who are currently forming their opinions, based on their experiences with Daniel, on what it means to be a friend to somebody who can't return friendship in traditional ways.

They are the children who have the power to educate not only their peers, but their families as well.

Let's hope I do right by my son today. I owe it to him.

Breaking the Seal

2011-09-05T21:35:00.020-05:00

Hope springs eternal in the human breast;`
Man never Is, but always To be blest:
The soul, uneasy and confin'd from home,
Rests and expatiates in a life to come.

--Alexander Pope,
An Essay on Man, Epistle I, 1733

Hope springs eternal ....

But does it?

For those of us who have brought a child into this world, so filled with excitement and plans and dreams,

so filled with hope .....

Only to hear the labels,

to see the signs,

to watch as our children's peers do all the things we thought our sons and daughters would do ....

somewhere along the journey the word "hope" takes on a new meaning,

if it doesn't leave our vocabulary altogether.

I do not wish to speak for anyone other than myself.

Because even though the path each special-needs-parent travels is sure to intersect with the roads of others ....

even though, if we are lucky, we find cherished friendships along the journey with parents who understand because they live it ....

Still, at the end of the day, we process our pain alone.

And we handle it, or fail to handle, on our own.

So, I speak only for myself when I say that I have had difficulty with hope the past few years. Other special needs parents, without a doubt, have had a much stronger handle on hope than have I.

I had it once. Four years ago, I moved myself and my kids 350 miles away from the city where they were born. I did it so Daniel could go to a school that offered special services to children with autism. I counted down the days until my husband would be able to be with us all the time, and I did my best to make two little children happy, even though I was filled with nervousness and fear and worry.

I still had hope then, even though I was anxious, even though my dreams for my son already were considerably altered from what they were when Daniel was born.

I had hope that Daniel would get the help he needed at his new school, that he would be able to talk to me.

That is really all I wanted: for my son to be able to talk to me.

Screw college degrees and baseball games.
Who gave a crap whether he ever read Shakespeare or learned the quadratic formula.
I just wanted to hear his voice.

It didn't happen.

And what happened instead? What I believed in -- what I based my life on -- turned out to be untrue. I had an up-close view of viciousness in its worst form, and I experienced a difficult lesson in how little words actually mean when the people who say them aren't willing to take actions to back them up.

And my son still can't talk.

Somewhere along the way, my hope vanished.

It poured out of me along with so many other things ... things that are impossible to retrieve.

But, hope, dare I say it, really does spring eternal -- at least when it comes to your child.

For a moment last week, someone gave me a little hope.

A speech therapist, one whom I respect tremendously, evaluated my son. She already knew him because he previously received services at her clinic. She didn't work with him individually but she consulted. She is in great demand, you see -- she is that good.

She is awesome.

I asked her to do an evaluation that I could present to our school district (because I am disappointed at the level of services currently being offered to my son, but that is a story for another post).

Her special area of expertise is PROMPT therapy, which is designed to help kids, like Daniel, with apraxia (which, when added to autism is such a one-two punch in the gut).

After the evaluation, she told me how well Daniel responded to her PROMPT techniques, much better than the last time when he was in her clinic more than a year ago.

I said something about Daniel already being eight-years-old.

She stopped me, and she took me into a private room, and she said:

This kid can be talking.

This was last week, and those words brought tears to me eyes when I heard them -- just a few because I was in public, after all.

But, now, as I type this, there is a torrential downpour.

So many times I have put dreams on a shelf.

So many times I have looked into my son's eyes, so thankful that he shows love and affection for me in ways I cannot doubt, but wanting, wanting, wanting ....

more.

It is terrifying ... this idea of breaking the seal on my boxes of stored-away hope.

My heart has been broken so many times, in so many ways -- ways far more painful than anything autism could ever accomplish, which is saying something. And there are scars on my heart that will never heal, not completely.

But is there a chance that some day I still might hear my son's voice?

Do I dare to hope?

How can I not.

My heart still beats.
I still dream.
And I am always a mother.

2011-08-26T17:22:00.010-05:00

Sometimes a friend who has been there, because she lives it, can make a point in such a way that I want to shout praise from the rooftops.

So here is the blogosphere equivalent: a link to a post on her blog.

It's the Little Things

I hear ya, Deb.
I can count the number of times that has happened to me with, well, one finger. (Not the autism-related stress in public part. That is my life. But the stranger-approaching-with-a-kind-bit-of-encouragement part.)

I will never forget it.
It really does mean so much.

The Friends We Choose

2011-08-17T18:12:00.006-05:00

Life is partly what we make of it, and partly what is made by the friends whom we choose.
-- Teyhi Hsieh

So true.

Tomorrow is Daniel's birthday.

He will be eight-years-old.

Autism has been with us the entire time, introducing itself during what should have been such happy days, hanging on like a pit-bull, throwing daggers and stealing dreams.

I haven't had the parenting experience I once envisioned. (I know, I know -- who does? But some of us get thrown more curve balls than average. And I was never good at catching.)

I haven't had the marital experience I once envisioned. (And I truly believe that my husband and I had much love for each other when we married. It is amazing how autism can put the spotlight on the weakest parts of a marriage and open the door to so much pain.)

And I haven't had the career I once envisioned. (Although maybe some day...)

But, as I search for silver-linings -- and don't we all need to do that sometimes -- I gotta say that I have been very fortunate when it comes to knowing some kick-ass gals.

I have some very good friends.

There are special things about each stupendous chic who has been a part of my life these past few years -- years when life was turned upside down by things that could have destroyed me if it weren't for some very terrific women (and some very supportive parents).

There is the woman I just happened to meet on a playground one day, who asked about the school across the street from the swings and slides where our children played. It was my children's preschool. I told her about the school's inclusive programming for children with autism -- the reason my son attended. Who knew that she would enroll her child, that we would connect through that decision, that a chance meeting on a playground would lead to a relationship that I value so very much. I admire her for the way she searches for the best in people, for the way she always tries to uplift. It is as natural to her as breathing.

There is the mom whom I met shortly after moving to DFW, at a time when I was feeling lonely and uncertain. Her son, who also has autism, started at the same preschool at the same time as my son. And even though I was not then at a point where I felt comfortable speaking freely about autism and how it affected my son, even though a part of me just wanted to crawl into a hole and ignore the world, I couldn't help but be drawn to her. I am amazed at everything she does for her son. If someone told her she could help her son by moving a mountain, she would exhaust herself looking for a way to lift it upon her shoulders.

There is the friend from back home, my son's Godmother, who manages to remove layers of stress each time I see her. When I am with her, I feel young again. I laugh like a girl, like the girl I once was.

There is the childhood friend who now lives not too far up these congested DFW roads -- a woman who has felt too much pain, pain that was not deserved, pain that is particularly tortuous because it came from the actions of someone she loved with her whole heart. I admire how much she does, without help, for her children. She plays a role in my life that is unmatched by anyone, because hers is the strongest voice counseling forgiveness, urging patience, promoting love.

And there is the woman who has been there for me like no other, through layer upon layer of crap -- the woman who recruited me to run my first half-marathon, who consistently answered her phone in the middle of the night when I literally thought I couldn't take one more bit of pain, who sat with me in my car and cried after I learned an awful, unthinkable truth. What I would do for her .... I love how she listens and cares. I love how she tells me things I need to hear even when she knows I probably do not want to hear them. She could teach a seminar on what it means to truly be a friend.

There are other great women too ...

... the childhood friend who says both her first and last name every time she leaves a message on my voice mail, even though she is one in a million. She is getting married this fall. It will be the first time in such a long time that I have been excited about going to a wedding...

... my daughter's Godmother, with a soul so pure and nurturing, who one day -- back when I was pregnant with Olivia and so worried about what doctors were telling us -- made me laugh and feel good about myself with words I will never forget...

... the gal across town who looks like she just stepped out of a catalogue and says what she thinks without apologies. She reminds me of myself when I had more energy, NOT because I ever once looked like I stepped out of a catalogue, but because I once spoke with the same zeal. She can always be counted on for a favor, and, wow, if only I could organize my life half as well as she organizes a party...

...another autism mom whom I have known for a while but am just now getting the chance to really know. She understands way too much, which, unfortunately, is an indicator of how much she has had to endure. But, oh, how I am so grateful to know someone who understands my life on so many levels. She is such an example of dignity, such a model of strength ...

... the moms I have met through this blog, through autism. May God bless them all, and their precious children. The women who, like me, find some solace in the written word, who strive for a way to make sense of a disorder that has robbed our children of way too much, who pour out their fears, their heartaches and their joys in this great big blogosphere because therapy is expensive, and Lord knows we need as much therapeutic release as we can get, in whatever form we can get it.

My life is not exactly how I envisioned it would be, not even close.

But these women, these wonderful mothers, are so much more than I could have hoped for when it comes to friends.

You know who you are ... love to each of you ...

Leah

2011-07-12T22:10:00.011-05:00

Today marked 36.

36 years on this Earth, and I think my face shows every one of them and then some.

I struggled today.

And it is difficult to explain why.

I suppose, to put it simply, this is not even close to what I envisioned life would be like at 36.

I suppose I struggled today because accepting reality can be so damn difficult sometimes.

And my reality is that I sat through an ARD meeting (also known as an IEP meeting) yesterday listening to educational evaluators describe tests results showing that my son is severely, incredibly, profoundly, greatly, monumentally challenged. BUT, despite those challenges, they would like to offer him an amount of therapeutic services that might be appropriate for, say, a kid who stutters.

My reality is that while I sat through this meeting I wasn't thinking primarily about my son's difficulties and how he will be challenged for the entirety of his life. I wasn't thinking primarily of how sad it is that our country places such a low priority on the education of its young people, much less the education of its special needs population. I wasn't even thinking of how stinking unfair it is that I cannot get a damn bit of help-- from insurance companies or the government -- for my son. Instead, I was thinking primarily about how my daughter, my son's only sibling, would handle the stress of trying to help her brother when she is an adult, and she is the only family member left for Daniel to depend on.

My reality is also that I have dealt with more pain the past three years -- pain completely separate and apart from autism -- than I have known how to deal with. The people who have read this blog since its inception know that I started it during a time in my life when I felt desperate and alone -- at a time when I saw my marriage blow up and my life completely turned upside down. I felt as if doors were continually being shut in my face, as if the person I had trusted most in the world had just disappeared, as if I was faced with a boatload of responsibilities for two beautiful children... and if I was not entirely alone, I was without the person I needed most.

That was the fall of 2009 -- a time in my life so horrible that the experience wiped many good memories of so many good years from my brain.

That time and the years since changed me in so many ways.

Some of them good. Some of them bad. And some of them ... well, I am just not sure. Is it a good thing or a bad thing when you go from thinking that most people in the world are honest and decent to thinking that such a belief is ridiculously naive?

Anyway, here I am... another year older if not any wiser. And the circumstances in my life have changed. And thank goodness they have. I know things can always be worse, but when I think of where I was two years ago, or even six months ago, if things had gotten much worse .... I hate to think about it.

I am not divorced, as you might have figured out from my last post.

I still struggle with how to be a good mom to my challenged son and my amazing daughter.

I still struggle with feeling like I am never doing enough for my children, most especially Daniel.

And now I struggle with mending a relationship that was once filled with so many expectations, so many dreams, so much friendship, so much laughter .... so much, so much, so much.

I have to continually remind myself that the heart is such a complicated thing ... just like the brain it is impossible to fully understand. I have to stop questioning myself and my motives and accept the simple fact that the things I am trying to do are based in love for my children and love for their father.

And I have to remind myself to try to live in the day, which is something I have been doing for an incredibly long time.

I am taking steps that I hope will help. I have accepted part-time employment, and I have even found myself in church -- trying to find comfort and peace within the rituals of Mass.

I have so many wonderful people in my life for whom to pray -- people who helped lift me up these past few years when I felt like I could barely function. And, surely, I can find some peace in that.

So, I ask all of you who know me, or who think that you might have some experience with the things about which I write, to keep me in mind from time to time -- either through prayer or good thoughts.

Because what I would really like for my reality to become is ...a peaceful one. And I am not yet there.

Fourteen Years

2011-06-20T22:42:00.008-05:00

Fourteen years ago I walked down the aisle on my father's arm, into the arms of the only man I have ever loved.

I was so young -- just a few weeks shy of my 22nd birthday. If you had asked me at the time, I would have said that was too young for most people to be married.

But not me.

Because I was sure.

Sure of myself and sure of my love for this person I had pretty much been infatuated with from the moment we met.

We dated for four years before we married.

We waited another six years before we had our first child.

We both had advanced degrees. We had finished our educations while living in our first marital home -- a cozy apartment hundreds of miles away from our families, from everyone we had ever known, in a place where we could be on our own.

Just us.

Just us and our persnickety cat (who is, amazingly, still alive today at the age of 16).

Just us and months of snow and freezing temperatures. (But who cared? We were young and in love. Who needs extra blankets?)

Just us and the relatively worry-free existence of two young adults with plenty of confidence and little to fear.

The years went by and we moved closer to family; and he started talking about having children. I wasn't quite sure I was ready, but I knew I wanted to be a mother. And then came one frustrating day in court as a rookie deputy prosecutor, and I thought to myself, "What am I waiting for? Why not? I want to be a mom. Who knows how long it might take? I love this man and trust him with my life."

Nine months later, Daniel was born.

Nothing changes a woman's life like becoming a mother. Nothing.

And that goes tenfold -- no, a thousand-fold -- when something is wrong -- very wrong -- with your child.

When he was born, Daniel was simply beautiful.

He still is.

I remember when the nurse was cleaning him, and my husband was practically bursting with pride, I asked, "Does he have ten fingers and ten toes?", which was my way of looking for some assurance that my baby was OK.

I knew that, sometimes, babies are not OK.

Daniel had ten fingers and ten toes. He had a mess of hair and a hearty yell. He scored a 9 on his first APGAR and a ten on his second. He could grab onto your finger with amazing strength from the second he came into the world, and he could darn well eat enough for three average babies put together.

But he was not OK.

Almost eight years after my son's birth, I know too much about too many things I wish I had never given thought to -- autism, lymphatic malformations, ABA therapy, crappy insurance companies, apraxia, heartache, loneliness, disappointment and fear.

If I try to look on the bright side -- and that can be a struggle when the brightness seems more like a dim glow -- I also have learned what its like to have a friend who is one of the most giving people ever to walk the Earth, and I have had a year of therapy that has helped me deal with one hell of a lot of anger. I think I have picked up some much improved listening skills, too, if I can toot my own horn for a bit.

Fourteen years after putting on that dress and walking down the aisle, I am still married, and I still love the man I married.

But things are so much different than they were in that cozy Midwest apartment.

So much has been lost ...

Some days I feel like I am barely functional. I feel like I have all these balls in the air, and I never learned to juggle, much less catch. I still mourn the dreams that I had for my son, whose future most assuredly will be worlds apart from how I pictured it that day I peed on the stick. I struggle with how to maximize his potential, with how to make his days as happy as they can be, given how difficult this world is for him. I struggle with how to make my daughter's life as "normal" as possible, with how to make sure she is not overlooked, with how to foster a loving relationship between her and her brother that will last a lifetime, because Daniel is going to need Olivia for so much after I am gone.

I struggle with a lot of other things as well... so many very painful things, none of which I ever dreamed would be a part of my life's story.

With all that said, I don't think I am in much of a position to give anyone any advice on anything other than this:

If you find yourself dealing with a disabled child, the greatest gift I think you can ever give to your spouse is to say, as often as you can, "I love you." Take him or her in your arms and tell them, "It will be OK. And even if it is not OK, it will be OK. Because we will make it OK. Because I love you. And I will never leave you or this child. No matter what."

Say it in some form or another as often as you can, even though there will be times when you don't feel it -- when you are struggling with the weight of fear and sadness and even anger.

Both parents need to say it, because each will need to hear it. A lot.

It may not be enough. But, maybe, if you say it enough, it will be.

My Dad

2011-06-18T22:05:00.009-05:00

I am very lucky to have a father who defines his self-worth, in large part, by what he does for his wife and daughter.
So, in honor of my dad, I would like to share a story.
I think it reveals a lot about who my dad is as a father.

When I was probably five-years-old, I had a rabbit puppet named Natasha. She wasn't very fancy--just a rag-tag blue puppet with whiskers and a pink nose. But I loved her.

My parents purchased Natasha during a trip to visit my grandparents. If memory serves, the store was about four hours into our five-hour trip to the simple but beautiful home in Northwest Arkansas -- where my grandmother baked her melt-in-your-mouth angel food cake especially for me and my granddad would play hide and seek for hours.

Natasha slept with me at night and she accompanied me on trips. Until, one day, she was gone. Lost.

My heart was broken.

I had dozens of other stuffed animals, all of whom were bigger and fancier.

It didn't matter. I was heart-broken.

And so my father, who always has believed that you either find a way to stop someone from crying or join in their tears, got in his car, drove four-hours each way and came back with another Natasha. (Thank goodness she wasn't an original.)

The problems in my adult life have not been that easy to solve.

But that has never stopped my father from wanting to.

My dad never missed a dance or piano recital.
He loved every pet as much as I did, and he dug a grave at the death of each, with tears in his eyes.
He went down to the courthouse to pay the speeding ticket I got when I was 16 (and it was a whopper.) He told me not to worry about it but to be more careful. (And he didn't even tell my mother.)
He waited for me at the finish-line of the half-marathon I ran year-before-last, when I was running just to remember that I was still alive.

I have known from a very early age that I am the most important thing in my parents' lives. They each set such a high standard of parenting -- one that, in many ways, I doubt I will be able to equal.

If I could tell my dad one thing it would be to stop worrying so much, to stop trying so hard to find a way to fix all my problems.

But that would be like telling the Pope to stop praying.

Happy Father's Day, Dad. You are very, very loved.

El Baile de la Ranita

2011-05-24T22:51:00.029-05:00

Mis amigas de Peru presentan: "El Baile de la Ranita"

Cool as a cucumber, my five-year-old girl walked up to the microphone and said those words.

And she didn't even sound like a Gringo.

Instead, she sounded so very much like her teacher--the beloved teacher from Columbia who has filled my daughter's days with patience and enthusiasm.

Wow, wow, wow.

My daughter, my baby, my torpedo of emotion and drama, not only stood in front of a HUGE audience in an unfamiliar auditorium, she listened intently for her moment to approach the mic. And she said her line perfectly -- in Spanish!

I looked at the other parents in that auditorium, with their cameras flashing and their extended relatives taking up way too many chairs. I know that they, too, were excited to see their children growing up before their eyes.

But how many of them appreciated -- really, truly appreciated -- what was taking place at that very moment.

They were witnessing little miracles.

Each time a child waited to take the stage and watched for the signal.
Each time a child danced to the music.
Each time a child sang.

Each time a child spoke .... every single word .... a miracle.

I know.

I know because my daughter's brother, my first-born, sat beside me in the audience, with no understanding of what his sister was doing, with no real appreciation of what it means to have an "end of the year show."

I know because my sweet boy cannot sing .... or speak.

I know because at the exact moment my daughter approached the stage, my seven-year-old son decided to bolt. I went after him, and then I stopped. I turned my back to my son with the hope that he wouldn't go far.

And I watched my girl.

How can a mother be filled with both joy and fear in a single moment?

You would know if you walked a mile in my shoes.

So many times I have, in a way, chosen Daniel over Olivia.

I have told her, "Just a minute, Olivia," when I have been pressing Daniel to make that extra effort -- extend his index finger to point, move his head up and down to signal his agreement, open his mouth and try -- just try -- to give me the closest approximation of a word that he can.

I have gone to her brother on the playground when Olivia wanted me to watch her. But Daniel was lost in a stim -- probably repetatively dropping wood chips -- and I just couldn't bare to see him trapped in his own world.

I have put her to bed when my mind was lost in the "what ifs" and the "what could have beens" -- when my heart was breaking and I was missing her father and wondering what in the hell became of the dreams I once had for my family.

Without a doubt, I have not given Olivia the attention she would have received if autism hadn't been in our lives.

So, in that moment, at the back of the auditorium during my daughter's end of the year school show, I turned my back to my bolting, non-verbal autistic son. And I watched my daughter.

She nailed it.

I knew she would.

I inhaled. I exhaled. I quickly stored the memory away in the little part of my brain that still works.

And then I turned to look for her brother.

He hadn't gone far. He was watching me. He was all smiles. It was just a game to him.

I grabbed his hand and brought him back to our seats. I wondered if there was anybody in the crowd who had noticed the child running away ... away from the words and the crowd and the music ... away from what must have seemed like chaos to him. Was there anyone who wondered if he might be one of "those kids" they hear about in the PSAs about autism? Was there anyone who watched me dart after him and questioned my sanity? (I question it myself, at times, and it certainly has been put to the test.)

Probably not. It was a pretty happy crowd, after all.

People enjoying their little miracles ...

My little miracle, my dazzling Olivia, groggily got out of bed as I typed this tonight. Without a word, she walked to the couch and fell back asleep. She is just inches away from me as I type these last words.

Every day, I look at the freckles on her nose, at the dimple in her cheek, at the eyes so clear and beautiful that they surely will some day make a man's heart melt.

If she only knew how amazing I think she is ....

I try to tell her. Every day. And she looks away and smiles, as if the compiments are a little too much for her to process. (I don't take compliments well, either).

I try to tell her because I want to make up for all the times I have turned my back on her in order to look after her brother.
I try to tell her because I worry about her spending her twenties and thirties on a therapist's couch, pouring out her heart about all the dysfunction she witnessed as young girl.
I try to tell her because I hope I can somehow help her turn into a healthy adult, with healthy relationships, and a healthy self-esteem.
I try to tell her because I want to somehow make up for my shortcomings as a mother.

I owe it to her, after all.

Because she has given me more in the past two years than I could ever possibly give to her.

Because it is moments like these ... Mis amigos de Peru presentan: El Baile de la Ranita ... that remind me of my blessings, and of the reasons to hold out for more.

2011-05-13T22:43:00.016-05:00

Autism robbed me of my son.

I have never spoken those words.
But I have heard them.

I recently read a blog post that mentioned the writer's frustration with those words. I wish I could remember which blog it was, but I honestly cannot. There are so many wonderfully written special needs blogs that I can get lost in them for hours if I am not careful. So many of them make me pause to reflect on things that are dear to me, as well as things that are extremely difficult to think about.

And so it was with this particular post ....

Is it wrong for autism-parents to say that the disorder robbed us of our sons and daughters?

I have heard a dear friend of mine say it.

I have heard another dear friend comment on how uncomfortable the words make her feel.

I must admit -- and this is probably going to make me a little unpopular with some folks -- that my first reaction to the post was to wonder if the writer's child was hanging out on that "high functioning" end of the spectrum or if he/she was chillin' with the kiddos closer to my son's place -- you know, the kids whose autism is never, ever in doubt.

Oh boy. There it is.

I am probably going to be shunned by parents who think I just trivialized their worries concerning their children.

I do not mean to. Honestly.

I know that all parents have sincere, agonizing worries when their children struggle with communication and social skills enough to legitimately be placed on the autism spectrum.

But in all honestly, the sentiment that the writer takes issue with -- the idea that autism robbed a parent of a son or daughter -- is much easier to understand when you picture a child who is unable to utter a single word ... a child who is incapable of engaging in any meaningful conversation with anyone ... a child who cannot begin to understand the purpose of play ... a child who struggles with the meaning behind not only words, but even gestures.

I don't ever recall thinking that autism "robbed me of my son." I am a very literal person, and I think the words don't make perfect sense to me because I believe Daniel always has had autism -- from the time he entered the world. And, so, my thinking goes: how could autism rob me of a child when my child has always been autistic -- when autism has always been a part of him, and I have never stopped loving him as a son from the day he was born?

But don't get me wrong.

I do believe autism robs.

And robs and robs and robs.

It definitely robbed my son. It robbed him of so many things that I can't even begin to really think about them -- because to think about them would be to return to days when I was so lost in grief that I almost lost myself.

It robbed me, too, as his mother, and it robbed his dad as a father.

It robbed me as a wife. And it robbed Daniel's dad as a husband.

It robbed Olivia as a sister.

And it robbed Daniel's grandparents.

Autism robbed me of an opportunity to know my son in the way I should have been able to.

And it robs Daniel every day of the ability to show the world just how much is going on inside that mysterious mind in his beautiful head.

So would I say that autism robbed me of my child? No, I would not.

But I take no issue with those who feel that way, only to say that I hope all parents who struggle with autism find a way to laugh each day, to rejoice in "small" accomplishments, and to find their way back to what matters most when they find themselves slipping into despair.

Capturing Lily

2011-04-25T12:02:00.015-05:00

She was under a large chest of drawers in my daughter's bedroom.

Think beady black eyes and whiskers.

Think rodent.

And I was on my belly trying my darnedest to get her out. Broom stick in hand, I gently poked and prodded, sending her scurrying every which way but my direction.

I had to round her up, and she could not be injured in the process.

Because unlike the mouse that our dear cat Lovey dropped in my house several months ago -- which sent me screaming for assistance -- THIS rodent had license to be in my home.

She is the newest member of the family.

She is Lily, the guinea pig.

My daughter thinks she is pretty darn cute, and I must admit that she is. But, damn, was she hard to capture after my daughter allowed her, without my permission, to roam.

The irony was not lost on me. I could not even stay in my home last winter when my neighbor hunted for the mouse that Lovey brought on the premises. I screamed like a crazy person. But, there I was, last night, at times almost eyeball to eyeball with a rodent -- a very quick rodent -- and I was even making kissy noises to entice her into the open.

My daughter wanted so badly to help. She began to wonder if Lily would stay forever under the dresser, only to wither away and starve. (Haven't I mentioned that I sometimes worry about Olivia's anxiety?)

But there wasn't much my daughter could do. And our joint frustration started to build -- although it was, at the same time, pretty amusing.

Little Lily seems to take a poop with every third or fourth breath, and I could just picture the stuff accumulating, pellet by stinky pellet.

Lord, ain't life something?

What really cracked me up about the whole thing was my five-year-old daughter's take on it.

"Mom," she says to me, "Why don't you just call some workers?"

What the ......?

Workers?
Do I look like I have workers????

My house is a mess, my hair is too long, my toenails have a teensy bit of paint on them from the last time I took out the polish two months ago, and laundry is piling up in three different places.

There may be a few parents of kids at her pre-school who have some workers, but I am not among them.

Finally, I decided the only way to get our little friend was to move the dresser. It was heavy, but I pulled the thing part-way out from the wall. I think Lily was so blinded, she didn't know what the hell to do.

And I got her.

A little TLC later and she was back in her cage.
Olivia was finally getting in the bed.

And it was time for some Q&A, Olivia-style.
Mom, how did God make people?

How long has the Earth been here?

How did He make the land and the water and the animals?

Is God in our bodies?

How can God be everywhere?

Sweet goodness, shouldn't it just be enough that I captured the pig????

Sometimes, poop-included, motherhood really is sweet.

2011-04-14T10:35:00.006-05:00

A few weeks ago I watched the movie Catfish. I had not heard about it, and I was intrigued to watch the story unfold, documentary-style -- a story of a woman yearning so intently for something different in her life that she went to unbelievable lengths to escape, if only in her mind.

It is a movie I will not forget, to be sure.

Because I can identify.

OK, so I wouldn't have done what she did --and I don't want to spoil the movie for those who may be hitting up a Redbox soon.

But ..... I know that feeling. That feeling of wanting something more ... needing something more than what makes up your life.

And even just saying that brings on the guilt--because I have many blessings in my life.

But I have been through my share of sadness, too. And I have learned lessons that I wish I had never had reason to learn. Here was the most difficult: as much as it hurts to see your child suffer with a disability, there are things that hurt much worse. And sometimes, you so badly want your life to be different, that it can reach desperate levels, like it did for the woman in that movie.

So, I don't know what others might think of what she did. I certainly don't approve. But I understand what motivated her.

I wish I didn't.

Talk to Me

2011-04-03T21:44:00.008-05:00

A week ago I had a moment when I messed up with my daughter.

It wasn't the first time. It won't be the last.

In my defense, I have had a difficult few years. And at the moment of this particular personal failing, I was confronted with an in-my-face reminder of how much pain I have yet to process.

The words tumbled out of my daughter's mouth. She had no way to know how they would affect me--although I think her words reflected just how many questions she, too, has about what has taken place in her life and the roles that certain people have played.

Talk about stitches ripped from wounds struggling to heal.

I said some things in that moment that were a reflection of my hurt ... and my anger--anger not at my daughter, but anger that is so very real and raw that it can consume me in the moment, if I am not careful, until I can barely focus on anything before me, even my beautiful daughter.

I told her, in no uncertain terms, that the subject of her words was so upsetting to me that I did not want her to mention it again.

Bad, bad, bad Mommy moment.

I recounted the entire situation to a friend who has become so dear to me that words cannot describe her value.

She empathized. She reminded me of the very difficult situation I have been in for a very long time. She told me, basically, to not be so hard on myself, which is something I need to hear from time to time. And she gently reminded me of something I can never forget--that no matter how difficult, no matter how gut-wrenching it might be, I ALWAYS want Olivia to feel comfortable talking to me, about ANYthing.

Pretty damn good point, wouldn't ya say?

So the next day, I did the best I could to gently reintroduce the ugly topic to my daughter. "Hey, Olivia," I said, "You remember when we were sitting in the restaurant the other day and you started telling me about ....."

I tried, even more gently, to explain, in very brief terms, why I get upset when I hear about the topic--but that did NOT mean she shouldn't talk to me about it. Because I am her mom, and I always, always want her to tell me what is on her mind, what she is thinking about, what she is worrying about.

I hoped my words registered. I hoped I had undone a big part of the damage I did the day before.

And guess what? I think I accomplished that goal--because of what she said to me later that night as I put her to bed. THIS time, I did a much better job.

Thank goodness this mothering-gig leaves you some time for improvement.

I decided to write about this because I don't ever want to forget the important lesson my friend helped remind me of. Only one of my two children can talk, after all, and so I have even more reason than most moms to never forget how important it is that my child feels comfortable talking to me.

And I wrote about this because I can think of no better way to say thank you to my friend, who will read this when she checks in with Google Reader tomorrow. I love you, gal. And I owe you so much.

2011-04-02T12:23:00.003-05:00

Today is World Autism Awareness Day.

Perhaps there already is a face that comes to mind when you think of autism -- the face of a family member or friend.

If not, I ask you to think of this one...

And say a prayer.

Brave Like Daniel

2011-03-14T18:38:00.014-05:00

All kids can't be brave like Daniel is.
--Spoken by Olivia, sister to Daniel, March 13, 2011

There are things my daughter sometimes says ....

Words that freeze time for me, for a moment.

And in that moment I am aware of nothing, other than the tremendous love I have for my children, and the reassurance that if anybody was ever sent into my life directly from Heaven, it is my daughter, my amazing Olivia.

I cannot begin to imagine what it is like to be Olivia.

I am an only child, so I can't even appreciate what it means to be a sibling, much less a sibling to a disabled brother. When I consider that Olivia is growing up with an older brother who will always need her help -- a brother who is completely unable to talk to her, cheer for her, listen to her, pretend with her, scheme with her -- I wonder just how deeply autism has affected her.

Is her brother's autism one of the reasons she basks in the attention of her favorite friend at school?

Is it one of the reasons she can so quickly dissolve into tears when things don't go her way?

Is it one of the reasons she gets so frustrated when she doesn't accomplish something in a matter of seconds -- does her brother's disability explain her need to be able to do everything perfectly, and to obtain perfection immediately?

No better way to put it: It is enough to blow my mind.

So I am thankful for the moments, like the one last weekend, when Olivia says something that makes me pause ... and smile ... and refocus on the amazing capacity for love that exists within my daughter.

She was climbing the ropes that connected two park play structures. Her father encouraged her to climb even higher, and there it was:

"All kids can't be brave like Daniel is," she said in response.

And there was her brother, high in the ropes, as high as any child could climb.

Even though he cannot talk to her, even though she knows he is so very different, even though she knows he struggles with so much ....

Olivia sees her brother as brave.

Of course she does.

Because he is.

She could not have a braver brother if she searched the world.

He faces each day with joy and enthusiasm, and the purest love for the people in his life ... even though he cannot talk to us, even though he is diferent, even though he struggles with so much.

I am so thankful I have a daughter who sees it, and who loves her brother so deeply, and who possesses the ability to remind me of the countless reasons I have to be proud of her ... and her brother.

My Autism Mirror

2011-03-14T18:20:00.002-05:00

It is easy to list the things that really suck about autism.

Even parents who have no experience caring for disabled children could guess the types of things I would put at the top of the list -- if they tried, for just a moment, to picture their own children struggling with an illness or disability.

They would wonder what it must be like to worry about the future and to grieve the inability to communicate with my son. They would try to imagine what it must be like to bury dreams and replace those dreams with uncertainties that literally can drive a parent mad.

But here is one of the worst things about autism -- and similar disabilities -- that only the veteran special-needs-parents will "get."

After autism slaps you around and kicks you in the ribs -- by forcing you to deal with the reality of what is "wrong" with your child -- it then does something even more painful.

It puts a mirror in your path.

A great big f'in mirror.

And in that mirror, you see not only the mistakes you make as a parent -- mistakes you are destined to repeat, even as you hate yourself for doing so -- but you also see the demons within yourself.

You see how much you grieve for yourself, as a parent and as an individual, even though it is your child who has really gotten the raw deal in life.

Score one in the selfishness department.

You see how you get so bogged down in the day-to-day of coping that you never manage to do the things you would like to do -- for your disabled child, for your other child, for your other loved ones, for yourself.

Score one in the unorganized, underachieving departments.

You see how much you wish things had been different. You look away from soccer fields and talent shows. You shut out the conversations of parents at events for your "other" child -- where nobody knows what it is like to wish that your son could just be "normal."

Score one in the jealousy and pity-party departments.

You see how sometimes you actually are angry at your child, even though it is the autism -- and not the child -- that drives the anger.

You feel your frustration rising when he stims -- because you wish he'd be doing anything, ANYTHING, else -- as long as it was something normal. (And, yep, I am not even going to put the word in quotes because, let's face it, I love him as he is but still wish he could just be normal, whatever the heck that means.)

You lose your temper when he strikes out at you, even though you know that if the tables were turned, and you were the one completely unable to talk, you would not face the world with one-tenth his energy and joy.

Score one in the bad-parent-who-loses-her-temper-and-does-not-deal-with-her-son's-disability-with-the-kind-of-patience-a-good-mom-would-have department.

The autism mirror never goes away and, man, does it shine a bright light on all your warts.

No matter where you turn, your mirror goes with you.

I sometimes feel like I can hardly function after I look in my mirror. I despise myself for everything I have not done, and for everything I cannot do.

But I know I am not the only one. And even though I cannot always see the parents walking with me step-for-step, they are out there.

A dad whose blog I just discovered tells it like it is:

Unlike the tales that Hollywood likes to tell, there are no saints or sinners when it comes to raising an atypical child. There are people that strap in, buckle up, and get the job done, and there are those that don't. There are no 'Saints' in this house. There have been times when either one of us wanted to strangle him. (Luckily for him it's never both of us at the same time). Handicapped children aren't intrinsically wonderful, beautiful, or even very much fun to be around. They're love-sponges that soak up all the love you can give them. And by that, show us that we have ever so much more love to give than we ever even knew we had. 'Mothers' or 'Fathers' don't always understand, but moms and dads do.

-- The Missing Piece

Amen.

From The Boston Globe and Parade magazine

2011-03-13T18:36:00.002-05:00

If the world were made up only of such people ....

I would not worry so much about my son.

The Whole World in His Arms

Just a Boy

2011-02-28T09:37:00.005-06:00

There are moments when nobody would know.

Not many.

But some.

He is climbing the rope structures at the park. He is confident and secure in his ability to make it to the top.

He is just a boy: scaling the ropes; aiming for the highest bar.

He is taking a seat on one monster of a roller coaster. Grin from ear to ear. Anticipation in his eyes.

He is just a boy: ready to hear the clicks of the coaster as it climbs; ready to plunge and race at speeds so fast I can only count the seconds until the fun is over.

He is in a pool: gliding so effortlessly you would never know he has not had a single lesson.

He is just a boy: strong, sturdy and at peace.

He is eating an ice cream cone. He is riding the carousel. He is hugging me.

He is just a boy.

These moments are glorious. I treasure them. And I wonder what that says about me. I know that I love these moments -- moments when the autism disappears -- because there is still a part of me wishing it weren't so -- wishing my boy was not saddled with this beast of a burden.

There is more to it, of course. There are still moments, even after all of these years, when I cringe. They are the moments when the autism hits full force -- in public -- and I become the one who retreats inward. Because I know that for every person in the world who understands -- people who know that my child is struggling to do his best -- there are many more who are simply ignorant, or at worst, self-righteous and judgmental and ignorant.

Hey people: You know what?

He is just a boy.

It is not that simple. But, yet, it is.

Rick Perry's Bullshit

2011-02-17T19:20:00.001-06:00

As Texans, we always take care of the least among us.

The frail, the young, the elderly on fixed incomes, those in situations of abuse and neglect, people whose needs are greater than the resources at their disposal – they can count on the people of Texas to be there for them.

We will protect them, support them and empower them, but cannot risk the future of millions of taxpayers in the process. We must cut spending to keep our economic engine on track.
Texas Governor Rick Perry, Jan 18 2011

Excuse me, Governor Perry. Please tell me: what did you mean by that big bunch of nothing.

We will protect them .... but

We will support them .... but

We will empower them .... but

I think you had more meaningful words coming out of your mouth when you were whoop-de-dooing in your Aggie yell-leader jumpsuit.

My son is one of those Texans who could use a little help. I am a Texan. His dad is a Texan. We grew up going to Texas public schools and universities.

We pay taxes. Lots of them.

And we have spent -- hold your breath -- in the six figures trying to obtain the best services for our son, who has severe autism and apraxia and a soul as pure as you will ever find on Earth.

What have we gotten from the state of Texas in the way of help?

Ahhh, let me count it all up. Oh, yes, nothing.

He is on two state waiting-lists for services.

One wait-list is for therapeutic services such as speech and occupational therapy, both of which he has needed his entire life. They are crucial to his ability to one day live as independently as possible, as well as his ability to contribute to society. (Yes, I do, indeed, mean contribute to society, as a working citizen, a goal that is attainable, especially if we could get a little help from a government that, unfortunately, seems more interested in instituitonalizing its disabled citizens than in helping them pave the way to independence.)

The other wait-list is for respite services, which my family could have used years ago.

My son has been on the Texas wait-lists for an entire year. I checked in with the "help-line" yesterday and what do you know. He is number 27,936 on one list and number 14,693 on the other. Which means we might get some help from our government about the time I need a nursing home for myself.

Or maybe not even then.

My state's longest-serving governor is serious about the "cut spending" aspect of his inauguration speech. Preliminary budgets for the state of Texas include more than 16 billion dollars in cuts to health and human services spending.

What does that mean for those who, in the Governor's words, are "count(ing) on the people of Texas to be there for them"?

It means that if you are waiting for help, don't hold your breath. And if you have waited it out and, finally, have received a little government assistance, get prepared to lose it.

What's up, Gov?

Aren't you one of those "pro-family" Republicans? I have yet to figure what the heck that label means to you guys, but it sure doesn't jive with anything I consider "pro-family."

My son has a disabilty. He suffers from a neurological disorder recognized by every pediatrician in the world. Yet, we receive not a red cent in assistance from our medical insurer. We live in the the richest nation in the world, and, yet, we receive no assistance from the federal government. And we have yet to receive one bit of help from the state of Texas, even though our Texas roots run deep into the ground.

The one thing you could do to really give families a hand, Governor Perry, would be to speak out on behalf of the families trying so hard to maximize the potential of their special-needs children. We do not want our sons and daughters to go to one of our state's institutions for the disabled, where they will largely be forgotten, if not abused.

We are struggling under the weight of our children's disabilities.

And, wow, are we struggling: struggling to find and pay for the services that will help our children succeed; struggling to give our typical children the attention they deserve when their disabled brothers and sisters require so much; struggling to maintain our own identities separate and apart from the disabilities that rob our kids; struggling to even remember what a marriage felt like before every waking moment was dominated by worries.

It isn't as if Texas residents endure some unworldly tax burden compared to the rest of our nation.

It isn't as if Texas is somehow making up for its failure to provide for its disabled residents with increased funding to other areas of its social welfare network.

It isn't as if Texas is adeuqately serving our children with its anemic funding of public schools.

I know, Governor, that you sailed to victory in your campaigns. I know that my state is filled with enough Bubbas and gun-lovers and fat-cat-good-ole-boys to keep you around for another ten years or more.

I know that your loyalties do not extend to me and my family.

But if you aren't going to take notice of a "pro-family" need not being met in this state, would you at least drop the lip service about Texans whose needs are greater than the resources at their disposal. This Texan knows BS when she hears it. And I know my opinion counts for nothing, but I'd rather you not pretend to care about anything other than the economic engine behind your political career.

Off With the Cast, Into the Chlorinated Water: Hallelujah

2011-02-06T23:22:00.004-06:00

It is off.

The cast is gone, and my boy has two good feet again.

Inhale, exhale.

I am so relieved.

Autism mothers everywhere can testify: there is great fear in facing the unpredictable, in trying to help your children deal with pain when there is a language barrier that transcends words.

When you struggle to hold your nonverbal seven-year-old while he gets a cast on his foot, you don't have time to think about the unfairness of it all. You just do what needs to be done in that moment--so that your child can heal the part of his body that doctors CAN fix.

That's the thing about autism, about severe autism--it teaches you to not think too far beyond the moment.

Your child has broken bones in his foot. Three bones, to be exact. (They told me two when the cast went on; turns out my son actually broke three bones in his foot.) That really sucks--in ways that parents of typical children cannot begin to understand. But what else is new? Everything about my life as a parent is far beyond what parents of "typical" children can understand.

This is just one more mountain.

One more obstacle.

And the white-coats actually know what to do in this scenario. They can fix broken bones.

For that, I am grateful.

Because my boy has his cast off.

And we are back in the pool.

I watched my two children this evening, as they swam and played in the water.

What a great equalizer the pool is for my son.

He cannot tell you what he thinks, what he knows, what he yearns for.

He can't even tell you that his foot hurts like hell.

He can't ask you what is going on, why he is feeling this unusual pain, why his life is not what it should be.

But he can swim to the depths of the pool. He can float like a jelly-fish. He can move through the water with speed and strength and confidence.

And he can laugh at his sister after she pushes him into the pool.

There are images in my life: pictures that carry me through pain I never could have imagined, and still do not know how to adequately deal with.

One such image is my two children as they were this evening: my daughter pushing my son into the pool and my son resurfacing with that beautiful smile on his face.

I watched my daughter giggle and call to her brother. I watched her climb up and down the ladder of the pool--playfully screaming as Daniel swam near to her, trying so hard to engage him in her world.

I watched him smile at her, in a way that he does not smile for many people. In a way that says, "I love you, dear sister, even though I may never verbalize it, even though I may never express it in a way that the typical world will appreciate."

It is amazing, to watch these two children--separated only by two years and two weeks... and a universe of words.

They share the same two parents, the same DNA, the same environment. And, yet, they could not be more different.

Like night and day.

One filled with words, drama, social graces and a desire to please.

The other largely trapped in an existence without words, without social understanding, without a grasp on what the world expects and why it is necessary to try, at least a bit, to conform.

And I am the mother to both of them ....

God help me.

I will take whatever help I can get.

Tonight, I am just happy that they both can swim and jump and splash.

That their bones bend and straighten and move--with no casts to encumber.

I am grateful to see them both laugh, and to smile at each other.

2011-01-28T11:41:00.005-06:00

I reject the Holland poem. I know moms who love it; some of them are my friends.

But not me.

My son is disabled. Profoundly disabled. And I am not happy about it, even though I love him dearly and celebrate the many aspects of his personality that make him a neat kid.

I currently am walking through life at a loss for what to say, which is unusual for me. So I want to note the post from a writer I admire. I identify, even though our children are the victims of different monsters.

http://www.schuylersmonsterblog.com/2011/01/those-stars-is-universe-of-gliding.html

My 25-Cent Take on Prayer

2011-01-18T20:33:00.011-06:00

"That and a quarter will get you nothing."

Sad words.
Spoken by someone I love.
Referring to prayer.

I have mentioned before that my spiritual life is not what it should be.

I rarely attend church, even though I grew up going to Mass with my Catholic mom (and agnostic dad). A big reason I don't attend is because Daniel "cannot." We would receive too many stares, from too many ignorant people. And, in all fairness, he would be a disruption. (Although I think God would say, "So what? He is as much my child as any other." You know, suffer the little children to come onto Me, and all that.)

I also must confess that I am no Biblical scholar. I do, and believe, any number of things that the leadership of the Church would condemn.

But ....

I believe in a higher power. More specifically, I believe in God.

And ....

I would never, ever say that prayer is worthless.

I know many people feel that way. It doesn't make them bad people. Some of the smartest people I know are atheists or agnostics, and they are good, moral people.

But prayer is never meaningless. To even suggest a thing, I think, is insulting-- and, well, ridiculous. Even if the atheists are right, and there is no God, prayer has meaning.

When we pray, we recognize that we are not infallible. We acknowlegde our own limitations.

When we pray for others, we acknowledge our love for them. And, call me crazy, but I believe there is value to positive thoughts, expressed in a focused, sincere way. They sure as heck don't hurt anything.

When we pray, we reject evil. And without a doubt I believe there is plenty of that lurking in this world. All too often it is cleverly disguised--the "helpful" person is really just a shyster with a selfish agenda, hoping to manipulate, and willing to destroy those who stand in the way. I can't help but wonder if people who have turned from prayer with disdain have done so because they have been overtaken by a force of evil.

When we pray we are true to ourselves--our fears, our hopes and our insecurities.

And, perhaps most of all, when we pray, our hearts cannot help but soften.

I have prayed many times for my son, and what I have asked for has changed over the years, as I have reached greater amounts of acceptance with regard to his disability.

I will never understand how God operates. I do not expect to wake up one day and find that my child's limitations miraculously have been removed. I do believe, though, that prayer can only help me be a better mom--and surely the good Lord knows He has not heard a lot from me lately.

So, tonight, as I stop to consider the words I noted above--when I think about how uncomfortable I was with the sentiment--I vow to seek solace in some praying of my own.

I will acknowledge my limitations and ask for greater patience.
I will ask that He one day bring words, in whatever form, to my son. And to Clark, and Rhema, and all the children whose lives are touched by autism and developmental disabilities.
I will ask Him to help my daughter be the kind of sister her brother will need.
I will ask Him to heal my son's broken foot, and my broken heart.
I will ask that He help deliver my loved ones from evil.

And I will go to bed knowing that my prayers have meaning--meaning beyond measure.

My Daughter, My Foundation

2011-01-17T23:09:00.021-06:00

My daughter watched her brother get his cast .

She witnessed it all.

His screams, his pain, his confusion.

She watched me restrain him. She surely noticed how much I struggled to hold him still--how he struck out in fear.

How did she process it all?

How can I know for sure? She is only five-years-old.

But I know that she is incredibly attuned to my feelings. She has been for a very long time.

I know that she must have sensed my desperation and my sadness, as I struggled to keep her brother still.

She was incredibly interested in what was going on, and she watched closely at first.

But, after a while, I think her brother's screams became too much for her, and she crawled under the table and hid.

I wanted to acknowledge her in some way, as I held her brother so tightly that I thought my muscles might spasm. I didn't want her to think that I had forgotten about her.

So I praised her for her patience. I told everyone in the room what a wonderful, helpful sister she was.

And I tried to reach out to her with my voice, even as I clung to her brother with everything I had, and counted down the minutes until the whole ordeal would be over.

"Isn't it amazing, Olivia," I said to her, "how doctors can fix broken bones."

Less than 24 hours later, my daughter says to me:

"Mama, do you know what I want to be when I grow up? I want to be an autism doctor."

I can hardly type the words without crying.

If I wondered what kind of impression Daniel's injury made on Olivia, I knew when I heard her words.

Isn't it amazing how doctors can fix broken bones ........ I want to be an autism doctor .......

I have no idea what my daughter will be when she grows up.

But I know that right here, right now, she is the person who keeps me smiling.

She is my rock, my foundation, my greatest joy.

Broken Voices, Broken Hearts and Broken Toes

2011-01-17T11:46:00.018-06:00

Fractures of the fourth and fifth metatarsals.

The day started with me waking up a grumpy daughter who did not wish to rise. As she she settled down to eat her breakfast, I went to wake my nonverbal seven-year-old son, who had injured his foot the evening before.

Daniel is a monkey. He loves to climb. And even though he is careful, he takes risks. I know it probably sounds ridiculous to make those two comments in the same sentence, but parents with children on the severe end of the spectrum will understand. Let me put it this way: he appreciates that he might fall, but he is a boy who loves to climb.

And, as I mentioned, communication is not his speciality, so he always has preferred to take care of his needs, and especially his wants, himself.

Which explains how he wound up falling from the very high shelf in my closet--the one where I had stored the Halloween trick-or-treat pumpkins. I thought they would be out of sight, out of mind.

I should have known better.

I heard the crash. I heard the screaming.

That was last Thursday evening.

I thought, and hoped, he had an ankle sprain. Two people even looked at it and said as much. OK, so they weren't doctors, but they were guys who probably have had their share of ankle sprains.

But when Daniel woke up on Friday morning and still wouldn't put any weight on his foot, I began to get very scared.

I took Olivia to school and then began a series of phone calls to the doctor's office.

We can't see you until after 3, they told me.

Ah, that is not going to be good enough, I said. I have a nonverbal seven-year-old who might have a broken foot and I have to carry him everywhere. I also have a five-year-old. And, at the moment, I have no help (something I could have said many times over the past few years). I can't wait until the end of the day to start this process. He is in pain. Something needs to happen--now

Go ahead and bring him for an x-ray, they said.

Thank you, I will.

I drove 20 minutes to an unfamiliar hospital, carried my 55-pound child from the parking lot, placed him in chairs at two waiting places, filled out a ton of paperwork, carried him back to radiology, and then--joy-of-joys--restrained him while he got an x-ray of his foot.

Then I rushed out to the car so that I could pick up my daughter from school on time.

The three of us then went to the doctor's office, to await word of the x-ray results.

(Daniel was acting terribly. Somebody could have shot a film of his behavior in that office and played it for audiences around the world. "This is what a child with severe autism looks like," the narrarator might say. It was that bad. Of course, he had a broken foot, to go along with the major behavior problems that have sprung up recently, so what could I possibly have expected?)

Two broken bones.

Shit.

I would gladly accept a dozen broken bones in my own body before wanting Daniel to have one.

Any mother would probably say the same. (Well, a lot would. I have seen a few very selfish mothers, both when working for the juvenile court system and more recently.) I say it with a little more zeal than most moms, though, because Daniel, is Daniel. And everything in his life is so much more complicated than it should be.

But life is life. And bones break.

So, what do we do, I asked.

You take him back to the hospital and go see the orthopedic specialist--immediately.

So, Daniel, Olivia and I drive to the hospital.

More paperwork. More carrying. (Thank goodness I have been lifting weights the past year.) And, then the highlight of my day, I get to restrain my son while two very nice people put a cast on his foot.

It was torture.

Pure, agonizing torture.

I held Daniel in my lap and did my best to pen his good leg and both arms. I had to grip both of his forearms with all my might. Whenever he got a hand free of my grasp, he would claw, hit, pull my hair, you name it. I dodged multiple headbutts, but he landed plenty.

I wondered what must have been going through his mind.

Why does my foot hurt so badly?
What are these people doing to me?
How long is this going to take?
I hate the feeling of this thing on my foot!
It hurts, it hurts, it hurts. How long is it going to hurt?

That was Friday afternoon.

He seems to have figured out that the cast is there to help him. He is motoring around on it quite well.

Indeed, he is climbing.

Four weeks with no swimming and no bath. Did I mention how much Daniel loves water.

Somehow, we will get through it.
But I can say this about life: sometimes when it rains, it really does pour.

Shine a Little Light

2011-01-13T22:31:00.012-06:00

A few weeks ago, I went to Mass for the first time in a long time.

I say "Mass" instead of "church", which is my way of still identifying myself as Catholic, even though I list Planned Parenthood on my Facebook page and can't understand how any Church would restrict 50 percent of the population from its highest ranks (and I think God would be the first to say that the Church wouldn't be in as big a mess as it is in if it had some women among its leadership).

Why did I go?

Well, who really knows why I have done a lot of the things I have done recently.

My life is in shambles, which I suppose is as good a reason as you can have to attend church.

I was in my hometown, and I love the church I attended in my youth. It is such a beautiful church. It reminds me of happy days, and of some sad ones, too, like when my beautiful friend Autumn died--a friend who once sat next to me in the pews.

Being there reminded me of a time when my biggest worry was whether the oh-so-cute-boy from across town was going to be there, or if he had attended the earlier Mass. (You would have wanted to sit next to him, too--I am talking Hollywood-gorgeous.)

Oh, what happened to that girl ... did she ever really exist?

If she had only known what was in store for her, she would have prayed a little harder.

While I sat in my old church, I thought about all that I have experienced since that day, more than thirteen-years-ago, when I walked down the aisle at the age of 21.

What happened to THAT girl, and those dreams? Did they ever really exist?

The priest I knew and loved as a teenager has since left the priesthood--a sad loss for the Church, but a blessing for the woman he married. I was glad to see, though, that the priest who is now there was well-spoken and interesting, even if nobody can hold a candle to Father Larry.

I am ashamed to say that I was not familiar with the scripture that day--because I am not familiar with scripture as a general rule, may God forgive me.

But I can remember what he said about the person who was the subject of the scripture--how he had been given an amazingly important responsibility, one he did not expect, and one he was not certain he could handle.

The priest talked about the unexpected difficulties of life, and how God does not promise anything to us with regard to our days on Earth. He said that life is a lot like driving down a very dark, unfamiliar rode. Your headlights give you just so much help, just so much guidance--but even with the strongest lights, there is only so far you can see in each direction.

Man ...... no shit.

Are my headlights even working?

I am traveling down one very dark road. My son is disabled. So disabled that today, at the age of seven-and-a-half, he hurt himself by falling from a shelf he had no business being on--and he could not even begin to tell me what hurt.

I sat and held him as he cried. I clung to him and wished I could absorb the pain.

I wondered how in the world I could ever have been entrusted with this responsibility.

I never expected it.

I still am uncertain I can handle it.

But I have no choice.

Because I am a mother.

And may God shine a little light my way.

Because I sure as heck need it.

Waterfalls, Blue Skies, and Dreams of the Past

2011-01-11T22:36:00.013-06:00

When my son was small, his father and I liked to take him hiking.

It was one of his favorite things to do.

My son's father would strap a heavy-duty hiking pack to his shoulders. Daniel would ride along his back. And off we would go.

We hiked along mountains all over northern Arkansas. It was something we began when Daniel was just six-months-old.

We hiked all over the Ozarks. It was as if we were the only three people for miles.

And I felt like the luckiest woman in the world.

Those memories are so glorious. So miraculous.

What happened?

I can remember the waterfalls.
I can remember the serenity.
I can remember the amazing blue sky one day when I looked to the heavens and thought ...

"I will never forget this moment. I will never forget how magnificent the sky looks right now. It is the most beautiful shade of blue I have ever seen."

After Olivia was born, we went on a few more hiking trips. She rode on my shoulders. She could never hike for as long as her brother. She loved it, but she would tire after a while and need a nap. Daniel, in comparison, was simply enthralled with his surroundings. If he did tire, he would fall asleep right there--in the hiking pack, on his father's shoulders.

One of our favorite hikes was at Petit Jean State Park. It wasn't as secluded as many of the other trails we hiked, but it was closer to home, and it boasted a magnificent waterfall. We'd start down a steep path that eventually began to wind along a creek. The trail ended at the waterfall. My children loved it.

When I think back, I realize that Daniel was much more mesmerized with the waterfall than was Olivia. She was looking at everything in her surroundings, and she intently would study any other hikers who came along the path. Daniel, on the other hand, was so much more singularly focused.

He always was.

You can see "the autism" when you look back--you can see the signals, the signs, the red-flags--even though it is so unfair to yourself to think about it that way. How many "typical" toddlers would have been mesmerized by the waterfall?

I can tell you: it is so incredibly difficult for any parent to accept that the beautiful child they saw enter the world is anything less than ... perfect.

It seems like a lifetime ago--those days when I would hike alongside Daniel and his father, with Olivia in the Snuggli.

What happened to that family?

The answers are painful. Autism is part of the story. And it is the central part.

But it is not the only part.

There are other influences.

An inability to see, and accept, the problem at the same time.
An inability to grieve at the same time, in a similar way.
And an inability to share, to communicate about, the grief.

There were other factors at play, too.

I have learned a lot during the past year about just how much trust can be taken for granted. And violated.

I also have learned a lot about just how evil people can be--how they can look upon a troubled soul and take advantage, thinking nothing of the pain that they are causing to so many people.

I have learned what it is like to truly feel alone at the end of the day.

But a part of me can still remember ...

what it was like to hike in those mountains with my children...

what it was like to listen to the cascading waters ....

what is was like to look upon that beautiful, perfect blue sky.

When You Get to Pick Your Family

2011-01-09T22:29:00.008-06:00

"Mama, when I am an adult, I am going to live with you," she says to me from the back of the car, as we pull out of the neighborhood on the way to school.

Oh, the joy my girl brings to my life, which is no small accomplishment, given the pain of the past few years.

"Olivia," I tell her, not really sure how best to respond to her tender sentiment, "I would love it if you always live near to me."

"No, Mama," she says, quite forcefully. "Not NEAR you. When I get to be a grown-up, when you get to pick your family, I am going to live WITH you."

When you get to pick your family.

What an amazingly interesting choice of words.

I am frozen. And I wonder:

Are my daughter's words simply her way of trying to get her point across at that particular moment?

Or do they reflect so much more about how she views the world, how she sees family obligation, how she sees the choices that adults have when faced with real responsibility and difficulty?

My daughter has a brother with a severe disability. He cannot talk to her; he cannot listen to her. He cannot share in her imaginary games or her creative schemes. He cannot count down the days to Christmas with her, or pick out a gift for her brithday, or make fun of her glitter eye shadow and pick fingernails.

She knows he is different. She knows her relationship with her brother is far, far different that the relationships her classmates have with their siblings.

And it always will be.

I think my daughter's words reflect an early understanding that we are born into a family of which we have no control. We get the brother God (or circumstance) gives us. We get the parents life gives us. We arrive, we are, and we adapt.
But of course, there is a point when we do get a choice with regard to family.

I may sometimes read too much into my daughter's words. When you have two children, and only one of them can speak, you tend to listen that much more closely to what she says.

So, I may assign too much weight to what my daughter says to me.

But .... I would like to think... that my daughter's words signal that she already is forming an idea of what it means to be a family, and that the image in her head is defined by commitment.

I would like to think that she already understands that people make choices, and that those choices define who we are, and who we will be as family members.

And I would like to think that her words reflect that she really likes her mom, despite my many shortcomings--and that she likes her little family, flawed though we are.

I would like to think that her words, at the dear age of five, suggest something about the adult she will one day be.

2011-01-03T22:55:00.008-06:00

“Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward.”
--- Kurt Vonnegut

The people who really know me, know that I frequently deal with stress through sarcasm, through jokes.

I have managed, during these past two years, to make jokes about things that are not at all funny.

Why do I choose to "cope" with reality in such a way?

I am not sure.

Maybe I am just tired of crying.

I did that long enough.

I cried for my son, for the son I dreamed of, for the life I dreamed of.

I cried, and cried, and cried, until I couldn't even stand myself.

I cried for the dreams that seemed forever gone.

Sometimes, you deal with so much sadness, with so much shit, that the only way you know how to "cope" without tears .... is to joke.

But that doesn't mean my heart isn't hurting.

People disappoint.
Dreams are put on a shelf.
What could have been is replaced by what really is.

And life goes on.

I still cry sometimes. But I really am tired of tears. And so I joke.

It is a coping mechanism.

There could be worse ways, and I have been witness to some of them.

All I know is that I am still here, still breathing, still getting up every morning finding ways to laugh with my children.

Some days I do better than others.

But I am trying to choose laughter over tears.

Sometimes that is a tall order.

But if I can joke, surely I can rise again in the morning...

and find just enough peace to get through the day.

2011-01-01T00:14:00.003-06:00

What child would DARE steal from Santa???

What child would DARE steal from the giver-of-gifts, the keeper-of-lists?

What child would DARE think she could outsmart the Ole St. Nick and all of his elves?

MY DAUGHTER.

We didn't have cookies, so we left cupcakes.

And apples for the reindeer.

My daughter put each cupcake on the special plate that we left on the table. She arranged the apples just as she saw fit.

And low and behold ....

when nobody was looking, and she was supposed to be asleep, she sneaked over to that plate ...

And ate all the frosting off of those cupcakes!!!!

As if Santa wouldn't think he was getting robbed.

As if he wouldn't wonder who stole his frosting.

Sweet Lord.

If she can steal from Santa at the age of five, what in the world am I in for as her mother?

Happy New Year, everyone.

2010-12-25T19:21:00.007-06:00

I started this blog because I needed an outlet.

My husband of 11 plus years had simply left.

And nothing about my world seemed safe or happy.

Except, of course, my daughter--who always, even when she fills my days with the drama of a diva, is my life's greatest joy.

I started this blog because my son, who was then six, could not talk. At all. And his disabilities extend from there. It is not as if he is a "normal" child who "just" can't talk--as if that wouldn't be painful enough. He is profoundly disabled in his ability to live, to communicate, to learn.

I started this blog because I was lonely.

I started this blog because I was sad.

I started this blog, too, because I was angry.

Incredibly, royally pissed.

At the person who was supposed to be here helping me feel safe and happy--and, most of all, loved.

At the one person who best understood my anguish as a parent.

How sad that we did not come together in our grief for our beautiful son.

I know the story is way too common among families whose children suffer. You would think parents would come together. But, so often, they don't.

You don't want to talk about your pain because to put words to the fear is to acknowledge all kinds of dark thoughts that you simply can't bear to recognize as your own.

You don't want to talk about your pain because you want to be strong for your family.

You don't want to talk about your pain because to talk is to actually deal with something that is way more than any parent should have to deal with.

Or you do verbalize your pain and the other person can't bear to listen because to listen feels like you are being sucked back into the dark thoughts you are trying to overcome.

You can't bear to listen because to listen is to take on additional grief, and your own grief is drowning you.

You can't bear to listen because to listen is to actually deal with something that is way more than any parent should have to deal with.

You go through every day suffering, without finding comfort from the one person who best understands, unless you take amazing means to protect and cherish your marriage.

I knew things were slipping away in my own marriage for some time. But, still, we had experienced so many happy years. We had two children. Surely we would find a way to make it, .... right?

And, so, when I found myself as the only adult in my home for three-plus months, I started this blog, in part, because I was angry.

Some of my early blog posts were so filled with anger that it practically jumped out from the screen.

I wanted people to know what happened to me and to my children.

But, most of all, I started this blog because I was HEARTBROKEN.

I still am, and I still am angry, too.

There are some answers, though, to the many confusing, agonizing questions that I had the past two years.

They make things clearer, which I suppose helps, in a way.

But I still am struggling.

I don't know which is worse--to have a troubled heart ot a troubled mind.

But I know from my own experience and from witnessing the person I have loved most in the world (after my children), that an injured heart can really damage the mind .....

Sometimes the damages are simply beyond measure.

Throw in evil influences--and I do mean evil, selfish, destructive, calculating influences--and an injured heart and mind can collapse, sending pain radiating in all directions, to every person in its path.

The heart barely beats, and the mind cannot tell what is genuine from what is actually a wolf in sheep's clothing--attacking the brain, piece by piece.

How do you heal a troubled heart and a troubled mind?

It is hard enough to heal your own; I am still working on that.

And why, after someone has caused you the most grief you have ever known, and continues to do so, do you still want to help them heal theirs?

...And so this is Christmas, 2010.

Pray for me.

2010-12-22T21:58:00.012-06:00

My daughter has been signaling that she wants, or needs, to talk about her brother.

And I struggle to best answer her questions.

I can't even begin to know what it must be like to see Daniel through a sister's eyes.

Olivia didn't come into this world with any preconceived notion of what it would be like to have a brother. (So unlike me, so unlike her dad--we both had all these dreams of what it would be like to have a son. Dreams that will never come to be .... at least not in the way we once envisioned--the way idealistic, hopeful, excited new parents envision. And I know those words will bring on some indignation from the "embrace-the spectrum" crowd. But I wanted my son to be able to talk to me, and I won't apologize for that.)

It was a while before Olivia realized that her brother was different.

I clung to those days like any young mother would, with the hope that maybe, just maybe, my first-born would start to make enough progress that his sister would never have to be his keeper.

I remember the little girl who sat in the high-chair and watched her brother's every move, fascinated by this little person who was so much closer in size to her than anyone else she knew.

I remember how her eyes lit up at the sight of him when we picked him up from school, how she would stick close to him whenever she found herself in the company of unfamiliar people, how she chased him through the house screaming "Dan-ya" and giggling with delight.

I remember how, in the very early days, Olivia's eyes reflected an adoration for a brother who could do things, and who was experiencing things, that she was not yet capable of doing or experiencing.

Those days are gone.

Because Olivia has far surpassed her brother, developmentally, in every possible way.

I remember, too, when Olivia said her first word. She was ten-months-old.

Daniel was two-years-and-ten-months-old, and he showed no signs of ever being able to say a word.

It was such a moment of joy.

And a moment of overwhelming grief.

Because not only did Olivia say her first word--"duck"--but she showed me just how far she had surpassed her brother in less than a year of life.

You see, she heard one of us--I can't remember if it was me or her father--ask about a toy duck--one that her brother liked.

"Where is that duck--the one that quacks when you squeeze it."

And off she went--my ten-month-old, already walking by herself.

"Uck??? Uck???" she said. And she walked into the kitchen, picked the toy off the chair, and walked back to her father.

"Uck," she said again, as if to say, "Well, here it is, Daddy. Glad to be of service."

Oh. My. God.

I didn't know wether to shout:

My daughter is a genius!!!

Or.....

My son is so disabled!!!!!

Or both.

A part of me rejoiced. At least this child was going to be standing on the outside of this autism-spectrum-bully that attacks innocent children and robs them of so much. But, oh no, oh no, oh no, what does this mean for my son? Not only can he not say a word, but he is almost three-years-old, and he can't even follow such a simple conversation!!!!

I can picture myself in that moment as if it just happened.

I can picture every single member of my family.

It is as if someone took a picture, framed it, and put in a caption:

This is the moment when you finally realized, Leah--even if you didn't want to say it aloud--that life would never be the same.

Olivia knows today that her brother is different. She knows he is disabled. And I think she even knows that he is always going to need a tremendous amount of assistance.

Sometimes she handles it with amazing grace.

Sometimes she is royally pissed.

I can say the same about myself.

Tonight, before she drifted to sleep, we talked about how she and Daniel would probably be at the same school campus next fall. (I say "probably" because you never know for certain what will happen with Daniel. As a parent of a child with a severe disability, you spend so much time wanting to do the "right" thing, but never really knowing what that thing is.)

She mentioned some of the other kids she knows who will be there, too.

She mentioned a beautiful little boy--Ethan--a typically-developing-kid but an amazingly-extraordinary-child--who took a special interest in Daniel when they both attended an inclusve preschool.

"Ethan is Daniel's friend," Olivia said.

Hmmmm. Well, yes, to the extent Daniel has friends, Ethan is the best. But it is so much more complicated.

And here is the rest of the conversation:

I said to Olivia. "Ethan is very special to Daniel."

"But have you ever imagined how hard it must be for Daniel to make friends? Because talking is such an important part of friendship. And he can't talk to other kids, so it makes it almost impossible for him to make friends. Can you imagine how hard it must be for him to not be able to talk to other people, even though he must want to make friends just as much as we do?"

Olivia looks into my eyes:

"No, Mommy, I can't imagine that. I really can't."

She pauses, and she looks away.

"My imagination must be out of energy."

Oh, dear girl, I know exactly what you mean. But, I know you are trying--in ways most children, and even most adults--can't understand. You are trying to understand what life must be like for Daniel.

And I love you for it.

Because one of life's most difficult lessons is that there always will be people who will never stop and think about what life must be like for others, even when they ought to know better.

If I can do anything for my darling daughter, I hope I teach her to pause before judging, to look upon others with compassion, and to always consider the pain that must lie beneath the most difficult of circumstances.

It is something Daniel continues to teach me, and I am trying my best to learn.

2010-12-18T23:38:00.007-06:00

Mama, do you ever wish God didn't make Daniel like this?

And there it is:

The direct, hit-me-upside-the-head question from my five-year-old daughter, sister to Daniel, observer of all.

I wasn't ready for it.

But what have I been ready for in this incredibly complicated, deeply painful, beautiful life of mine.

I had been muttering to myself just before she asked.

Daniel had stopped up the sink with something. I still am not sure with what -- some type of cardboard or paper most likely, because I was able to unclog the drain by simply pushing down a knife and wiggling it around.

(You see, one of Daniel's obsessions is water. I took out the drain plugs some time ago, but he still finds ways to clog drains and fill up sinks. He likes to pour things into sinks and bathtubs, too. Shampoo, soap, laundry detergent, lotion -- I have lost a small fortune in substances, quite literally, going down the drain. Anybody out there want to send me a present? I would gladly take a years supply of shampoo to replace what Daniel has poured down the drain. I get the cheap stuff -- I am a Suave girl all the way down to the white hairs starting to sprout off the top of my head.)

Anyway, back to the story. I was muttering to myself as I went about unclogging the drain. "Daniel, why do you do this to me," I said, even though, as annoyed as I was, I also was glad that he at least turned off the water before it started pouring out of the sink and onto the floor.

And there was Olivia, watching me the entire time.

Then came her question.

Oh, sweet Lord.

I inhaled. I exhaled. And who knows how many thoughts went through my head.

First of all, I don't think God "makes" anybody any particular way. We just arrive. We just are. It just is.

But am I upset that Daniel has autism?

Hell, yes.

Am I frustrated, each and every day, that he can't talk to me?

Without a doubt.

And as he gets bigger and bigger, and his frustration seems to grow at his inability to speak, my fears expand.

I can't think too much about the future, or I will lose what little sanity I have left.

This is not how I pictured motherhood.

This is not how I pictured life.

And if I am this frustrated when my child is just seven, how am I going to make it?

All these thoughts are swirling at rapid speed through my head as I look at my daughter, whose thoughts about her brother and about what it means to love somebody with a disability will be forever influenced by me.

And so I tell her:

Olivia, I wish Daniel could talk to me. And I wish he could talk to you. I really wish he could tell us what is going on in his mind. But I love him, just the way he is. Just like I love you, exactly the way you are.

And I went back to unclogging the drain.

It is the best I can do in the moment.

It will have to do.

2010-12-14T22:09:00.013-06:00

Sometimes I can't find any words. Or maybe I am too afraid to put words to the thoughts swirling in my head.

Sometimes it is just too damn hard.

So I will share the words of another mother and blogger who is dear to me, even though we never have met.

I love the post I have shared below for so many reasons. I love how my friend manages to look through sadness and worry and fear to find all the ways her daughter teaches her.

And I love how my friend manages to put words to so many of my innermost thoughts.

I can only begin to imagine what it must be like for my friend to see her child suffer so much. I would never want her to think I was comparing our situations. But I do know something about the feeling she describes -- the feeling that, as a mother, I have to do something to let my child know I am there -- even when I have no idea what that something ought to be.

I, too, sometimes find myself singing in a dark room, in the hope that my son's tears will stop.

I, too, sometimes think about how difficult it is to love someone when you feel as if that person has rejected you.

It is the most heart-wrenching feeling I have ever known.

I want to share my friend's words because she amazes me...

and because she teaches me.

http://rhemashope.wordpress.com/2010/12/13/a-silent-night/

2010-12-02T16:54:00.010-06:00

One of my daughter's playmates -- the son of a woman who is both a neighbor and friend -- was in my home a few days ago, and as is typical with this little boy, he was taking orders from my five-year-old girl with such good humor that I thought of trying to arrange a marriage.

He has been in my home many times before, and so he has seen my son Daniel and is very familiar with his differences. But he had never asked me about it, until this particular day.

I saw him watching Daniel and then listened, as he struggled to phrase the question forming in his head.

"Leah," he says to me, "Why does Daniel not know anything."

Hmmm .... How interesting it is to hear the thoughts of young children. How difficult it is for them to ask the questions about the things, and people, they find so mysterious.

"Well, honey," I tell him, "Daniel actually knows lots of things. He just can't talk to you about them."

My daughter then joins in.

"That is right," she says. "He has something called autism. And some people with autism can't talk, even when they are adults."

"OK," says our friend. "But why?"

Yes, WHY?

My daughter comes to my rescue.

"Well," she says, "That is just the way God made them."

I am not sure that answer really adds any clarity to the issue, because my adult mind still wants to scream, "WHY???" But .... it seemed to work for our little friend, who said simply, "OK."

I felt compelled to add something -- who knows why, he no longer seemed worried about it. But how will the world ever begin to truly accept people with disabilities like my son's if the mothers of these children don't try, at least on occasion, to increase awareness.

And so our little friend, my daughter and I, had the following conversation:

"You know how some people can't see? And some people can't hear? And some people can't walk?

"Yes," says our little friend, "Really old people."

HAH!!!!! I couldn't keep a straight face, but I soldiered on.

"Yes, sometimes really old people have trouble seeing, or hearing, or walking. But so do lots of other people, of all ages. Even kids. There are some kids in this world who can't see or hear or walk."

"Yeah," says Olivia. "That's why someone uses a wheelchair, because they can't walk."

"And what I think," I tell my little friend, with the knowledge that his family has a much more faithful church attendance record that I do, "is that God really, really hopes that when kids like you and Olivia, and when adults like me, see people like Daniel, who can't talk, or other people who can't see or hear or walk, that we notice them, and go out of our way to be good friends to them."

"You know, Daniel likes a lot of the very same things you do," I tell him. "And he does know lots of things. He can push the button to start his favorite video. And he can swim really well."

"Can he float?" our little friend asks.

"Yes, he can -- very well. And he can jump off the diving board. And he can swim to the bottom of the deep end to get diving sticks. And not only does he ride all of the rides at Six Flags -- even the big,scary rollercoasters, but he knows where all of his favorite rides are."

"Wow," says this darling five-year-old boy with the spiky blond hair and soulful eyes, "Daniel really does know a lot of stuff."

OH, GOD, HOW PRECIOUS IS THIS CHILD.

Maybe his parents really would go for an arranged marriage in, say, 25 years.

What It's Like

2010-12-01T09:54:00.012-06:00

We've all seen the man at the liquor store beggin' for your change
The hair on his face is dirty, dreadlocked and full of mange
He ask the man for what he could spare with shame in his eyes
Get a job you fuckin' slob's all he replied

God forbid you ever had to walk a mile in his shoes
Cause then you really might know what it's like to sing the blues
Everlast, What It's Like

I am a college educated woman with an advanced degree.
I was self-assured and confident when I walked down the aisle of my beautiful hometown church to be married.
I worked in a professional field for three years before I gave birth to my first child.
I didn't touch liquor when I was pregnant. I have never used illegal drugs, not even pot. Never touched a cigarette. I took my vitamins. I was the ideal expectant mom.

And, six years ago ....
I found myself wondering if my son had autism and the child waiting in my womb had a birth defect because I was a bad person.
I found myself thinking that I must have been an incredibly bad person and maybe I didn't deserve to be a parent ....

Five years ago ....
I found myself caring for an infant who filled me with joy.
I found myself trying to be optimistic about the son who filled me with worry, even as he lit up my days every time he wrapped his chubby arms around my neck.
And I found myself slowly giving in to the exhaustion, lack of sleep, and fear ...

Four years ago ....
I had received the official diagnosis.
I heard the experts tell me that I MUST keep him as engaged as possible, as much as possible, every day, all the time.
I thought that my son's only chance was for me to keep his brain working, to stop the stims, to make every moment of his day "meaningful."
I hated the guilt; I hated the feeling that I could never do enough.
I started getting bitten by my son, who didn't even have a single word to tell me about his own anxiety.
And I started wondering if maybe, not only did I not deserve to be a parent, but maybe I would have been better off never having been born.
The thoughts scared the crap out of me, and so I told a doctor. And just having told someone, and taking an anti-depressant -- something I had never before considered -- seemed to help.

But ...

Three years ago....
I found myself in a new city with my two young children, missing my husband terribly, but hoping my family's sacrifice would make a big change in my son's life.
I felt incredible guilt that I was never doing enough for either of my children, that neither my son nor my daughter was getting close to what they deserved.
I felt pulled in a million different directions.
I was so very lonely.
And scared.

Two years ago ....
I felt everything in my life starting to fall apart.
I just wanted my family to finally all be together.
And tell each other we loved each other.
And laugh ...

A year ago ...
I was at one of the worst points of my life.
I had dropped to my knees, only to see a back and a closing door.
I cried so much I thought my eyes would permanently swell.
I screamed in frustration.
I saw even more people turn their backs on me, blame me, ignore me.
I wanted to pull the covers over my head every morning, but I had to get up. I had to get kids to school. And I'd be damned if I was going to stop taking them to parks, or McDonalds, or Six Flags.
But I was on automatic pilot.

And in the past several months...
I have gotten answers to questions I never thought I would have to ask.
I have dealt with pain I did not deserve.
I had it rubbed in my face.
I have come face to face with vicousness in human form, and walked away.
And I have found myself face first in the ground, sobbing, more than once.

I have the same old worries and a fresh set of new ones.

I knew this kid named Max
He used to get fat stacks out on the corner with drugs
He liked to hang out late at night
Liked to get shit faced
And keep pace with thugs
Until late one night there was a big gun fight
Max lost his head
He pulled out his chrome .45
Talked some shit
And wound up dead
Now his wife and his kids are caught in the midst of all of his pain
You know it crumbles that way
At least that's what they say when you play the game
God forbid you ever had to wake up to hear the news
'Cause then you really might know what it's like to have to lose
Everlast, What It's Like

I have learned a few things in this life.

I can mess up bigtime with my children, and even though I feel horrible about it, I most certainly will do it again.

I still can find reasons to laugh every day, and be thankful every day, even as I never forget the sorrows of the past six years. Because that is a choice, and it is what I have chosen. The reasons really are there -- I choose not to overlook them.

And nobody ever knows what it is like to walk in someone else's shoes.

I've seen a rich man beg
I've seen a good man sin
I've seen a tough man cry
I've seen a loser win
And a sad man grin
I heard an honest man lie
I've seen the good side of bad
And the down side of up
And everything between
I licked the silver spoon
Drank from the golden cup
Smoked the finest green
I stroked the baddest dimes at least a couple of times
Before I broke their heart
You know where it ends
Yo, it usually depends on where you start
Everlast, What It's Like

I know I am not done learning.
I hope the lessons waiting for me tell me a lot about how much people, myself included, can change. For the better.

Why I Run

2010-11-22T21:45:00.014-06:00

I could say that the past two years of my life have been a beatdown.

And I wouldn't be exaggerating.

My trust, my hope, my heart ....

have taken a beating.

How do you cope with life when everything is not how it should be?

When there is no foundation beneath your feet.

And two little children wake up every morning expecting to be loved, and cared for and comforted.

It ain't easy.

You learn a lot of lessons.

Many of which you would have been better off never needing to know.

But life ain't easy.

So you either cope, or you fail.

I don't know how other people do it--people who have found themselves taking care of children, much less a child with special needs, on their own.

I never expected to be in the position I found myself in last year, and I still sometimes wonder how it happened.

I also still struggle with how to deal with the challenges placed before me. But I do know that one of the biggest reasons I haven't jumped off a cliff is because ....

I ran.

And ran and ran and ran.

What do you know?

This simple act of taking one step after another, pushing myself against my previous time, forcing myself to go one extra mile, telling myself that if my son could face the world with all of his challenges, then I could surely keep my feet shuffling along the pavement ....

It saved me.

I was never an athlete in my younger days.

I dodged balls thrown in my direction.

I would have liked to skip junior high PE in its entirety.

I always felt like I couldn't do anything even remotely athletic. I didn't even want other kids to see me run, because I thought I looked so incredibly awkward.

So what a surprise ...

I am running a 10K on Thanksgiving morning.

And I am so excited.

I have completed one half-marathon and three 5Ks in the past year.

And my times were nothing to sneeze at.

I can do this. I can actually run.

I love what running has done for me.

I love the tension that flows through my body when I wait behind the starting line.

I love the sense of accomplishment when I cross the finish line.

I love the mental challenge that comes with each race, the feeling that nothing can stop me but myself, that nothing can stand in my way as long as I decide to keep moving my feet.

Nothing .... can ..... stop ..... me.

It is a glorious feeling.

It makes me strong.

And I can use all the strength I can get.

AMEN

2010-11-18T21:42:00.002-06:00

http://www.schuylersmonsterblog.com/2010/11/wrong.html

2010-11-18T21:41:00.004-06:00

Oh, mirror in the sky,
What is love?
Can the child within my heart rise above?
Can I sail thru the changing ocean tides?
Can I handle the seasons of my life?

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Children get older
And I'm getting older, too
-- Stevie Nicks, Landslide

Sometimes you don't have any choice but to change.
Because the world as you know it disappears ....
What you envisioned as your life is no more.

And, yet, your responsibilities remain the same.
Indeed, they expand.

You wonder if you can do it.
But you have no choice...

And you change.

In ways big and small.

Sometimes you cry.
You mourn the loss of everything you believed to be real.
And the sobs pour through you.

In ways big and small.

Eventually, you start to recognize things that will keep your from disappearing.
You accept them.
You embrace them.

But you still worry, and you still mourn.

In ways big and small.

Joyful Curls

2010-11-17T00:38:00.014-06:00

My daughter wants her hair curled.

It is not national news.

Reporters aren't beating down my door for a sound-bite.

But it is one stinkin' big deal to me.

My girl, my don't-wash-or-brush-or-fix-my-hair-daughter, WANTS HER HAIR CURLED.

What happened?

She climbed into her car-seat Monday after school and started talking about her role in the school Christmas pageant next month.

And she said the words that nearly caused me to drive off the road:

Mommy, will you curl my hair for the Christmas show?

Ah, heck yes!!!!!

The next day was a repeat performance.

Mommy, will you curl my hair for the Christmas show?

Will you curl it when we get home?

I am not sure what brought all of this on.

But I found that rarely-used curling iron and curled her hair.

AND THEN SHE ASKED ME TO PAINT HER FINGER NAILS.

I am loving this.

And I ain't even THAT girly of a girl.

Olivia, thank you, thank you, thank you.

For these moments when I can just be a mother paiting her girl's finger-nails.

I will curl your hair every day if you want me to.

And I will inwardly cringe some day when you decide you are old enough to do it yourself.

Thank you, dear daughter, for these moments of pure joy.

2010-11-16T23:17:00.003-06:00

I would do just about anything to "fix" my son.
Even though I love him just the way he is.

He is becoming more and more frustrated at his inability to effectively communicate, as his behavior clearly indicates.

It is frustrating for me, too.

But there are things that are even more frustrating in my life.

Yep, I could tell you about things that are even more frustrating than a seven-year-old, non-verbal son who requires constant attention, who likes to push my buttons and who runs from me in public parks.

I have a list, actually, and it is fairly impressive--if by "impressive" you mean difficult enough to put me in an asylum.

There are no answers to my problems these days.

No way to know what is going to happen.

We can all say that, I suppose.

I THINK I have accepted that I am only ONE person, that there is only so much I can do.

I tell myself that I have, in fact, accepted that I can't "fix" anyone. I haven't even done such a good job of "fixing" myself, although I am trying.

I am running.
I am dancing.
I am writing.

But have I fully accepted that there is only so much I can do?

No, I haven't.

Not yet.

Seeking an Expert

2010-11-14T01:44:00.014-06:00

Is there really an "expert" on autism.

I am skeptical.

How does anyone explain the mysterious? How can anyone look into the minds of these beautiful children and know ....

why they want to do the things they do?

why they NEED to do the things they do?

Why does my son feel the need to touch the world like he does?

Why does he put his hand over his ears at a football game while simultaneously smiling at the sound of the cheering crowd? He is not distressed. But something makes him want to tune out some of the sound.

Why does he squint his eyes when overwhelmed or nervous?

Why is he so fascinated by the repetitive motion of the little things? Why does he need to drop to the ground and watch the mulch drop from his fingertips when he could be climbing the playground equipment?

Why does he look away from me when he must know how desperately I want him to look ... at .... me.

Why? Why? Why?

Why does he open up his mouth and make a sound so obviously indicating a desire to reach me, to tell me ....

something.

Why can't he put his lips together and produce the sounds he so desperately wants to say?

I can sit here night after night, and type away at this computer if I want to.

I can type for hours, well after the Cheezits are gone, and the possum who eats all the cat food has come and gone from my garage.

I can talk for hours to any friend kind enough to listen.

But my son can't say a blasted thing.

And nobody can tell me why.

Is there an expert on autism?

Well, there are plenty of people who can describe the symptoms. There are people who can diagnose your child while sending you on your way with all the bedside manner of a sloth.

But there is no expert here in my living room. There was no expert telling me how to keep my family together. There was no expert telling me how to maintain my sanity while processing all of this confusion and hurt.

Maybe some day ....

the experts actually will know something.

One Hour at a Time

2010-11-14T00:16:00.010-06:00

So God just help me out while I fight through this grievin’ process
Tryna process this loss is makin’ me nauseous
But this depression ain’t takin me hostage
I’ve been patiently watchin’ this game, pacin’ these hallways
You had faith in me always-- Eminem, You're Never Over

I have had some really dark days due to this disorder known as autism.

They began to hit me the hardest just before my son turned three.

My shoulders were the best outward illustration of the pain I was feeling on the inside.

I have never been tattooed, but back in the day, my shoulders were like a rainbow of colors: black, blue and purple.

They were my son's favorite biting target.
And they showed it.
I could cover up the bruises on my shoulders with clothes. People rarely saw them. And I tried, too, to cover up the immense feelings of sadness I felt on the inside. But that wasn't as easy ...

Eventually, I began to feel it -- the overwhelming sense that something was going to give.

I was starting to lose my mind, and I knew it.

I knew it because I began to think things that were completely irrational.

I began to wonder if perhaps God had wanted me to never parent.

I began to wonder if my son was challenged because I was a bad person.

I began to wonder if things were so hopeless that I would be better off just .... giving .... up.

Thank God, or good fortune, or the moral direction I received from my parents, or all of the above, but ..... somehow, I maintained just enough sanity to question the rationality of my thoughts.

And I started taking steps, baby steps though they were, to reverse my thoughts.

It was a long process.
And it isn't as if you are ever just done. When you have a child with such a severe disability that he most likely will always need your help -- just to get by -- well, you can't ever live like a "typical" person. Your mental health has to take on a priority the likes of which many people never will be able to understand. You have to remind yourself to be calm, to live one day -- if not one hour -- at a time. And you have to come to realize that happiness is, to a very large extent, a choice.

It is a choice that requires work.

I constantly remind myself of all the things in this life that make me happy.

If it weren't for my son's disability, I would not take nearly as much time to reflect on these little joys.

Don't get me wrong--I would much rather my son go through life without obstacles. But I know that I would not appreciate my daughter's remarkable gifts as much as I do, if I did not know firsthand what a miracle they are. I would not appreciate the amazing friendship I have found in one of the most beautiful people to walk this Earth, if I didn't realize just how much I need it.

I still have my dark moments.
They have been much darker than I ever thought they would be because I suffered a loss that, to me, was even greater than the loss of my dreams for my son.

Talk about starting over....

But the one thing I know about life is that it doesn't change simply because you question your ability to handle it.

And when there are two children depending on you, you simply cannot give up.

Accepting the Unimaginable

2010-11-10T23:08:00.014-06:00

Accepting autism.

What does it mean?

My son turned seven in August.

I first started worrying about autism when he was just one-year-old.

So I have been confronting autism for well over six years.

But have I truly accepted autism?

In some ways I have.

I know it is here.

It is here in my life every day.

Because my son has autism.

Put it on a tee-shirt. I will wear it.

Look at us while I chase him through a department store.

Gawk, if you are so ignorant and so inclined, while he stims with a plastic fork in Chic-fil-A.

This is our life. This is my family. This is what autism looks like.

If you don't like it, I really don't give a crap.

I know there is nothing I did to cause my son's autism.

THAT, in itself, must be a part of acceptance.

Because there was a time in my life when I wondered if I was to blame for my son's obstacles.

I also know there isn't anything I can do to change my son's autism.

That, too, must be a part of acceptance.

But I still have a responsibility to help him achieve what he is capable of achieving... whatever that is.

And THAT is probably one of the most difficult aspects of accepting, and dealing with, autism.

How do I best help my child?

And how do I maintain a sense of self?

HOW can I balance the roles of (1) mother of a seven-year-old boy, (2) caretaker to this child who needs constant care, (3) teacher to this child who needs as much teaching as he can get during the course of each day, and (4) mother to the "other" child -- the incredibly inquisitive, five-year-old daughter who so frequently stands on the side-lines while her brother gets the majority of my attention????

Wasn't I once someone else???? Oh, yes, I once was a wife. I once was a young woman full of love and dreams. I once was a girl who had no idea what life had in store. I even went to college; I even had an advanced degree. I thought I was going to BE SOMEBODY.....

Yes, there was once a time in my life when I had an identity that had NOTHING to do with autism.

Times change.

What does it mean to accept autism?

Hell if I know.

Maybe someday I will figure it out.

Here's hoping .....

Your Baby Most Likely has a Lymphatic Malformation: Say What???

2010-11-08T09:59:00.024-06:00

I have mentioned before that my second pregnancy was, to put it mildly, worrisome.

I discovered I was pregnant with my darling daughter just about the exact moment I started slipping into a dark hole of worry about my son.

Autism was starting to dominate my thoughts.

And then ... I find myself sitting in a boatload of worries for a baby growing inside me.

It was May 2005. I was getting an ultrasound, my husband at my side, when my wonderful OB says:

Um, I don't mean to stress you guys out, but there is something on the baby's face or neck.

Um, WHAT??????

She wanted us to go to a "fetal development specialist."

Shit.

My head was spinning as I listened to her. I tried to focus on the "positive." Whatever this "thing" was didn't appear to be very big. It might be something they could "take care of" right after she was born. Something they could "drain."

But when we left the appointment, I saw the fear in my husband's eyes.

He is a physician.

He was panicked.

Shit, shit, shit.

We had to wait for our appointment with the fetal development specialist (AKA a "high risk" OB).

We both spent hours on the computer, pouring over articles about facial deformities.

Unfortunately, we spent those hours alone. He was on the computer by himself. I was on the computer by myself.

We never really came together in our fears.

We were walking through a no-man's land of absolute dread.

And, as we walked, we looked at our beautiful son and wondered:

Why in the heck is he not developing like he should?
Why does he have all of these weird little quirks and behaviors?
Why doesn't he wave?
Why doesn't he point?
Why doesn't he imitate?
Why doesn't he TALK?

And, again, for the most part, we worried, and anguished, alone.

We had multiple appointments with two different high-risk OBs. It was like a nightmare.

The high-risk OB who would eventually deliver our daughter told us that he believed she had a lymphatic malformation on the lower part of the left side of her face. Both my husband and I already had decided, based on all of our reading, that a lymphatic malformation was the most likely answer, so we wern't surprised by the news.

As explained on the Children's Hospital of Boston website:

LM is a sponge-like collection of abnormal channels and cystic spaces that contain clear fluid. ... Lymphatic channels sprout from veins in early embryonic life. Protein-rich fluid normally filters out of blood-filled capillaries into tissues throughout the body. The lymphatic system serves to transport this fluid back into the venous system. ... Although the precise cause is unknown, LMs are believed to be caused by an error in the formation of these tiny, thin-walled sacs and tubes in the embryonic period. No known food, medication, or activity during pregnancy can cause an LM.

An error in the formation of .....
Bring on the guilt.
Bring on the depression.
Are you trying to tell me something God?
Did you never want me to have children in the first place?
I got to the point where I was so sure bad news was waiting around every corner that I didn't even want to go to the mailbox.

OK, so back to reality ... The definition noted above is a fancy way of saying that sometimes lymphatic channels don't form correctly, and the result is like a traffic jam of fluid. LMs can occur anywhere in the body, but they frequently occur in the face and neck region. They can be big, medium, or small--sometimes so tiny that you don't even notice, sometimes so large that they wrap around a child's entire face. They sometimes block a baby's airway and cause profound disfigurement. If large enough, LMs can basically suffocate the baby in utero or be deadly upon birth.

As I waited for my baby to be born, I spent hours and hours reading about LMs. I joined an on-line LM support group, and while my son was at preschool--three mornings each week--I read the postings of parents whose children were severely affected by lymphatic malformations.

I went to see the doctor once every two weeks and had an ultrasound at every appointment. He wanted to see if the LM was growing. He was cautious, but encouraging.

The lymphatic malformation did not appear to be growing.

Everything else looked good. The baby's head measured perfectly. Heart looked great. Lungs were doing what they were supposed to do. Kidneys looked fine.

And, at one appointment, we learned something that was a HUGE bit of good news:

The baby was sticking out its (I didn't want to know gender, even after ALL those ultrasounds!) tongue. Sticking it out and in, out and in.

What a relief -- because I knew that many LMs that obstruct the airway keep a child from being able to withdraw his/her tongue. It just hangs outside the mouth because the LM is such an obstruction that there is nowhere else for the tongue to go.

So, that bit of news definitely was welcome. It meant our baby's airway most likely was not obstructed.

I tried so hard to focus on all of the good stuff, even though I also heard the following words from the doctor:

You need to deliver the baby in a hospital with a level-four NICU. I want to have the NICU team standing by in case the baby needs to be intubated.

I have had more than my fair-share of dealings with the five stages of grief.
As I read about children with large LMs -- about their trachs and G-tubes, about their multiple surgeries and severe disfigurement, I hit that bargaining stage pretty damn hard.

OK, God, if you would just let this baby be born breathing without any problems -- just able to breath and swallow -- I will stop worrying so much about Daniel and appreciate him for who he is.

Well, my spiritual life ain't what it should be, and as I've noted, I think God mostly listens and doesn't intervene. But ...

If he was listening, and if he did intervene on my daughter's behalf, he did one heck of a job.

She is beautiful.
And amazing.
Smart and funny and, oh, so filled with energy.
She is a singing, dancing delight, even though she sometimes drives me crazy with all of the drama.

Her LM definitely was noticeable at birth, but it did not cause her any problems.

You can see what it looked like in the picture of her the day she went home from the hospital.

Her LM has not caused her any problems in her five-plus years. It still might someday--they sometimes swell during illness or periods of great hormonal change, like pregnancy--but the fact that it hasn't swollen yet is a great sign. It turns dark when she has the slightest bit of injury or trauma to that part of her face--like when she collided with another little girl in her dance class a few weeks ago. But the color goes away in time.

Most of the time, nobody would even know it is there.

She is absolutely beautiful.

But going back to that bargain with God .... I definitely have not held up my end of the deal.

I want so much more for my son.
I HATE how he is so frustrated by his inability to speak.
I want him to be able to write a letter to me some day, even if it is just a short note with simple sentences.
I want to hear him say "I love you."

This life of his is not fair, and by extension, his family endures unfairness as well.

And, yep, God, I ain't happy about it.
I suppose that as my frustration grows, I should be on my knees that much more often. Especially when I have days like I did yesterday, when my son is pushing all my buttons and I find my frustration level growing in volumes. Sigh ....

It is not as if God promised anything to anyone, in terms of this life here on Earth.

And I know there are times when He must be so disappointed in me--at my impatience, at my self-centered woes of unfairness.

But I hope He also knows that, at the end of the day, I realize that being my son's mother has made me a better and stronger person ....

even though I still have a very long way to go.

2010-11-05T17:46:00.002-05:00

Autism brings on its share of headaches, heartaches, and out-and-out stress.

No doubt.

BUT there are "autistic traits" that definitely would improve the world if only the "normal" people would pay attention.

As I have noted here before, when my son likes you, he simply likes you -- unconditionally.
Whether you are fat,
whether you are bald,
whether your clothes are a mess,
and your life is even messier ...

It doesn't matter.

My son doesn't judge as others do.

What matters to him, is really quite simple:

Is this person nice to me?

What a concept.

And so perhaps the most troubling thing to me, in this life of mine that has been so troublesome as of late, is that there are people in this world who, for lack of a better description, are totally the opposite.

It would never occur to my son to do anything to hurt someone.
Because WHY would he ever want anyone to hurt?

And, yet, there are people who take pleasure in others pain.

They can contribute to the worst pain a person has ever known and rub that person's face in it.

Amazing.

I'll take my son's problems, numerous and challenging though they are, any day before I'd want to deal with problems, and people, like that.

So Happy to be Mistaken

2010-11-01T15:31:00.003-05:00

I had a big scare one morning last week as I was driving my kids to school.

I started down the road that borders my neighborhood -- it runs directly behind my backyard. It is a very busy road during the morning.

I approached the part of the road that bordered my own backyard and saw a furry blob.

A black, grey and white furry blob.

"No, no, no," I whispered. "Oh no, oh no, oh no."

Not Lovey.

I slowed down and drove past the dead cat.

It looked just like Lovey.

I turned down a side street and parked the car. I jogged over, stood smack in the middle of the road and gazed down. (Yes, I could see my car the entire time. Please, nobody call DCFS. I have enough problems.)

The collar wasn't there, but Lovey sometimes gets his collar snagged on bushes and ripped off. I thought there might be a bit more white around the neck than I remembered. BUT the rest of the cat looked EXACTLY like Lovey. And he was crumpled up right there behind my house -- behind the fence I see Lovey walk along and climb over almost daily.

Oh, boo, hoo, hoo.

I moved the cat from the middle of the road to the grass.

I finished taking my kids to school.

I called my dad,

Boo, hoo, hoo.

I texted my best friend.

Boo, hoo, hoo.

I thought to myself: Seriously, God, with all of this crap in my life? With all of this pain and sadness? And now there is no Lovey?????

I know, I know. No reason to question God. I have never believed he causes hardship. I am a believer in an omniscient, keeping-tabs-but-not-interfering-God. It is the only way I can make sense of the world (although I still pray, so go figure).

I went home to get something to use to wrap up the body.

And who is there, basking in the sun in the middle of my driveway????

Dear, sweet Lovey.

OK, so I know I haven't been sleeping much. I haven't eaten much. My mind has been blown away by the details surrounding the crumbling of my marriage.

BUT AM I HALLUCINATING??????

I dropped to the ground and loved on Lovey.

And I drove back to the grassy shoulder.

There was that poor little cat.

I placed him on a towel and gently wrapped him up.

There was no way I could just leave him.

Add it to the list of things I never thought I was capable of doing before life slammed me upside the head with a you-really-don't-have-much-of-a-choice-fastball.

I can remove feline corpses from the side of the road.

The nameless kitty is now buried in my yard.

And I sure am happy every time I see Lovey.

Finding Myself

2010-10-27T23:09:00.009-05:00

When your first child is profoundly autistic, you can easily lose yourself in his diagnosis.

Especially when you have given up a career of your own.

Especially when you have been needed to be the primary parent for that child, as well as the child who followed.

The years go by.

He goes from two to three and still no words.

And you start to think they might never come.

You battle depression. You wonder what you did to bring this suffering upon your child. You go to bed crying. You try to care for a newborn daughter whose presence in your womb came JUST as you started to fall into this world filled with worry for your son.

Three turns to four, and you are presented with an opportunity to try something new. Maybe this will work. Maybe the people at this school will find a way to unlock the potential.

Four turns to five, and you think that maybe he needs just one more year. There are moments where you see his mind at work. You see him solve problems without the benefit of any language. You see him start to nod and shake his head and answer your simple questions. You see him start to move his mouth in different ways and laugh when he makes a new sound. But, still, no words.

Five turns to six, and WHAT????? Why am I now doing this alone? What happened to my marriage? And, crap, now we are in public school. His teacher is wonderful. His aides are wonderful. But the football coaches' salaries probably surpass the special education budget for the entire district. And my son is stimming more than ever and still is struggling with some skills most two-year-olds have mastered.

WHAT NOW?????

Deal with all of that and .... well, I guess it is not hard to wonder why I can be asking, "What in the hell happened to me?"

Where am I?

Who am I?

And what in the h-e-double-l am I going to do with the rest of my life that does not involve autism?

I am struggling to find myself.

One thing I have learned is that I am deeply flawed, but that I have the best intentions .....

I guess that counts for something.

Another thing I have learned is that, no matter what, I refuse to leave my children. I know that with absolute certainty. How do I know? Because there have been moments when I have been face-first in the carpet crying out to God ... moments when I have been curled up in total despair wondering how I would get up in the morning.... moments when I actually have told my best friend, God bless her, "I just can't do this anymore."

And, yet, here I am.

I can't imagine being anywhere else.

I need to find out more, though, about myself, and about the person I am going to be five, ten, twenty years from now.

It is going to take some time.

But here are a few of the things I am discovering:

I like to dance. I really, really like to dance. I like putting on a black dress and dancing all over a crowded, hoppin' dance floor.

I like to run races. I like the tension that flows through my body while I stand with the runners at the starting line. I like the feeling of accomplishment when I finish, regardless of my time. I like knowing that the girl who never once considered herself remotely athletic can run a race and run it well.

I have room for a lot of forgiveness in my heart. More than I thought possible, and certainly more than I ever thought I'd need.

And one other thing I have discovered as of late -- and as with so many things, I owe a bit of gratitude to my bud S for helping with this discovery -- there really is something to be said for taking the high road.

I have taken only a few steps down this road of self-discovery. My shoes are definitely worn, and the bags under my eyes speak for themselves.

But I am not turning back.

Home Sweet Home

2010-10-24T23:46:00.005-05:00

I went away for the weekend.

There was something important I wanted to do.

Something I needed to do.

I am not sure how much I got accomplished.

But I had to try.

I came home this evening with my children and walked into a very messy house.

A dishwasher full of dishes that needed to be put away.

Laundry that needed to be folded.

Beds unmade.

Toys scattered throughout every room.

But there was something so comforting about walking into my house ....

Like an embrace.

HOME.

So much more than a roof over my head and a floor beneath my feet.

A foundation.

I put my children to bed and was thankful that we all were under the same roof ...

that everyone was healthy and would be back on schedule tomorrow ...

that both of my kiddos had schools to go to where they will both be happy, even though one of them will be working on skills that most of us take for granted.

It is good to be home.

The Child in My Heart

2010-10-22T02:01:00.008-05:00

Hey you, you're a child in my head
You haven't walked yet
Your first words have yet to be said
But I swear you'll be blessed
...
And you, you'll be blessed
You'll have the best
I promise you that
I'll pick a star from the sky
Pull your name from a hat
I promise you that, promise you that, promise you that
You'll be blessed --Elton John, You'll Be Blessed

My son has some of the most beautiful hazel eyes I have ever seen. The colors in his eyes sparkle when he is happy.

His laugh is contagious.

But is he the child in my head??? The child I envisioned when I learned one December day eight years ago that I was expecitng my first child?

No.

I don't think I was envisioning too much in particular. I wanted a boy, but I never told anybody that. I secretly yearned for a baby boy simply because I knew how very much my husband wanted one. And I just felt it -- from early on in the pregnancy. I knew the child growing in me was going to be a big, strapping boy.

And he was.

He also was, and still is, absolutely gorgeous.

But like most moms, while my tummy expanded and my feet swelled, my thoughts mostly were focused on my baby's health.

Would he come out with ten toes and ten fngers and everything in the right place?

Just after I gave birth, and the nurse stepped away with my baby to check him out and clean him, I kept asking my husband, "Does he look OK? Does everything look OK?"

As if anybody was going to be able to take one glance at this child who just miraculously entered the world and say, "Yes, eveything is OK."

I now realize: it just doesn't work that way.

My baby boy DID look just like the baby in my head.
But there was something in his head that was not right.

There was a time, during my never-ending struggle to deal with my son's autism, when I could not even look at pictures from his first year of life.

How sad.

Now, I occasionally look at the pictures from his infancy and toddler years, and I play, "Can you find the autism."

WHEN should I have known?

Sigh ....

Daniel is not the child I saw in my head.

He struggles.

And I worry:

Who will be there for him when I no longer can be?
Who will make sure that his life is a happy one?
How can I ensure that he becomes all he can be?
And given all his problems, all of his obstacles, how will I make sure that my son truly is blessed?

Talk about worries ....

No, Daniel is not the child I envisioned in my head.

But he is the child who occupies so much of my mind ....

And so very, very much of my heart.

He is my constant reminder that there are no guarantees in life.

And that we get only one chance to be happy ...

One life .... one complicated, messy, beautiful life.

And when it is over, there are no more opportunities to be happy.

He is my reminder that I should look for happiness.
And seize it when it is in front of me.

Because if my boy -- my beautiful, but challenged son -- can find happiness in his life -- and, oh how he does -- then surely, so can I.

I Hear Ya, Deb, and It Sucks

2010-10-20T22:11:00.005-05:00

Don't even get me started about the link noted below ...

Been there, done that, although our insurance never even started paying for therapy for our son.

Autism: the disorder no insurance company wants to recognize.

Yep, Deb, you got it right: F&#% 'em.

http://thisismynewnormal.blogspot.com

Broken

2010-10-19T22:48:00.003-05:00

There are broken things all around me.

Broken hearts, broken dreams, broken people.

Everywhere I look ....

things are broken.

My son's brain ... it never even formed properly...

It is broken.

My daughter's confidence, her sense of self, her sense of family ....

All broken.

My own dreams, my own heart ....

Broken.

I am bending down, trying to pick up the pieces.

But things keep breaking.

And I only have two hands.

When do the pieces become too numerous to pick up?

When do things become so shattered that they can never be put back together?

I don't know.

But I am still trying.

Truly Wonderful

2010-10-18T23:22:00.009-05:00

So, a few days ago I posted about why I blog.

And I hoped for some new wonderful things about which to write.

These days, wonderful is a very tall order. I have been through hell.

But ....

Tonight I laughed at my daughter as I followed her and her brother around the block. They were on bikes. I was on foot. She looked at a driveway to see a child's chalk drawings -- she likes to partake in a lot of chalk drawing herself these days -- and she said with delight, "Oooohhhhh, look at those BEAUTIFUL chalk drawings," as if she had just seen a collection of masterpieces.

How could I not giggle?

How could I not laugh at her after our trek around the block, when she arrived in the driveway, jumped off her bike and did a little dance, screaming, "I made it home, F-I-R-S-T."

Yes, you did, Olivia. You did insist on being "the leader" the entire way, after all.

This afternoon, I helped my daughter pick out a mini-pumpkin. She was so delighted to be picking out a pumpkin (aahhh, the simple things). We had to get JUST the right one. The stem couldn't be too short or too long. The pumpkin couldn't be too blotchy or too flat. (Geez, do I look forward to picking out clothes with her someday.) And I marvelled that she came home and decorated the thing -- for a school project -- with absolutely no assistance from me.

Before our pumpkin expedition, I watched my girl force -- ahem, coax -- her brother onto McDonalds playground equipment.

Gotta love that never-give-up-spirit.

And after our bike trip, I watched my children succumb to hysterical laughter as Olivia sprayed both herself and Daniel with the garden hose. So much for her "job" of watering the new flowers, which, by the way, also bring a smile to my face.

That was just ONE DAY.

And I didn't even mention the best part.

I sat down with my son today to get him to work on a few things with me. I once put so much pressure on myself to "work with" Daniel. It is a tremendous burden, when you have a severely autistic child, to be both a parent and a teacher. You feel like you always need to keep your child from engaging in self-stimulatory behavior, like you need to keep him active and engaged each moment of the day. It is an impossible task. I have gotten better about giving myself a break from the guilt, but .... as I mentioned, I have been trough hell the past year. Some days, it was all I could do to function at all. I should have been focused on goals for my son, and, instead, I was focused on ... well, breathing.

But today, my boy did some things for me that I didn't know he could do.

It has been a while since I cheered for him like I did today. (And what a shame that is.)

I watched him smile at my pleasure, at my praise.

What a WONDERFUL reminder of how much I have to treasure in my children.

BOTH of them.

The one who amazes me with her intellect.

AND the one who amazes me with his ability to persevere, in his own way, despite a boatload of challenges.

It is a different kind of wonderful than what I once envisioned.

It is a different kind of wonderful than what many people could begin to understand.

And it is a different kind of wonderful than what some people can appreciate.

But today was wonderful.

Truly wonderful.

What It Feels Like to Me

2010-10-17T23:14:00.008-05:00

I can't tell you what it really is
I can only tell you what it feels like
And right now it's a steel knife in my windpipe
Eminem, Love the Way You Lie

Let me try to explain what being alone feels like to me.

It feels like ....

sitting on my seven-year-old non-verbal son so I can cut his toe-nails, struggling to pin him to the ground while simultaneously keeping each foot still enough so I can clip the nails without drawing blood, listening to him scream the entire time and wondering just which circuits in his brain are so misfired that this harmless experience is, for him, pure torture...

watching my five-year-old daughter have one anxiety-filled fit after another, listening to her slam doors, watching her throw toys, seeing her growing frustration and avoidance as I try to help her learn to read, so she can "keep up" with the children in her private kindergarten class -- and, well, so I can not feel like such a failure as a mother...

wondering why I am doing these things by myself ....

wishing I had someone to wrap their arms around me at the end of the day, wishing I had someone who would acknowledge and validate my sadness and my pain, wishing I had someone who would try to see life through my eyes... wishing I had someone who loved me enough to be here.

THAT is what loneliness feels like to me.

Why I Write

2010-10-16T01:13:00.008-05:00

Someone asked me the other day what I get out of writing.

Well, I suppose you could look at the time of night when I write most of my posts and figure it is one way I battle insomnia.

But it is so much more ...

When your child has a severe disability, coping becomes one of the most difficult challenges you'll ever face. And I almost hate to use the term "severe" because, really, there are children in this world who can't even eat or sit up on their own, and my child can put away a tall order of pancakes before leaping into a pool and swimming like a fish.

But, still, my son IS profoundly affected by a severe disability.

He cannot talk.

He cannot understand a decent amount of what is said to him (and just how much is difficult to determine).

He is seven-years-old and would very much like to bond with children around him, but does not know how.

And he sees the world in unusual, "atypical" ways.

I truly believe that because he is so limited with respect to language, his other ways of relating to the world take on a depth that the rest of us do not understand.

He is fascinated by what he sees.

The way the leaves blow in the wind, the way water cascades from a fountain, the way sunlight forms shadows on the ground...

We might notice these things in passing.
My son is mesmerized.

He also is fascinated by touch.

He has to touch the ground when he sees that the surface beneath his feet has changed. He likes to press himself into corners. He loves the feel of soft, velvety fabric.

He LOVES my bare tummy. God only knows why. I could stand to do some situps. But he loves to wrap his arms around my waist and press his face into my tummy.

It is weird.

But it is part of what makes Daniel, Daniel.

And it makes me laugh.

But his challenges also break my heart.

Why do I write? And why do I write on this blog, in particular?

Because I know there are other parents out there going through this pain. I write because it helps to communicate with people who understand.

Because I feel very alone. And I am alone, in a sense, despite the fact that several people are in my corner, and I love them all. I write because it helps me deal with loneliness.

Because there are so many other things I could be doing to cope -- and most of them would be self-destructive. I write because it beats the hell out of drinking.

Because somehow, at the end of the day, I have to find some sanity. I write because I have to have a way of clearing my head.

Because there are good things, happy things, happening in my life every day, right alongside this beast known as autism. I write because I don't want to forget the things that make me laugh.

But there is one more reason that I write. A deeply personal reason ... so incredibly heartfelt that only the few people who love me best know what it is. It may be THE biggest reason I write, but it is the reason I will keep to myself.

And now it is time to crawl into bed and stare at the ceiling ... time to count my blessings despite the many sorrows .... time to close my eyes and make wishes ... maybe even whisper a prayer.

Tomorrow is a new day.

I hope it will give me something wonderful about which to write.

Just Take It

2010-10-13T22:45:00.005-05:00

My boy is getting older.

And stronger.

And things are not what they should be. They are not what I wanted, what I hoped for, even after I began the difficult process of accepting the "A word" and altering my dreams.

There are moments when the autism -- my son's autism, the autism that fills my family's days -- is so profound that it is like a slap to my face, a punch to the gut, a kick in the ribs .... a beatdown, when I am already face first in the dirt.

These moments come when I feel like my son is tormented by his inability to communicate with the world around him.

I cannot begin to imagine what it must be like to live inside his world.

I am rarely at a loss for words. The irony is not lost on me: how is it that MY child could have THIS problem????

I see how much he suffers and I wish I could give him my voice.

The medical geniuses of this world have discovered how to transplant hearts and lungs, kidneys and parts of livers .. they can pull bone marrow from one person and use it to cure cancer in another, they can remove skin from part of a person's body and graft it some place else ....

So, why, oh why, can't someone figure out how to take my voice and give it to my child?

They could take it. I'd go without.

They could take the part of my brain that controls language.

They could take the whole damn thing.

If it meant my child would no longer struggle.

I am not sure how much of my gray matter is still working anyway.

This world of autism is a lonely place.

It is so damn lonely for my child.

But it is lonely for the ones who love him, too.

It causes us to worry endlessly, to doubt ourselves, to grieve the loss of dreams.

It causes us to do things we never, ever would have dreamed ourselves capable of doing.

I smile at friends as they talk about the achievements of their children. I would never want them not to share.

But, wow, are there reminders -- everyplace, at every turn -- of just how much my life, and my family's life, is not what I had expected it to be.

So, figure it out, medical world.

Figure it out for me.

If it means taking my voice, then just tell me how and when.

I'll do it.

Just take it.

As long as you give it to him.

Star Light, Star Bright

2010-10-07T23:49:00.004-05:00

My daughter recently asked me to help her wish on a star.

Where did she learn that concept, I wondered????

TV? A book? A friend?

I just know it wasn't me.

Sigh ....

Add it to the list of things I should have thought of to teach her but didn't...

Anyway, how delightful that she wants to do this -- to say the words I used to say when I was little, words I used to believe in ...

Just like I beleived in Santa and the Tooth Fairy ...

Just like I believed in magic.

So, off we went to the driveway and we said the words together:

Star light, Star bright
First star I see tonight
I wish I may, I wish I might
Have this wish I wish tonight

She asked to say it again.

No, just one wish each night, I told her. Only on the first star you see.

If only ...

If only it were that simple ....

And, yet, I found myself wishing with my daugher that night.

And I wished again when she asked the next night.

I closed my eyes and said the words I thought in my head... and felt in my heart.

It wasn't even her brother for whom I wished ..

even though I would give anything, do anything, to see him no longer struggle with this horrible thing called autism.

No, it was not my boy for whom I wished ...

even though I wish for him all the time.

It was for someone else.

If only it were that simple ....

To Sleep, to Dream, to Speak

2010-10-06T23:46:00.009-05:00

My five-year-old daughter has been talking in her sleep a lot lately.

And what she says sometimes worries me.

As if I need more to worry about ....

Just a few minutes ago, as I sat on my couch with my lap-top and Cheezits, wide awake despite my fatigue, I heard her scream out from her bed:

"I can't do this, I can't do this, I can't do this."

Geez. What in the hell is she dreaming about?

I think about the possibilities.

Is she thinking about school?

I enrolled her in an excellent, but hoity-toity private kindergarten this fall, after three years at a preschool where the primary focus was on being a good friend and helping those who need it (i.e. the students in the class who are on the autism spectrum).

Now she sits each day in the world of "perfection." Her classmates probably have been drilled with phonics flashcards since the day they started eating whole foods. Their mothers pull up to the school in Escalades and Lexus SUVs,in full makeup despite the fact that they are wearing Nike gym clothes -- probably headed to pilates. And my poor daughter marches in with her flip-flop-wearing, barely-holding-it-together-mother who might have forgotten to brush her teeth the night before.

I threw her into this new, challenging -- "Let's all read from our readers even though we are barely five-years-old" -- environment. I put her there even though I have not given her the attention she deserves, even though I have not taught her the things I would have if I had been living a different life -- a life untouched by autism.

Sink or swim, Olivia.

Is she thinking about her brother?

My darling daughter is two years and two weeks younger than her brother.

But she surpassed him developmentally when she was just ten-months-old.

And, every day, I see the signs.

I see the signs of a sister who loves her brother as much as she worries about him.

I see the signs of a girl who understands that her brother is different and disabled, and isn't at all ashamed, but is sometimes very annoyed.

And who wouldn't be???

Why should a five-year-old girl feel the need to race after her seven-year-old brother if he ventures down the aisle at Walmart?

Why should she tell me in the middle of a department store, "You have GOT to hang on to, Daniel. We can't lose him!"

Why should a five-year-old be telling other children about "autism," in situations where even her own mother frequently struggles to find the words.

It is not fair. It is not right.

But it is her reality.

Is she thinking about me?

Does she realize just how essential she is to her mother's happiness?

Does she know that she is the ONE THING that has kept me from completely falling to pieces the past two years?

Does she know that, without her, I don't think I could get out of bed each morning?

Does she realize that soemtimes when I hug her before she drifts off to sleep, that I can barely bring myself to let go? That I put my face next to hers and take in the very smell of her, the very feel of her cheek against my own?

Oh, dear God, no wonder she says these things in her sleep .....

I have to do better. I have to try harder...

To make her see how beautiful she is.

To make her understand that my feelings of anxiety and panic and sadness have NOTHING to do with her.

To make her feel at peace.

2010-10-05T23:23:00.006-05:00

I had a moment last Saturday evening.

A very powerful moment.

A wonderful moment.

And that is saying a lot.

Because in the past two years, I have had some hellish moments. And they just keep coming.

In waves.

Waves ferocious enough to knock me over. To pull me under. To crush me.

But I am trying to keep my head up.

And swim against the tide.

This moment last Saturday involved a woman who has become so dear to me that words cannot express her value.

I spent the afternoon in her home. My daughter played with hers, and I bombarded her house with my sadness, my anxiety.

You'd think she must be so sick of me. Talk about a downer of a friend.

But she still calls every day. She listens. And every word she says to me is said in love.

After an afternoon of watching football (let's hope there are better things waiting for the Horns next year, BTW), we went to a nearby park with her two kids and my daughter.

I watched my daughter being so happy with hers. I was so grateful for the opportunity to see her being a kid without any worries about autism. Her brother wasn't there for her to worry about, and, every now and then, she definitely deserves that. (Thank you to my wonderful parents for making sure that my beautiful boy was happy and well cared for that day. He couldn't have been in more loving hands.)

It came time to go home. My daughter wrapped her arms around everyone and gave good-bye hugs.

I reached into my friend's car to kiss both of her kids.

And it happened.

I have told my friend before how much she means to me. If she ever needs blood, a kidney, bone marrow, part of my liver .... its hers. And I have told her, if there ever came a time when her kids needed someone to care for them, I would gladly do it.

I meant it. I would do anything for this woman.

But, there was something in that moment, when I reached in and placed my hands on her children's faces and kissed them both.

I felt it. If there was ever a reason when, God forbid, their parents were not there .... and they needed someone ....

I would love these two beautiful children every bit as I love my own.

I am probably one of the LAST people she would choose for a guardian, given my own messy life and multiple problems.

BUT, man, would I love those children.

It surprised me just a bit -- this feeling that I could love any kids as much as I love my own.

But there it was.

A reminder that my heart is still working. And that it is capable of new love, despite all the beating it has taken.

It is a good thing to know.

When Class Lets Out

2010-10-05T12:36:00.003-05:00

It is my favorite moment of the day, five days a week.

Those mothers out there who have a child with severe autism, as well as one or more neorotypical children, will know what I am about to describe.

Because they all have a moment like it.

A moment each day when their hearts nearly burst right out of their chests.

For me, it is the moment when I pick my daughter up from school.

She attends a private kindergarten. She turned five just two days past the age cut-off for public kindergarten. I did not want her to sit out one more year, and she can attend first grade at our local public school next year if she attends private kindergarten. So despite the significant cost of tuition, I signed her up for a great dual language kindergarten close to our home.

At the end of the school day, teachers bring the students out into a large open area in the middle of the building. The kiddos sit in a line with their classmates and wait to be picked up.

Parents walk down a long hallway to get to this waiting area. You can't see the children until you get to the end of the hallway and look around the corner.

THAT moment -- that moment when I peek around the corner and spot my daughter -- is my absolute favorite moment of the day.

There she sits, totally in the moment, always with two or three or more friends.

TALKING.

Talking, talking, talking.

Giggling, imagining, showing off toys that she stashed in her backpack on the way out the door that morning.

Sharing the secrets of little girls.

I stand there as long as I can before she notices me or before I start to wonder if the teachers think I am a freak.

I want to freeze time.

The other parents come and go. They round the corner and holler for their children. They exchange a few words with the teacher and off they go.

"WAIT," I want to tell them. "Stop and look at your child. Your son or daughter is amazing. Look what your child can do. It is a gift."

It is only a moment.

But it is such a treasure.

Lovey

2010-10-04T08:59:00.001-05:00

For just one day,

I would like to be my cat.

2010-09-29T22:38:00.002-05:00

What my daughter said to me a few days ago:

Mama, do you know what true love is?

(Oh, dear God, don't get me started, I think to myself.)

What is it, Olivia?

It is when a princess and a prince love each other more than they love themselves.

Well, take out the prince and the princess stuff, and ....

WOW.

Where did she come up with that????

OK, so it is a bit simplified.

But what a beautiful description of an ideal.

Whatever true love is, I hope someday my daughter finds it.

And if she does, I hope she never lets it go.

2010-09-28T11:42:00.002-05:00

Someone recently told me "that there is nothing worse than autism."

How do I start to respond to that?

Some people would probably wonder if I consider that statement an attack on my child.

I do not.
I know the speaker did not intend it that way at all.

You can despise the disorder while loving someone who has autism.
I do it every day.

But, without a doubt, that statement makes me incredibly sad.

Sad, because I know as well as just about anyone what it means to hate autism.

It really does suck.

It sucks to see your child struggle to do what most of us do thousands of times a day without giving it a moment's consideration -- we open our mouths and express ourselves. We chat with friends. We order lunch. We tell somebody a funny story, or complain about life's struggles, or reach out to somebody in need with kind, compassionate words.

My son cannot even say his own name.

The statement also makes me sad because I know the dread concerning the future that lies behind those dark words.

Somewhere along the way I have learned to concentrate more on the here and now. It was NOT an easy thing to do. And that is not to say I don't worry about the future.

I sooooo worry about the future.

But to think about it every day would be to make myself crazy.
And I truly believe that somehow, someway I will figure things out for my son as he and I both age.

Call it dumb, call it fantasy -- and some people have -- but I just believe.

I have moments of doubt. I have many moments where I feel like a failure as a parent. I wish to hell and back that my son would one day be able to talk to me.

I wish my child did not have autism.

But I would never say that there is "nothing worse than autism."

Even though I know the pain that drives the sentiment.

My child IS HAPPY. He mostly lives in his own world. But the moments when he brings me into that world are so spectacular -- they are filled with the absolute purest form of love I ever have experienced.

I believe that my child's love is the closest reflection of the love of a Heavenly Father (assuming there is one).

Because my son truly loves unconditionally.

When he likes you, he truly loves you.

He loves you when you've gained 20 pounds.
He loves you when you've had a cranky day and have shown him little patience.
He loves you even when you fail him.

I ought to know.

And there definitely are things worse than autism.

I have had some experience with that as well.

One of them is losing someone.

One of them is seeing someone lose himself.

And one of them is wishing so hard that you could help someone deal with what is the most tragic pain they have ever experienced ....

And not finding any roadmaps.

One of them is feeling helpless.

I Want to Believe in Angels

2010-09-27T09:56:00.006-05:00

Spend all your time waiting for that second chance
For the break that will make it ok
There's always some reason to feel not good enough
And it's hard at the end of the day
I need some distraction, oh, beautiful release
Memories seep from my veins
They may be empty and weightless and maybe
I'll find some peace tonight
Sarah McLachlan,
In the Arms of an Angel

If only I knew ....

that there would be an angel waiting for me at the end ...

someone who would wrap his or her arms around me and pull the pain from my soul...

and that the viciousness hurled at me from someone who had no business being any part of my family's story would somehow be erased from my mind.

If only I knew ....

that there would be an angel waiting in the hereafter to tell me that my heart would be healed ...

someone who knew the pain I felt in this life because she witnessed it from above ...

and that the agony of heartache would be replaced by peace and calm and sanity.

If only I knew ....

that there would be an angel waiting for my children one day, too ....

someone who would make sure that whatever hurt they suffered in their lifetimes was replaced with the joy they truly deserve ....

and that everything would be fixed for them in Heaven:

the gaping hole in their family would no longer hurt them,

my daughter would no longer worry about being her brother's keeper,

and my son would find his voice.

So tired of the straight line, and everywhere you turn
There's vultures and thieves at your back
The storm keeps on twisting, you keep on building the lies
That you make up for all that you lack
It don't make no difference, escaping one last time
It's easier to believe
In this sweet madness, oh this glorious sadness
That brings me to my knees
Sarah McLachlan

I want to know that one day I will feel more than what I am feeling right now.

I want to know that one day everything really will be OK.

I want to believe in angels.

Faces With No Names

2010-09-26T23:40:00.004-05:00

One of the things I remember from being in the hospital after giving birth was how the nurses came by to ask how much pain I was in. They pointed to a sheet posted on the wall -- the same little graphics I suppose most hospitals use -- with the funny faces accompanying a pain scale of one to 10. The faces started off looking pretty normal and then progressed into what looked like complete agony by number 10.

You could line up the best artists in the world, but none of them could draw a face for this.

And there ain't a number high enough.

And, yet, I keep reminding myself that there is greater pain in this world.

I know there is.

There are people whose children have died. Many, many people.

There are people who have lost their entire families.

People who have survived war, ungodly natural disasters, unspeakable violence.

There are people whose children have been kidnapped and who have only the worst to imagine and fear.

It could be worse, it could be worse, it could be worse.

Wasn't I saying the same thing some time last year?

Funny thing about hitting rock bottom: when you realize that what you THOUGHT was rock bottom was merely midway down the ladder, you wonder if you will ever have the strength to get back up.

Yep, I am a rollercoaster, people. And I am ready for the carousel.

Where is it?

2010-09-25T20:14:00.008-05:00

I ran a pretty darn good race last Saturday, all things considered.

And, man, were there a lot of things to consider...

I ran, I coughed, I wheezed, I sweated profusely, and I finished .... and I didn't even come in close to last.

And what do you know?

I can run a good race just three weeks after discovering the unthinkable ...

And ....

I still have two parents who would climb mountains for me.

I still have a best friend who repeatedly reminds me that I am worthy of love and respect.

And she listens, with all the concern and compassion of a saint.

I still have other friends, too, who remind me how much they worry and care for me. And none of them -- not a single one -- would ever judge or make light of the terrible situation in which I find myself.

I still have two children who love me very much.

And I even have a dog, stubborn and ugly but loving and sweet, who is currently covered in pink and purple hair glitter, courtesy of my daughter.

Life goes on.

2010-09-18T17:55:00.002-05:00

Someone recently told me that I should spend "all of (my) extra time being a better wife instead of blogging and training for marathons."

There is just so very much I can say about that comment ....

But I won't.

Instead, I am going to lace up my running shoes and participate in a 5K this evening.

My time will stink. I am exhausted. And I am coughing and wheezing up some nasty looking stuff.

But I will finish.

At least that's what I am telling myself. Rah, rah.

Later.

2010-09-16T21:36:00.007-05:00

It was, by far, the happiest day of my life.

First baby.

A boy.

A nine on his first Apgar, followed by a ten.

Eight pounds, 10 ounces.

Ten fingers, ten toes.

A head full of hair.

Everything was perfect.

But it wasn't.

How could I have known?

I gave birth at the hospital where my husband worked. Everybody knew my husband. The people poured into my room. One by one, they came. All day long. Who needs sleep after labor and delivery, right?

But I didn't mind. Seriously. Because I knew they were coming at my husband's urging.

He was so proud.

"Did you hear? I had my baby. Go see my boy. Room 255."

The nurses were so tickled as they described his words to me.

How is it, when two people can so joyously bring a life into this world, when a baby was so very wanted, so very cherished from the second the line showed up on the little pee-soaked stick .....

How can THAT turn into THIS.

Why can't the two people who need each other the most find each other in the midst of all that pain?

Autism really knows how to kick ass.

And I am so very sad.

Fixing Things

2010-09-15T08:59:00.004-05:00

Since my husband left last year, I have learned that I can fix things.

Not a lot of things.

But a few.

The faucet handle just fell off one day and clanged into the kitchen sink.

I found the part that was broken and called the number on the handle. I ordered a new part and waited for it to arrive. I took out a wrench -- I think it was a wrench -- and a screwdriver, and I got the sucker back on.

OK, so it is wobbly.

But it works.

The light bulb went out in my Sony television.

I got a new one, took the front panel cover off the unit -- again, using a screwdriver -- took out the box with the bulb and slapped that new baby in.

My lawn mower kind of sucks. It is old. Sometimes I have to finagle for minutes in the blazing sun to get it to work. Sometimes I even have to take the little front cover off -- again, with a screw driver -- when I have primed the mower with too much gasoline.

But I get the lawn mowed eventually.

Yes, I can fix a few things.

But not the most important ones.

I cannot fix people.

I cannot place my hands into my son's brain and reconnect the circuits. I cannot redirect all the information buzzing in his brain. I wish I could take the chaos, the cacophony, the lack of clarity and smooth it out.

I wish I could fix the part of him that makes life so difficult for him.

I wish I could fix the part of him that keeps him from understanding how to fully join my world.

I wish I could fix the part of him that blocks the words.

But I can't.

And nobody can.

And it is OK.

It is OK because my son is wonderful.

It is OK because I know that he is happy.

It is OK because there is so much of life that he enjoys -- every time he leaps into a swimming pool, he is at peace. Every time he buckles the belt in a roller coaster car, he is filled with a zest for life that many people never experience. Every time he snuggles with my mother in the love seat in my living room, he knows he is loved.

And every morning, when I lift him from bed (Yes, I still lift him from bed even though he is seven) .... and he wraps his arms tight around my neck and his legs tight around my waist .....

I know how much I am loved.

It is OK because ....

Well, it has to be ....

And because it just is.

2010-09-08T00:26:00.002-05:00

You are a thief.

You steal from children.

From the time they are in the womb, barely identifiable on the ultrasound machine.

All the mother can see is a tiny blip on the screen. The image looks like a tadpole.

But then she hears it -- a heartbeat. Strong and steady.

And the tears flow.

Tears of joy -- unavoidable tears springing from her soul, from this unreal feeling that her life will never be the same. From this instant, every decision will be made for this child, this person who isn't even here yet. He might as well be. Because he will be all she is thinking about for the next nine months....

And for the rest of her life ....

And you were there, the whole time, you mother f'er.

Just lurking.

Ready to attack my child.

And rob him of his words.

You came into my home.

You robbed us of our joy.

You assaulted us.

You threw at us every weapon in your arsenal.

Fear, insecurity, worry, self-doubt, guilt ...

PANIC.

I didn't want to hear the words.

It was almost six years ago.

I couldn't stand to hear what my son's father was thinking.

He knew, he was positive, he was panicked.

But I couldn't hear it. It wasn't possible. My child was too beautiful, too happy, too lovable.

To accept the label would be to insult my baby.

I couldn't do it.

And you know what you did to us, you son-of-a-bitch, you drove a wedge so deep, so deep, so deep .....

You made me doubt my worth as a woman, as a mother. God must never have wanted me to be a mother. I must have done something horrible in my life to bring this upon my child.

And I cried, and I cried, and I cried.

I did everything they told me to do. The speech therapy, the special needs preschool.

And there you were, the whole time, swatting down my hopes. Laughing at me.

Laughing at us.

Somewhere along the way you and I got to know each other on a first-name basis.

I could say your name out loud, even though I wanted to kill you, to shoot you, to throw you to the ground and kick you over and over and over. If I could take a bat to you, I would swing until my arms popped from their sockets, until I fell to the ground.

Autism, autism, autism.

My family spilt up for you, for a chance to combat you, for some hope that we might be able to conquer you.

And you laughed at us.

You robbed my daughter of a sibling with whom she can talk, with whom she can share her wonderfully creative mind in play. You made her a caretaker when she needs to be the one being cared for.

You bastard.

Oh, you must have had some fun with us. Can I break them? Will they ever find any joy in life again? Will they lose sight of what is important? Can I bring them to their knees?

Well, congratulations, asshole.

You did bring me to my knees, in desperation, in panic, in some worthless attempt to keep things together.

I don't believe I lost sight of what was important, not when all was said and done ....

But .... I am only one person.

In the end, you got what you wanted. You had some help in the form of a complete stranger to you.

And you ripped us to shreds.

But I know this, you may have robbed my child, you may have destroyed my family, but I see the joy that lies within my boy.

There is no purer love than what is in his heart.

And there isn't ANYthing you can do to screw that up.

Now go to hell.

Remembering Autumn

2010-08-22T22:32:00.015-05:00

On August 23, 1991, a beautiful girl left the world.

She was a neighbor and dear friend. She often sat next to me in the pews at our church and sang her heart out, even though she had one of the worst singing voices I have ever heard.

She was 15-years-old.

The night before she died, I drove her to our high school football team's pre-season scrimmage. I was leaving the house when I heard the phone ring and almost didn't take the time to answer it. It was my friend, Autumn, calling to ask for a ride.

I saw Autumn briefly at school the next morning, but that night going to and from the football game was the last chance I had to talk to her.

I still can recall the details of our last conversation. I even remember what she said to me as she got out of my car -- it made me laugh, and it was so typical of the delightfully sweet things Autumn so frequently said.

I watched her walk to the front door of her home, and I waved to her father as he opened the door for her.

Twenty-four hours later she was gone.

I sometimes get so caught up in the difficulties of my life. (Just read yesterday's post.) It certainly does not look anything like the life I envisioned 5 or 10 years ago. When I was pregnant with Daniel, I worried about any number of things that might go wrong, but I never actually considered the possibility that my child would be unable to talk. And don't get me started about the other knock-out surprises and disappointments life has thrown my way .... Suffice it to say life has been more difficult than I expected it to be, even though I never once believed any of us are entitled to a fantasy existence.

But all of that being said, I know how much my dear friend would like to be here in my shoes. I look at her picture on my dresser and am reminded that unfairness is a universal truth -- that life can deal you a perfect hand just as the leg breaks on your barstool.

She was a beautiful gal, my friend Autumn. And not just because she had long, beautiful hair with golden highlights, a radiant smile and cheekbones to rival Cindy Crawford's. She was a beautiful soul. I can remember only a few girls from high school who never complained about another girl, never criticized, never ridiculed, never judged. Autumn was one of them. I never heard her say a mean word about anyone.

If she were still here, she would be one of the people who do not judge my son. She wouldn't look upon him as "weird." She would first his see his beautiful smile and his loving nature, and she would bend down to his level and try to engage him.

She has been gone for 19 years, and, yet, I still think of her pretty much every day. I remember how we flirted with the cute, older boy who lived down the street, like a couple of silly, adolescent girls. I remember how we planned the things we were looking forward to that school year. I remember how I looked for her each Sunday morning as I climbed the steps to church, so eager to rush off with her and some of the other kids our age. We were way too cool to sit with our parents, after all.

So many memories come back as I sit here thinking of her right now ...

Oh, how she loved life.

If there was anything I liked about Autumn more than her sweet nature it was that singing -- that terrible, off-key singing. She knew how badly she sang. We joked about it. If she saw me start to frown, she would sing even louder, with a smile on her face and a gleam in her eyes. "So who cares that I can't sing," she would say to me. "I like to sing, and it is church. Who is going to say anything?!"

I think about her carefree, joyful attitude and wish I did a better job of emulating her spirit.

I think about how many songs she never got to sing, and I am reminded of how glad I am to be here on this Earth, laughing with friends and loving my children.

Give Us a Break

2010-08-22T00:21:00.010-05:00

My daughter has been having some behavioral problems lately.

I am not sure what to make of them.

I definitely am not sure how to respond to them.

With all the books on parenting these days, I don't think there is a single one that tells you how to parent the seven-year-old son with autism who does not talk, but, yet, has a lot going on in that sneaky little head of his, while simultaneously parenting the aforementioned child's four-year-old sister who just started kindergarten, is growing up in a single-parent household, and has more emotions than she knows how to handle, despite having a vocabulary that rivals that of many adults.

Yep, I don't think I am going to find any help on the shelves of Barnes & Noble.

Not any time soon, anyway.

Hey, maybe I just found my job opportunity.

In the meantime ....

How do I respond to the four-year-old who throws herself on the floor at the mall because she does "not have the energy to try on shoes."

How do I parent the four-year-old who tells me, "WELL, I just need YOU to cooperate with ME," after I tell her that I would really appreciate her cooperation during the shoe-shopping-venture.

How do I respond to her when she tells me that she is "done with" me, simply because I tell her she cannot get a new toy at Wal-Mart?

Keep in mind that I don't have a lot of time to ponder these questions while on the scene, because my non-verbal seven-year-old is there, too, and I can't take my eyes off of him for a second.

Sometimes higher-level-parenting has to take a backseat to reality.

I have a child who requires so much. He is walking through life with the physical capabilities of a seven-year-old, but the linguistic capabilities of an infant.

He can twist open the lid to a child-resistant-jar in a second.

He can turn on all the faucets in a bathroom, stop up the sinks, and leave the scene.

He can rise in the morning without anyone hearing, open a box of Popsicles, and eat them all, while leaving a few scattered about so that I am left scrubbing neon purple spots with carpet cleaner in the hope that the stains might disappear.

And, speaking of disappearing ...

I live in fear of it.

He cannot disappear.

My heart couldn't take it.

And I don't want to deal with police involvement and the resulting investigation by child protective services.

And so....

My daughter does not receive the type of responses she deserves.

She is not on the receiving end of a well-thought-out-parenting-plan.

She is, instead, on the receiving end of the do-the-best-I-can-even-though-I-am-stressed-beyond-words-and-feel-so-guilty-about-it-mess-otherwise-known-as-my-current-parenting-plan.

She constantly hears the phrase "in a minute" and she constantly waits.

She doesn't get to go to gymnastics class -- even though I know she would love it -- because she already takes tap and ballet, and I only have the energy to take her brother to the local rec center ONE night a week.

Oh, my, doesn't that sound awful???

Yes, I admit it. To take my daughter to dance class doesn't merely involve getting her dressed and ready and delivered on time. It also means taking her brother along. And keeping him busy and entertained and happy while we wait ...

In public.

And, even though I have been dealing with autism for several years now .... even though my skin is a lot tougher than it once was ... even though I am able to look people in the eye and tell them that my son "has autism" when the occasion requires ....

There is only so much I can do before I feel like crawling home, closing the blinds, and locking the doors.

So, my daughter has some behavioral problems.

How could she not?

I do, too.

Give us a break, world.

All of us. My boy, my girl, and, me, too.

We are doing the best we can.

Seven Years Ago Tonight

2010-08-19T00:43:00.008-05:00

Seven years ago tonight,

I sat in a hospital room and stared at you,

not having any idea of the lessons you would teach me.

I realized that I knew very little about being a mother.

But I had no idea just how much I would need to learn.

I am still learning.

Seven years ago tonight,

I thought you were the most beautiful baby ever born.

I have discovered so much in seven years.

I have felt pain that is immeasurable.

And even more joy.

I have worried endlessly, and learned how to put the worry on a shelf.

But some things remain the same.

I still believe you were the most beautiful baby ever born.

A Big Hello from Texas (Or Should I Say, "Hey Y'all")

2010-08-17T18:37:00.005-05:00

About a month ago, I installed this gadget on my blog called StatCounter. It is one of the coolest things I have seen in recent memory. (That's right, I don't get out much).

It allows me to see where my readers live, or least where they are sitting while they are reading my blog. I am amazed to know that there are people reading my blog in 20 states, as well as two contintents other than North America.

I can see how many old friends are reading back in my hometown.

It is such an honor when people want to read what I write. My hope is that people are learning something about autism from reading my stories about my son. I also hope I am able to convey the great joy that lies within my boy, as well as the joy associated with being his mother, even if that role brings upon challenges I didn't envision seven years ago!

I believe awareness fosters compassion, and that knowledge about autism will bring about opportunities for people who have so much to offer, even if they need some assistance in the process. I can only hope that my words about Daniel contribute to autism awareness in some small, but hopefully significant, way.

I always love to hear from readers, and I am so curious to know about the people reading from cities with which I have no connection. I have met many wonderful people through cyberspace, and I hope to meet many more. So, please, if any of you ever have thought about contacting me, don't be shy! And THANKS for reading.

Happy Birthday To ....

2010-08-16T23:25:00.003-05:00

Happy birthday to the woman who ....

inspires me to keep running (never would have done that first half-mara without her),

amazes me with her patience and sensitivity,

cries with me through the darkest hours,

listens to my endless tales of woe (and my little moments of celebration), and

helps at my son's birthday party without being asked.

Happy birthday to the best friend a gal could ever have.

Welcome to Kindergarten, Take Two

2010-08-14T00:59:00.011-05:00

My son's first day of kindergarten was enveloped in so many worries.

He is autistic. He could not, and still cannot, talk. His receptive language skills are limited.

Suffice it to say, I could not prepare him for the big day in any of the ways most moms would explore.

I had to wing it. And hope. And pray.

My mom was there that first morning. She kissed him goodbye and worried with me.

It wasn't ANYthing I could have envisioned when he was born, and life was still so .... perfect.

Now comes kindergarten-intro-take-two.

This child CAN talk. And talk and talk and talk.

I can tell her about kindergarten, about what it means to be a "big kid." I can answer her questions, or at least I can give it my best shot.

She knows how to make friends. She appreciates social norms. Heck, her mind works faster than mine does, and has for longer than I care to think about.

THIS time it should be easier, I told myself.

We pulled up to her new school today, my daughter and I, for the big Meet-the-Teacher-event.

I had explained to my daughter many times the purpose for the visit. I was glad to know that with each explanation, THIS child could appreciate the meaning of my words.

Preparation? So much easier when communication is not a problem.

RIGHT?

Ah, not exactly.

"I do not want to go to this new school," my daughter told me. "And, besides, KINDERGARTEN IS STUPID."

She refused to put on the shoes she had kicked off in the car. She refused to walk to the building. She cried as we sat on the sidewalk outside her new school -- in 100-plus-degree-heat.

Families came and went. Happy, happy families. Skipping children. La-de-da.

I sat and baked in the Texas heat, and I waited for my daughter to stop crying.

"Olivia," I told her, "there comes a time in everyone's life when they have to start kindergarten. You really are going to like it. ... You are just going to have to trust me."

"OK," she says to me, "But will you carry me?"

Rip the heart from my chest, why don't ya?

What I could have told her:

I 'd like to carry you, Olivia, I really would. You have no idea how much I would like to carry you. Because I, too, am scared. I am scared at the thought of you taking yet another step that will carry you farther away from me. I would like to wrap my arms around you so tight, tight enough that it would fix everything ... your family would be intact, your brother would talk and play with you, and every little fear that travels through your mind would become a distant memory. .. I would like to carry you, Olivia, just as you have helped carry me through some of the saddest and scariest days of my life.

But I simply can't.

Because if I carry you, Olivia, I do not pay tribute to the child you really are.

This is what I really said:

"I can't carry you, Olivia. One of the first things you need to know about kindergarten is that nobody is carried. Everybody walks."

Oh, God, please forgive me.

She got up. She walked.

But, oh, goodness, was she fearful.

How I wish I could erase all the fears.

She will walk that same path on Monday morning.

My daughter struggled today, and who could blame her? Not only is she leaving behind the ONLY school she has ever known and a core group of friends who have been with her for three years, but she is dealing with instability, and her brother's autism, and a mother who is so scatter-brained that she left her wallet in a Wal-mart buggy yesterday and in a library three weeks ago.

But Olivia will make it, despite the difficulties in her life and despite my shortcomings as a mother.

This evening, several hours after we pulled away from the building that will become her home-away-from-home for the next nine months, my daughter crawled into my lap and said to me, "Do you know who is the best mommy ever? YOU."

It is praise I don't deserve, but will gladly accept. Because I, too, sometimes need to be carried.

How amazing it is to me that I can find my greatest comfort in the arms of a four-year-old girl.

When You Don't Have the Words, Link to Somebody Who Does

2010-08-11T18:41:00.006-05:00

I am without words these days. Or perhaps there are just way too many swirling in my head.

Next week, my son turns seven and my daughter starts kindergarten.

One still does not talk. The other frequently startles me with her perceptiveness, with her amazing ability to appreciate some of the more extraordinary difficulties of life.

I currently am at a loss to put my thoughts about any of it into writing.

So, I will link to someone else's words, instead. I have mentioned before how cyberspace has allowed me to "meet" moms raising exceptional children, moms who understand what it means to truly celebrate and to truly worry. But there also are dads out there in cyberspace who can capture me with their words about their children.

Here is one of them:

http://www.hopefulparents.org/blog/author/rumhud

He writes beautifully about his daughter and about himself. And I want to pull something from one of his recent posts because it is an excellent reminder of the most important lesson I could ever learn as Daniel's mom:

... I like to believe that I mostly err on the side of overbelieving in her. I've learned that everyone needs people who love them enough to overbelieve in them.

--with thanks to Robert Rummel-Hudson

2010-08-09T22:46:00.005-05:00

Something to think about ...

http://www.dallasnews.com/sharedcontent/dws/dn/yahoolatestnews/stories/080810dnmetautism.2bda05f.html

If She Only Knew the Joy She Brings

2010-08-08T21:37:00.005-05:00

More delightful words from my daughter, who turns five-years-old next month:

"Gram," she says to my mother while looking at a picture of a mother and daughter in a book, "Where do you think the father and brother are?"

"I don't know, Olivia," says my mom.

"Maybe they went to the hills of South Dakota."

"Well, OK, maybe they did go to the hills of South Dakota," says my surprised mom.

"Maybe they went to the hills of South Dakota so they could go prospecting for gold."

WHAT??????

"Are you feeling better, Olivia," I ask her, after she has calmed down from a fit about something or other.

"Yes, Mama, I am. Only one of my feelings is still hurt. The rest of them are OK."

OH, HOW HARD IT WAS TO SUPPRESS THE LAUGH.

"Mama, I will stop being so cranky if you would just turn on a movie!!!!!" she says to me after several minutes of screaming because I turned off the DVD-player in the car so I could listen to some music.

"Well, no kidding, Olivia, I would stop being cranky, too, if I got everything I wanted, but, unfortunately, life just doesn't work that way."

2010-08-07T20:08:00.008-05:00

Another link to another autism mama. Thank goodness for the Internet for bringing us gals together.

This one is particularly poignant to me because my beautiful son turns seven in less than two weeks.

http://thisismynewnormal.blogspot.com/2010/08/seven.html

Ten Fingers and Twelve Toes

2010-08-04T22:48:00.019-05:00

Is it just me or has my blog been a bit of a downer lately?

Leave it to my daughter to brighten my world with a laugh.

If you are a regular reader, you know that during a recent visit to my hometown, Olivia took her first plunge from a springboard diving platform.

She had not been able to transfer that bravery to the city pool down the road from where we live .... until today.

I can't hang out in the water near the boards at our city pool like I can at the pool where she first started jumping, so that had been throwing her off. Even though she doesn't need me to be there, she just likes to see me waiting in the water before she takes the leap. Plus, our city pool is very busy, with dozens of kids lined up at the boards at any given time. It was a bit overwhelming for her.

But today was the day my four-year-old decided to join all those big kids jumping, diving, and cannon-balling their way into relief from this &%#@ 105-degree-heat.

She was VERY proud of herself.

As she told me, "This is the awesomest thing ever. I am going to do this all day."

After the second or third jump, she climbed out of the pool and asked me:

"So Mama, how many toes is that?"

Say what???????

I am trying to cheer her accomplishment, while keeping my eye on Daniel, who is a great distance away and who is capable of doing any number of things to cause grief -- swiping some kids' water toy, swiping some kids' sucker, swiping somebody's water bottle, you get the idea. Oh, and there always is the possibility that he might disappear from view and head out on his own to the nearby playground, and I simply don't have the time to be having a heart attack these days. So, I was a bit distracted .... what did she just say??? Something about toes?????

"What, Olivia?" I ask her, "What did you say?"

"You know, mama -- deep. How many toes deep is it?"

OOOHHHH!!!!!

"Oh, FEET! Olivia, that water is 12-feet-deep! You are jumping into water that is 12-feet-deep, which is a WHOLE LOT OF WATER!"

Oh, thank goodness for the little things that make us laugh.

Thank goodness for my daughter.

She Takes the Words From My Brain, If Only My Brain Spoke as Wonderfully as She

2010-08-03T22:23:00.004-05:00

My dear boy lost his first tooth when he was just a little bit past his fifth birthday. He has since lost three more.

There was no "Tooth Fairy" anticipation because he simply does not live in a Tooth Fairy world.

It is just one of those things that I try not to dwell on because to dwell on it is to drive yourself mad.

I don't even know what happened to that first lost tooth.
He lost it during school.
I knew it was loose, and I had been watching it for days.
I picked him up from school, and there was the hole in his mouth.

It only made him cuter.

But, wow, what a bittersweet moment.

Sigh .....

My pal, J, writes about it so eloquently, as she always does.

I couldn't have said it better myself. Seriously, I couldn't even come close.

http://rhemashope.wordpress.com/2010/07/28/of-lost-teeth-and-last-firsts/

Will You Be Sad When I Grow Up?

2010-08-01T00:16:00.023-05:00

She did it again.

My daughter, my uncomparable joy... made my world stand still for a moment...

With her words, with her sweet heart, with her amazing combination of innocence and maturity.

Tonight, after the bedtime stories, she started her usual routime of nonstop chatter and questions.

"Tell me about when I was a baby," she says to me. "And then tell me about when Daniel was a baby."

They have become every-night requests. I tell her about the day she was born, about driving to the hospital early in the morning, about being hooked up to the monitors so that the doctor would know that her heart wasn't beating too fast or too slow--something she finds quite fascinating.

I tell her how her father and I waited all day in a special hospital room--waiting and waiting for her to decide she was ready to start her new life in this world. I tell her how when she finally decided she was ready, she practically burst right into that room. The doctor caught her and held her up for me to see.

"She is a girl," he announced.

Just as I had known, I tell her, because, dear Olivia, I just knew your were going to be a girl, just like I knew Daniel was going to be a boy. (And that is no lie. Even though I had decided during both pregnancies that I did not want to know about gender, I knew. I can't explain how or why, but it was more than a feeling. It was a certainty.)

And then I tell her how she opened just one eye, and scrunched up her face in a great big scowl... how she looked all the way across the room with her one open eye--taking everything in. And then she looked all the way back across the room. And then....

She closed that eye, opened up her mouth and let out one very angry yell.

THAT is her favorite part of the story.

I tell her how the doctor wrapped her up in a blanket and handed her to me, and then I tell her what I said.

"Hello there, sweet baby. Oh, how I am so happy to finally see you."

And she stopped hollering.

(I don't tell Olivia the other words I said to her in that moment: Oh, baby, have there been a lot of people worried about you. You had us so very scared.. I can tell her about all of that--the multiple ultrasounds, the delivery being moved to a high-level NICU, the stress, worry and uncertainty--some other time, many years down the road.)

The story varies a bit each time I tell it. Sometimes she wants to know the doctor's name. Sometimes she asks how big she was. Sometimes she wants to know about the day she came home from the hospital, and about how Daniel came to see her the morning after she was born. She likes to hear about the day Daniel was born, too, about how I had to work so much harder to get him to come into this world, almost as if he were dreading what he'd find. She likes to hear about how one of her first words was "Dan-ya" and how she would scream it as she chased her brother around the house, as fast as her little legs would carry her.

I am not sure why Olivia has this desire to so frequently hear about her birth and baby days. She is delighted by it all. I don't mind telling her about it, as often as she wants to hear it, even though it fills my heart with a certain degree of sadness. Sadness, because her life is so much more complicated than I ever expected it could be... because she is living in a home with only one parent... because all the dreams I had for what life would be like for me and my young children have had to be scrapped and reworked. BUT the story also reminds me of that moment when I first held her in my arms--one of the two best moments of my life.

So, finally, here is what my daughter did tonight that surprised me so. She took me on a completely unexpected path, and made me think again about how very much she has had to deal with in her less than five-years. This was our conversation:

Mama, will you be sad when I grow up?

Well, yes, Olivia, a little bit.

I will just have to live really close to you.

Sure, Olivia, you could live really close to me. I would like that. And you know, Olivia, you can live with me for as long as you want, right?

Maybe I'll just live with you forever, Mama.

(Oh, how very sweet, I think. How darling. But even though I am taken away by the tenderness of the moment, I also think that her words are probably similar to what many typical young children say to their parents. And then I am frozen by what comes next.)

And I could help you make Daniel talk.

(There was no holding back the tears. I hate for Olivia to see me cry. It has been unavoidable on occasion during the past year, but I try so hard to keep my tears from her. I simply couldn't do it this time. They came like a rainstorm. And I tried to find something meaningful to say.)

Olivia, there are going to be so many different things you might want to do when you grow up. You might want to be a famous dancer and dance on stages all over the world in front of cheering crowds. You might want to be a veterinarian and take care of sick animals or you might want to be the person who feeds all of the animals at the zoo. You might want to be a teacher just like all the teachers you love so much at school. Or you might want to be a police officer or a singer or a painter.

There are all kinds of different things you might want to do as a grown-up Olivia, and you are smart enough to do whatever you want. I want you to do whatever it is that makes you happy.

But I sure do love how you worry about your brother.

(She stared intently as she watched me cry but didn't ask about the tears. Instead, she rested her head on my chest.)

Mama, can we snuggle?

Olivia, I'd love to.

2010-07-29T01:12:00.007-05:00

I am trying to remember what my therapist recently said about anger.

Damn it, therapy ain't cheap, and it certainly is a time commitment. I need to remember the things she says that strike a chord.

It was something about anger being a choice ... yada, yada, yada .... OK, so I definitely should be taking notes. But perhaps the gist of it was that even though we all are entitled to our feelings, and we certainly are entitled to feelings of anger when we have reason to be ticked off, the way we handle our anger is all about choices.

My anger has gotten me in some trouble this past year.

I had some mighty fine reasons to be angry.

Things were crumbling before my eyes.

I felt alone, and I felt very, very scared.

I wanted to fix things; I wanted to repair. But I felt as if my hands were bound and someone kept hiding all the tools ... or even throwing the nails back at me.

And Lord knows I sometimes swung the hammer a bit hard.

I looked for help from sources who turned out to be incapable of providing it.

I was shocked to learn that sometimes people can see someone at their weakest moments, at their most fearful ... and jump at the chance to make it worse.

Sometimes a wagging finger hurts much worse than a balled-up fist.

And what do you do with anger when, at some point -- some horrible moment that will stay with you for the rest of your life -- things seems completely irreparable?

Oh, holy heck, I am still working on that.

I am getting better at it. But I have a ways to go.

Most of all, I wish, with all my heart, that I knew how to heal the hurt that lies below the surface -- that lies below the anger.

I wish I could do that for myself ....

And for others, too.

May Peace Be With Us

2010-07-24T21:46:00.038-05:00

I am not sure how to completely make peace with autism.

I am not the same mom I was four years ago, back in the days when I would lie next to my son in his bed and pray to God to just help him go to sleep. Why did it take him so stinkin' long to fall asleep, I would wonder. After everything we did during a day -- school, therapy, swings, slides, wagon rides through the neighborhood, etc., etc. -- why in the heck was he so wired at night? It sure as heck wasn't from too much napping. My son stopped napping WELL before his first birthday. So, why, why, why would I be praying at 10 ... and 10:30 ... and 11 ... and frequently much later ... for him to fall asleep?

Some nights I was almost frantic. My baby daughter would be waking up at any moment, needing to be fed. She woke up several times a night for the entire first year of her life.

I was so tired.

If I were to get out of his bed and leave him, I would later find my son atop the furniture or -- dare I mention it -- in the middle of a poop disaster.

When he finally would fall asleep, I would look at his gorgeous face, at the extra-long lashes, at his thick, dark hair .... and I would let loose with a sob that rose up from the depths of my soul.

And I sobbed and I sobbed ... all alone. Alone, even though two children and a husband were sleeping under the same roof.

I internalized my grief.

What had I done??? What had I done to make God so angry at me that he would allow my child to have such a disability. I was too harsh, too prideful, too quick to judge. I should have given more of myself to others. You name it, I thought it ... all the reasons why it was my fault that my son had so many challenges.

Yep, I was full-out crazy.

No, I am not the same mother I was back then ... when I wondered if my son would always bite me, if he would ever be potty-trained, if I would be taking care of him until the day I died.

I am a different person than that miserable, mopey woman.

I still sometimes wonder if I will be taking care of him until the day I die. But I don't think the words with the same level of despair, even though they still weigh heavily on my heart.

I suppose I have traveled through those five stages of grief, although my path was crooked and winding, and I certainly have not unpacked my bags.

I spent plenty of time in denial. Frozen. Paralyzed.

When I looked at my gorgeous baby, I saw perfection. He smiled and laughed on-time, and his days were filled with happiness. I knew exactly what to do to get that belly-laugh out of him. He crawled and explored. Walked at 13-months and could have much sooner if he had not been afraid to let go of the furniture. He would run to me, arms outstretched, when we ventured out for a neighborhood stroll and he heard me holler his name.

I remember the mornings when I would lift him out of his crib, in the days when we finally made it past the horrible all-night colic, and, oh, how his eyes would light up at the sight of me. His little arms and legs would squirm with excitement ... all because he saw ME. It was the best feeling I had ever known.

To even THINK about the "A-word" in relation to my child felt, for such a long time, as if I were insulting him. He was too wonderful. No, it was not possible.

But something was wrong with my child. He didn't point. He didn't nod. He didn't imitate at all, a sign I know now was a giveaway. Oh, yeah, and he didn't talk.

When we actually got the diagnosis, it was not a surprise. But nor was it any kind of help.

I will never forget the developmental pediatrician -- an "expert" in the field of autism -- who spent some time questioning us and then maybe 5 minutes trying to interact with Daniel.

It was all the time she needed.

Your child meets the diagnostic criteria for autism. Good luck to you because you are going to need it. And now it is time for you to get out of my clinic, because there are many children waiting to see me, and goodness knows I was at least an hour late in seeing you guys.

OK, so those weren't her exact words. But they don't stray too far from the script -- or the feeling she gave me. Gotta love a good bedside manner.

And you can forget that "Welcome to Holland" poem they handed out. Screw Holland, I thought. Take your sentimental BS and shove it. I just want to know WHAT TO DO!!!

But nobody was going to tell me that. Because the one thing most of the white coats won't tell you is that, for the most part, when it comes to autism, they don't have a clue.

I have bounced around the stages of grief and, thankfully, I have found a way to the "other side." I can laugh at a friend's joke. I can get out on a dance floor with some wonderful friends. I can survive what has been the absolute worst year of my life, a year when my very foundation was split, cracked, and pulled from under my feet.

But peace is a relative thing, you might say.

Why am I writing all of this tonight? I am not entirely sure. But it has something to do with a woman who was arrested last week. Her home is probably about 15 minutes from my own.

I know nothing about her other than what has been reported on the news.

She is -- or, rather, was -- an autism mother.

She committed the unthinkable.

I can't even bring myself to link to the stories.

Words fail me.

Many people I know have commented about it -- about the horrible thing she did. Some of them have children on the spectrum; some of them do not. I can't help but notice, generally speaking, that the two groups have very different tones.

Even though my child is on the spectrum -- even though he is severely affected by autism -- I would NEVER suggest that I know what her days were like before she committed this horrible crime, this unimaginable sin. It appears she and her husband did not have many resources -- i.e. "money" -- and any parent of a child on the spectrum can tell you just how essential money is when you are trying to find qualified help for young children with autism. Especially in the South, especially in Texas. Did she have any help? Did she EVER get a break? Her children were young. (It is not clear whether both of them had autism, or just the older child. But either way, did she feel like no matter how hard she tried, she was never going to be able to give them both what they needed?) Were they ever even in school or was she with them 24 hours a day, seven days a week? Did cultural differences make her feel uncomfortable about reaching out to others?

Did she feel isolated? Did she feel entirely alone? Did the stress and the exhaustion and the hopelessness take away every last bit of her sanity?

I am so sad to know that this mother was so desperate, so depressed, so lonely ... and that she lived in a city bordering my own.

It is nauseating.

Yes, I have made some peace with autism.

But I could do so much better.

It is a daily struggle to be all that my child needs. I always feel as if I should do more for him.

It is a CHOICE to find happiness, in whatever ways I can, and it would be much more difficult to make that choice if it weren't for the support of so many mothers who are there to listen and share. Mothers who can understand because they know what it means to REALLY worry about a child.

May God, in whatever form He exists, bless the little souls of those two children. And may He guide us all to the ones we need in our darkest times -- to the people who will keep us from drifting deeper into isolated waters, to the people who will help carry the weight of our sorrows when our backs are close to breaking.

To the Gals on the Dance Floor

2010-07-19T22:00:00.008-05:00

When does an old wound really start to heal -- the kind of wound that is open, deep, and wrapped around the heart?

I am not sure.

BUT I know what helps to heal the human spirit.

Five BEAUTIFUL friends, all of them mothers, all of them amazingly strong and smart, who worry about your pain and your stress, and who manage to make you laugh in the worst of times.

Women who talk, and laugh, and share the stories of their lives, before hitting the dance floor and letting loose.

And, what do you know??? I am discovering that letting down my hair and staying out well past the hours I'd normally crawl into bed also does a heck of a lot to uplift my weary soul.

Thanks, ladies, for a VERY fun night.

Thanks for your friendship.

I don't know how I would have gotten through the past year without you.

Happy Birthday, Dear Mama

2010-07-13T22:47:00.017-05:00

I am now officially closer to 40 than 30.

Yipee.

Monday was the big 35.

What a hell of a year.

Last year my birthday was not so great. And, then, less than two weeks later, I found myself staring at the back of my spouse's head as he left for a hotel.

Staring... and sobbing.

So, anyway, another year gone and another year older.

This is the way my day started:

My beautiful four-year-old daughter woke up in the bed next to me. (She slept in my bed because my parents were in town visiting and were using her room.) The first words out of her mouth were, "Good morning, Mama. Is today your birthday?"

"Yes, Olivia, it is."

"Well, HAPPY BIRTHDAY, MAMA," she said to me, as she wrapped her arms around my neck. And then she burst into the Happy Birthday song.

What did it matter what happened during the rest of my day????

What a gift.

In the evening, I enjoyed a homemade lasagna dinner, courtesy of my mother. And then my children gathered around the cake as we lit the candles.

My daughter sang a second time.

My son cannot sing the words. But he was so very, very excited about the whole thing.

I got him to say "mama" after everyone sang.

And, he was THERE.

Both my children -- my sweet, gorgeous children... And both my parents -- my devoted, giving parents...

They were all there to celebrate the fact that I was another year older -- that I have survived one hell of year ...

and not only have I survived, but I can still enjoy the cake. (Not a small thing to say, given that there was a period of time last year when I couldn't eat.)

This weekend, some fabulous gals are going out with me to celebrate the fact that I am 35 and still standing, even after this hellish year.

I am so lucky to have these people in my life. I will never overlook how wonderful it is to have people in my life who bring laughter to my worst days.

That is what 34 taught me.

Wisdom Beyond Her Years

2010-07-09T23:32:00.016-05:00

A conversation I had with my four-year-old daughter, Olivia, while we watched her brother swim:

There are some people who cannot talk, Mama.

Like Daniel.

And some who cannot see.

And some who cannot hear.

There are people who cannot walk.

And there are people who cannot move their arms.

(What a surprise that last one was. I have talked to her about any number of differences in people. But I am not sure if I have ever mentioned paralysis. Of course, it only takes Olivia one time to hear something, and she remembers it forever.)

But, mostly, there are people who cannot talk.

(Well, who knows how the numbers stack up? I imagine the number of non-verbal people is far surpassed by those with serious vision and hearing impairments. And I'd guess, too, that there are more people with paralysis than those who are non-verbal. Not really sure, though. And I'd never get into such specifics with a four-year-old. I just wanted to listen to where she was going next. Oh, and she REALLY DOES talk this way. Maybe that isn't all that impressive to those of you who have only typical children, but it is incredibly amazing to me.)

Are the words just locked inside him, Mama?

Yes, baby, they are.

Are they locked really, really down deep? Like behind a gate?

Yes, baby, I think that is a good way to think about it.

But, WHY? Why are they locked up so tight?

(Oh, dear God, nothing ever prepared me for this. Nothing. How do I answer her? Yet the one thing the past year has taught me is there is not a lot of time to think when you come face-to-face with realities for which we have no way to be prepared. You either run away, or you stay and do your best and pray that you don't screw up too badly. So, I gave it my best shot...)

Well, Olivia, I don't know for sure. But, for some reason, Daniel can't get the sounds to come out the way he wants them to. He would like to. And it is really frustrating to him because he can't. Just like it must be frustrating to people who can't see or hear or walk. It isn't fair. And I don't know why it happens. But I know that people who can do those things easily, people like you and me, have a very special job. I believe God wants us to help all the people we meet in our lives like Daniel.

(I don't talk to my daughter very much about God. Insert Catholic guilt right H-E-R-E. But I do on occasion. And it is instances like these when I am most apt to do so.)

I help Daniel.

Yes, you do, baby. (And in more ways than you can appreciate at your tender age.)

Like, when we are riding in the car, and we pass something, I will say, "Look Daniel, there is a truck. Or there is a tree."

Yes, baby, I hear you talk to him about the things you see. But I think the biggest way you help him is with all the things you do that show him how much you love him. Like when you run after him when you think he is getting too far away from us. And when you give him big hugs and kisses. And when you notice what makes him happy and try to make sure he gets those things.

And you help me, too, Olivia. Every time you make me laugh.

Daniel is so very lucky to have you as a sister, and I am so lucky you are my little girl.

Daniel is my very favorite boy, Mama.

I wish I had a key to unlock that gate.

Me, too, baby. Me too.

Thank you, dear J

2010-07-09T22:54:00.012-05:00

I have no idea if I ever will be able to make sense of my life, or of life in general.

But there have been people--people with no obligation to me or my children--who have been incredibly kind.

Every time I drift into deeper waters, one of these people pulls me closer to shore.

One such person, a mother whom I met through cyberspace, called me a few nights ago. We have corresponded via email many times. But we had never before spoken.

She, too, has a child with autism. She, too, has a younger child who fills her days with laughter--and drama.

She, too, is trying to take care of her children by herself. Her husband is in Iraq, trying to help the people of that country rebuild their lives.

Rebuilding lives ... It is easier said than done.

This woman is amazing.

The way she describes her children captures me.

She is an inspiration.

And so I leave you with her words. Take the time to read them. You will be glad you did.

http://rhemashope.wordpress.com/2010/07/09/clap/

To My Friendly Neighborhood Homeowners' Association

2010-07-09T00:17:00.002-05:00

Yes, the grass in my yard is getting high. And I don't use the edger every time I mow.

I will get to it. But, thanks ever so much for your concern about my grass.

In the meantime, I'd tell you to BITE ME, but I'd fear the possible resulting infection.

Oh, Brother

2010-07-06T20:31:00.009-05:00

I am an only child. It has its benefits. But I think I would have preferred having a sibling -- assuming the sibling wasn't some sort of jerk, of course.

Growing up, I thought it would have been especially nice to have had a brother. Something about the idea of an older brother appealed to me -- a confidant who would share his innermost thoughts and shine light on the mysterious workings of the male mind. (Yeah, right. But it was a nice thought back then.)

Now, I wish I had a sibling for entirely different reasons. Mainly, I wish my parents had another child who could balance out the worries I bring to their lives --someone with a relatively smooth-sailing-life and perfectly typical children. And, there is the problem of who in the heck I could name as guardians in a will, but, holy crap, if I think about that I will have to open a bottle of wine.

So, all of that being said, I just have to take a moment to note the evening I spent last weekend with two great "old" pals. I went to pre-K with one, and to Kindergarten with both. We grew up in the same little suburb and went to the same schools all the way through high school graduation.

They are a couple of great guys. Smart, sweet and sincere.

As I ate ice cream with them outside the Cold Stone Creamery last Saturday, I listened to them talk about the circumstances of my life and couldn't help but think that this is how two brothers would probably talk about me. For a moment, it was as if they had even forgotten I was sitting alongside them.

"Whatever she does," one of them said to the other, "she has to make sure she protects herself."

"I mean it is not even like she can go out and work a normal job," the other said. "She has a kid with all these special needs."

I was lost, for a moment, listening to them. It is not like I have seen them much in recent years. But they learned about the stress in my life and both reached out to me.

And then one of them said to me words I never will forget.

"I would just hate it, Leah, if you had to go through all of this again -- if you were hurt again."

They are good, genuine guys, and I am so very glad to know them.

I would have loved to have had them for brothers.

Thank goodness they are my friends.

Staying Connected

2010-06-27T13:29:00.010-05:00

I had to take a trip last week to the city where I once lived with my family for more than seven years.

I worked two jobs, made some wonderful friends, and had some great neighbors there.

I gave birth to my children there.

I left that city not even three years ago. Not that long ago, really.

Yet, as I drove those streets, those same streets I once drove every day ... I couldn't feel a connection.

I sat in the same lecture hall where I studied all those weeks for the bar exam. Was that really me? Did I really do that? When was all of that, anyway? I can hardly remember.

I walked through a shopping center where my son's former favorite restaurant is located. We went there weekly, my family and I. My son would watch the servers walk by with the pizza pans and crane his neck to see if someone was carrying his favorite, the kind drizzled with cinnamon and icing. I can picture my daughter in the restaurant high chair, with the little purple bib around her neck, munching on cheese sticks and staring in wonder at all of the people.

I can see the images of my children in that restaurant. But where are the other memories? Have I lost them just like I have lost so many other things in the past few years:

the dream of "normalcy" for my son,

the dream of a relatively easy childhood for my kids,

the dream of a partnership I believed to be unbreakable.

I returned, briefly, to the old neighborhood. I looked at the houses lining the road to my old home. I looked at the cul de sac where my son learned to run. I looked at the old house, with the big window in the room where my boy once slept, and the fence around the yard where our beloved Socrates is buried.

Why does it feel so much like something I saw in a movie or read about in a book?

Where is the connection?

Nothing about my life this past year has been anything I ever could have imagined. Nor would I have wanted to. It has been pretty damn terrible. And, yet, there has been some real happiness among the fears and worries.

I doubt I will ever look back on the past year and not be able to remember .... the depth of the lows .... and the depth of my love for the people who were here for me.

My life has been turned upside down. And, now, weirdly enough, it is being moved to its side. I am not at all sure what life has in store for me in the near future. I quite literally am living in the moment, not thinking much beyond today and the next few days.

It is not a particularly fun way to live, but it is something I have grown accustomed to.

There was a moment yesterday, at a birthday party for one of my daughter's classmates, when I was surrounded by three beautiful women, all of whom I consider friends. We never have much time to chat. Unless we are COMPLETELY away from our children, which rarely happens, we have to steal the moments to talk about our lives. They know that the past year has been hell for me. They listen with their hearts. They wonder about my children and how they are handling things. They make me feel as if, no matter what answers I come to with respect to the big questions in my life, they will not judge.

They provide me with a wonderful sense of .... connection. The best kind of connection -- not associated with any town, or neighborhood, or even a house, but with true, genuine feelings of friendship -- the kind of connections that truly are unforgettable.

Animals aren't lining up two-by-two, but perhaps it is time to build an arc

2010-06-18T12:27:00.015-05:00

The Texas skies are sunny.
The air is hot.
My yard is dry.

But my carpet, on the other hand, is very, very wet.

Oh, autism, what you bring to my days .....

I've mentioned my son loves water. In one way, that is a blessing. He taught himself to swim at a very early age. He likes to swim along the bottom of pools, as if he is escaping from the chatter, noise and madness above the surface. When you watch him, and how he glides so effortlessly, he looks more like a marine animal than a kid.

It is fun to take him to water parks -- although it is a lot of work, too. He doesn't naturally appreciate the rules that go along with pools and water slides, so someone needs to be fairly near to him at all times. If he wants to go down a slide, an adult MUST be with him; otherwise he might unintentionally break in line or start to slide as soon as the person in front of him has taken off, instead of waiting for the lifeguard's OK. He also might turn to swim back to the end of the slide, so that he can watch the water cascading into the pool. And, boy, does THAT drive the lifeguards mad.

He also must be monitored at diving boards. He is getting better about the waiting-in-line concept, but still needs practice. He gets so excited every time he breaks the surface, that I still feel the need to remind him to "SWIM TO THE SIDE, Daniel!!! NOW." Otherwise, he just might hang out under the board, prompting any number of whistles from lifeguards and shouts from kids waiting their turns.

(Note to lifeguards: when there is a parent on top of things, DON'T BLOW YOU WHISTLE. I know it will be hard. That whistle is, like, really cool, for wicked sure. And I know this job probably represents the most authority you have ever had in your 16 or 17 years on this Earth, but, please, realize that your whistle is stinkin' annoying to the mother twice your age, and with 1 million times the life experience, and give it a rest.)

Ok, so he really likes water. Really, really, really.

Some of you autism mamas probably know where I am about to go with this.

Sinks are my son's friends.
And my enemies.

He stops them up, turns on the water, pours in anything that might produce bubbles, and well, ...... sometimes FORGETS to turn the water off.

It was a problem I THOUGHT we had nipped in the bud several months ago.

But it recently re-emerged.

A few days ago, a kayak could have floated through my bathroom.

All I did was take a few minutes to color with my daughter. I forgot the door to my bathroom was open. (I have one of those "child-resistant" door-knob covers on the outside knob, just for this reason. My daughter can pry them off, but even my four-year-old girl appreciates the reason it is there.) Who knows how much time passed -- how much time does it take to flood a bathroom???? I walked into my bedroom, heard the sound of running water, and raced back to find both the hot and cold faucet-heads running full blast, and water was EVERYWHERE -- cascading off the countertops, flowing into and back out of the bathroom cabinets, and seeping into the carpet in both the bedroom and closet.

Water, water EVERYWHERE. (You guys probably know the Baby Einstein line, right?)

So, add to the list of things I have done for the first time since starting this single-parenting gig. I busted out the Shop Vac and fired that baby up. (Yes, I know, how does a woman go 34 years without using a Shop Vac, even if she is married? Well, I did, OK.) It sucks up water very nicely. But when there is enough water on your bathroom floor to fill up a kick-ass children's pool, it takes a while.

And, the carpet?????? Shop Vac, towels, fans, you name it -- I used it all. And it was still a full day before the carpet was completely dry. So, I can probably add household mold to the reality that is my life.

Before you write to me, know that I have learned my lesson. The stoppers have been removed from my sinks.

Want to know the BEST part?????????????????????

As I was cleaning out the soaking cabinets, I discover rodent poop.

Yes, there is a rodent in my house.

Is somebody screwin' with me????? Cause sooner or later, this life of mine might get to be a bit much. But, surely, just as soon as I find that critter in the traps now lining my bathroom.... surely that will kick-off a string of good fortune. Surely.

2010-06-13T22:58:00.003-05:00

Damn it, I am one horrible mess. Damn it, am I screwin' things up bigtime. Damn it, I don't know if there ever will be a sense of normalcy to my life. Ever?????

So, what else can I do but remember some of the things my daughter has said to me lately.

What do you think it feels like to be a baby in a mommy's tummy?

Mama, I am sooooo thirsty. I feel like I have been walking through the desert.

Mama, I am so very thirsty. I really need a drink. I don't want to die!!!!

I want to have Adrian, Dominic and Cassie over to the house to put on a play. The living room will be the stage. But there won't be an audience because I don't want anyone to get fright stage.

Mama, do you know what makes me happy? YOU DO!

Chocolate chips, cheap wine, and a big ball of poop

2010-06-13T00:02:00.010-05:00

When you cap off your night with two (maybe three???) glasses of Merlot and a bunch or raw chocolate chip cookie dough, chances are the day has been rough.

Autism. Really. Sucks.

And my rose-tinted glasses are frequently cracked.

Some days, they simply cannot be found. And I don't even bother to look that hard.

Why did autism suck today, you might ask????

Well, there were the typical, every-day reasons. My son screamed in frustration about something that still is a mystery to me. He carried out his current stim with just as much intensity as he did the day before. I literally had to sit on him in order to cut his toenails.

And, for some reason, for the first time in, well, a long time, he pooped in his pants.

His swimsuit, to be exact.

At a city pool.

Thank GOODNESS (I won't say "God" because I am not in the mood to bring God into any of this), he was OUT OF THE POOL. And I noticed it as soon as it happened.

But when the "bright side" of things is that you didn't have to tell a life guard to clear the pool on account of your six-year-old's poop ...... well, is there REALLY much of a bright side?

Oh, and let me not forget, I was at that city pool with my autistic son, and my four-year-old daughter, and well, NOBODY.

My son has done great taking himself to the potty at home since we really hit the potty-training business just after his fourth birthday. And I am so glad. But, STILL, STILL, I can't count on him to communicate the need to go when we are out in public.

And the kid is a pee fountain.

I take him to pee more frequently than a chain-smoker lights up.

We had been doing so well with not having accidents, until recently ....

And when the accidents start, they seem to come in big numbers.

But, REALLY, POOP???? And at a pool????

I am Ms. Automatic-pilot when there is such a situation. I am not good at many things, but if there is an autistic child with a poop crisis in public, I am your girl.

So, when I saw the face, and confirmed the existence of a wet, messy poop, I just went into action.

I took both kids to the bathroom immediately and got my son to the potty where he finished his business. I checked out the swimsuit and realized it was NOT worth saving. Good-bye new swim trunks. I cleaned up his messy bottom and took him straight to the shower, where I scrubbed the both of us down with soap as if we were about to perform surgery. I went back to the bathroom stall and cleaned up the toilet. And, because all of the spare clothes for my son were in the car a good distance away, I let him wear my tee-shirt. (I had my swimsuit on, people, so don't get any ideas).

It was all a pain.
A great big pain.
Shouldn't we be well past this?

I certainly let my son know just how unhappy I was with the circumstances.
He wasn't very happy either, my poor boy.

It makes me frustrated.

And it makes me sad.
Sad for me, because, yes, I sometimes allow myself a bit of self-pity. I had no idea this would be what I was in for when I first learned I was pregnant.

Sad for my son, because, after all, he deserves the most sympathy. He is the one who struggles to understand this world, and without the benefit of ANY language.

And sad for my daughter, who sat through this whole ordeal on a bench in the bathroom by herself.

She is plenty old enough to understand that her brother should not be having these problems.

She is sophisticated enough to realize that her mother is S-T-R-E-S-S-E-D. And, that, in turn, brings stress to her life. She actually worries about me. My four-year-old daughter worries about me.

Oh, lord, just pile it on.

I am so very, very sad for my daughter because there are many moments in her life, just like this one today, where she sits or stands alone, waiting .... just waiting.

Waiting for me to tend to her brother's problem, need or outburst.

Waiting for me to prompt whatever form of communication I can get from him, even if it is just eye-contact, a nod of the head and a "yeah."

Waiting for me to finish working with him -- because I feel so much guilt if I don't spend at least some time trying to help him accomplish something, even if it is as simple as focusing on a puzzle.

It simply is not fair. There should be someone else on the scene. Someone focusing on her. Or sharing the responsibility of focusing on her brother so that I can sometimes get to focus on her.

Oh, how I would love to just focus on her.

But, even when I get a moment to do so, I am so tired.

So very, very tired.

I am not what my kids deserve.

Either one of them.

And I just don't know if I ever will be.

I have my doubts.

But, man, can I clean up the poop in a crisis.

Is there a career in that, by the way, because I sure could use a job.