December 6, 2011

Raindrops Keep Falling on My Nikes

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.

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.

November 24, 2011

To Josh, from Round Rock

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. ;)

November 22, 2011

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?

November 15, 2011

My Visit the Second Graders: Part Five

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.

November 2, 2011

My Visit with the Second Graders: Part Four

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:


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

October 23, 2011

My Visit with the Second Graders: Part Three

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?


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.

September 15, 2011

Second Graders, Here I Come

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.

September 5, 2011

Breaking the Seal

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 ....


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.

August 26, 2011

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.

August 17, 2011

The Friends We Choose

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 ...


July 12, 2011

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.

June 20, 2011

Fourteen Years

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.

June 18, 2011

My Dad

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.

May 24, 2011

El Baile de la Ranita

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.

May 13, 2011

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.

April 25, 2011

Capturing Lily

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 ......?


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.

April 14, 2011

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.

April 3, 2011

Talk to Me

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.

April 2, 2011

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.

March 14, 2011

Brave Like Daniel

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

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


March 13, 2011

From The Boston Globe and Parade magazine

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

February 28, 2011

Just a Boy

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.

February 17, 2011

Rick Perry's Bullshit

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.

February 6, 2011

Off With the Cast, Into the Chlorinated Water: Hallelujah

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.

January 28, 2011

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.

January 18, 2011

My 25-Cent Take on Prayer

"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.

January 17, 2011

My Daughter, My Foundation

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

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.


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.

January 13, 2011

Shine a Little Light

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.