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:

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

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

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

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.

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

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

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.