Realizations.

When my son was first diagnosed with autism, I remember how that really dim lightbulb in my head brightened a little.  I realized many things about him that I had not really thought about with the connection to “autism.”  His very few words.  His meltdowns.  The need to repeat things to him over and over.  His repetitive speech.  I still did not understand autism – at all.  I’m not sure I do much better right now, but at least, I’m trying.

My son is, for all intents and purposes, an only child.  (He has adult siblings who have not lived with him on his dad’s side).   I am an older mom.  I have no siblings.  Before my child was born, absorbed in the practice of law, I had no close friends with young children to whom I was exposed regularly.  Basically, I was completely ignorant of how a young child should talk and act and behave.  So, I was very ill-equipped to understand my own child’s differences from others.

One of the things that came with the diagnosis was that the hyper-focus I’d had on my son, to the exclusion of all others, changed.  I liken it to me being an intense, zoomed-in camera.  When the diagnosis came, my focus widened a bit.  I zoomed out.

I saw the children around my son for the first time.  Children who could communicate with ease.  Little people, they were.  They could speak in complete sentences.  They could express thoughts fluidly and quickly, like an adult.  They would talk about what they wanted.  They would communicate concepts like “good” and “bad” with ease.  They would categorize themselves.  They would show-off and seek their parents‘ attention.

When I first really saw that, it broke my heart.  I longed for my son to be able to communicate like that with me.  Don’t get me wrong.  We have our own way of communicating.  It does not always involve words.  It involves trial and error.  Patterns established after painful missteps that resulted in meltdown after meltdown.  Sometimes, I feel like I’m walking on glass shards.

One of the more painful things I recall vividly, shortly after the diagnosis, was when I was just trying to get through a mall trip without a meltdown.  I was tense, holding his hands, trying to avoid any triggers and get out.  We made our way to the top of an escalator.  At the top, was a tiny little boy.  The kind of little boy whose butt is extra padded because you know he’s got quite the diaper on underneath.  He was half my son’s size.  He was probably no more than 2 years old.  And he was at the top of the escalator.  He was with his dad, looking down through a glass railed area on the second floor.  His mom was down there.  He said, “Daddy, look!  Mommy’s down there.” And he pointed.

It was at that moment that I realized that never, in four years, had I ever heard my son get my attention by using the name, “Mommy.”  He had never said, “look” to direct my attention to anything.  He had never tuned in to spot me in a crowd or point me or his dad out to anyone.  If anything, he would focus on an object to the exclusion of all other things – and certainly, people.

In that moment, I realized I might never hear him say, “Mommy!  Look!” and I resolved myself that it was simply the way it was.  That was a loss -to me- not to him.  In that moment.

That was over a year and a half ago.

Over the last week, he was playing Wii games.  Lots of Mario time.  Lots of PacMan time.  And over and over, my son said these words to me:

“Mommy!  Watch me!”

In that moment.  Just like that.  Times 100, at least.

As parents, we try so hard not to see the differences – not to make the comparisons, but we can’t help it.  Sometimes, it smacks you in the gut and knocks the wind out of you when you don’t see it coming.  And sometimes it is depressing.

So, if you accidentally get socked in the gut sometime, and feel down, remember this story.

And, by the way, thank you Nintendo and Namco.  You brought me a gift this year you never knew about.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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17 Responses to Realizations.

  1. WOW! That is HUGE!

    I am seriously doing a little Nintendo happy dance of joy!

  2. kcunning says:

    Another benefit of video games: They’re something normal for him to talk about.

    My son was fixated on production companies. He knew them all, what movies they put out, the slight variations in their branding, who they paired with. No one wants to talk about that. No. One. Video games, though, are fertile ground for conversation. Even better, they lend themselves well to the quirky focus of an Autistic person’s viewpoint. They found a way to do slightly better at Mario Kart? Everyone is listening!

    • solodialogue says:

      I can see how your son’s interest in production companies might be quite useful in the right setting, just not with other 5 year olds…

      Yes, I can totally see how the video game interest will serve him well if he gets the “art” of conversation a little bit. Right now, he knows how to work the controls but when you ask him how to play, it’s very scripted, i.e., “first you turn on the Wii, then you play the Wii, last you turn off the Wii…” When he can communicate tips on play, that will be an accomplishment!

  3. Lana Rush says:

    Karen – I’m so happy for you!

    And a little jealous, I’m not ashamed to admit. I am praying for the day that Lily calls me Mommy. Or Mama. Or Mom. Or even “Hey Lady who feeds, clothes, and cares for me!”

    Words. I want words.

    So thanks for sharing your good news, Mommy – stories like this give me hope! Love that T!

    • Lana, I’m praying for words for Lily. For you. 🙂

    • solodialogue says:

      When she is good and ready, she will bring you that joy. I can feel it. And even while she can’t, I know she is getting her meaning through loud and clear – look how you were in that game room for Christmas and she demanded to go back downstairs. (And btw – there is plenty of T to go around for all the girls, LM and Lily! ;))

  4. blogginglily says:

    I love the the “watch me” part almost more than the “mommy” part. He’s proud of himself. he wants to show off for you. . . nice self esteem, buddy! Good for Tootles!

  5. Kelly says:

    What a poignant, beautiful post. I am so, so happy for you. And so proud of Tootles. This is the good stuff, right here. So happy you shared. 🙂

  6. jazzygal says:

    That’s one giant leap forward for your boy 🙂
    Your story sounds similar to how we were when my boy was 4 years old and we got our ASD diagnosis.
    Now he’s 12 and has fully integrated into mainstream education! Oh, and he’s addicted to Xbox (initially to Wii!) and games on laptop!

    xx Jazzy

  7. Karen,
    Thanks for sharing this- I needed it today. Even though my son has spoken in sentences since before he was one, there are so many discouraging things that occur or don’t occur every day for him- so many times I feel that punch in the gut and wonder if things will ever get “better”. I’m so happy for you in this gift!

    (also, I’m adding you to my “favorites” on my blog since I can’t stop reading!)

    • solodialogue says:

      Thanks Suzanne! Sometimes, a good true story of a new skill does give us hope! I often look to my bloggy buddies for inspiration and comfort. We can all use it. Soon, you will have that perfect new place for your son to play – tomorrow will be better! 🙂

  8. Broot says:

    Yay!! Now you can join the dubious honour of us with NT children getting sick of hearing “Mummy! Mummy! Mummy! Mummy! Mummy! Mummy!!”
    “What?”
    “Nothing.”
    [pause]
    “Mummy!”

  9. eof737 says:

    Glad to read another post from you again and to hear about Tootles progress… Admirable on both accounts. TY!

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