Thursday, September 20, 2012

Bubbles and Baby Steps: A Story of Autism and Joy

If I were to have to pick the one thing that is absolutely unique to being a special needs parent, it would be how the little milestones creep up on you, overwhelm you, and leave you filled with gratitude for the wonderful gift your child was just given.

It was a Wednesday - an ordinary Wednesday that was desperately needed in our household.  We were coming off of a week filled with a sibling's wedding, which meant extra social demands and scheduling changes for my boy.  We had a meltdown here and there (who knew that barely audible church bells would cause such a sensory reaction?), but all-in-all I called it a victory.

Wednesdays are always a two-therapy day in our house, with back-to-back speech and OT.  Honestly, Jack's schedule is so jam-packed that one day has to be the sacrificial lamb of over-scheduling.  Wednesdays just happen to be that day.

We entered the clinic with little fanfare, which is a positive in and of itself.  Jack's SLP comes out to get Jack, but his reaction isn't ideal.  He doesn't scream (another plus!), but he doesn't exactly engage, either.  He doesn't respond to her prompts for a greeting and keeps his back to her as she suggests all of the wonderful things they might do in the therapy gym (Swing!  Slide!  Crash!) and Jack reacts negatively to each (No!  No!  NO!).  His attention is off and he's struggling to listen to his therapist - nothing new, really - but I'm not hopeful for a productive session.

I spend that first hour catching up on emails, catching up on blog posts, and all of the daily management tasks that the wedding placed on the back burner.  In time, I look up to see Jack's SLP standing in front of me.  She says he had a rock star day.  Ever the optimist, she always says he's had a rock star day.

It's the account she gives that takes my breath away.

First, some background; my son was - for a very long time - unaware of children in his space.  Even now, his awareness wanes.  He seems to be able to have some awareness of other children when he's a distant observer, just watching what they do.  He'll even smile while watching their antics.  However, when a child gets too close, he shuts down.  He's been hit and toys have been taken from him all as he stands non-reactive to child who is assaulting him.  It's as if other children are fascinating creatures to be studied from afar - their movements watched at a distance - but they are too erratic, too unpredictable, too uncontrollable to engage with further.  His tendency is to shut down.

In fact, each evaluation and re-evaluation Jack has had says the same thing:

Jack has yet to be observed to spontaneously initiate interaction with a peer.

Until today.

Jack came into the therapy gym and engaged in a brief sensory-motor activity with his SLP, as is the norm before the onslaught of feeding in the second half-hour of their session.  As his SLP was preparing for the next activity, he saw another little boy and his OT in the gym.  This little boy, who is just a few months older than Jack, was engaging in one of Jack's favorite activities - blowing bubbles.  It's an activity we do often with Jack during our in-home Floortime sessions.  Jack cannot blow bubbles himself, so it's an ideal activity to illicit some circles of communication (for those of you Floortime folks out there).  Jack's tendency would have been to hang back, flap his hands, and watch the bubbles from afar.

Until today.

Today, he toddled over to the other little boy, looked him right in the face, and said "bubbles".  The other little boy was more than happy to indulge Jack in his desire for more bubbles and Jack was the gleeful recipient of a bubble blast.

That little exchange might not seem so Earth-shattering to the average person, but it moved mountains in our world.  My boy just spoke to another child - unprompted - for the first time ever.  He initiated interaction with another child.  He was so motivated by blowing bubbles - one of his absolute favorite things to do besides play with letters - that he spoke to a peer.

Honestly, I don't know if he was requesting bubbles or not.  He's a big labeler, so he would be just as likely to label them as bubbles as to request them, but really both the request and the label sound the same - "bubbles".  I really could have cared less what Jack said to the little boy.  He could have said "Super Why!" for all I cared; the important thing was he said something - anything - while looking at another child.  He said something directed to another kid.

So there I sat listening to Jack's SLP convey the absolute beauty in this exchange, and the tears began flowing freely.  I felt self-conscious at my own outward show of emotion, but she gets it.  She's seen Jack struggle and she gets how significant that one little word truly was.  It was a word - an interaction - that has been so hard fought for and has involved the sweat and tears of so many.

I convey how difficult this past couple of weeks has been.  How I've seen other children - even other special needs children - my boy's age or younger who were doing so much more, who were interacting with other children and far, far more verbal.  It is in those times that fear creeps in.  It's that same fear that I felt when I first heard the word "autism" as a diagnosis for my boy more than a year and a half ago.  More so than any of his other diagnoses, it's the one that broke my heart initially.  My heart broke because I feared that my angel, who I think is the most wonderful person on Earth, would never have a friend.

It's that same fear that gets fueled when I go to pick my boy up from school.  I look over on the playground and see him opening and closing the play house door or the lid to the play plastic grill while the other boys are riding around in a pack on Big Wheels or playing together in the sandbox.  He's alone and content to be that way, but alone.  It doesn't hurt him, but it hurts my heart.

So on this ordinary Wednesday the extraordinary occurred.  It occurred in a clinical setting in a sensory wonderland, but it occurred.  My boy made his very first attempt to reach out to another child and the tears of gratitude flowed from my eyes.

When my boy came out an hour later with his OT after having a bit of an episode during his session, I temporarily blocked out his OT's reports on the fine-motor struggles and behavioral issues to give my baby boy a hug and a simple acknowledgement of exactly what he had done...

I am so proud of you.

And I was.  I am.  I am prouder of my boy than I can possibly express.  I don't know what the future holds for my boy, but it's these little milestones - these glimpses of progress that are fought for by so many, including my boy - that fill my heart not with fear but with joy.  Overwhelming joy and hope.

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3.5-year old little boy on the autism spectrum.  After her only child was diagnosed at 24-months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  To follow more of her ramblings, like her on Facebook!

1 comment:

  1. You are so right, the little milestones are huge in our world. Loved your post.. and I have a big smile on my face.