September 28, 2011

Say it Like it Is

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 8:13 pm by autismmommytherapist

“I’m gonna BEAT you!” my youngest yells as he quickly surpasses me on the stairs, fast-walking because he knows he’ll catch holy hell if he runs. “I have no doubt you’re right, Zach” I reply, because he’s about a century younger than me (some days it feels that way), and because I’m exceptionally tired today. I turn slightly on the step and see my husband haul Justin over the gate we’ve put up to at least slightly hinder his frequent escapes upstairs, and receive an excited kiss from my eldest as he happily ascends. It’s Zach’s most mercurial time of day, and Justin’s best. My eldest boy loves to sleep. He is so clearly my child.

My husband hands me a pile of laundry that didn’t quite make it to the second floor, then casually says, “Hey, I forgot to tell you what Zach said at dinner last night when you were out. He was talking about the ‘Island of Sodor’, then out of the blue he just looked across the table and said ‘Justin, I’m sorry you can’t talk’, and then stuffed a chicken nugget in his mouth”. Jeff looks at my face as I clutch small socks and underwear tightly to my chest, frozen in the moment. He realizes he has greatly underestimated my anticipated reaction as I feel my face redden, and my eyes fill with tears. I can see he’s regretting having told me, and I assure him I’m glad he remembered (I’m not sure I would have retained that conversation for twenty-four hours these days), and make a valiant attempt to get it together. There are after all baths to be drawn, stories to be read, and particularly in Justin’s case, a voluminous amount of hugs to be administered.

In other words, it’s not a good time for mommy to have a moment.

I’ve written before about Zach starting to make connections as we’ve been talking more and more about autism together, what it is, what constitutes the different types, and most importantly to him, how it affects his big brother. He is definitely processing our discussions, because comments about the disorder crop up out of the blue, sometimes in a seemingly random fashion. When we’ve been out in the community, he’s occasionally asked me if little kids who weren’t talking yet had it. After assessing the toddlers’ eye contact capacity, coupled with the amount of pointing going on, I assured him they probably didn’t, were in fact just too young to speak. On another occasion, he asked if two boys getting off the school bus in front of us were brothers, and when I said they might be, he asked which one had autism. Then, of course, there was his declaration of “You have autism just like Justin!” to my friend’s son at our most recent POAC (Parents of Autistic Children) event, which in fact is true, and was thankfully met with a response of “you’re right!” from the family.

Perhaps working on when it’s okay to talk about this should be our next goal.

I know these moments are going to come up more frequently, particularly as Zach is beginning to leave those “running scripts” behind, and engage more often in real dialogue. I’m glad he’s comfortable talking about it, grateful that he feels compassion for his sibling even at the tender age of four. I’m  also thankful that he doesn’t view autism as a negative, just something that at this point differentiates people from one another, those who have it from those who don’t. At this point, when asked, he’ll say “autism means you can’t talk and it’s hard to make friends”, a definition which clearly does not encompass everyone with the disorder (and really, what definition does), but is a perfectly adequate description for a pre-schooler to call his own. We will enrich and enlarge it over time, as he matures and is capable of comprehending the many layers that entail an ASD.

After all, we still need to have the “autism talk” with him too.

A pair of socks slips to the floor, and as I reach down to claim errant cotton, I ponder for a moment what I would have replied had I been home. I hope I would have complimented Zach first on his kindness, told him how sweet he was to have comforted his brother. I would have reminded him that on occasion Justin does “talk” to us with his iPad, generally to ask for food or toys, much to the delight of his younger sibling who loves to hear that slim black rectangle speak. I believe I would have shared with him that sometimes communication transcends words, as when his big brother not only permits his hugs but gently returns them, or ruffles his hair when he finds Zach’s antics particularly droll.

I hope I would have had the presence of mind to say it’s okay to be sad that Justin can’t talk, and that sometimes I’m sad about it too. I hope I would have reminded him that the important thing is we all love each other, no matter what.

My husband and I trudge upstairs together, him glancing back somewhat anxiously to take a reading on my mood, me smiling to reassure him that I am indeed alright. I’m certain Zach will bring this up again, and I make a mental note to retain my musings, as they were particularly cogent for a tired girl, and why reinvent the wheel. I breach the top step and am greeted by a boy who still hasn’t tired of playing “gotcha!”, drop Justin’s delicates to the floor, and embrace my youngest in a mighty hug. “I’m proud of you” I tell him, although he doesn’t really know why, as that moment at dinner was so “last year” for him. I am certain, as I breathe in that little boy smell no factory could ever replicate, that we’ll navigate the windy roads of comprehension together, as a family.

And for a moment, that’s all that really matters.

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5 Comments »

  1. Misifusa said,

    I love how you’ve explained things to Zach ~ I think you need to write a children’s book explaining it!

  2. Mom said,

    The tears are falling here daughter, but as always, both of you as parents handle things so well. Some of these tears are of pride of the mother that you are. Love you.

  3. Kathy said,

    Oh, Kim, that was beautifully written… and so heartfelt.


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