The Short Bus Diaries » Confessions About Life With an Autistic Son

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Filmstrip of Memories

This has been THE blog post that I have avoided writing, ever since I started gathering my thoughts about my son’s autism. I have been putting this one off for a long time in order to avoid ruining the rest of my day. But I need to document, document, document.

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Me, standing over his crib while he sleeps (sometimes I can’t resist picking him up to sway with him and nuzzle him, even though he looked so peaceful, curled up in his crib). I wish him happiness, above all else. Me, a hardened, completely unsentimental straight-talker, and I’m standing there gazing at my new baby and wishing him such a simple thing – above good looks, intelligence, an Ivy League degree, athleticism and….anything else.

My husband holds Max in the foyer of our home, excitedly repeating the news that he was told by our day care provider. Max said “stop!” today, shortly after his first birthday.  Eager to hear the word myself, I put on that parent face, excitedly looking at Max while I too say the word “stop”, pleading with my eyes for him to repeat it. And he does.  Smiles and glee all around as we celebrate this important [and typical] milestone in our baby’s development.

Max standing at the top of the stairs while we prepare to sit down and watch a movie.  He shouts “GOODNIGHT”, waiting for our response and admonishments to go back to bed.  He giggles and repeats.  “GOODNIGHT!!!”

Nightly bedtime routine: Max shouts “I wanna cuddle with Mommy!”, if I leave the scene too quickly and he’s not quite ready to go down without a fight….Then, as he sits on my lap and leans against my chest, he giggles between requests to “tickle my back” and “tickle my neck”. Cuddling with him each night was the best part of my day…

 

As our basement gets a complete overhaul after we discover major, disguised termite damage (a project that erases my husband’s savings that we were going to use to start our lives over again in Chicago, where we felt we would be happier), Max constantly observes that there are “men working with tools”. Sometimes he “sees” the men, and sometimes he remarks that there are “no men working with tools”. He even points out these men when we walk through the city and see workers on ladders and repairing roads.

Max calls out “school bus!” every time we pass by one on the road. As we drive to Virginia for day-care, he announces the “tunnel” when we drive underneath the Capitol each morning. As we pass over the bridge between DC and Virginia, he notices the “water”. He’s labeling – another development milestone that gives us that sense that all is right in our world.

August 2010: We pull up to his new day care center where – in two months – our lives will be changed forever by his diagnosis. He happily shouts out “AT SCHOOL!” to announce our arrival.

In the fall, it becomes a bit harder to engage Max, but I’m busy being a mother to two children, starting up a photography business, and barely making it to my day job in tact.  He eyes fade a bit, somehow.

December 24th, 2010. Max sees me typing into my computer, as I attempt to find the location of some event for our extended family to participate in. I’m distracted, but he’s trying to engage with me. He goes to fetch his own toy computer and says “Mommy ‘puter”. I am to stressed out and determined to find that elusive but oh-so-important piece of information. I can’t remember if I pick him up or acknowledge him.  This particular moment haunts me the most, as it is the last time I remember my son trying to engage me in play and label something spontaneously.

Christmas Day 2010.  Our living room overflows with people, unwrapped toys and wrapping paper. We are a noisy, busy collection of people. I see that Max is missing and walk to the kitchen and find him playing alone on the floor with the small Matchbox truck I got him (I had tried desperately to find him a simple toy that he might actually play with, since most previous attempt to interest him with toys had failed miserably, as evidence by a collection of specially ordered and untouched toys scattered throughout our living room). He looks disoriented and alone.  Perhaps he was perfectly happy being alone.  But I think of that as the moment when I really understood.  However, acceptance is something I’m still working on.

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These are the scenes that represent my personal memory montage of moments where I can remember Max being different than he is right now. Sometimes I manage to shut them off as soon as the sappy soundtrack clicks on in my head. But sometimes, even if I’m in the middle of a mundane moment with my daughter, playing dolls with her or brushing her teeth at night, she’ll say something in particular or we will be in the middle of some routine that I used to perform with Max. And BAM! The sad movie queues up again and the tears push against my eyes.  Only once did I fail to sufficiently bottle up the pain. My husband called upstairs to ask me a question and could hear in my response that I had been crying.  He ran upstairs to see what was wrong. As he hugged me closely, I wept and cried “he’s gone! Our little boy is gone and he’s never coming back!”  (I have not managed to catch a case of my husband’s faith-based optimism, but that is the subject of a completely different post.)

Yes, we were parents who had no idea that our son was autistic. We suspected nothing, except for a speech delay.  While there were very obvious signs to us that Max needed some help in a few areas (he never gave me the animal sounds I was looking for when I sang “Old MacDonald”; he never paid much attention to the books I read him; he didn’t play with very many toys; he became fixated on objects like plastic knives and forks that he would carry around and sleep with), we signed up for DC’s Early Intervention program simply to document his speech delay in an effort to sneak him into pre-school early and put an end to day-care costs.

And after six months of pretty pointless observations by third-party contractors who DC sent to our home, and after a hysterical boy clearly needed me to come out from behind a one-sided mirror to control and comfort him during one particularly terrible day when he was left alone in a room full of 4-5 strange women who were performing a multidisciplinary observation that would lead to an even more terrible day for us…we still didn’t have a clue how much our lives would change. I’m sure that the psychologist who pulled me into a room that day for separate questioning knew exactly what she was dealing with as I innocently answered her questions about Max’s habits. But I think I was still happily mesmerized at that point by the simple steps the occupational therapist had just taken in the other room to calm Max down, dropping him from a few feet in the air so that he could really feel the floor hit his feet, slapping and roughly rubbing his back.  I remember being so surprised by the concept of sensory input that I shared what I had seen with everyone I saw for the next few days.  That’s it!  Slap the kid on the back and squeeze him a few times and he was as good as “normal”! But the psychologist’s line of questioning didn’t have that foreshadowing effect that I suppose would be included in a movie clip of that same scene (I can’t believe I’m the only narcissistic person in America that replays memories in my head as if they’re significant enough to make it into a movie one day.)

In fact, as the days went by following that last observation, I begged and begged for the coordinator to send me the results.  The school year was in full gear and I wanted one of those slots for my son.  Gimme, gimme, gimme those evaluations so I can get on with the process.

My wish came true one Friday afternoon as I worked from home on my laptop and thoughtlessly opened that email.

Yup. She sent me my son’s diagnosis of autism via email.

There was no counseling, not even a pat of sympathy on the back.

She fucking emailed that word to me.

Write more later….

 

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