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

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One and a Half Steps Back

So I am in a lot of pain.  And not the physical kind.  The aching soul kind.  I know I am supposed to be writing something uplifting about life with an autistic kid, something parents of newly diagnosed kids can gain some relief from reading.  But I guess:

1.  I’m still a “new” autism parent

2.  I have no clue where to find relief myself because reading about one amazing autistic child’s progress leads me back to that notorious saying “when you’ve met one autistic child, you’ve met one autistic child”. This is to say that your child’s wonderful progress indicates nothing about my particular child’s potential.

3.  I just want to cry, not be someone else’s shoulder to lean on, at the moment.

My friend Anna wanted to feature me in a local newspaper column.  She wanted me to send some average snapshots and then offer tips to parents looking to shoot better pictures of their kids. What initially started as an exercise in me cringing about my lack of photography skills quickly turned into a season-by-season photo biography of my son, Pre-Diagnosis, and After.  That’s how I see things now: Then and Now.

(I’m a photographer, but I wasn’t always one.  So please don’t hate.)

Here he is as a baby, when we gazed at his wondrous eyelashes and constantly patted ourselves on the back for having such a beautiful boy:

Autism, Son, Washington DC

And here he is on Halloween.  Oh, how we loved him in this costume – the “Cutest Little Dragon”, we called him.

Here is another image.  Now, I start to spot some vacancy in his eyes.  At the time, however, all I could see was my progress at photographing my little wonder, who was playing with some nice, clean toys that would soon become props in my studio…

And here he is eating ice cream with Daddy, a highly interactive child who was experimenting with words – albeit at a slower rate – and at least attempting to play with some of his toys.

And here he was being a goofball just last fall, playing with one of the few toys he did enjoy – a broom – and wearing some none-too-cheap cowboy boots I bought for him in Texas – where else?  (And yes, he looks a bit porn star-ish here, but this would be one of the last fun snapshots I take of him for a while…)

And then here he is last Christmas, when he wandered away from all of the present unwrapping and sensory overload, sneaking off to the quite kitchen to eat some stolen candy.  He didn’t want to join the group.  He didn’t want to play with any of the special toys Grandma bought for him.  At this point, we knew.  It was not the merriest Christmas.  And there’s no denying the fact that he was slipping away from us.

I tried to take some snapshots of him last night, during a rare family get-together, after noticing the lack of recent photos of him, compared to his little sister.  But after a few attempts, I gave up.  I can’t bring myself to capture him playing obsessively with a string/plug/bungee cord/insert-other-long-stringy-thing, as evidenced here, where he managed to find a kitchen apron string after we hid all of the other potential objects of obsession:

Where has my beautiful boy gone?  He still smiles and giggles when tickled.  He will occasionally utter a request for a cookie or milk.  And he miraculously potty trained himself (fingers crossed) over the weekend.

But he no longer says “Goodnight Mommy!”  joyfully, over and over again, from his upstairs bedroom each night.  He no longer announces his favorite objects as in “This is my lovie, Mommy”.  He no longer utters those echolaliac phrases that once drove me crazy!  He just mutters to himself in a language only he understands or gets satisfaction from. We’re lucky if can bring himself to say hello 1/10 times.

So yeah.  I’m in a lot of pain.  I’m back to that mourning period that I experienced when Max was first diagnosed last October.  My son who was once high-functioning has pulled back and gone deeper into himself.  He is now That Autistic Kid.  The one that everyone can recognize.  The one whose future suddenly looks a whole lot dimmer.

I’m angry.   I’m depressed.  I veer between wanting to see what our future looks like and fearing what I might find there.

Sometimes, I wonder if my son is even in there anymore.  Because right now, he’s closer to a giggling robot.

I want what so many other parents out there have when they worry about what sport to enroll their child in, or even that little Tommy has trouble pronouncing certain “th” words.  I want to have those normal worries, and not those big, dark scary ones about whether Max will stop speaking altogether, or whether he will be able to live independently one day.  I want him back, along with all of the hopes we had for him when I took that first beautiful sleeping baby shot of him.

Stimey - April 26, 2011 - 10:03 pm

He’s still there. And he’s beautiful. It’s okay to feel sad and worried, but remember that even if he’s not talking, that doesn’t mean he’s not communicating—and it definitely doesn’t mean that he has nothing to say. Some days, some weeks, some months are harder than others. Hang in there, okay?

Gretchen - June 30, 2011 - 9:23 am

You are most certainly allowed to be sad, angry, depressed. And any other feeling that rises up in you. As a fellow mom to an autistic son, I feel and hear your pain. It’s all too familiar. Allow yourself that moment. And then dust yourself off, and try again. Try another way to open that window into your son’s world. it’s there. Don’t lose sight of it. No one else will have the faith in him that you have. Allow yourself a day/hour of pity, I call them my “pity parties”. And then move on. Post one of the Before Dx pictures to motivate you. You’ll get him back…you will.

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