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

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Would Believing in God Make Autism Easier to Swallow?

So I’m an atheist.

IMHO, this represents quite the divide in the autism world.  Not that there are separate clubs, or holiday parties, or secret handshakes between us and them.  Not that I’m even aware if there’s any other atheist autism parent out there who could join ranks with me to form an “us” team.

What I mean is that there are those bloggers, Tweeters, and fellow autism conference attendees who feel that A) there is a god, and B) because there is a god, “he” (and don’t even get me started on the genderizing of said god) has selected this child to be autistic for some particular reason.

In my life, I have rarely, RARELY wished to believe in God.  When you never had it, ya just don’t miss it.  You just tend to see the world according to coincidence, the consequences of humans making good/bad choices, self-reliance for a moral compass (as in, no need to behave in one particular way in order to avoid judgment by anyone but yourself and perhaps your family) and – MOST IMPORTANTLY – total randomness.

So what does this have to do with autism?  Well, this means that I believe that my son and our family got stuck with this (emphasis on the word “stuck”, because I also am not one of those cheerleading autism moms who feels that this is a blessing in disguise) as a result of sucky, awful, INEXPLICABLE randomness.  Yes, perhaps it was the vaccines.  Perhaps it was that time when my son fell out of the shopping cart at Babies ‘R Us when he was 10 months old, or perhaps it was a result of the genetic dance between my husband and myself.  But it is not a punishment/lesson/penance/gift-in-disguise/god knew that we could handle it so s/he chose us kind of thing. Because Lord knows (ha!) that we can barely handle this type of thing.  It’s bleeding us dry – monetarily and otherwise.

After we were smacked with the diagnosis and had gone through the standard period of denial, I did at times wish I had religion. But why?  I already knew that a belief in a god that the sort of most people believe in (the type that somehow knows what each and every one of us are doing at every SINGLE minute of the day on every SINGLE square inch of Earth) would probably mean that s/he assigned me this burden for a reason. And I really didn’t like the sound of that. Because that would just make me struggle with the quest for that reason, feeling angry at being assigned this life without my input, based on some incomprehensible wisdom on the part of some unknowable deity in the sky. In other words, knowing that there was a reason for autism, other than something in a vaccine or head trauma, would just leave me pissed off and struggling on a daily basis to continue belief in a god that would do this to me.

So I don’t think my occasional yearning for religion represented some sort of masochistic search for a cruel or condescending uber-power in the sky.

It was a desire for the warm fuzzies that I *think* people get from their religious communities.  [Brief tangent: Back in college, I tried on Judaism for a minute, thanks to a friendly, guitar playing group of hippie Jews at CU-Boulder who liked to hang out and not pray or talk about belief. But I could never get past that god thing. That, and I think Palestinians deserve a state. But I digress.] I would like – for one day a week or even a month – to feel at peace. Like everything is going to be alright, no matter how much my son progresses or doesn’t progress.  I would like to just go sit in a building for two hours on a weekend, sing songs, hug women with ample bosoms, and put a genuine smile on my face, just knowing that I’m being taken care of – either by god or by fellow worshippers.

My husband and I started a support group around here that I run out of my studio. And that helps. It feels nice to bitch about working with [read: against] the school system, dealing with suicidal Aspergers tweens, comparing notes on neuropsych examiners and social skills camps. But I don’t feel good in my “soul” after these meetings. I just feel a little less alone.

Essentially, what I really want to feel is a kind of light, post-glass-of-wine -type of faith in the idea that it’s all going to be OK in the end. And I want that feeling to last for a little while. Yes, I realize that religion means a whole lot more to people than that silly little metaphor. Sorry to offend.

But you know what?  That’s all I want out of religion. A little buzz. Some hugs. Some hope for the future. I don’t need that other little centerpiece–that god thing.  I don’t need to wonder WHY my son has autism.  And if I did believe in a god, I would have to walk around and wonder why him/me/us? And I don’t need that shit.

I just need a break on a semi-regular basis. Save the god and the explanations for some other mother who is capable of dealing with both the DIAGNOSIS and the DELIBERATE ASSIGNMENT of that diagnosis to her by her god.  Just give me the buzz please.

Stephanie - March 1, 2013 - 12:39 pm

I just found your site today. I couldn’t agree more with this post. It was great! Thank god (no pun intended hehe) that I am not the only one. 🙂 I look forward to reading more.

He’s Talking!!!!!!

See this boy?  The beautiful one?  With the magical eyes?  That’s my son.  And he is starting to talk more and more.  Like he walked around a corner this past weekend and decided that “yup, I’ve had enough of this being trapped inside my head thing and listening to Mommy and Daddy with their stupid demands to ‘say “I want cookies”‘ when it’s really obvious that I want the damn cookie’.

See that oh-so-symbolic “veil of autism” that he’s trapped behind (otherwise known as a shot I took a few weekends ago when he was on a moonbounce – and yes, I know that I’m reusing images from a previous post, but I’m busy, yo?)?  Well, my son has decided to stick his fingers through it and get a taste of the way the rest of us communicate.  IN SENTENCES.  AND WE REMARK ON STUFF THAT WE SEE.

I’m not saying that he has achieved that magical state of Jenny McCarthy “recovery”.  Or that he ever will.  I’m just sayin’ that HE’S TALKING!  SO MUCH MORE!  It’s awesome! It even startles me a bit, when I hear his 3.75 year old voice saying stuff so….normally.  I feel just a little more normal myself, in fact, like one of those moms whose son ever-so-casually asks you to get something for him while you’re reading Us! magazine, and you every so casually grab it and then go back to your gossip page because hey, it’s no big deal.  MY CHILD IS MAKING AN EVERYDAY, NORMAL REQUEST OF ME!

That is all for now.  : )

Summertime

Not a whole lot to report around here.  We have one tired kid who’s falling asleep in his lunch because he can’t catch up on his sleep (usual story with all of us “Autism Parents”).  I’m still demanding that he puts an “I want” in front of the nouns he grunts at me when he wants something (Grandma thinks that we are torturing him when we do this – she doesn’t understand the importance of FUNCTIONALITY IN NORMAL SOCIETY).

Oh, and on a recent trip down to North Carolina to visit my parents in Hippyville, we got the chance to have lunch with an 18 year old man-boy who is also autistic.  And ya know what? Other than some occasional quirky head movements and a deep concentration on eating his food, he was the model of “different but functional” that we hope to mold our son into.  We heard comforting facts from his mom, that her son didn’t acknowledge his colors until he was seven, and didn’t speak in complete sentences until he was 5.   (On his way to community college in two months, this kid was now sitting at the table with all of us helpfully and obediently answering questions about what he could remember about being young and autistic – not much.)

But the thing that I cling to most now is the fact that this kid once obsessed over animals and lining objects up in rows, and now has no recollection of that period in his life or hobby.  Perhaps this kid’s animals and lines are my son’s cords/strings/long skinny things!  Maybe we’ll be able to comfort some other desperate parents one day and tell them that our son once had this silly obsession, and isn’t that funny – ha ha ha – but now look at him! You have NOTHING to worry about!

Anyhow, not feeling too bad today, so I’m just going to post some pics of my son that don’t suck.  : )

 

Playing on the Moonbounce - A Sensory Bonanza

On the Moonbounce, I'm not Autistic

 

 

Easy way for me to entertain him (cause there aren't that many options): Splash Parks!

 

 

An overexposed lucky save: My son and his beautiful eyes

 

 

The Purity Factor

I realized tonight that I haven’t painted my toenails yet this season.  I say “season”, because I have never cared what my toes look like when I’m not wearing sandals.  Let’s face it: I have always been the type of woman who has to be strongly motivated to put contact lenses in over glasses, and to put make-up on.  Putting paint on the part of my body that people see last has never really caused me to lose sleep or to avoid wearing open footwear.

 

Cell Phone Self Portrait of a Photographer (who was too lazy to get her camera and take an artful shot of her feet)

 

 

Why am I babbling on about this, you may wonder?

Because I actually wanted to give myself a nice night off.  A shower…without my daughter sharing it with me. A night of So You Think You Can Dance on TV, without simultaneously editing photos.  And even a purely girly couple of minutes of doing my nails.

And then I realized that I can’t really get the kind of enjoyment out of these simple activities…the way I did before.  And then I realized that “before” was really only three years of my son’s life, whereas the “after” (as in, after The Diagnosis) will last Much Longer.  So I guess I better stop bitching and get on with it, right?

But I really, really miss the feeling of simplicity – whether it was simple exhaustion, simple joy, simply vegging on the couch, simply making myself look attractive for a night out with some friends, simply eating dinner and gazing at my beautiful children.  Now everything has the flavor of autism swirled in.  Nothing tastes pure.

And I don’t think it ever will again.  I am coming to realize that there will always be concerns about my son sprinkled into every scene of my life – save sleeping.

Sure, once a parent, you are “doomed” to never be alone in your thoughts again.  That’s what we sign up for, no matter what kind of children we have, right?  Yeah…..but…

That’s not what I mean. And I’m pretty sure this loss is felt by parents whose children face any sort of significant disability or illness.  Every moment is divided between what is actually happening and the Other Thing.  I’m pretty sure that even if I decided to take up an Oxycontin or Crystal Meth habit, I’d still feel torn between pleasure and disappointment/pain/worry/sadness.

Oh, woe is me. Sometimes I wish I would just shut up and woman up.

Fear the Cords

So my son stims.  Your son stims.  Your daughter stims.  The whole autistic world stims.  In fact, I stim (although I’m pretty certain I’m not not or do I run the risk of being diagnosed as autistic – I’m just wacky).  So what’s the big deal?  It’s a stress reliever, it’s a way of shutting out all of that sensory overload, ignoring all of those adults asking you to pick up the red block or put the stupid bead on the string.  It doesn’t hurt anyone.  It feels good.  It’s not illegal.

Some adults have a martini when they get home from work.  Some people smoke.  Some people pound away at the elliptical machine to wash away the day’s tension.

So why can’t my son twist a cord if he wants to?!!!!!

Autism, Autism Parent, Autistic Son, Sensory Processing Disorder

Because it freaks Mommy out, quite frankly.

My son could twist these cords all day long, between eating, sleeping, peeing and humping his lovie.  In fact, I let him do it this past Memorial Day, while we spent our day talking to another couple – whose daughter is autistic – about their in-home ABA / Son-Rise program.  At certain times like these, or when I need to get dinner made / fold laundry / fill-in-the-tedious-but-must-be-done-household-task, I just let him go to town with his cords/extension cords/belts.  I just don’t feel like fighting the fight that I’m not even supposed to fight in the first place, or struggling to engage him an in activity that he will ignore nine times out of ten.

But I really, really, REALLY hate those fucking cords.

I understand that stimming helps him calm his mind.  But it also gives him a reason to shut himself off from the world.

More to the point, it also entertains him.  And it is this aspect of his stimming that really makes my eyebrows twitch.

Honestly though, I don’t know what else to do with him.  When my daughter is otherwise occupied, I have “joined” him in this activity in a combination of Floortime/DIR, Son-Rise methodology, and sheer desperation to engage with him somehow.

And let me tell you, sisters and brothers in the battle for your children’s attention, THIS SHIT IS BORING.  Unbelievably boring.  And he clearly doesn’t want me to interrupt him or play with him.  I suppose the training that I am thinking of attending in a few months will help me figure what the next magical step to take should be after the “joining” bit.  (I should add that I just ordered a bunch of ridiculously expensive teaching tools and am preparing to create a simplified learning environment in our home for some home-based ABA trials.)

But underlying my deep hatred for these cords is a permanent florescent light buzzing of fear.  The truth is that I dread being alone with my son.

There, I said it!

I just don’t know what to do with him.  When I hear that school bus idling outside our house, I know my 6 hours of working peace are over with.  That’s when the time-killing hours between school and bedtime begin. He comes in the house and I have a few non-autism / normal motherly tasks I can accomplish with him right off the bat (feed him a snack, replace his just-in-case pull-up with his Big Boy underwear).  But after that, I am totally lost.

I can throw him into his crash pad, tickle him, put him in his swing, throw him in our make-shift ballpit, set him up in the back yard with the hose (he does love water), or take him to a local splash park and pray that he doesn’t start playing with the draw string of his bathing suit.

But I just don’t know what else to do with him.

And this really makes me feel like a failure.

And it makes me scared for his future.  Because the time period is quickly coming to an end – the one where he he can sit down amid a crowd of crazy 3-4 year olds and zone out with a cord while no one notices or cares.  But a 13 year old who sits in a corner and twists his father’s belt (or a plant leaf, if Mommy has hidden all of the other cords in the house)?  He’s no longer a quirky pre-schooler; he’s that weird kid that will live with his parents his whole life.

And what do we do when the services run out and all of those “Early Childhood Development Specialists” don’t know what to do with a 25, 30, 45…year old who knows how to ask for food and use the potty but not a whole lot else, unless you throw him, squeeze him and bounce him around for 15 minutes first.  Then what?

Sam - May 13, 2013 - 10:25 am

Hi!

Here’s a reader from the Philippines. My son was diagnosed with PDD-NOS when he was 4 years old. He graduated after 1 year of occupational therapy and now appears to be “normal”, we were thinking if his therapist just have us a wrong diagnosis. However these past 2 weeks where he’s mostly idle (no class, no summer activities, no therapist), we’ve noticed that he would stim from time to time (e.g he would draw shapes in the air with his left arm, turn his head to the left) and this freaked us out. However when that SMILE shows up to us, all our worries are gone.

We hope to keep him very busy this summer as we feel like him being idle made things worst for him.

Sam

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