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

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Unpredictability is the Worst Part

So I haven’t written much on here lately.  The fact is, I’ve been incredibly depressed.  Often angry.  Sometimes in a rage that only somebody else with an autistic child could understand.  And then back to being depressed.

I’ve had nothing particularly incisive, witty or mind-blowing to write here.  I don’t expect to always have unique things to write on this blog, but pure self-wallowing and darkness is something I’d like to keep between my own ears, or at least between the walls of my house.  But not out here…in public.

I chose to publish today for two reasons.  The first is that I am slowly pulling myself out of what probably won’t be the last tunnel of darkness, thanks to some anti-depressants, the welcome recognition of my best friend and family that our son IS in fact out of control sometimes and that I actually DO have to yell at him to be heard, and the dull healing that occurs over time.  I may sink back into again; I make no promises.

Secondly, I’m writing today because I’ve achieved clarity on one point: autism is different than Down Syndrome, fatal childhood diseases, and mental retardation (and yes, I actually did look up “politically correct for mental retardation” before posting this, because I fear the ire of anonymous Internet readers).  I’m not saying that it’s “better” or “worse” than any of those terrible diagnoses.  It’s just different.

I was reading Susan Senator’s The Autism Mom’s Survival Guide, in a burst of pro-active self-healing, and determined that I was indeed not crazy for thinking this.  Apparently parents of autistic children are TWICE as likely to experience depression and mental illness, compared to the general population. This is a pretty shocking number.  Good to know that I’m not alone, I guess.

And, adding in my own explanation for this (because I’m nowhere near the end of the book), I believe this is because we autism parents are never standing on solid ground.  We’re never sure if our kids are stuck at a particular developmental stage, or if they’ll “snap out of it” / move on / learn / get trained to the point where they don’t make random noises in public or take their pants off and hump a blanket at your parents’ house.  There are SO MANY stories of “recovered” kids with autism, or successfully integrated people with autism who become that guy in your building who’s a bit odd, but doesn’t hurt anybody.  To add insult to anxiety, autism parents also face a continuous stream of miracle cures and therapies, only to be told that it did wonders for one child, and not much for another.  And then there’s my own kid, who completed potty training in advance of his autistic and neurotypical peers, and yet can’t sit down and play with a single toy.

My Son, This Fall, Clutching His Ever-Present Piece of String

 

I read a New York Times piece this morning, titled Notes from a Dragon Mom, that made me feel like both a whiny bitch and a mom who could relate to the author’s plight.  Here’s a mother who knows her poor son is doomed to die and that her only job is to love him and not prepare for a future.  Reading this made me realize that, while I would never wish myself to be in her tragic shoes, I still recognize that this is a mom whose life is somehow more stable than mine.  God, how awful am I?

The fact is, we’re never quite sure what we’re in for – we parents of autistic children.  If my son had some disability that somehow fixed him at one particular point on the continuum of life, then at least I would know where we stood as a family.  I would know that there is/isn’t a cure, that he had five years to live, that his disability was significant enough that the government would actually step in and find him a home/support if/when we die.  I’d know that he would never lead a normal life, never talk, never get a job or move out of our home to a life of independence.  And there would be some peace in the knowing.

Am I a terrible person for saying that parents whose kids are in worse positions somehow have it better?  Maybe.  And in fact, I’m not saying that their lives are more pleasant than mine.  I don’t have to negotiate with wheelchairs, breathing machines, feeding tubes, etc.  I don’t have to go to sleep at night praying that my child will wake up in the morning.  And I am GRATEFUL for this and OH SO SORRY for those parents that must experience this.  But at least they know what they’re in for.  At least their days are relatively similar and their futures predictable.

I guess what I’m saying is that I now understand why my feelings about my son and our future are constantly gathering speed and then slowing down, swirling around and then settling down peacefully.  Because I cannot get comfortable with any particular image of my son over time.  Whether he will learn to speak, read and control his urges enough to live independently is anybody’s guess, so in the meantime, every day begins and ends with a huge question mark.  And this is frustrating in a way that parents of a typical child will never understand.  Yes, I know that their children’s futures are unpredictable as well.  Their children may end up pregnant in high school, drug addicts, drop-outs, criminals, etc.  But it is SO NOT the same.

I am trying SO HARD to love the child I have and not the child that I want (a phrase autism parents must hear only a bit less than “if you’ve met one child with autism, you’ve met one child with autism”).  But the child I have may not be be the child I end up with.  Or maybe he will be exactly where he is today when he’s 30.  The Big Tease for autism parents is the chance that the child you want is actually possible.  And it is that tantalizing prospect that makes each day in the present so very, very difficult for me.

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