Thursday, October 23, 2014

Fictional Moments in Autism Parenting

Before I became a real, live parent of an autistic child, I used to read a lot of books about children with autism.  They formed kind of a sub-genre of parenting books, and I found them compelling.  It's a lot harder to read them now, although I sometimes try.  What makes it hard is that those books all seem to contain some elements that are sorely lacking in my life.  Here's a few of those moments (of course overstated and with fictional therapies, but indulge me!)

The Doctor Denial Moment

"Although little Florence was slipping every day more deeply into the abyss of autism, when we took her to our trusted pediatrician, he patted her on the head and said 'She is just fine!  Every child develops at their own rate!  You are over-anxious parents!'  It took thirty-one more visits to doctors, specialists and finally calling in some favors for her to be seen by the world's most celebrated autism guru for her to finally be diagnosed"

Janey's autism, when it hit, was apparent to strangers on the street.  No-one ever called me an over-anxious parent, although I would have loved to be called such.  She was diagnosed as soon as we asked for her to be evaluated.  There was no question.

The Immediately Choosing a Therapy and Having the Money to Pay For It Moment

"As soon as Florence was diagnosed, we did some research and decided the Colpepper-Smythe Regiment was the therapy that would be her savior.  Although it cost two million dollars a year, and required flying in therapists every week from Albania, and completely remodeling our house, we had faith it was all worth it.  I must admit it was a little bit of a financial stretch.  We had to forego our yearly upgrade to the latest diamond-studded car, but that is how much we cared"

When Janey was diagnosed, we let the school she was already attending know, asked for an IEP meeting, and when it was held, agreed to the very reasonable course of therapy they recommended.  We didn't seek outside therapy, because all of us were selfish and enjoyed eating too much to absorb the financial stretch of giving up food that outside therapy would have required.

The Breakthrough Moment

"After two years of around the clock therapy, without the slightest sign of progress, suddenly there came an amazing moment.  Florence looked at us, said with a smile 'I'm all done being autistic now!', read 'War and Peace' aloud to us and went to the computer and applied for extremely early entry to Harvard, all at the age of four.  It was then that we knew our faith and devotion had been rewarded"

Janey has yet to have a breakthrough moment.  She has lots of amazing little moments, and we love them, but none of them have "cured" her.  In fact, in many ways, she's very similar to how she was at age three, when first diagnosed.

The Passing for Normal Moment

"We decided to put off Harvard for a few years, to give little Florence a chance to enjoy a normal childhood.  We enrolled her in the local pricey fancy private school for completely normal kids, and we knew it was working when her teacher, who we had never told the sordid secret of Florence's early brush with autism,  called us and said 'Of all the normal kids in Florence's class, she's the most normal of all.  I'm saying this to you for no reason in particular, but she would never be mistaken for a child with autism, not THAT super normal girl' "

Janey is not going to have a moment like that.  I am not selling her short to say that.  I no longer preface remarks like that with saying "short of a miracle".  Janey is autistic.  She is going to stay autistic.  That is the reality of her life and our life, and I am gradually starting to feel that hoping someday she will be "cured", she will be "normal" is like hoping some day she will no longer be Janey, and Janey is here to stay, and I love her.

3 comments:

David Billheimer said...

This was one of the best blogs you've written. Humor can illustrate things at least as well as straight fact -- people pay attention to the humor, while understanding exactly what you are trying to say.
Your Mom and Dad.

Angel The Alien said...

LOL! I've read books like that too! Your exaggerations aren't even all that far off. It always irritates me to read books by parents claiming to have "cured" their children's autism, insinuating that parents of children who are still autistic are doing something wrong, or not doing enough.

David Fee said...

"The Immediately Choosing a Therapy and Having the Money to Pay For It Moment"

If you have to ask how much the therapy costs, you can't afford it. At least we won't have to worry how to pay to pay for college.

"The Breakthrough Moment"

Usually when I hear this one it has something to do with the right diet or vitamins. If only my daughter could forgo gummie bears, I'm sure she would improve rapidly. People who believe in the miracle diet usually don't know about the placebo effect.