Thursday, January 24, 2013

The Day the Music Died

I recently read yet another of those "10 things to not say to a special needs parent" type list. I find them funny. One of the things that is on them over and over again is something like this:

Never say to a special needs parent "all kids do that" or "my kid does that all the time" 

It's belittling the disorder. It's belittling the work that the parent is putting out raising the child (assuming they are). It's usually an attempt at empathy that ends up being seen as selfish. I agree that "my kid does that all the time" is probably not the best thing to say to a special needs parent.


You stop hearing it.

I haven't heard that phrase in several months outside a clinical or therapeutic setting. When Jack was 3, we heard it every day. Well meaning blessings from those close to us. At 4 and 5 Jack was in a school setting and surrounded by typical functioning peers. The comparisons were the background music to our lives, but one day, the music died.

Let me state as clearly as I can, my son is High Functioning Autism (not PDD-NOS, Aspergers, SPD, ADHD, or anything else). He has several of the traits of those sub-categories, but he is Autistic. There is a new article going around posing the question "Do kids outgrow Autism?"  You can read it here. As we expand the definition of Autism, and we diagnose earlier and earlier (some children are now diagnosed as early as 12 months)... we greatly increase the number of misdiagnoses.

And that's okay. Those kids are hopefully getting services and awareness to their minds and their futures that they otherwise would not have had. But there's another side effect that increases - Hope.

Hope that your son or daughter is misdiagnosed. Hope that they will simply "grow out of it". Hope that his or her behaviors are simply something "that all kids do". Sometimes you've been in the game a long time hoping for something like that.

The reality is that raising a child with Autism (correction, raising MY child with Autism) is a lot of hard work. There are lots of fights. I get bit, bruised, bloodied quite often. I spend hours on homework assignments his classmates complete in 10 minutes. When I am successful (and I'm often not), I spend my entire day directing his actions. Dictating every moment of his day while still allowing him the freedom to make his own choices within them that allow him to develop as an individual. Exhausting.

And it takes its toll. I fight with my daughter because I'm pissy about the boy. I fight with my wife because I'm exhausted or frustrated with the boy. I fight with the school because I'm frustrated with the boy. I should just give up, right? I mean he doesn't need to read or write or learn math or learn to brush his teeth or dress himself or tie his shoes. He'd probably be happier with no demands on him. I'd probably be happier not having to place those demands.

And right when you get there, something comes out. "How are you doing, Daddy?" "I can do my seatbelt myself" "Jack got 9/10 on his spelling test" "Going to the park makes me happy".


Jack will not "outgrow" Autism. I will never experience the joy of hearing my child was misdiagnosed. I will, however, help him push that rock up the hill again... and find meaning.

For all of us.

To hear that sweet sweet music play again.


  1. Jeez, make me cry why don't you! (WHB)

  2. I love this soo so much. It's so true. And I REALLY get it.

  3. God, I hope I've never said that to you or anyone with a special needs kid. Putting it that way, it IS belittling.