Wednesday, May 6, 2009


I am full of grief and rage and sadness and anger and feelings of being overwhelmed. I want to rail at God, I want to throw dishes, I want to stomp my feet and throw a bigger tantrum than either of my kids ever did. I want to pound the ground in frustration and scream at the universe.

My son, my darling son. has Tourette's and Asperger syndrome. For those of you who didn't know this but read this blog, keep it to yourselves. I wouldn't normally even dare write something here but I need an outlet today. We have known about the Tourette's since he was 6. Asperger's has been suspected since then, as well, but officially "diagnosed" this week.

Both of those were evident before - we noticed tics as early as age 4, and oddities in behavior, etc., since he was a baby, really. But who among us isn't odd? (Especially in my family!)

Still, the grief is here today, and strong. With Tourette's, at least, I could tell myself "the prognosis is good - most people's tics lessen throughout adolescence and are often mostly gone by adulthood." There was no guarantee that would happen for my son - we won't know until we're there - but at least it was a hope. But Asperger's? That's life-long. I know it could be worse. I know. I know. It isn't cancer. It isn't full-blown autism. It probably won't preclude him from most of the things we all hope for - good education, good job, even a good marriage and kids.

But my grief is for what might have been - what kinds of relationships he might have had if his brain wiring made him more capable of truly connecting, and for what might be - the pain of never quite getting it, never quite fitting in, and how hard it will be as his parent to try to help him navigate a world that will be more difficult for him than for many others just because his brain was built differently.

My husband is intensely private, and I certainly understand not discussing all this with just anybody, but it also leaves me without support. It's not that I want to talk about it every minute, I just want someone to understand and know. I will eventually take steps to figure out support groups, etc., but for right now, we're not doing a lot because we don't want to push this label on my son. He knows about the Tourette's, I had to label it for him about a month ago after they thought he was having a seizure at a local camp, but you know what, I don't want to always focus on these labels. He's still my son. Quirky, often exasperating, but also funny and computer savvy and never boring... without the labels, what would we all think?

Maybe eventually they will help explain to others what others might normally dismiss as social awkwardness, or even rudeness or just weirdness. Maybe eventually it will feel like a blessing to be in this age where we know more about what is going on, and being able to explain to others, at least adults, will net him some grace where before others might have been hesitant to give.

But right now I'm grieving, for the lost dreams both my husband and I have had for him, and for the future challenges to come. I know I shouldn't expect a problem-free life, for me or others. I don't. I know it's better than cancer or any other number of things. But he's my son. And I'm pissed at God for his sake.

1 comment:

  1. Argh. I'm so sorry. David has ADHD and just that has been a challenge for us. I'll comment more tmw but I need to get to bed. Thanks for sharing something like this.