Wednesday, May 20, 2009

Map Quest

Oh. Two of our children fall within the wide range of autism spectrum disorders. Sometimes I forget. Until something or someone reminds me. I've heard the same from other parents of highly functioning kids with autism. Because our kids look like the other kids in many, sometimes even most, ways. But they are not. And to forget is to risk. To risk dropping the ball. To risk having a child who learns to cope and fit in with the rest of the human beings on the planet. Or to fail to make an accommodation that might have led to that child fitting in. Or not. Autism speaks. But it seems to only ever ask questions. And most of those questions are without answers.
Today the internet brought an article on possible genetic answers to the question of why there are more autistic boys than girls, but that also set my mind to asking questions better left unasked. One of our affected children received early therapies. The other did not, and there is no way to really know how much difference might have been made by early therapies for the child who did not receive them. So the Boy chooses the Pokemon cartoon theme song to present to his 8th grade English class in response to an assignment on lyrics. And sees nothing at all age inappropriate about this choice. And our daughter only rarely shows those small signs that she is, in fact, not quite like the other kids. Because we, and our doctor, knew to be watching and to be vigilant about those small signs that there might be a little something extraordinary about those missed milestones that might otherwise be disregarded initially.
The irony here? Because of an "impossible" pregnancy, our son had genetic mapping following our decision to pursue amniocentesis. (There was never a question of whether or not to proceed with the pregnancy, but we wished to have the opportunity to prepare for what might be. Imagine our relief when no known genetic markers were found to affect our child.) Two years later, we again chose amniocentesis for our second pregnancy with the same relief at the results. By the time our third pregnancy rolled around, our eldest child was enrolled in school district programs and seeing specialists to try to answer the first of many, many questions that autism has asked. We skipped the amnio with Erin, but we saw the all-too-familiar behavioral and developmental signs in the months and years after her birth.
So. I read the article blathering on about genetic markers for autism with tears in my eyes, and more than a slight twinge. I love my children. And I would not trade any of them. But I wonder if there could have been a better--- more normal (Is that the definition of better?) outcome for Evan who knows that he is not like all the "other" kids had such genetic markers screamed out from his earliest tests? And yet, that is not our road. And to try to look down it really goes nowhere.

4 comments:

Kathy said...

Holly, you already know that I feel the same sting you feel.
I stopped reading the journal articles a long time ago. I don't know why. I guess because I found the same thing you did. Just more questions.
Outcome is a word that I've mulled over and over in light of Nathan. What I've realized is, outcome is not anything that can be for certain with regard to any person, any child, with or without genetic markers, with or without ASD.
I just wish I had something more helpful to say than that I understand how you feel.

Fannie said...

My sister (Sib #3) has a son with autism issues. She also has two grown stepsons, one of whom also has autism isssues. I look at that stepson and wonder if he might be different had he been given all the interventions my young nephew has received. Hard things to think about.

Leanne said...

Oh, blah. Do not go down that road. Love them, help them and let them go. Hugs.

Green Girl in Wisconsin said...

That's good that you can forget, though. I bet with your love they'll be incredible as they grow up.