Out of the frying pan and into…the research study

16 09 2008

In another life, I think I might have been a doctor. Possibly of the witch variety. I might have even been a doctor in this life, had it not been for my profound love of parties and boys, and if such a career path had not held the pre-requisite of grade 12 honors math. Lucky for me, my mind, my line of work, and my family are such that I’ve been able to get my medical nerd fix without taking calculus.

So, when the opportunity arose to take part in a nation-wide research study on infant siblings of children with Autism, you better believe I jumped at the chance.

Here’s what I figured would happen: I’d get an inside look at the research process, and be able to offer up some interesting observations about Roo that might help doctors better recognize Autism in young girls. We’d make an interesting bit of research, and the research would make an interesting bit of fodder for my writing. The doctors, like so many doctors before them, would be impressed by my knowledge and my insights and my enthusiasm for the latest research abstract in the Journal of Pediatrics and Child Health. They’d marvel at our amazingly complex children, and at our amazingly simple approach to enjoying our life even though it’s fraught with the complexities of multiple weirdnesses.

And indeed, all those things did happen.

But here’s what I didn’t figure: I didn’t figure that in the days leading up to our first meeting with the doctors and researchers that I’d start paying closer attention to some of Baby Squiggle’s subtle behaviours. I didn’t figure I’d be struck by how similar some of those subtle little behaviours were to the very same subtle little behaviours we noticed in Roo at the same age. I didn’t figure I’d see the researcher scribbling down notes about inconsistent eye contact and lack of interest in interactive play and minimal response to facial expressions. I didn’t figure I’d have to admit that even though two months ago, Squiggles could happily shout the word CAT as clear as a bell, she has not done it since. And that she seems to have lost the ability to roll over. These are the red flags we saw in Roo. The difference is, we didn’t know they were red flags then. But now we do. I didn’t figure I’d be sitting here figuring that in all probability, in this research study of infant siblings of children with autism, Squiggles will belong to the group of babies later diagnosed with autism themselves.

But here I am, doing just that.

It’s a strange place to be. The doctor inside of me is interested in what this all means clinically, neurologically, genetically. What kind of impact will this have on the research findings and the subsequent diagnostic tools used to screen other infants? But the mother inside of me is afraid of what all this means socially, emotionally and personally. What kind of impact will this have on our family, and on my baby? The mother inside of me is worried and a little stressed by all the unanswered questions, and all the unknowns. But the doctor inside of me is confident that our family has the skills and the tools we need to deal with what ever comes our way. No calculus required.

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2 responses

16 09 2008
Lisa

Yipes. What does Mr. Blister think – or for that matter, what do Roo and Neener think? Are you quite sure or just suspect?

I’d say, “I’m sorry” but that sounds like I’m putting you and Squiggles down and I’m not. Let us know what you discover.

16 09 2008
domesticblister

Right now it’s mostly speculation…a lot of things that are “interesting” but nothing official. But if I were to listen to my gut, I’m pretty sure I know which road we’re headed down. Which is actually ok. It’s a road we already know pretty well!
Mr. is on board with the whole research thing, and got to be there for the first meeting, which was great since his role as stay-at-home-dad will be impacted by a lot of this stuff. Neener and Roo have not really been brought into it yet, but they are already aware of the idea of “different brains” so when the time comes I think they’ll be ok with strutting their neurological stuff.
Needless to say, I’ve got a new thread to blog about here, as the life of the Blister family keeps getting more “interesting.” And I wouldn’t want it any other way!

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