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Posts Tagged ‘neuro diversity’

There are a lot of parents of autistic children out there who just want to “fix” their child.  Although I believe my view on Brooke’s autism has changed over the years, I do distinctly remember a time when I felt exactly that.  Have I fully embraced the neuro-diversity camp?  No, but I do feel like I see more clearly why that group is so vocal, so adamant about their views, thanks in part to Jess’ outreach to the autistic adult community.

Still, as a father, it pains me when I see my baby struggling, and I can’t help but quietly wish that certain aspects of who Brooke is were different.  That sense of helplessness is what can get us, parents, into trouble.  We will grasp onto the slightest bit of hope, the tiniest shred of promise, the smallest particle of “proof” in the hope that we can “cure” our child of what “ails” them.  Whether we do it in our heads or actually move forward with it, we jump to attention when the snake oil salesperson presents us with an “opportunity”; we go to “that place” when the doctor says, “well, maybe…”

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Yesterday Brooke has her annual check up with her pediatrician.  I like our pediatrician.  She’s the type that approaches things with a “don’t worry about it until you have to worry about it” attitude.  She sometimes seems cavalier about things, but because of that, when she says something needs to be done (like when she overrode the ER and said that Brooke needed an EEG stat a few months ago) you know she means business.  So yesterday we had Brooke’s annual.  After taking her measurements (at 10 she’s only 49.5 inches tall and weighs only 50 lbs.), the doctor looked at her growth chart and said she wanted to test for Celiac disease.

My immediate thought was really!  now this?  another goddamned thing to deal with??? Jesus Effing Christ!!!

We would have to draw some blood and have it tested, which we will do in the coming weeks.

What does this have to do with grasping for hope?  In talking about the effects of Celiac disease, the doctor mentioned some of the better know side effects (lack of growth, etc), but then she mentioned that in some kids Celiac disease can cause ADHD type symptoms and affect the child’s ability to learn.  Taking into account Brooke’s lack of growth and her precipitous drop in verbal IQ over the last two years, the doctor felt that we should cross our t’s and dot our i’s.  The likelihood is that it is not Celiac disease and that she simply burns through her calories because she never stops moving.

But what if?

But what if there is something going on there? What if there is something going on in her gut (shown to be our second brain) and it’s affecting her brain?  What if she went off of gluten and suddenly the anxiety and reading comprehension issues and processing issues went away?

What if, what if, what if…

Yeah, I went there.  I’m a parent.  I can’t help it.  I went to the exact same place when we were dealing with the possibility that Brooke was having epileptic seizures.  A small part of me hoped for the worst so that the path forward would become clearer – that there might be an answer.  How awful is that?  There is a small part of me that is now hoping, maybe it’s been Celiac disease all along?  Maybe the autism is much milder than we think.

Grasping for answers.

Grasping at any possiblity.

Grasping for hope.

grasping for hope...

grasping for hope…

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