Ok, so I was just reading a review of a book on brain function, commented on by the parent of a child with autism. The leaning of the comments in this thread was that autism is something wrong with the brain, and one person even claimed it should be looked at as a “brain injury”.
Well, maybe there’s something wrong with me, because I honestly got offended while reading this. I have worked hard these years to look at my childrens’ respective brain issues as less of a total disability and taken more of a “differently abled” approach. Call me naive, stupid, or fey, but hear me out.
By the time Zoe came along Amelia was nearly three, and by the time both Chris and I knew something was off, Amelia was nearing 5. The funny thing is, you don’t hear anyone talking about curing, preventing or changing Mosaic (or non-Mosaic) Down syndrome. It’s in the genes, it’s a done deal for life, signed, sealed, delivered, thank you very much. From there out, it’s how do improve her life? However, once I got a hold of the idea of “strengths based” education, I applied to everything. Suddenly Down syndrome didn’t seem like a big deal anymore, as long as there were no health issues. Don’t get me wrong, we did (and do still) work hard, and I know that this being Mosaicism has probably led to more success than other children with typical Down syndrome.
BUT. STILL. When Zoe’s condition was diagnosed, first as SPD, then as ASD, I didn’t feel SO badly. Sure, I had my “why no typical kid” tears, and the whole “who will take care of them” nonsense, but mostly I had shed my tears when Amelia was a baby. This wouldn’t be so bad. At least not for me.
And, yes, it’s true that in this house, Down syndrome is a cake walk compared to autism, but from what I’ve read, Zoe has every chance of going on and possibly leading a perfectly typical if quirky life (yea, sounds like mine, from way back when, lol).
So when I hear the words “brain injury”, my back gets up. I mean, really? Look, I’m not saying I’m NOT considering options to make her brain patterns fit (conform??) more smoothly so that can participate in (conform to??) society more easily. We are trying different vitamins, seeking to work with music, and open to visiting doctors. For me, though, it seems simply better to try to work with what we’ve been given rather than to make it into something it’s not.
Do not get me wrong – this is not about spiritual determinism: “this is God’s plan and I won’t mess with it”. I don’t agree with that sort of philosophy at all. I’ve seen and experienced better living through medicine and I believe science to be an amazing gift that allows us to do a lot of good in this world.
It’s also not being a lazy mommy. It is true that I could quit all my work and spend most of my waking hours managing diets, therapies, stimulation, experimenting with trends, etc etc, until I drop from exhaustion at the end of the night. I could spend the time required to figure out which of these are just snake oil remedies, and which might be the real deal, or hatch a plan to make enough money that it doesn’t matter, I”ll try ‘em all. When I think about that, though, I think: is it realistic to believe that my children will do this for themselves, every day, day in, day out, for the rest of their lives? Not really, in my opinion…but it’s possible they could. Too far off in the distance to see that anyway.
What this is about, however, the path of least resistance. I am not, again, talking about laziness or selfishness. I do a lot for my kids, for myself, for my husband, my home, and God and, in fact, there’s really not much time left for anyone else. No one can tell me I’m lazy. However, I have spent the better portion of my life trying to push through doors that were absolutely locked. To name a few:
- going to college for a major I had no interest in because of funding
- pursuing a career in telecom because of opportunity even though my heart wasn’t in it
- starting a business in something that seemed to be what the right path
I am an incredibly obstinate person, but I have learned after many, MANY years that when something is overtly complicated and does not engage you, it’s pointless to pursue it. It is the same with my children. What is best for them may not be an unending routine of treatments, therapies, and experiments – maybe it would, but to me, it’s a long and difficult crap shoot. If it were health-related, involving life or death, or pain, or debilitating physical issues, that would be different. I’d quit in heartbeat to save my girls’ lives.
What will undoubtedly be good for them is understanding where they are strong, where they are weak, and making life choices that fit within those parameters. I don’t think of it is as limiting at all. I do see it as saving them the pain of walking down blind alleys, bumping into walls like I did (see #1-3 above).
Ok, I’m off my soapbox. Parents chime in: if you have a child with a learning disability, especially autism, what do you think?