Please click through the link below and read the article. While it isn't a pretty or happy reality- for anyone involved Noah, his parents, and his brother- it is incredibly honest.
http://www.time.com/time/magazine/article/0,9171,1898322-1,00.html
I am touched by the honesty of the author. He realizes that this resolution isn't a happy or ideal one. He acknowledges that he may not always be able to be the stable influence that his parents were. He acknowledges that his brother will never recover.
Another article that I found this week that left me reeling was this one:
http://news.yahoo.com/s/ap/20090509/ap_on_he_me/us_med_autism_recovery;_ylt=ApAU33Cxt5qcB.l52vsO4hjgcbYF
I couldn't help but read it and wonder at my own view. Do I not believe in recovery because of my fear of hope? If you haven't realized yet, I am a realist- that means that I deal with the facts and try to squash any hope as I don't want to delude myself into wishing for something that may not happen.
In reading the article, I found one line that I couldn't let go of-
Many also have above-average IQs and had been diagnosed with relatively mild cases of autism. At age 2, many were within the normal range for motor development, able to walk, climb and hold a pencil.
While Little Bug isn't diagnosed as mild- he is in the middle of that bell curve of the spectrum- everyone who meets him talks about how bright he is and how is able to do all those things listed above.
I know part of me is afraid of the idea of recovery as I don't know if people can change that much. While a tremendous amount of change has happened, my argument has always been that a person is never cured from Autism. It never leaves them, but simply changes. The severity lessens and the manifestations changes.
Could I be wrong? Should I hope for recovery? Or prepare for nothing to change?
Knowing me, I will most likely trudge on without hoping for a change. Without planning for a recovery. We will prepare for Little Bug to never be independent or get a job. We will continue saving for his future while neglect our own. We will continue finding resources for after we are gone. I would rather be the ants who are prepared for winter and be pleasantly surprised when winter never comes.
2 comments:
You have to walk a fine, line Blake. We are different people with different experiences, but I wholeheartedly believe in hope, that all things are possible. The brain is an amazing thing, and if Autism has to do with the brain (which sounds like it, based on my minimal knowledge), then I say why not? The brain has been known to rebuild itself, to make new connections, or to find alternate ways to get along (or around) past damage/problems.
I think the bigger danger you may run in to is possibly marginalizing the possibilities in Little Bug. If it is possible to actually cure Autism (either by the brain making those connections on its own or through therapy, or both) and you don't believe it's possible, there may come a time when LB may benefit from something that you may not be open to due to your own beliefs.
I'm not trying to judge, or to say you're wrong (how do we actually know who's right when it comes to something like this?). I'm just saying, though it's painful to get your hopes up only to be let down, it's important to keep hope alive. You just never know what's around the corner and what could be of benefit to your child.
My brother is a type 1, insulin-dependent diabetic and has been since he was 7 (he's now 26). We all learned, and he has learned, how to live with and cope with his illness with the help of doctors, dieticians, etc. However, if there were ever a hard and fast cure for his form of diabetes, I would hope (and I'm sure he would) he would jump at the chance to escape survival mode. Not because of any sort of desire for him to be "normal" (what's normal, anyway?), but so he could escape any long-term damage from his disease, so he wouldn't have to be hooked up to a pump (or give himself insulin shots/poke himself to test his blood sugar). He will forever be shaped by the experiences of his illness, but being cured allows him to escape survival and actually live.
Sorry so long-winded. My two cents. :)
Especially after seeing Little Bug yesterday Blake, I have to say, yes, I think there is room to hope.
I know you know we are also stuck in survival mode. We are at a point were even though things are improving, we're still not even close to "normal"
We may never be to normal. But if give up, if we only plan for life dealing with this condition...I can't ever escape.
You two are wonderful, loving, supportive parents. And Little Bug couldn't ask for better.
Don't stop hoping. SEE his improvements and know he can get better. Not cured, but better.
THAT'S what you hold hope for.
~Bri
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