Friday, July 11, 2008
The holidays, autism research and the rain
I have been in hiding this week, I've crawled into my bunker and raised the white flag, I well and truly surrender. My children are rather feral at the moment. It could have been because I took away all access to the computer, wii and dvd's until they tidied the pit of doom that was their playroom. We.. note the WE, not them WE finished it, I even took photos and labelled all the toy draws. Now all you can hear from our house is my shrewish yells.. boyyyyyyyyyyys come and tidy the playroom.. who did this, why is that in the wrong box. You should see how quickly they turn on each other.. he did it, it wasn't me, but he did such and such it wasn't me. So after 4 days the playroom is tidy but we are all worn out and the rain doesn't help, except for Monday when we went to the park for a couple of hours we have been house bound. Today we are off to see kung fu panda, they think that is pretty awesome and I wish I could take a book with me.

Another week of holidays.. I will get through, I will get through

Then this morning I read an article in Time called New Clues to Autism's Cause. This is what we have always thought, I was a bit uncomfortable about the wording, because they are talking about children, and my child, it all sounds a bit clinical but I understand that they aren't emotionally involved.
Symptoms of autism typically emerge during the first five years of life — a period when a child normally picks up language, social skills and many other new abilities. Scientists call this kind of growth "experience-dependent learning," and researchers know that it is associated with enormous changes in brain circuitry. At least 300 genes switch on and off to regulate experience-dependent learning. Defects in any number of them could conceivably result in some symptoms of autism. There may be hundreds of varieties of autism. From what researchers have seen so far, says Morrow, "It looks like almost every child with autism is different from the next — a different gene is mutated in almost every child."

This is so true, throughout our trip through early intervention I never saw another child just like Alec, they were all such individuals. It makes you appreciate the work the EI therapists do in compiling programs that meet each child needs.

This suggests that certain therapies or drugs could help normalize the activity of these genes, according to Dr. Eric Morrow of Massachusetts General Hospital, one of the lead authors of the paper. In fact, Morrow suspects that early intervention programs for children with autism involving intensive instruction in speech and social behavior may work by altering the expression of affected genes.

We found EI (early intervention) was amazing, you could virtually see those pathways being built as Alec learnt communication and comprehension. It doesn't yet explain the sensory and Proprioceptive deficiencies but this is a start. Alec isn't entirely aware of where his body is in relation to things around him, we have some exercises and aides for him to help, especially at school, the sensory issues we work on, he is affected by lights, noise and people, many things overwhelm him but he is learning the signs and lets us know what he needs and at school he is getting better about voicing his needs. We know Alec lacks empathy this is a slow process teaching him about feelings especially when he doesn't understand many of his own.

Everyday we learn something new, our lives are slightly micro managed, but they have to be, Alec needs a controlled routine, he needs to know what is going to happen next. Now though instead of having that routine set in concrete we are at a firm jelly stage, things crop up, we can take a detour on the way how or just drop in to see someone. Before he would wake up check his schedule and that was it, nothing could be changed. He knew the roads we drove, the way to places, those days seem far in the past but they aren't, we just made progress but Alec will always be autistic.

I've heard some truly frightening things online from parents of autistic children this week, they want a cure but as this is genetic then the only cure is a eugenic one, prenatal screening and termination and then one parent actually suggested euthanasia. This isn't some stranger this is a childs parent. My children are my life the fact that one is different from the other doesn't mean he is any less treasured or loved.
6 Comments:
Alli, thanks for the link and info. It's always great to be informed especially when it comes to our kids.
Thanks for sharing,
Pete

Blogger jill said...
Had to laugh at the playroom cleaning story. Being a mom :)

As a psychologist who works primarily in schools I'm always interested in new info re autism. I'll have to see if I can find the Time to read the rest of the article. TFS!

Blogger domestic goddess said...
Great links there Alli - your children are fantastic and you are nothing short of a brilliant mother!!!! Keep going - they will make you prouder every single day!!

Blogger Heather said...
I can hardly wait until we get to that WE clean stage! But I'm training him early!
Wow! Interesting and scary information about autism.
Oh, and the goodie posted on my blog is a smore. Graham crackers, marshmallow (roasted) and chocolate bar!

Blogger Sandra Collins said...
Thank you so much for this post - I have learned so much reading this. And as for the playroom story - too cute!!

Blogger Krissynae said...
Love the vent about the playroom. May they keep it clean. Beauiful entry about your son Alec.