Monday, April 03, 2006

What I think I know

It seems there are some difficult conversations in my future. I don't really want to blog about them until they've been had, but the preparation has forced me to really think about how to articulate what I believe Bud needs.

There's a lot that I don't know about what he needs. Sometimes I don't know what he needs until he gets something he doesn't need, and it all becomes clear in hindsight. But as I think about it and consider it from multiple perspectives, I keep coming back to the same thought.

I think that Bud will do best if we - all the people in his life - concentrate our energy on working with Bud, and not on working against autism. Am I being nit-picky with semantics again? I'm not sure; maybe I am. But it just seems as though that shift in philosophy - that (perhaps) subtle shift from a focus on the negative ("working against") to a focus on the positive ("working with") - is huge. For Bud. Or maybe for me. Or maybe both.

I think.


Gemma said...

I completely understand your nitpick. And it is a very important point of view. I remember telling someone a about 18 months ago that even if I could wave a magic wand and "fix" my son, I wouldn't. And although I have thought and thought about that conversation a hundred times I still have to say that (albeit with a little more thought this time) that feel the same. My son is who he is, and I wouldn't want to change him for anything. I want to make things as accessible and helpful for him as possible, but I don't want to alter any thing about his person at all.

And I think that it's all about "working with" and accepting the whole package, good parts and not so good parts. So "fighting the Autism" isn't necessarly helpful to me either. Just helping Kiki is what I want to do.

You are such an awesome Mama. Bud is real lucky ;)

kristina said...

It's a contentious world out there---here---in Autismland. I do think we--parents, bloggers autistic and not, and who knows how many others across the blogosphere--are passionate about our kids and about autism and---in the words of George Eliot in Daniel Deronda---"passionate people get pelted."

Funny how words do seem to hurt more than those proverbial sticks and stones.

Estee Klar-Wolfond said...

True wisdom lies in all the unknowing -- the questions, the doubt, the paradox.

Through this kind of questioning, our collective views regarding autism will evolve.

Alana said...

I'm with you on this one. It is why I say, I am "for peace", not "against war". Semantics is important for shaping our lives, and while sometimes different words hold different emotions for people, so while I mentioned that "stim" is a neutral word to me, "for", "with" and "against" are pretty clear.

Jannalou said...

I've written about the difference between "working with" and "compensating for" my ADHD.

Working with my ADHD means that I am using my ADHD traits to accomplish things.

Compensating for it means that I am continually pushing myself beyond the breaking point, trying to appear "normal" and putting extreme pressure on myself to exceed expectations. (Note that this is not something that was pushed on me because of my label, since I didn't have one as a child.)

Christine said...

You know, sometimes a subtle shift in how we perceive things can have a dramatic impact. I am sometimes embarrassed when I think of my own initial reactions to Oliver's diagnosis. I was too much "working against" and not enough "working with". I wish I had been able to stop and consider the import of those two prepositions much earlier. But I'm there now and I guess that's what counts. I often think of my own mental and emotional journey in autismland as I do the shift of tectonic plates: slow but seismic.

Anonymous said...

The difference in wording is far more than a semantic nitpick. With so much "war against autism" rhetoric in the media, parents are being conditioned to feel as if they have been forced into battle against a horrible child-devouring monster. All those negative emotions harm autistic children, harm parents, and harm society as a whole.

And yes, the shift in focus -- from frantically expending all one's energy in obsessing over how to fight a huge nebulous monster (as many parents initially do) to making a calm assessment of a child's actual needs and working with the child to address these needs -- is indeed huge.

Anonymous said...

I think you're exactly right to question the "nit picky" part of the decisions we've all faced. I've tossed and turned about ABA therapy. I'm trying to except the method of language preparedness my speech pathologist is trying to offer.

Sometimes you want to fight the good fight and other times you just want to know that you're doing everything you can for "your son".

Anonymous said...

OK. Multiple perspectives. Here we go:

This morning my nearly 5 year old daughter woke up with a wet pull up. She didn't notice she was wet, possibly due to sensory issues. I had to prompt her to remove the pull up and wipe herself. It was pajama day at pre-school, and I had to prompt her to put leggings on under her nightgown so she'd be warm. She also needed help with her mroning routine - brushing teeth, washing up, etc. She was in and out of her sister's room and it took a long time to get her focused so that we could go downstairs for breakfast.

My daughter:
This morning my nearly 5 year old daughter woke up with a wet pull up. She was so excited about pajama day at school she did not notice. SHe asked me where her red nightgown was, because she wanted specifically to wear it - it's her favorite - she likes the flowers on it. I reminded her that it was cold outside and suggested she wear leggings under her pretty nightgown. Her two year old sister wanted to play with her, so she ran back and forth from her room, laughing and smiling and playing some sort of sisterly game. We had to hurry or we'd be late, so I helped her brush her teeth and wash up. then we went down for breakfast. Oh, yeah, she's diagnosed with PDD-NOS.

Moi ;) said...

The only problem with semantics is that they can be used against you. Sometimes if you let down your guard, in the interest of being cooperative or working "with" whoever, then you are seen as soft, stupid, or too wimpy.

Bug didn't have a Dx for 10 years. Even though he had the autistic traits, without the Label, he "wasn't" autistic so they wouldn't give him the services.

Bud's needs will change from year to year, as therapies work/don't work. And when they don't work, if it will cost the schools money, don't plan on getting what he needs. Sometimes the idea of working "with" is too nice and they don't get the hint from being too nice.

My angle would be to work FOR the Child. He will do best when They do their jobs. If they give you crap, just remember that They work For You and For Him. You pay the taxes that pay their salaries. Don't ever cave in because of semantics. Being nit-picky for yourself is one thing. Being walked on is another, and don't think they wouldn't hesitate to do it.

Moi ;) said...

Oops left something out - don't know where the text when the school wouldn't give him the services -

That showed they were only teaching to the autism. They weren't really interested in what he could or couldn't do. You will find this out more and more as Bud gets older and more is required of him in school.

Wendy said...

Okay, here's what I *know* I know...It's been 4 days since you've posted and I'm going through Bud withdrawal! Post! Post! Post! :)