More thoughts about "functioning"...

It has been a very busy weekend & my head is so full of thoughts that I told my friend Paula this morning that I've been feeling that it might explode! :) B was very kind this morning, after I explained to him that I had awoken at 3:45 this morning & not gone back to sleep until 6:00 because so many thoughts were swirling around my head. He has been having trouble lately with colours of things (dishes, cups, clothing) taking on unpleasant symbolism or causing unpleasant thoughts & I'm still not up to speed with this. He was just about to pitch a fit about the plate I handed him (we were a bit behind schedule for breakfast so I was doing some of the stuff he usually does), & I was just about to respond in kind... but I explained my overwhemedness & lack of sleep & he backed off immediately. Over breakfast he told me that he was very worried about the use of pesticides in the rainforests, & the cutting down of rainforests, & he just couldn't understand why anyone would let that happen to their land or country. I explained that over the course of decades & even centuries, the indigenous peoples of the rainforests have lost their traditional ways of life, so they have been encouraged to cut down rainforests to start farms so that they can feed themselves & earn money to live on. This was somewhat simplistic, but I didn't want him thinking that native people were all bad for allowing deforestation to happen. To turn things to a more positive perspective, I told him that there are people trying to help indigenous people all over the world to reclaim their ways of life & find markets for the traditional things they make. I also told him about the Heifer Project- that takes donations to buy animals that help people all over the world to reclaim their traditions & allow them to have better lives. B really sparked to this idea & decided to talk to his teachers at school about doing a class project to support the Heifer Project. Last year his class made things to sell, to give to the Red Cross for Katrina relief, so these kids are already motivated to make a difference in the world. B's teacher told B she thought his idea was a great one, & it turns out that other kids in his class have been thinking about the Heifer Project, too. So B did some online research at school today & with the info he learned, did a presentation to the other 5th-6th grade class, & they have agreed to become part of the effort as well. I was pretty amazed by how quickly the whole thing snowballed :) I love the idea of these kids feeling empowered to change the world...

When I picked B up from school (another good day, as you can see :), I heard the Heifer Project news as well as the news that B has decided to speak to both classes tomorrow afternoon about having Aspergers, OCD, & Tourettes, like he did last fall. Half of the kids were not present for B's previous chat, & he told me that there have already been some comments & misunderstanding about B's behaviour from the other kids, so B decided to take the bull by the horns yet again. He would like me to be there, too, so I'll go to pick him up a bit early so I can sit in. On our way home in the car I gently brought up the subject of how he refers to the AS, OCD, & Tourettes as "disorders". I asked him what he thought "disorder" meant & he said he didn't really know... so I explained that "disorder" implies something that doesn't work right. B immediately got upset, saying that that's not what he meant & moaning that he's used that term with the other kids before. I told him that it's ok, that kids can learn new terms. I asked him if he could think of another way of describing the AS, OCD, & Tourettes, but he was at a loss, so I suggested "differences" or "neurological differences". I told him that these are terms that are more neutral & don't imply that there's something wrong... Then we both changed the subject. B was telling me what happens when you say the "m-u-f-word" to a runrat ("muffin"- their favourite food) & I was giggling & saying "muffin" & Chibi was eeping... Knowing my kid he will mull the whole word thing over inside & sort out what feels best for him. As much as I don't want to put words in his mouth or dictate how he feels about himself, I also want him to be using the words that accurately describe how he feels about himself, & by his rreaction, "disorders" was the wrong word.

I have also been mulling over, in the back of my mind, the thoughts & feelings that the idea of "functioning" as applied to autism brings up for me. When I look at the popular images of autistic people in our culture, what I see is "Rainman" & brilliant but odd Bill Gates-types. I believe that we live in a sound-bite society that irritatingly refuses to think deeply about things, but insists on easily-digested images. This tendency hurts all people by expecting everyone to fall into easily-indentified stereotypes. I find it personally annoying when others assume that I am a "typical" middle-aged housewife, or assume that I am as able as I may look (since my arthritis pain is not visible, but very real...). I find it even more disturbing that the range of behaviours that my son displays in public alternately make people think him a prodigy or crazy. B has an amazing & imaginative vocabulary, which he uses to good effect, particularly when he's meeting people he doesn't know. Sometimes it feels as though he has learned to use it as a shield, to keep people at arms' length & help him to feel safe. Whatever his motivations, it is impressive & people remark about how smart he is (his "high-functioning" capability). Other times he's banging his head on things, running away, & moaning, which appears quite "low-functioning" & even self-destructive or crazy. The truth about my kid is none of these things, though. Thanks to feedback from adults with autism, such as my blogging-buddy Zilari, I have learned that head-banging is neither self-destructive nor crazy behaviour, but a way to reduce stress. B's use of a precocious vocabulary may also be a stress-reducer. But neither of these things define my kid, any more that the designations "high-functioning" or "low-functioning" could. To try to put him the the box of either of these definitions demeans him & his complex possibilities, right now & for the future (Kristina has a great post about the diminishing of services for kids with autism as they get older, which ignores their needs & abilities to be life-long learners).

My grandmother always said "while there's life, there's hope". I think this applies very well to my child & all children, no matter their relative abilities. The artificial timelines for learning that we have become so dependant on (to know whether or not kids are "learning") are just tools, & are only useful if they are used to give understanding of what kind of assistance a child may need to achieve their true potential. And potential really is always potential. I am still growing & learning, as I live... every day I learn something new. I hope never to achieve the end of my potential & I wish that for B as well. Let's hope that our society can be encouraged to keep on learning the truth about autistic people, & that the public's identification of people with autism will transcend "functioning" levels & stereotyped images.