Thursday, September 07, 2006

Home alone...

... ok, not really alone. Rufus is right here on the sofa with me :) I'll put him in for a nap a little later, once I catch my breath from the busy morning. The alarm in B's room, set for 7:00 am, woke us both up, which is unusual, since B tends to get up around 6-ish. I made sure he was in bed by 8:30 last night & he fell asleep around 9:00... I am having difficulty transitioning from staying up late & getting up later (than 7:00 am) all summer, so I had been depending on his alarm to get me going. B was a little slow getting dressed, said he was thinking, so I jokingly told him he's not allowed to think until after breakfast. We'll see how this goes, since this "thinking instead of getting dressed" thing is a well-established pattern. I had been using our getting-out-of-the house-on-time chart to help with this, but B & I decided over the summer that he doesn't need this chart any more (& he didn't seem to mind foregoing the little treats he had been earning...!) so I don't have that to fall back on any more. B wanted rice for brekkie, with soy sauce, eaten with chopsticks. I've been having him retrieve his own vitamins (multi & C), which he remembered just fine, & he poured his own milk as well. About 1/2 way through the bowl of rice he told me he was full, but that he couldn't figure out why. He pondered this until I told him he was probably distracted by it being the first day of school (I privately diagnosed a case of butterflies, but didn't think I needed to point him in the direction of nervousness if he hadn't figured it out for himself). He brushed his teeth & went to lego a bit before we left. I asked him to pick out who was going to school with him (instead of Rufus) & he chose Chibi, who fits nicely in his pocket. He chatted about Chibi the whole way to school- her pedigree, why runrats make the eeping sound they do, the machines they designed to collect mushrooms for them... :) At school we hiked up the steps to the third floor & found his locker. He unloaded & then made a beeline for his desk & sat down. Looked like he was home :) We read the instructions written on the white board by his teacher, Jen, to make a magnetic name tag for their lockers & also a "fairness stick" with their name on it (Jen explained that the stick was a system for fairly choosing kids to do things, so there would be less feeling that someone was being favoured). B wrote his name on his locker magnet, then asked me to write it in katakana for him, underneath the english, so I did :) He happily stuck it on, then I kissed him & told him I was moving on. He was calm & seemed comfortable with all the busyness around him. I wandered downstairs, chatting with folks, & found the special ed co-ordinator free, so we talked a bit, which reminded me that I hadn't told Cherie, his consultant teacher, about the new meltdown behaviours & the code words we've developed with B to help him tell us what's happening. So I went back upstairs to find her & we went into her office & talkedt. C & I had decided it might be best for them to call me if B had a meltdown, until they have seen one through with him & know what to do. I actually don't anticipate B having much trouble with meltdowns at school, at least for a while, although home time after school may be hairy for a bit as he decompensates from the new experiences & responsibilities at school. Cherie has also been thinking a lot about this, & although 5th grade is advertised as having more homework, she is going to try to keep it minimal until we are sure B has enough downtime at home after school & is getting his needs for non-school activities met. I was once-again aware of how grateful & blessed we are to have the same teachers as last year, even though B is in a new room on a new floor of the school. My morning (& the previous week, I expect) would have been very different if we were getting used to a new person as B's consultant teacher (aka "crash landing pad").

After talking with Cherie I flitted around, helping clean up some stuff here & checking in with someone else there, until I finally made my way to the first day parent's tea, where I was supposed to be greeting people, outside. Once there I found myself chatting with the parent of a girl who was in the 3rd-4th grade with B last year (she was in 3rd & B was in 4th). I had known this parent by sight & we waved at each other last year, but we had never spoken in depth... She asked me how B was doing, & I got the feeling that she knew that B might have adjustment difficulties (I wonder sometimes what other parents think of my kid & his interesting range of behaviours). She then explained that she has an older daughter with autism at another school, specifically for autistic kids (I'd never heard of it) which I certainly had never known. She said this daughter was "low-functioning", which I guessed was supposed to explain things. We were joined by a new parent to the school, but a friend of the mom I was talking to, who also has an older child with autism, mainstreamed in their district. They seemed to know each other from an autism parents' group, so I listened & occasionally chimed-in when it was relevant. I was really curious about this mom's "low-functioning" daughter. She mentioned that her daughter in B's class last year had come home & told her about B's behaviours in the class, & that she'd told her daughter that, "he probably has something that doesn't work in his brain like your sister" & after that her daughter seemed ok with the way B acts.

-Have you ever been part of a conversation that seemed to be going places very quickly & you don't really have time to react? That's just how I felt about this conversation. I would just process one idea or statement & another one would come along... This mom was nice, if a bit harried-looking, & having very mixed feelings about going home to an empty house for the first time in 12 years (her youngest had just started school, too). I could really resonate to that, since I'm usually a basket-case the first day B's at school. The other autism mom we were chatting with asked her if she was still using a special diet for her daughter, & she said that they had slipped away from it over the summer, beginning when the autistic child had tried to beat up her younger sisters when she saw them eating food she wasn't allowed... Another parent, a friend of mine whose kids are both dyslexic, joined the conversation at this point. She made a comment that indicated that this autistic 12-year-old might be behaving, developmentally, like a regular 12-year-old, but we were assured that this child was "low-functioning" by her mom. The mom did talk about how well her daughter responds when she's one-on-one with her, with no "behaviours" & no "stims" & I talked about what B & I do over the summer & how well he does with our projects & my flexibility. Eventually we both moved on to other conversations & the tea was over. I left school at 10:15 to go grocery shopping & got home just before lunch time. The whole time I kept turning the conversation over in my head, though.

I feel badly about some of what I heard this mom say, but I can't find it in my heart to condemn her. I know too well how our individual experiences as human beings make the raising of a child with autism an unique experience, as much as we all do have experiences in common. I feel strongly that society's overwhelming attitude that having a "different" child is somehow shameful has coloured this mother's life & that of her family. I wonder if the shame has taken away her hope- the "low-functioning" label she used repeatedly (even when reporting behaviour that I would not consider to be "low-functioning") seemed very much taken for granted. I'm sure that having 2 youger children has made it difficult to provide her child with the carefully crafted life that C & I do for our smaller family, & I have no idea how involved her husband is in the raising of their children. I have to admit that the "low-functioning" labelling grated on me, & that she described my son's brain as "not working" was uncomfortable to me, since we explain things much more completely to B, & try to help him feel comfortable with his neurological differences. I like to imagine that, if I were blessed with a "lower-functioning" child, I would give them just as much care & find just as many things to like about them as I do B. I guess one reason & don't like labelling people as "high-functioning" & "low-functioning" is that it ignores so many other things about them, & it also assumes some things about my kid that are not fair to assume. He is very bright & has never had difficulty with speech (although he receives pragmatic speech support), however he did not have normal vision until he was 7 years old & that still leaves it's mark on his life. B is a "head-banger", but he can turn around later & discuss it with you. B has amazing potential to go far in the world, but I also see the possibility that he may never leave home... How do you categorise someone like that's "functioning"? It just seems silly to me to try. Am I being stupid? I do not intend to insult any people who have something invested in describing their child by their functioning, & I certainly am aware that my kid is mainstreamed (with a huge amount of support) where there may be kids out there who are not candidates to be in a "regular" school. But I feel it diminishes everyone when we try to describe people by something as fluid & subjective as "functioning" & I really don't want to see anyone that way. Having experienced the shame & uncertainty of having a child that sometimes behaves inappropriately in public, I can understand that it might just be easier to lump a complicated set of behaviours into something the rest of the world can understand... but I resist doing that. I don't mind the label "autistic" for my child, but I do mind his being pidgeonholed by those behaviours as something that he isn't.

I think it comes down to compassion & the ability to imagine behaviours as neutral- neither bad not good. Reading what Zilari has said about the stress-relief of head-banging behaviours has helped me to view this less negatively. I still want to protect my kid from injury, but I don't see it as a pathology any more. Compassion for my kid makes me want to understand him & not judge him. Compassion for myself allows me to feel the societally-applied shame, but to move past it, to find groups of people who do not view my kid or my family in a negative way, so that I don't have to live in or with shame. Compassion for others helps me avoid judging them, to see their humanity, to keep in communication with them so that we may learn from each other.

I sure got more than I bargained for on this first day of school :) I learned a lot. In about 1/2 hour I'll go get B & find out how his day went- I really can't wait to find out :) Then we'll have a snack, do the homework thing if there is any, then maybe he'll lego or we'll watch some Kratts' Creatures. Mostly, though, we'll play it loose & flexible until I have a good sense of how shool is affecting B. I am trying to imagine the next few weeks, with time to myself during the day- what am I going to do?


At 11:54 PM, Blogger Zilari said...

I've been meaning to reply to this post for several days Lisa, you are a wonderful example of someone who really "gets it" with regard to the real "problem with autism" in society (a lot of it has to do with people's presuppositions and double standards! And has little to do with actual autistic people.), and the problem of trying to define people arbitrarily in terms of Functioning Level.

The 12-year-old girl being described by the mother you refer to DOES sound, developmentally, like a twelve-year-old. Twelve-year-olds ARE prone to jealousy, especially when siblings are involved, and I'm sure there are plenty of nonautistic kids the same age who get into physical altercations with siblings. This doesn't mean parents shouldn't intervene and teach kids to work out conflicts nonviolently -- of course they should.

But it certainly doesn't mean that when an autistic 12-year-old gets into a fight, that's indicative of a "low functioning level", while a nonautistic 12-year-old exhibiting the same behavior is "just being a kid". The means required to teach both kids to deal more effectively and safely with angry feelings might differ, but in neither case should the child be thought of as a pathology!

It really is amazing, as well, how people can just make assumptions that autistic = "brain not working right" without even being aware of what the implications of this are. Unfortunately, the media perpetuates this "healthy brains are not autistic brains" quite thoroughly; I came across an article the other day showing brain scans and they were actually LABELED "Healthy Brain" and "Autistic Brain"! My first thought was, "Hey, autistic brains can be healthy too!"

I often run into situations wherein I think it would be useful to explain some things about myself from the autism standpoint but it is very difficult since people tend to have this "high functioning/low functioning" thing in their minds.

I tend to prefer the description "variable-functioning" and I think this description applies to basically's environment-dependent to a large extent, IMO.

At 1:16 PM, Blogger Lisa/Jedi said...

Thanks so much for your comments & encouragement, Zilari. I am still thinking hard about this "functioning" designation & how it complicates my kid's life. I hope to pull my thoughts together soon & share them...

At 4:58 AM, Anonymous sharon said...

Hi Lisa
I've left a few comments on your blog recently, or thought I had, but they didn't stick! I've been having problems with comments since I switched to blogger beta, but never mind.

What I wanted to say is, I think it is wonderful, how you describe how you approach the situations that arise with B, and your thoughts on what causes them. I'm sure it's helpful to you to record all this, but it is also great for others like me, facing the same kinds of situations.

At 11:07 AM, Blogger Lisa/Jedi said...

Hi Sharon- I tried to leave a comment on your blog yesterday but it was denied... I am also having trouble with the word verification thing, having to try more than once to get comments to stick, but I find it necessary in my blog because I was getting some unwanted links :(
Thanks so much for your comments & your blog posts, too. I resonate so much with what you are writing. I love your "Thomas" paradigm, too! B & I had so much fun with Thomases when he was little...


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