Monday, April 23, 2007

Minding the gap...

It's a gorgeous, almost post-Spring day today. Brendan was delighted to be able to wear his new, plaid, "nerdy is the new black" shorts to school today (with an InuYasha t-shirt, of course). I feel blessed by his change in attitude toward school, forged slowly over these past months. In previous years he's pretty much loved school, but this 5th grade year has been way beyond difficult for him. It's nice to have resolved so many of our recent "issues"- getting out of the house on time (& with our sanity intact), how to include him in the process of his learning to self-regulate, how to cope with his new braces...

Before entering the blog-o-sphere, about 6 months before starting my own blog in January of 2006, I knew very little about autism in the big-wide world. I had a one close friend with a kid on the spectrum & knew a few others to speak to, all of whom were invaluable resources, along with the professional members of the "village", as we learned about Brendan & life with autism. I had also met some more parents of autistic kids who seemed to me to be lost in their anger & grief, & this was one reason that Charlie & I stayed away from local parent support groups. We had the support we needed & didn't feel the need to contend with those who were in a very different place than we were. Before reading other autism parent blogs, I did not know what "curebie" meant, had never heard of chelation or mercury, was not aware of the vaccine controversy & autism. I did understand intuitively that some parents weren't going to be as accepting of their kids "as is" as we were, but I put that down to my own experiences as a disabled person & my experiences with developmentally disabled children when I was a teenager. In the nearly 2 years that I've been reading, blogging, & commenting in other blogs I've not only learned about the wide variety of perceptions of & attitudes toward autism, but have found a "niche" of my own, that of a supporter of neurodiversity & advocate for the acceptance, not battling or "curing", of autism. It may not be coincidental that, in my learning about my son's autism, I've come to understand myself as someone who is, if not on the spectrum proper, within hugging distance of it. I've learned this by reading what autistic adults have written about themselves & have found them to be the main, invaluable resources for my understanding of what going on in my kid's head, & to understand that I also have some understanding of his autism from the inside-out, too.

Some of the things I've learned online have not been nearly as uplifting & helpful- there are also a lot of angry people out there who feel gypped by the trick nature/vaccines/"scapegoat here" have played on them & their family. People who feel that they did not get the kids they were entitled to get at birth & are desperately trying to fix/change things. People who are violently anti-acceptance & want to eradicate autism & damn the consequences... When I try to look dispassionately at the different viewpoints, I can see how anger & despair can drive people to do irrational things, like put their children's lives at risk by subjecting them to "treatments" that are risky, unproven, & ultimately disrespectful of these children's right to a safe childhood. But as an abuse survivor I find it impossible to condone these acts of violence against children perpetrated in the name of love... I feel very helpless & sad & angry when I read of these thing happening, & that the prevailing voices that claim to "speak" for autism are these same, very conflicted people. In reality, these things don't affect me personally, every day. There are prevailing attitudes "out there" that do affect me, though- I guess it's hard not to internalise some things when you've heard them enough. One of the prevailing attitudes is that there's a hierarchy of "functioning" levels among autistics that divides them as human beings & us as families. It's hard to argue this, in some ways. Life with a non-verbal, minimally "functional" person is going to be radically different than life with my bright, witty, hyper-verbal son Brendan. No question, really. Where I object, though, is when there are subtle (or not) value judgements made about the value & quality of those lives, & the relative ease or difficulty of life with these differently-challenged autistic people. There is a subtle (or not) sense that I am not able or welcome to comment on the attitudes of those who have "lower functioning" kids because my kid is "high functioning". This is not true everywhere, I'm happy to say, & parents like Kristina & Kev, plus many others in the Autism Parents Forum are happy & comfortable sharing & celebrating our similarities, rather than dividing us all along the lines of perceived differences...

The point of all this getting-off-of-chestness is that lately I have been seeing & experiencing more & more of a gap between Brendan's self-desired & developmentally appropriate behaviours (such as making decisions, taking physical & emotional care of himself, & social functioning) & what he really can do... And on top of this, I am feeling somewhat oppressed by a prevailing attitude that raising a "high functioning" child is more rewarding or less heartbreaking that raising a "low functioning one". The truth is, of course, all parenting endeavours reach low points- life is not a bowl of cherries for anybody. Things get more difficult, though, for families with children that society either doesn't understand or rejects outright. Unfortunately, among any minority group there tends to be even more shuffling around in terms of who is "more oppressed" or more worthy of help or pity. I guess it's human nature. I am not really looking for help & definitely not pity. For all the sorrow, I adore my kid & my family just the way he/it is. What I am tired of is the subtle messages everywhere to be "grateful it's not worse" (ie: your child isn't "low functioning"). To be happy that he can "pass" some of the time as "normal"... the brushing off of my perception that his someday going to college & leaving home are not "done deals". So many people think that somehow his intelligence & wit will just overcome his significant difficulties. I look at his & our hard work & realise that perhaps this may not be enough for him to have the sort of life that he or we want for him...

Brendan had a really up-&-down weekend, as you may suspect from this preambling... Saturday we had the first of our newly-rethought japanese lessons (part of the general rethinking going on these days). I'd emailed Tomoko last week with some observations (that Brendan was participating less & less in lessons) & some ideas to revamp our approach. She was very happy & pleased to try some new things, & the result was that we decided that she & Brendan would spend the first half-hour to 45 minutes of lesson on their own, & then I'd either join in or Brendan would go off & do his own thing & then I'd have my part of the lesson. Brendan liked the idea immensely, & they had a lovely time together. I heard him (from my chosen spot, 2 rooms away) speaking & reading more japanese than I've heard in a long time, & lots of giggling, too. Over the past couple of days he's been filling me in on what they did, which has been a lot of fun, since I get his perceptions on top of it all :) Tomoko & I spent most of our time together talking about what I want to concentrate on in these relatively few weeks before we actually go to Japan, & chatting about her mother's visit in May. After japanese was a much-anticipated event- Brendan's best friend's birthday party. Brendan's buddy E likes active, noisy parties with lots of kids, so in the past few years his family has offered for Brendan & E to do something different together to celebrate, a wonderful & much-appreciated gesture. This year, though, the party was at a go-cart/arcade place & Brendan was really keen to go. We figured this was a good sign, & the party was only for a couple of hours, so things would be ok. Of course, things went much longer than anticipated, & there was no way to get Brendan out of there before it was all over. When he & Charlie got home loaded with prizes & tickets (for the next time he goes (!)) Brendan was pretty obviously not himself. He flitted from thing to thing for the rest of the afternoon, from frustration to frustration, rejecting any attempts to help him settle or calm down until, at dinnertime, he melted-down royally. At one point he was clawing at his eyes because of an OCD thought he couldn't get out of his head. It was really scary. He was able to surface sufficiently from his distress after about half an hour that he could take a suggestion for distraction- we offered to watch a movie with him- & it seemed as though a door had opened & he was desperate to get through it. He ran upstairs to the tv room & collapsed on the foof. I put in the new Pokemon movie & told him I needed to get my knitting. After quietly having hysterics downstairs, in relief, I think, I went back up to watch with him. Charlie made soup & milkshakes & brought them up to us. By the time the movie was over Brendan was exhausted & ready for bed. Charlie & I were, too, but we debriefed a bit first, agreeing that the overstimulation of the party was what had set him off, & wondering how we can back him off of events like this just at a time when he's finally, really wanting to participate...

Sunday morning was peaceful, although Brendan mentioned he had a sore throat (Charlie & I both said "aha" in our minds, since being under the weather probably contributed to the meltdown as well). He coped well with some frustration & tic-trigger exposure at church (a real triumph) & afterward Charlie & Brendan went down to our sailing club to fix the boat haulout & eat lunch, while I had a meeting to lead at church. In the afternoon they went to the hardware store & bought a new hammer so that Brendan could continue bashing at his rock, "Goliath". This morphed into playing Uno with the girls next door in the backyard for a while, then just hanging out & playing. Around 4:30 Charlie went up to take a brief nap & suggested that I ask Brendan to come in around 5:00, since he'd have been outside playing for 2 hours by that time. When I started the countdown (10 minute warning, 5 minute warning) Brendan begged to be allowed out longer. he even told me he wouldn't get "over-tired like yesterday" (the kid's thinking, all right...), so I let him have an extra 15 minutes... & that's all it took. From the time he came in he was out of sorts & Charlie suggested a shower before dinner, since he was wet from playing with squirt guns. Brendan went along with it, but at dinner, again, he began melting down. It was more of a minor meltdown, probably thanks to the relaxing shower, but still pretty exhausting. We were able to watch Kamen Rider Den-O online (the new episodes are posted every Sunday) & it was fun to talk about it (it's entirely in Japanese with no subtitles, so there's lots to talk about). Charlie & Brendan decided to read some together & I actually fell asleep on the sofa for a couple of hours, so Brendan was asleep by the time I got up. Again, Charlie tried to figure out what had happened & how to be proactive, but it felt more like hitting a wall...

The thing is, Brendan is in many ways developmentally ready to do so much more- play outside all afternoon, go to birthday parties, see movies in the threatre- but in reality, doing all of these things for too long overstimulates him & he can't cope with the resulting sensory & emotional overload. It triggers OCD thoughts & tics & overwhelming emotions. It feels, viscerally, like we have a teenager & a two-year-old simultaneously. How do we help him understand & accept that he can't keep doing what he wants to do? How do we help him to learn to recognise the signs of overload & remove himself from the stimulus, even though he doesn't want to? This is the gap I've been seeing more & more clearly, between Brendan's cognitive functioning & his emotional functioning, & it just gets wider as he gets older. I am reminded of how it felt when Brendan was younger- kindergarten & first grade- & I'd let him play outside for an hour after school, then make him come inside & watch tv (PBS & videos, of course) for the rest of the afternoon. I felt like the mom from hell- how absurd, to take your kid out of the fresh air & sunshine & tell him to sit & watch tv... But this was the only way that Brendan was able to cope with the rest of the day in relative peace & capableness. Now I feel like we're facing this whole thing again, but exponentially. He's bigger, more definite about what he wants to do, more driven to be social- all good things. He's also much more likely to balk when asked to transition from what he wants to do, to get hurt during a meltdown, & the emotional pain seems much more acute these days, with the added power of the OCD. He says he wants to die when he's in this kind of pain & this is terribly scary. We feel a very real fear that we may lose him someday to this impulse.

The upshot of it all is that I feel oppressed whenever I feel I'm being told that I "should" have a certain attitude toward raising my autistic son. Those who would minimise his & our difficulties by trying to compare them to those of being or raising a non-verbal autistic child are missing the point- Brendan's difficulties are real. His experiences are real & to describe him as "high-functioning autistic" has no value to him, personally. It oppresses him & us. It says "look how well off you are compared to this other person". He's still an apple in a world that values & prefers oranges. To tell him that he's a better-tasting (in some people's view) apple doesn't make things better. This relative valuation also gives messages about whose life is potentially more satisfying. It tells us that we should be happier because of our son's relative functioning, & that's just not right or true. I believe that anyone can be happy with any child, if they accept them for who they are & are willing to engage life fully with them- not from above & looking down on them, not from below & pushing them where they don't want to go. My life with Brendan is full of many things- most of them good, many of them wonderful. This doesn't mean that I am in Pollyanna unquestioning acquiescence of everything that happens. I hurt for Brendan, I worry about him. I occasionally let myself worry about the future (I'm trying to practise the buddhist concept of non-attatchment, for sanity's sake if nothing else). He challenges, me, too- my assumptions have to be rethought all the time. Thoughful comments in this blog often open my mind to things even my semi-aspie mind haven't imagined about where Brendan's at & why he does what he does. Charlie & I find life almost too full sometimes, but we are fully engaged with each other & with our child. There is great power & meaning in such engagement with life.

So... I am hurting from Brendan's difficult weekend (& somewhat difficult morning at school- I got a call & talked to him a bit after he was overwhelmed by tics at school). Somehow this hurt got me thinking about the messages we give & receive about autism & our children & families. And maybe, too, about life. To aspire to a pain-free life seems to me to be a waste of time & effort, & also foolish. Look what we learn from pain. To be angry about the pain is also fruitless. Through the pain I can still say that I love my kid no matter how he is. His life is very precious. I can worry terribly about losing him, but still see how important it is to help him learn, as much as possible, to launch himself beyond us. He is very courageous. He keeps trying- tells dumb jokes, jumps down the stairs, looks forward to the next event at Adventure Quest, sits at the girls table at lunch... he takes risks. He models such good behaviour for me, so what can I do but follow & love his & our lives together ?

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At 5:28 PM, Blogger Club 166 said...


I was reminding my wife last week that we cannot expect a linear progression (of skills, functioning, etc.) after we had an incident bad enough that I still can't get myself to blog about it.

There will always be ups and downs, and you just have to take the long view, and look how far Brendan's come over the last several years. Things will undoubtedly be more jumbled as puberty approaches, and hormones get thrown into the mix.

I think you're taking the right approach in focusing (mainly) on the here and now.

Perhaps some of Brendan's anxiety is related to your upcoming trip.

I also know the gut wrenching feeling when my son says that he doesn't deserve to live anymore, and that we should just kill him. He first said such things when he was 4. He's now 7. Those moods are very transient, but very scary.

All I can recommend in terms of advice is to get yourself a big rock of your own, have Brendan move over, put on some safety glasses, and take a couple hundred whacks yourself.

That, followed by some hot tea with lemon and a shot of whiskey.


At 10:30 PM, Blogger kristina said...

You've got one role model here---and thanks for sharing so much about him, and always so warmly written.

Again, a huge similarity with Charlie-supposedly-at-the-other-end-of-the-functioning-spectrum-or-whatever. I have to keep an eye out to for Charlie getting too "into" playing outside and getting 'revved' up and all excitedly and goofy and silly and jumping and running and yowling----he'll seem completely happy one moment and then crying desperately the next. I especially have been looking out for this when Charlie is getting near bedtime. If there is not some smile, some more relaxed way about him, as he settles into bed, then it's more likely for Charlie to wake up upset and unhappy.

I love being a parent----every moment.

At 10:25 AM, Blogger MOM-NOS said...

This comment has been removed by the author.

At 10:35 AM, Blogger MOM-NOS said...

Yes, yes, yes.

I just can't figure out why the concept is so difficult for people to grasp. I mean, it's called a "spectrum" for a reason. Can no one remember learning about a "spectrum" in grade school? I do. It was Roy G. Biv - red, orange, yellow, green, blue, indigo, violet - and I can't recall anyone suggesting that red end was either superior to or inferior to the violet end. They were just different.

At 4:43 PM, Blogger Lisa/Jedi said...

Thanks so much friends :)

I wasn't sure that I was able to pull all my ideas together coherently, but had to get it all "off my chest". We all do have wonderful models in our kids, don't we? :)

MOM- I have been a closet rainbow freak ever since I got too, um- not old, not dignified- too something to be a non-closet rainbow freak... maybe that's why it's not been hard to embrace this particular spectrum.

Kristina, it helps so much to see the similarities in our boys & see how your family does things- they are so close in age, so I'm not that surprised that they have so much in common. It's our commonalities that make us strong!

Joe- many thanks for the virtual hugs :) I will take your "prescription" under advisement, although I'll save the whiskey for Charlie, who actually likes it (but give me a lambic beer any time...).


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