Monday, April 30, 2007

Disablism in action...

One of my favourite recent posts is Of Boxes and Bias from Anne C's Existence is Wonderful site. Her initial paragraphs describe perfectly the mechanism of Disablism in action.

Today's post is my contribution to the May 1st "Blogging Against Disablism Day" (follow the "Disablism" link above or click the colourful logo in the sidebar for more info). I have been running up against Disableism- predjudice against those perceived as disabled- since the early 1970's, when I was in my early teens & started working at our local United Cerebral Palsy's summer day camp. In my mid-teens it became more personal. My family discovered that I had subluxing kneecaps, a genetic condition, & I began many years of surgeries, crutches, canes, 7 years in a wheelchair, (for reasons beyond just the knee problems) & ultimately lifelong arthritis from it. I remember back then people asking me if I'd broken my leg, when they saw me on crutches, & as time went by their breezy assumption that I had something "fixable" became more annoying than comforting.

Fastforward to 2001, the year we discovered that our 5-year old son had severe developmental delays, which were diagnosed a year later as Asperger's Syndrome (an Autism Spectrum Disorder). Over the past 5 years since his ASD diagnosis, Brendan has also been diagnosed with Obsessive Compulsive Disorder (OCD) & Tourettes Syndrome. The kinds of disableism that Brendan faces are different than those I did (& still do to a certain extent) face- he is not as readily recognised as a person with a significant difference, unless he's ticcing or having a public meltdown due to sensory overload. The barriers he faces are not those of "stairs but no elevator" but those of a more subtle type. Sights, sounds, & smells that most people may not notice or even find pleasant can be overwhelming to him. Some have OCD associations that produce tics- twirling or loud, explosive noises, or full body spasms. Many of the barriers Brendan faces are educational. He does not write fluidly & finds even typing not to be a fluent interface for putting his words/work down on paper, so we've been trying volice-activated software to see if this will help him. Brendan is working on pragmatic speech with his speech therapist so that social interactions will have fewer barriers, & with his occupational therapist he's working on motor co-ordination & planning, & relaxation techniques that he can use when overwhelmed by sensory or OCD overload. He takes 3 different medications to help control the OCD & tics, & sees a psychologist regularly for cognitive/behavioural therapy so that he can do & be the best he can be. We are very fortunate that his school (a private, alternative school) is progressive & works well with our district to provide an optimum educational situation for him. His teachers like him & want the best for him. From reading other blogs of parents with autistic kids, I know that we've found a rare & wonderful situation for our kid, & we're already nervous about what we'll do in 3 years when he graduates from this school & moves on to high school. We are also very fortunate to be connected with a church community that has allowed us to expand our (& Brendan's) social connexions in the world while maintaining a safe environment for him. We have been part of this church for many years (pre-dating Brendan) & have shared our journey with him & his neurological differences every step of the way. He's fully integrated into the Sunday School (we were his first teachers, then weaned him onto other adults :) & has friends young & old at church.

Where Brendan runs up against disablism the most is, of course, in public & when interacting with people he's never met before. His tics often take people by surprise & they don't know what to make of them. When feeling comfortable, Brendan's been known to clue people in ("I have Tourettes, in case you were wondering.") & we are delighted by his self-advocacy. We also know (& worry) that he is more vulnerable to bullying because of his tics & social difficulties. Bullying is a significant &, although common, extreme manifestation of disablism. Bullying takes the range of what could be "normal" behaviours & narrows them to only those acceptable by a certain group. We do a lot of talking & problem-solving with Brendan when it comes to the possibilty of bullying. The last thing we want is for him to become a victim. The thing about being in public with Brendan is that we can't always change the things that give him sensory overload or trigger the OCD, so we have had to modify how much we actually interact with "public", & how we interact, over the years. In a way, it was a lot easier when he was little- people don't think twice about a tantrumming 3-year-old in a store, nor do they wonder if he's tantrumming because he's autistic (at that point, even we didn't know...). However, an 11-year-old having a meltdown in public is very different. It's not only embarassing for him, but people fear "aggression" & worry about "violence" before they really understand what is causing it. As a result, we have become extremely sensitive to signs of overload from Brendan & take steps to remove him from the stimulus before it becomes a problem. We also plan any trips out of the house, whether they be to the grocery store or across the country, very carefully & with his daily rhythms in mind. Perhaps this is where Brendan can most be considered "disabled". He just can't take part in the sorts of activities expected of kids his age, & although he's doing a beautiful job of learning about what he can & can't handle, & what to do about it, he still needs a lot of help.

Perhaps the most painful incidence of Disablism we've faced so far was recently handed to us by Brendan's paternal grandparents. They don't see him more than 3 times a year, since they live about 5 hours away part of the year & in Florida in the winter. We have done our best to keep them apprised of his progress, & also let them them know about the current difficulties he's having before they come to visit or we visit them, with the idea of making the visit go more smoothly. Charlie & I had really thought that they were "on board" with Brendan's autism & accepting it as well as could be expected. But last week we received a letter from them accusing us of overstating his difficulties & "needs", & also accusing us of rudeness during our last couple of visits because we'd chosen to remove him from situations a bit early because he was becoming stressed (once he was in full meltdown & we barely got him to the car...). The main evidence that shows we're not being honest with them turns out to be our up-coming, long-awaited family trip to Japan (!). In their minds, we'd have to be crazy to take "a child like that" (with Brendan's difficulties) to Japan. So, in their world, "a child like that" doesn't have the right to travel to a place he's wanted to go since he was 4 years old. No matter that he's been studying the japanese language for 2 years... And, of course, there's no recognition of everything we do to tilt the scales in our favour when travelling with him- planning our days carefully for sufficient down-time, choosing quiet places to stay, helping him cognitively focus in advance on the places we'll visit so that he'll have points of reference. There are, of course, a lot of other, long-term, family-type issues going on in the background of these accusations (which we are consulting my therapist for help in dealing with), but I can't escape the disablism inherent in the assumptions being made about Brendan & autistic people by their attitude.

Attitudes, of course, are what disablism is all about. It's pre-judging people based, not on factual information, but on what is believed to be true about people. One of the ironies of having an autistic child these days is that the loudest voices in the media these days about autism, by a group claiming to "speak" for autism, refer to autistic children as "poisoned" by mercury or vaccines, "train-wrecks", & dwell on the general horribleness of dealing with autism. They perpetrate essentially false images of people with autism, supposedly in the name of advocacy (!), but what they are really advocating for (& fundraising for) is a "cure" so that autism will be eradicated from the face of the earth- a breathtakingly callous way of talking about something that is central to the lives of so many people. Even the language of recent legislation in the US supposedly designed to help autistic people & their families is called the "Combating Autism Act", which brings to mind destruction rather than assistance... The reality for my family & many others, & for many autistic adults, is far different than the stereotypes. We love out neurodiverse son for who & what he is. We give him everything we can to help him blossom into the person he will become (as we would have whether or not he were autistic), but we love his autistic self very much. I believe that his autism is an essential part of who he is. We don't want a cure- what we want is for the attitudes of society to change so that there will be fewer artificial barriers to his achieving his dreams. That's really what disablism is- artificial barriers to progress for anyone. I remember vividly, when I needed a wheelchair to get around (& to play basketball & "run" races in), wondering what made me a "disabled" person- the wheels, or the flight of stairs that kept me out. I can ask a similar question for my son, too. Is he disabled because of his neurological differences, or because society has put particular barriers in his way?

The good news is that things have changed a lot since I first became aware if disability rights issues. I have seen attitudes toward the disabled shift, kerb cuts become the norm. It's not nearly what it should be, but change has happened, through the hard work of activists. Awareness of autism is shifting, too. The moderate & neurodiverse perspectives are being heard, & the sheer numbers (not an epidemic, as some would declare, but better diagnostics & less stigma) of kids identified as autistic or pdd-nos are making a once scary & isolating diagnosis much more common. I am surrounded by other parents, now, who are wrestling with their school districts & IEP's, comparing notes on pediatric neurologists, & sharing references for good child psychologists. :). And, drumroll please, we are taking our autistic kid to Japan this June. Just our small contribution to countering disablism... :) Let's all do our best today (& every day, of course) to be aware of the attitudes & predjudices that surround us, & do our best to let it be known that we can transcend these barriers, & that the world is always a better place when we do.

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Friday, April 27, 2007

Rhythms of life...

Well, I think that last post really took it out of me... kind of like I've been sucked dry of words. Life is still happening, though. Brendan's had a tough week, with many of the "issues" being very much related to the "gap". My sense is that he tootles along at school pretty well for a while & then, bam!, life expects a bit too much of him. Yesterday afternoon, when I went to pick him up from school, I sat in the parking lot & waited for him to come out (as usual) after waving to him in the 3rd floor window outside his classroom. I waited... & waited... finally I saw him again, with Cherie, talking. He looked rather miserable. I thought I saw him bang his head on the window & decided to get out of the car. Cherie indicated that I should come up. The scenario turned out to be: Brendan saw me in parking lot (at the agreed-upon time), went to get his stuff out of his locker, was intercepted by his classroom teacher & asked to do his pitching-in job (I guess things went late, because they're usually done by the time I get there), & Brendan freaked. Looked at from his point of view, I understand perfectly why he freaked. To my mind, you don't ask a kid with autism to delay end-of-the-day gratification (mom's here. going home!). To his teacher's mind, I suspect, a kid who attended really well in math class & had no trouble today in music class is not triggering "autistic" in her mind, even though she's completely on board with his autism & his needs... So she asked him to do what the other kids were doing. When I spoke to Cherie (Brendan's consultant teacher) this morning I told her that Charlie & I were thinking that one last team-meeting might be a good thing, just to get us throught the last 6 weeks of school. Brendan's changed so much since the winter break- it'll be nice to speak of these things & get everyone on board for where he's at now. In other words, let's get all of his teachers & therapists up to speed with the gap so that the great progress he's been making isn't undermined by escalating expectations. Cherie thought that a meeting was a great idea & will find us a time. The truth is, I read so much dreadful stuff in other parents' blogs about their schools' attitudes towards their children that I feel a bit guilty kvetching even a bit about things like this... Brendan's school & teachers are stellar. And part of the reason is that they're so open the the occasional tweaking necessary to keep things running smoothly.,,

One of the things complicating matters at school is Brendan's circadian rhythms, life-long ones, for up-times & down-times. The down-times make him particularly vulnerable to the OCD thoughts & tics, resulting in fatigue, & circularly, less patience with the OCD. He's in a definite slump right now, so it's been important to structure his downtime as true downtime- no demands. I had been thinking of doing some cleaning in his room with him (gotta make room for all the birthday legos) but realised that there was no way he'd be able/want to participate. I thought about it & realised that re-organising things wasn't going to upset him (re-binning the legos in a logical fashion so that they're out of the way & easier to find), so I went ahead & did it this morning. It was good for me, too. I've been leaving school lately rather depressed, worried about leaving Brendan & about some other things, too, so having a definite, ultimately satisfying job to do really helped. I'm looking forward to showing him what I've done, & seeing what he thinks of actually being able to walk through his room without tripping :) (I'm anticipating a positive response...)

After tidying, I moved on to blog-reading & found myself crying over Estee's recent post (guest-posted) called When What Seems Broken is Perfect (the link to that particular page wouldn't come up, so I had to link to the site instead). It made me think of some of my fears about how my child's life is seen & valued by those outside my family... Happily, I also took the time to listen to the Revolution Health podcast that Kristina posted yesterday at her Autism Vox site- a conversation she participated in (along with some other well-known autism blog voices, such as Autism Diva). It was a great listen & heartening, to boot. Well worth the hour-ish (I didn't time it) of time (I knitted some & braided a headband :).

The weather has been more co-opertive than expected (it was supposed to rain all day, but it's beautiful & sunny right now), so Brendan & I should be able to have what's become our daily walk. He's been quite enthusiastic about walking around the block with me for the past week, so we have good momentum to continue :) It's a great thing for both of us to be doing. We're looking at another really full weekend- japanese lesson, work day at the sailing club, then on Sunday church for all of us & a tea party (school fundraiser) for Charlie & me (Brendan is happier staying home with our goddaughter). It'll be good to have things like going for a walk to anchor us to everyday life.

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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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Sunday, April 22, 2007

If I had a hammer...

Brendan's been going about the house singing this song- I'm not sure where he learned it because he's not using the Peter, Paul & Mary cadences I learned as a child... But it's apropo, for sure. Ever since mid-last-week, when the weather cleared up & became Spring-like, Brendan's favourite outdoor activity has been hitting rocks with a hammer. I've begun referring to it as "doing hard time" to other adults who might understand what I'm talking about (he doesn't) :) It's been great. He's not a big physical activity kind of guy, so it's always been difficult to motivate Brendan toward fitness activities. He's had a love/hate relationship with gym class at school all year, mostly because there has been an emphasis on martial arts & Brendan hasn't been comfortable with that for various reasons. He did enjoy last week's class, though, which focused on self-defence moves :) After Brendan got so stuck in his anger a few weeks ago (that he did some hazardous things) Charlie has been thinking of ways to help him "get it out". He found some break-your-own geodes on his workbench & decided to let Brendan have at them, with great success. I ordered more geodes to break, but Brendan, in the meantime, has found much bigger, ehm, fish to fry...

The rock in the pictures was nicknamed "Goliath" by Brendan last summer after we helped him haul it out of his backyard mud hole. Last year's physical activity was digging a hole in the back yard... until he met Goliath. The hole remains, nicknamed "Brendan's mud hole" for obvious reasons, & it gives him great delight on rainy days to check & see if it's full or overflowing with water :) Anyway, Goliath had taken residence under a tree & Brendan decided to tackle it until the geodes arrived. He & Charlie lifted it onto an old sled so that he could slide it closer to the house (I don't know why) & Brendan began whacking away at it. The first thing to give, unfortunately, was the hammer. The next day, with hammer strapping-taped back together & the addition of eye protection, Brendan went back at it. The kids next door would periodically interrupt their basketball games to come & give it a few whacks, too, & it's become quite the conversation piece among the neighbours. (Reminds me strongly of Tom Sayer & the fence, actually.) We replaced the tape on the hammer frequently all week long, & he kept at it, sometimes for an hour or 2, after school most days. (One benefit of this whole activity has been that he falls asleep really quickly at night :) and although he's needed treatment for minor scratches, there have been no blisters...) Brendan was just about giving up on doing much of substance to ol' Goliath when, this afternoon, he & Charlie hit the hardware store & bought a new hammer. I had pre-nixxed the sledgehammer idea as too dangerous, but the one they came home with (in the next picture) was definitely a step-up from the original... In fact, within half an hour Brendan had reduced Goliath to this:

According to Charlie, he had to tape the new hammer because it started to break. (shaking head in wonder) I guess we can file this under: "How to help your kid feel strong & productive & even kind of cool". :) My main question is- are the geodes I bought going to really fit the bill, now that he's reduced a huge rock to shards? Maybe he'll be happy to produce shiny sand from them...

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Wednesday, April 18, 2007

Practical applications...

The timing was perfect... after Monday morning's blog entry about re-thinking my expectations of Brendan, we had a regular, monthly, after-school appointment to see his psychologist. Brendan came bouncing out of school like a cork popped out of a bottle & as he piled into the car, announced that he felt like an "office-worker". He further explained that he'd gotten a lot of work done & had a bit of a headache, but his mood was quite positive, so I got the feeling that he was feeling good about his day. :) While he ate a snack, I asked him what the best part of the day had been (his weather research! Something that he'd been not very happy about before break...) & then what he'd done at lunch time, since we'd discussed this during our "food chain" conversations last week. He'd ended-up eating in the classroom with another friend (someone who's been having a lot of trouble with "food chain" issues lately) & avoided sitting at either the girls' or boys' tables. It sounded like they'd had a great time chatting & generally being silly over lunch. When I asked Brendan about the friend he usually sits with, who often triggers tics for him, he said that when this friend had asked to sit with him Brendan explained that he'd like to do something different that day & that had seemed alright with the other boy. (Tuesday's lunch update: Brendan asked one of the girls he's known since first grade if he could sit at the girls' table & she told him of course he could. When one of the older & higher "food chain" girls challenged him, he told her he had permission :) When the boy who triggers tics asked to sit with him, Brendan suggested that they play together during outside time instead, which was acceptable. Wow! Go Brendan...)

In the car on the way to our appointment I found that I had loads of things to talk to Brendan about, so after the schoolday debrief, I told Brendan that I'd been re-thinking some things & wanted his input. We talked about his behavour charting & how I was concerned that he'd outgrown how we're doing things. I told him that my observations lately have led me to understand that expecting zero meltdowns/blowups from him is unrealistic, since all of them are triggered by things outside of his control. I explained that I'd like the criteria for his earning or losing his "number" for the day to be based on how well he copes & recovers from meltdowns. Brendan thought that was fair, so we discussed the kinds of behaviours I was talking about: using self-talk, distraction, & other tools to help himself to recover, being proactive by telling us how he's feeling or if he's uncomfortable, & anything else that he/we can discover that helps. From this we progressed (now in the office waiting room) to chatting about how we're coping with his occasional foul language. I explained to Brendan that the original charting, with stickers for each day he doesn't swear, didn't work very well, perhaps because the incentives weren't very tempting. However, docking his allowance was really not working & causing a lot of conflict at home... By this time we'd made it into Dr. M's office proper, still chatting along. I should mention here that during all of our discussion Brendan was engaged, bright, attentive, funny. He seemed to really enjoy the process of figuring things out together. When we got into the office he began by engaging in some of his usual behaviours in there: checking out if there were any new toys, tossing a soft ball around, & generally bouncing around. I recapped some of our conversation so that Dr. M was up to speed & he was very interested & excited about the conversation. Brendan stayed with us during the recap, mentally at least, as he physically roamed the room, which was fairly unusual. What he generally does is engage in some sort of activity of his own while listening to us while I bring Dr. M up to date on life, usually without commenting. This time, Brendan commented regularly on what we were saying & was definitely part of the conversation. He ended-up pulling 2 chairs together to make a "sofa" & laying down, giggling, while he chatted with us. Dr. M liked the directions we were going in with re-thinking the charting & helped us to figure out how to handle the swearing chart, too. We decided to re-instate the positive charting with a more tempting reward, & also create a "swear zone" at home where it was ok for him to let loose... This came out of Charlie's & my perception that it was un realistic to expect him to never swear, & that it was more respectful & constructive to help him learn appropriate behaviour around swearing. Brendan declared the bathroom to be his "swear zone" (Dr. M agreed that this was an appropriate place for "potty mouth" :). Next we recapped the events of a couple of weeks ago, when Brendan had gotten stuck in his anger & played with matches. It was good to revisit this after some time had passed & feelings (for both of us) had receded. Brendan told Dr. M about the consequences for his actions, & this led us into talking about how successfully Brendan had dealt wih his feelings about going back to school last Sunday evening, & had repeatedly avoided meltdown. Dr. M asked him how it had felt to know he was going back to school after the break, & how he'd managed to keep it together in the face of those feelings. Brendan talked about feeling pressure, like he had to burst, & that he'd avoided actually bursting by talking to himself. They also talked about how story-telling can help Brendan to imagine different ways of responding to different situations, which led to our chatting about Brendan finally getting Dragon (voice-recognition software) at home & his struggles to get it trained properly. Brendan suggested to me that we work some more on the story we'd written for Dad's birthday, but I balked when it became obvious that he wanted to type it for him (!). I told him how long it takes me to make my blog entries (due to poor typing skills) & how envious I am of his having Dragon, & I promised to sit with him, help him with ideas, keep him from throwing the laptop at the wall when he gets frustrated :) as long as he would Dragon it instead of me typing. This seemed acceptable to Brendan :) (It's also led to Charlie looking into whether or not we can have more than one person at a time trained on the software, since it would be amazing if I could learn to use it too!)

Finally, I left Brendan & Dr. M to their usual time together (after asking the doctor if he'd felt as though he'd been doing family therapy instead of individual... grin). He gave me the latest issue of the Tourettes Society of America newsletter to read while I was waiting- it was excellent & made me realise that, not only did we need to join to get our own newsletter (did it yesterday), but also that the autism community doesn't have anything even approaching this level of support & information. It made me sad, because the reason for this is that the autism community is so bloody divided that there's no way we can get a focused, positive message out into the community. Arrgh!! What really put me over the edge with envy (of the Tourettes community) & disgust (for the loudest media voices in the autism world) was an article about challenging the popular stereotypes of Tourettes in our culture. This is a group that takes out full-page ads in newspapers & magazines in response to specific media instances where someone has publicly made fun of Tourettes. They have a series of tv ads by comedian Richard Lewis coming out with the tag line "Tourettes- it's not funny". Compare this to the constant slander of autistic people in the media as diseased, poisoned train wrecks, mostly by so-called autism advocates! It makes my stomach turn. (Also makes me keep blogging as loudly as I can!)

Brendan came bouncing out of his appointment in very good spirits. Dr. M was amazed & delighted by their meeting. He told me that he hadn't seen Brendan so engaged & vibrant since before the onset of the OCD. The take-home message was "whatever you're doing, keep doing it!" :) On the way home I reminded Brendan that I'd promised to start a blog for his stories, as soon as he'd gotten going with the Dragon. He'd forgotten, & got very excited about the possibilities. He told me that he wanted to write about autism, too, & I said that there are a lot of parents & kids out there who would be delighted to read what he has to say about it. Stay tuned... :)

Intention doesn't always make things go more smoothly... Brendan is 11 & has limited patience with frustration, so even though he tackled his Monday evening homework (on Dragon, with dad sitting with him) with a good will, he did end up wanting to throw things by the time they were finished. I keep thinking we need to lower his expectations somewhat & then do lots of short sessions, or something... The good news, parlayed to my by "conference call" (speakerphone in Cherie's office) on Tuesday morning by Brendan & Cherie (his consultant teacher) was that she has convinced our school district to intall Dragon on the new computer in her office for Brendan to use at school. Whee!! What seemed to finally convince the assisitive tech guy was that Brendan's using it at home & has started doing homework on it, after a 1 1/2 year hiatus in homework... I am so pleased that this is working out so well. And Brendan certainly will get more opportunities to use it, so he'll become more fluent, faster... Charlie & I were talking about this last night & he was pleased too, not just for Brendan, but that potentially this resource will be available for more kids at school who need it. Once again Brendan's opening doors for other kids, too. :)

One of the practical results of re-thinking how we're giving Brendan feedback about his behaviours has been realising that this requires more communication with Brendan about his behaviours. This may seem rather "duh!", but in practise, how often do parents talk about the standards they are applying to measure their kids' behaviours with their kids? Aren't these kids supposed to just "get" it? You know... over time, if you're consistent &, perhaps, unrelenting, they learn by repetition... right? Maybe this is the most important part of the recent re-thinking. Brendan is 11 now- rote learning just isn't fast or efficient enough. He's old enough to be part of the process, &, really, isn't that the best way for him to learn to self-regulate, by helping to decide what needs work & what's just fine, behaviour-wise? This morning, when thinking about whether or not Brendan had earned his number & sticker (for swearing) yesterday, I realised that I didn't have enough information to decide. So I asked him for feedback at breakfast time, then quizzed Charlie when he came home from work, briefly, to get Brendan for school. Brendan told me that he hadn't made it to the bathroom yesterday for a swearing bout over his homework (it was math, rather than something Dragon-able, & he was having trouble explaing to Charlie exactly what he was supposed to do), so I thanked him for his honesty. :) I asked Charlie how Brendan had resolved the conflict over homework & he said that they'd come to a satisfactory resolution, so Brendan did get his number, although sticker was forfeit. Brendan was rather surprised that he'd earned his number, so he learned something about what we consider acceptable behaviour. I really like this communal way of deciding the number issue, & I think it's giving Brendan much better feedback than just earning a lego or dvd after earning 11 numbers...

This morning, while perusing my usual blogs, I found this post by MOM-NOS, which was incredibly relevant to some of Brendan's & my recent conversations. It's about Teddy's Turn, a slide show of a boy just Brendan's age with Aspergers who was denied the right to speak to his class about his autism. It made me so glad that we live where we live & Brendan goes to a school where they have no idiotic prejudices about my kid or any of the other kids with IEP's. Give it a look, & meanwhile, I'll kepp working on my kid & his literary aspirations... :)

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Monday, April 16, 2007

Deconstructing expectations...

Spring break is over & Brendan's back to school today. We are in the midst of the promised snowstorm, so the drive to school was particularly unpleasant (it's hard enough to get back into the routine, but then to have the traffic & road conditions yucchy & unpredictable was no fun...). Brendan was mad at the weather, I suspect because he'd been trying to concentrate on the school activities that he enjoys & the snow didn't bode well for going outside today. :( He did hold himself together really well though, in the face of the end of vacation. He told me this morning that school itself isn't so bad, it's just all the tic triggers that make it horrible sometimes. I agreed wholeheartedly, & it made me realise how (mostly) tic-free our week at home had been. This is, of course, very much thought about & planned- the tic-free atmosphere was not an accident. It's not restful or vacation for anyone if one of us is uncomfortable, & we've evolved a way of being that minimises tics. In a way, one of the roles of school for Brendan is (somewhat) controlled exposure to tic triggers. He's not going to learn to deal with the OCD if it isn't challenged... & by contrast, home has become as much of a haven as we can make it. It's not perfect... he had a cow yesterday morning when he saw the cover of a catalogue (the King Arthur Flour catalogue, of all things...) which featured 2 summer-dressed women at a wedding shower. He was upset that they "hardly had any clothes on"- meaning that they were wearing spaghetti-strap & tank tops/dresses. We tried to tell him that they were dressed quite normally for summer, but he wasn't buying it. I realised that he was probably comparing their attire to what he sees me wear & so I told him that I dress differently than most women in the summer, that I'm the "weird" one in this situation, not them. Sigh. I was not about to explain to him that I don't wear skimpy clothing for 2 main reasons: I'm not comfortable revealing my upper arms & legs because I don't think they're attractive & feel embarassed, &, intertwined with these feelings, are feelings about my body that are left over from my incest recovery work. I find it very emotionally painful to wear clothing that uncovers too much of my body, so I've adopted a summer "look" that includes long skirts & elbow-length sleeves... Brendan wasn't buying the whole idea that my way of dressing is the outlier, either, & I suspect that another element was his preadolescent new awareness of the differences between men & women. In either case, we solved the whole thing by turning the catalogue cover-down & talking about the yummy dessert depicted on the back. Any port in a storm. :)

That conversation with Brendan was one of a series of experiences recently that have led me to think intensely about how he & I interact, what expectations I have for him, & why I have them. In so many ways Brendan & I have an empathy that allows for fluent communication. As I learn about autism, I'm coming more & more to realise that this empathy comes from our similarities. I am sure that I'm on the spectrum, too, but before I had Brendan I didn't recognise my spectrum qualities for what they are. I am becoming aware that some of my concerns about him, such as the tone of voice issue I spoke of in my previous entry, come from my own personal experiences & worries. As he's gotten older, I notice more & more bumpy, uncomfortable moments between us, though. I know it's to be expected- his psychologist has been reminding us lately that the job of adolescence is for him to separate himself from us & become an individual. I'm left wondering how to keep the communication lines open through this time. With Brendan, good communication is essential. He needs more help from us than most kids his age, so how do we provide adequate support & still allow him to be/become a capable, independant person?

Yesterday at church I had an experience that made me think very hard about my behavioural expectaions for myself & how they affect my expectations for Brendan. I was in a small group of people chatting when someone whom I had never really spoken to before, but knew by face & name joined the group... or, at least, I thought I knew who they were. There was something different about how they looked that put me, mentally, off balance for a bit. For a while, I wasn't really sure I was talking to who I thought I was (talking to). It was really disorienting, & luckily I was with a group & could just back off & listen to the others converse. After a little while I realised that this person was who I'd thought they were & things fell back into place. I was left feeling slightly unsettled for quite a While, though. I think it was partly because I realised that this happens with some frequency, & also because my only strategy for coping was to act "as if" I knew them... It made me think about how often Brendan will ask someone he's already met right to their face, who they are, & because he's a kid & most folks in our lives know he's autistic, they smile & reintroduce themselves. I think I rather envy him.

I told Charlie about this experience last night, after Brendan had gone to bed. I asked him what had been different about this person that made me not recognise them (he said it was probably something to do with their hair). The morning's experience came back to me when we chatted about friends we'd seen earlier in the day, & how he'd noticed that they'd put on some weight over the winter, & I realised that I hadn't noticed that about them until they themselves had mentioned it, & then their changed appearance just kind of blossomed into my mind. After Charlie went to bed I got to thinking about how I've learned to socialise in such a way that, despite my spectrum qualities, I'm considered to be a socially successful person. By that I mean that I have a reputation for being good at leading groups of people, for helping groups of people successfully problem-solve, for choosing to be in the middle of things, rather than hanging out on the fringes. I like to interact with groups of people & put myself into situation where I have to interact... That isn't to say that I don't have some significant issues with social anxiety. I do not like new groups, meeting new people, going to new places. I am most confortable in my niches- church & school- & do not function well outside of them. So I guess I'm contextually successful. How did I learn what I have learned, about reading body language, making eye-contact, knowing the appropriate sounds to make? How have I learned to "pass"?

The answer is, survival, or perhaps more accurately, Survival. My father was mentally ill (bipolar) & sexually abused me starting at an early age. I learned to read his body language, to anticipate his moods practically by esp, because it was a matter of survival. Hyper-vigilance was a way of life & has carried-over into adulthood. Before Brendan was born & I worked in a laboratory my desk faced a wall, but I knew who was entering my lab without turning around because I knew what everyone's footsteps sounded like. My hyper-sensitivity to Charlie's &, particularly, Brendan's moods has been a very helpful thing. It can make our family life run much more smoothly. The thing is, I can't help but wonder if I'm not, deep down, expecting Brendan to become as adept at this very difficult set of skills just because I found it a matter of survival to be so. This idea has really pulled me up short, so to speak.

In an early post I talk a bit about my Survivor recovery & how it has helped Charlie & I to cope with raising a child with autism. Although I was "officially" done with recovery when Brendan was born, I realised very early on that raising a child was bringing up a lot of un-dealt-with issues for my, concerning my own early childhood. I found a new therapist when Brendan was still quite young & still see her every 2 weeks, to fine-tune myself so that I'm better able to cope with what life throws at me. Even though I've been at this parenthood thing for just over 11 years, I still can't get over how intertwined my own childhood experiences are with my present parenting. I realise that I have high behavioural expecations- I don't tolerate disrespectful behaviour at all- partly because that's what allowed me to survive childhood, & parly because I think it's good form to be respectful. I really don't like it when Brendan responds in a snarly or surly manner to us (can you see why I'm worried about getting through his adolescence intact?). I pass my high expectations on to Brendan by commenting, probably far too often, on his behaviours, which he interprets as incompetence on his part. Add to this mix my own feelings/perspctives/strategies for dealing with autism spectrum issues & things get even more confusing. I want him to function well socially, I want him to not only decode what's going on with others but to respond appropriately. I want other people to respond positively to him, to like him. I'm beginning to understand that my expectations for Brendan are "tainted" by my experiences of abuse & my own difficulties with socialisation. One of the things I've felt good about in raising a child of my own is that he doesn't have to experience the abusive childhood that I did... And although I'm not worried abaout becoming abusive in the way my father was, I'm coming to understand that I have to back off in my expectations for him if I'm going to maintain a positive relationship with him. I need to figure out how much of my expectations are "my stuff". I need to trust that he will learn what he needs without having to become hypervigilant, like me.

The good part of this whole situation is that Charlie is, & has always been, our ever-present middle-ground reference point. Charlie has learned to live positively with spectrumy, hypervigilant me, & has a very functional, loving relationship to us, his wife & child. One thing I realised in my ruminations yesterday is that Charlie has been giving me a lot of positive feedback lately about specific interactions between me & Brendan. He's been subtly sending me good messages about the times he thinks I've done well helping Brendan cope with life. This is a strategy we've consciously adopted for use with Brendan- tell him what's good at least as often (more, if possible) as we criticise- & it's very successful because not only does Brendan get info about how he's been successful, but it puts a positive spin on life. When I realised that Charlie's been doing this for me it made me very grateful (kind of teary, actually). It affirms me as a capable human being & parent. It helps me to understand that, if I can successfully separate Brendan from me in my head & heart, then I can still be a loving mom, have a close relationship with him, & still allow him to find his own ways to succeed in life.

I'm making a mental list of these things, of course, so that I can work on them with my own therapist, & also get suggestions from Brendan's psychologist when Charlie & I visit him next. All of these thoughts & issues have made me realise that things are always beginning, in relationships, in life. No matter how long I'm a mother I will still always be beginning some aspect or another of my relationship with my kid. It never ends.

Brendan did a stellar job of transitioning himself back to school after the break, all things considered. He reached melting-point a couple times last evening, then chose to do something that distracted him or discharged the feelings in other ways (watch a movie, play a game). Observing & appreciating his efforts really reinforces for me how capable he is becoming. Reminds me that I really don't need to worry so much about him.

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Saturday, April 14, 2007

Moments of clarity...

It's Saturday of Spring Break week &, by Brendan's reckoning, one more day left until he's back to school. (Brendan never counts the present day into his reckoning, which is usually very handy, because on Thursday morning he feels there's only one more school day left to the week- I'm not going to quibble with this one!) Charlie's off work today, although he went in early for a couple of hours as usual to do paperwork, & after breakfast he took Brendan to the science museum for the morning. We tend to avoid kid-magnets like the science museum or toy museum during break weeks, since noise & confusion are not comfortable for Brendan, but I believe the logic this morning was that everyone would have maxxed-out over the week, leaving Saturday morning less crowded. :)

This has been a much-needed rest week for me, after the past 2 weekends of events (Brendan's birthday & Easter). I've managed to sleep-in a couple of mornings, with Brendan happily watching movies (everything from the Marx Brothers to Harry Potter) until I'm up for breakfast. I feel as though I'm at the bottom of one incline looking up at another, although this one is not sharply defined with the next project, task, or deadline ahead. It's fuzzier, which means there's the possibility of some wallowing uncertainty- what to do next? On Thursday afternoon Brendan visited a school friend for a couple of hours & I was quite disciplined about this precious gap of time. I planned 3 activities that I really wanted to do, all requiring my undivided atention- start a pair of lace socks from a new knitting book, find & draft the twill patterns for a new set of handwoven dish towels, &... I forget the 3rd thing. There was also the possibility of doing some sewing, but I decided that this was not the best use of free-brain-cell time, since the projects were already cut & ready to sew. Thanks to the planning, I actually did all 3 (I know I did the 3rd, too! -whatever it was), which means that I have been able to move on to the actual knitting of the socks (reading the pattern & planning the project takes much more brain-cell activity that the actual knitting), & that I can move on to the next phase of the weaving project when I next have a chunk of time & free brain cells.

I'm particularly pleased about working on the weaving. In the 3 years since Brendan developed OCD I haven't had much success with weaving & it intermittently makes me sad. Weaving takes a lot of thought. After Brendan started having serious difficulty with day-to-day functioning I found that the parts of my mind that used to effortlessly count threads were far too preoccupied to do so any more, adding a level of frustration to the weaving that I'd never had before. After wrestling with project after project, I finally realised that I needed to refocus, weaving-wise. I came to the conclusion that the loom wasn't going anywhere & that I can re-learn anything I lose, knowledge-wise, from disuse. So for the past couple of years I've been keeping my hand in by doing weaving projects with classes at school (on a small loom) & teaching Brendan to weave. We wove a blanket together last summer & it was not only fun & satisfying, but I learned that he's a wonderful help when it comes to warping (a sometimes difficult part of the process)- who'd have known? :)

It's only been over the past couple of months that I've been feeling like "really" weaving again, mostly inspired by a sudden surplus of handspun (by me) cotton threads. These threads had been a years-long project that was supposed to end-up as handwoven curtains for the dining-room. I'd been spinning thousands & thousands of yards of fine, organically grown cotton (in various natural colurs of brown, taupe, & green) by hand on a support spindle really enjoying the process... but the closer I got to my yardage goal, the more I realised that I didn't want to cover the dining room windows with curtains. I blogged the solution here, & ended-up with thousands of yards of destinationless handspun cotton in various colours... which made me think of dishtowels (what else?). And twill patterns that would show off the colours to nice advantage. And so I've found myself wanting to take the plunge again, into the possibly dangerous territory of 400+ thread projects, with their snarling & counting & other unknowns. But I keep thinking of how beautiful those patterns will look... So, here's one possible project for the incline ahead.

An on-going project that I seem to tackle far too often, with varying results these days, was also a big part of our break week. Depending on who's observing or experiencing it, it could be known as "Mom & Brendan butting heads again" although it's meant to be "Making Brendan aware of social nuances". It can begin when we're having a conversation &, out of nowhere, Brendan's tone of voice becomes belligerent for no apparent reason. Other times it's the result of Brendan experiencing frustration & getting stuck in being mad & rejecting all attempts to coach him through it. What I'm observing (& Charlie, too) is that Brendan is not aware of the messages his tone of voice can send & is not always choosing appropriately to the situation. He's a great mimic & picks up tones & sounds & loves to experiment. He's also starting to run an "attitude", which has sensitised me to the whole thing, since I get tired of being "barked" at. I am worried that Brendan will unknowingly use inappropriate ways of speaking to others, or not have enough info to choose wisely. I don't want him to get in trouble & not know why. I know that part of the issue is adolescence, Brendan's particular variety of it, & it's here to stay for a while, so I've been thinking a lot about how I'm part of the "solution" & how I'm part of the "problem". I'm part of the problem when I try to bring "teaching moments" into situations when he's upset already- this just escalates things. Sigh. I'm trying to learn to shut up at these times. Other times, when the voice thing seems truly random, I think I have a chance of getting the message across, & we had one fo these moments yesterday morning.

Brendan was making what he calls a "cappucino" for breakfast, which is microwave-heated lactaid with Ghirardelli mocha in it. He's learned how to do the steps, how long to nuke the milk (so it doesn't form a "skin" which he detests), how many spoons of mocha, but he's still working on the details, like how full the mug should be... (He was furious the one time that he got a "skin" on top even though he'd 'waved it at the scientifically-arrived-at number of seconds, but then we discovered that he'd only filled the mug half-way...) Yesterday, when he took the mug out of the microwave it sploshed all over, starting a chain-reaction in my son. I was mildly problem-solving with him, & he'd started calming down, but his responses were inordinately surly, so I pointed out the incongruity. He responded that "all I ever do is wrong" & I decided to tackle it right there.
"Yeah, it sure seems that way sometimes, doesn't it? I'm sorry- I don't want you to feel that way, but sometimes I really want to give you feedback on how you sound when you say things. Sometimes your voice over-reacts & I want to be sure you know it. I'm afraid that you'll do this with someone else & they'll misunderstand, & then they won't like how you spoke to them, & you won't understand why."
Brendan sipped his cappuchino... & then he sat down on the floor next to me & started chatting away about the food chain & friends & how to know who's really your friend. I was really surprised. Not only did he not escalate things, but he really wanted to talk about this stuff. He told me that there's a big barrier between the boys & girls at school & that he doesn't like feeling like he has to choose. I explained that this is partly developmental, that the boys do stuff at this age that the girls think is stupid, so they keep to themselves more, but that it changes, too, as the girls start noticing how cute some of the boys are. He reminisced about kindergarten & how hard it was to make friends with the other boys (I affirmed his perception- that was one of the unpleasantest groups of boys I'd ever met, & it always made me sad that so many families seemed to be "ruining" perfectly good kids...) & how he'd really just wanted to play with the girls because they were nicer. It seems that things are playing-out similarly right now, although the girls have a "food chain" of their own. We discussed how it was just fine if he preferred to eat lunch at the "girls' table" & avoid the hijinks perpetrated by some of the boys. He does have friends among the boys, too, but doesn't always like how they act in the presence of some of the ringleaders... Then the talk turned to how adolescence makes kids do weird, unpredictable things. That it's hard to depend on friends during this time, since everyone is at the mercy of their changing bodies. I mentioned that this is a time when being autistic is not a helpful thing, since he's not as quick on the uptake when it comes to social cues. I suggested he might want to talk to his (college-age) friend Ck about this when he sees him again, since he's been through it (& is also autistic). I also mentioned that he might want to think of his social interactions as play-acting, to observe them from that perspective, & even pre-programme some responses so that he isn't caught off-guard. He has the advantage of having role-played social interactions quite a bit, so this may help him get through. Brendan took a lot of this in very thoughtfully. I told him that the good thing is that there are a lot of people around who have gotten through this phase of life just fine, & that I know he will too :)

It was a pretty amazing/fun/affirming conversation. For a little while we were just people, sharing experiences & perspectives. I never cease to be amazed by my kid, his perceptions, his wit, his caring for others. It made for a very mellow day for us, too. We went to visit Grammie (& her cats) at her new apartment & even found a new japanese restaurant right near Grammie's to try out. Brendan also tried out Marx Brothers routines on us (scary, how well he nails each one...) to rave reviews. I may be worried about his mastery & use of vocal tones, but I have a feeling that his ability to (appropriately) match Grouch quips to specific situation more than compensates... heaven help us all!

Tuesday, April 10, 2007

We're still here...

We're kind of bleary-eyed, but definitely still here :) Brendan was off school last Friday, of course, & Easter weekend was a flurry of getting ready for church on Sunday & then Easter dinner for 9 family & friends. It also included flurries of snow & Charlie was rather disbelieving as he shoveled snow Easter morning so that we could get everything into the car that was needed for church... (most of the "everything" was 108 seedlings in colourful plastic cups that the Sunday School classes had planted a few weeks ago, & I had nurtured ever since at home, to be handed out to the congregation on Easter as a welcoming of Spring :).

The main plan on Friday was to generate the thank-you notes for Brendan's birthday presents & then on Saturday we'd start writing them. We decided together to make note cards out of a photo (the usual thing). The photo above is what we came up with, because the pokemon plushies & japanese were featured in one of the party games. I asked Brendan if he wanted to generate individual cards with the message for each one typed out, or if he wanted a short typed message in each with a handwritten (by him) mention of the gift & signature. He opted to the latter, so we formatted it all & printed it out. All went well until Saturday morning when we got to generating the notes. We did 4 of them, interspersed with playing Dragon Fable, which is pretty much all he did that morning, play DF & get 4 cards done. I wanted to do 2 more in the afternoon, after japanese lesson, but Brendan balked. We clearly had differing expectations as to how quickly this was going to be done. I explained that I hadn't asked him to work on them during the school week because I knew school took a lot of energy, & that's why I wanted to get them done over the weekend & early part of break week. He was having second thoughts about all the writing, as it turns out, but didn't know how to tell me or figure out how to re-negotiate things. Instead, he blew his top & stormed upstairs (this was later in the afternoon). Charlie & I let him be for a while, even though we could hear the crashing of legos in his room, but eventually Charlie went up (since Brendan was mad at me, I thought it too inflammatory to try to deal with him right then). Charlie talked to him, but Brendan was stuck- something that is pretty common for him- & couldn't get beyond his anger. I went up next, & discovered that he'd scotch-taped his door shut, although he finally let me in. I tried to get him to talk about how he was feeling & how things could have been different (how we might have re-negotiated things, rather than his getting mad & stalking off), but he was really stuck in the anger & kept telling me that emotions were useless so why talk about them, that he was an a**hole & didn't deserve to live, & the like. It's always scary when he talks about not wanting to exist, since he's tried to hurt himself before when he's felt this way. I was also concerned because Grammie was coming over to dinner & then to stay with him while Charlie & I went to the choir rehearsal for the Easter Sunday service, & I didn't want to leave him like this, nor did I want to leave my mom with him in this state. When Grammie came he did come downstairs & was quietly civil to her, but it was obvious that he was still really upset & he didn't want to eat dinner. It was although he'd shut himself away, that the emotions were too intense for him. Finally, Charlie went to rehearsal without me (he's the only regular member of the bass section & was really needed to sing) & I thanked Grammie for coming over & told her I'd manage with Brendan. She was worried, but left us to sort things out. And we did, eventually... I told him that shutting himself away wasn't getting him past his feelings & toward working on a solution. I explained that when people are in a family, they work together on things because they love each other & have a responsibility to each other. He just kept saying that he was too awful to exist, so finally I grabbed a bunch of the pokemon guys, & the Rufuses, & told him that he wasn't too awful for us & that we were depending on him, that we loved him. We both broke down into tears & ended-up in a hug pile of us & pokemon & mole rats. It was very intense, but we got through.

Charlie was gone for only about an hour & a half, & he found us watching "Happy Feet", which Grammie had brought over to watch with Brendan & kindly left for us. It was fun to finally see it, & a nice way to relax after all the tenseness. After the movie, though, Charlie brought in a partly-melted candle that usually sits on his dresser & asked Brendan how it got that way... Brendan looked crestfallen, & it turns out that it wasn't just legos that were shredded while he was angry. He'd gone into our room & destroyed some things, too- he found matches (pretty well hidden) & melted the candle, crushed some popsicle-stick creations he'd made when he was little that had been sitting on both our dressers, & (I discovered later) shredded one of the HP legos that had found sanctuary on my dresser. I was horrified that he'd been lighting matches while angry &, although I didn't get angry or yell, I made sure he understood that he had broken trust with us & would have to make reparations. He started to get defensive again, but when we saw it start we distracted him, explaining firmly that this is a learning time, & that it's important that he learn what to do when he's angry so that irreparable things won't happen in the future. We were able to bring him back before his emotions got too intense again. I was absolutely exhausted by the afternoon & evening, so Charlie read to him before bed while I zoned-out for a bit. Brendan agreed to take a melatonin before bed & it really helped him- the night before he'd been so antsy while I read to him that it took a full hour of reading for him to relax enough to fall asleep. Afterward, Charlie & I talked about what we wanted Brendan to learn from all of this, & later Charlie typed it all up on the computer so we'd have something Brendan could refer to. The first thing was to work with Brendan to see what he thought needed to be done & incorporate them into the list as well. Our main points were: that Brendan learn to find healthy outlets for his anger so that he didn't destroy things inappropriately (a list of things to be determined by us all together), that Brendan would have to repair the things he'd broken (with our help, if needed), that he cannot light matches for 6 months, that he may not go into our room when one of us isn't in there, even for a lego (some of them are stored in Charlie's office, off our bedroom), that Brendan would go shopping with dad & buy him another candle with his own money, that he would look up & type/dragon the definition of vandalism for future reference. Since the next day was Easter, we put off discussing these ideas until last evening at dinner (we were going to do it after but Brendan was getting really anxious about it, & it wasn't going to help him to be really upset going into the discussion, so we just did it). Brendan agreed to it all- he had already decided that he should fix the things he broke & that he'd swear-off matches for a long time. We talked about how we needed to be able to trust each-other, & Brendan has a strong streak of fairness in him, which helped him to understand why he needed to stay out of our room & make reparations, too. Charlie told him that they'd work on the list of things to do when he's angry, & suggested that they go to garage sales to find old pottery for Brendan to smash when he was really upset (we have a friend who swears by this...). It's a work in progress, for sure. but the peace has been restored to our house.

Easter was a mix of work & fun- getting the seedlings to church, sorting out how the kids would distribute them, figuring out where Brendan would be while we were singing in the choir loft, & then actually doing it all... everything fell into place. Then home, eating lunch & pacing ourselves throughout the afternoon to make Easter dinner. Brendan never actually joined us at the table for dinner, but the new laptop is on my desk in the dining room, so he was with us even when quietly playing DF, & very mellow & personable through it all, so we felt that he had a good time, too. He kind of munched on things throughout the day & we decided that every day does not have to be superior nutrition day... what was important was his comfort level with all the people visiting, which went fine.

Yesterday Brendan's best buddy spent most of the day with us, which was a lot of fun, then we watched the latest episode of "Kamen Rider Den-O" online before dad came home from work. Today I slept-in while Brendan watched another of the Marx Brothers movies he got for his birthday. This morning we finished the thank-you notes, after re-negotiating that I would scribe the message & he would sign them. He did some Dragon Fable & then worked on rebuilding the lego on my dresser that he'd broken. Brendan seems to feel much better to be actively doing something to repay us for his actions. Charlie & I feel that it's better to be dealing with these sorts of things while Brendan's younger, rather than when he's in full-teen mode. We've talked about the reparations as creating memories for him to fall back on when he has impulses to damage things in the future. And finding things that help him to direct & get beyond his anger are important life-lessons. In the late morning walked to our neighbourhood japanese restaurant (the weather is finally warming up again!) with our friend Kelly for lunch. While there we discovered that our waitress is a friend of our japanese teacher's :) She was impressed by our japanese (I think, in particular, Brendan's). After we got home Brendan got back to working on a new story (about a "multiverse" that he's illustrated using the go board & stones) & returned to madly building legos to represent the characters & vehicles from the story. I've suggested that he start documenting the story using the his new dragon software, then we can take a photo of the legos & go board to illustrate it. He's intrigued by this idea... Stay tuned!

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Thursday, April 05, 2007

Food chain...

Thank-you, Kim Possible. Not only have you given us Rufus, but you have given us a ready-made common vocabulary for Brendan to talk about one of life's most difficult stages- adolescence. Specifically, the way adolescents (or pre-) sort themselves into seemingly arbitrary hierarchies, which is what KP refers to as "the food chain". :)

Yesterday morning at breakfast, in a discussion aimed at getting at the root of Brendan's complete inability to remember to brush his newly-braced teeth after lunch at school (in spite of notes in his locker, lunchbox, & the re-location of toothbrush to his lunchbox), we came to the conclusion that part of the problem was that he & one particular friend begin playing their very imaginative free-time game (usually known as "The Pokemon Game) during lunch. It then spills over into outside time after lunch, & involves imagining themselves as various super-heroish characters & then acting out the drama on the playground. I'd gotten the clue about this being the "ish" (as KP would say) when I delivered Brendan's birthday meeting treat to school on Tuesday & was there for part of lunch time. Brendan & buddy were so immersed in the game that Brendan never noticed that I'd kissed him on the cheek & said goodbye... It's no wonder he sometimes comes home with part of his lunch uneaten. (I also have to wonder if getting completely immersed is the only way Brendan can participate in this game, since the friend he plays it with is also one of his major tic-triggers. Perhaps the intense focus allows Brendan to play the game & not get triggered...) In any case, I suggested that maybe he just explain to his friend that, until he's in the habit of brushing after he eats, they refrain from playing during lunch & wait until outside time. Brendan agreed, & we both realised that it meant Brendan sitting with other kids, since this friend is a juggernaut when it comes to this game & would probably have trouble switching gears if he was near Brendan. I told Brendan that I didn't want him eating by himself, either (lunch time is prime socialisation time, & socialisation is one of the reasons he's not being home-schooled). So, we talked about who else he could sit with... Now, I had noticed on Tuesday that Brendan & friend were the only 2 boys at the table during that lunch time- the 2 5th-6th grade classes had divided themselves up into a table of girls (+2 boys) & a table of boys, which was fine by me since I had some nice conversation with the girls as my kid utterly ignored me. When we got to imagining who else Brendan could sit by, he blurted out, "But mom, most of the other guys don't talk to me during lunch because of the food chain!" Thanks to KP, I knew immediately what he was talking about. Sigh. He then listed the hierarchical order that the boys had arranged themselves into, who kind of "floated" in status, & who had no status at all (he, his buddy, & one other kid who seems to kind of float through life anyway). He then did a comparative analysis of the girls' food chain as well. Not bad for an autistic kid, huh?

We then talked about how this all affects him. Brendan sees himself as a sort of free agent, not part of the hierarchy, but not really bothered by it either, except that it's inconvenient. He said that all of the kids in the hierarchy do talk to him at other times & he's played with them on the playground at times, too, & never felt picked-on. He's noticed that the kids who are trying to move into the food chain (but are not seen as "cool") get picked on, so he's decided to steer clear of this, although he's been known get involved to defend or comfort a friend who has been picked-on. His Pokemon game buddy exists on the outside of it all because he doesn't seem to notice that it exists, & we decided that that's why the higher-ups don't give him a hard time, either. It was comforting to know that Brendan has the savvy to see what's going on & decide just how much he wants to be involved in it, & that so far he's not being drawn-in hypnotically by the "cool' factor. I feel sad that the whole thing exists at all & remember acutely how much it all hurt when I was an adolescent.

Fortunately, Brendan's school is doing a great job of recognising the fall-out from food chain-related conflicts & is getting families involved, & has starting a series of socialisation workshops to teach the whole group some healthier ways of interacting. The consensus of his teachers is that the early intervention Brendan received for socialisation has really put him ahead of the game in this area- ironic, no?

At the end of our conversation, we decided that he might try sitting with the girls- there are 2 girls who also have braces & the 3 of them have been trying to remember to remind each other to brush teeth after lunch since Brendan got his. He's been with them since first grade, too, so they treat him pretty kindly. We shall see how this all plays out... "Will he remember to clean his teeth?" has receded on my list of concerns, though, after the food-chain conversation. Adolescence is here, whether we like it or not!

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Tuesday, April 03, 2007

A happy birthday... :)

Thanks for the kind birthday wishes from commenters on my last post! Brendan had what seemed to me to be a magical day on his birthday. Magical because, in spite of pre-birthday jitters, he was less ticcy, less OCD-driven, less inflexible than usual, & so he really enjoyed the day & so did we! :)

I had been very concerned that we wouldn't get him to church after opening birthday presents (including a desperately-desired lego), but he was very mellow & only asked to bring his new Kirara (demon cat from InuYasha) plushie with him- no prob! He had a great time on the church computer while Charlie & I were in choir rehearsal, & even came up front with his Sunday School class during the service for a presentation (something he really doesn't like to do). We zoomed home after church, bringing our 17-year-old goddaughter with us, for a quick lunch & then off to the clubhouse to finish setting up for the party.

The party went off smoothly & with no difficulties at all from the guys I was worried about. Hooray!! My faith in humanity (& in the inner sweetness of even the most troubled child) was restored, for sure. There were repeated comments from the kids on how fun the activities were, & no-one balked at being asked to dress-up. Some of the guys came up with elabourate back-stories for their costumed characters :) Our goddaughter made a great sphinx :) & she was amazed by how easily the kids got some of the hardest riddles. The guys who were "cursed" to become the dragon seemed to have a blast:

(that's Charlie in the backwards jexter hat & Brendan in his mage robes :)

...they sorted-out who would be in the front of the dragon pretty quickly & went about uncursing themselves with good humour (they had to get someone to offer the dragon a drink of water without speaking :) The rest of the kids thought it was hilarious. The rate at which they whipped through the fairly challenging games made me glad I'd made them pretty difficult (yet not so difficult that our guys with motor-planning issues- & there were at least 4 of them there- would have too much trouble). The big surprise was that they got hung-up when it came to putting together the puzzle to make the treasure map. Go fig... but there were lots of adults on hand eager to join in the fun, & there was ping pong & foosball upstairs to make the waiting easier.

They finally figured it out & found the treasure box in the sandy, cave-ish basement of the clubhouse (top photo is of the treasure-frenzy :). I was amazed by how popular the mardi gras beads were- the kids, boys & girls, went around festooned for the rest of the afternoon. It really was time for cake & ice cream after that, & afterward Charlie was amazed by how all of the kids gathered around to watch Brendan open his presents.

Recently Joel asked What do you love about your autie?. Although there are many things that I love about my son, a few sprang to mind as I watched him at his party... Brendan greeted everyone personally as they arrived, setting the tone by welcoming them to the "quest". He participated unselfconsciouslessly in the activities, pretty much forgetting that he was the "birthday boy" & encouraging his friends to have fun. When he opened his prezzies (aka "loot" :) he was equally excited about each one, saying something complimentary about every gift he got (he told me later that he remembered not to mention if he already had something he was given, because he didn't want anyone to feel bad :). When it was time for everyone to leave, he stopped what he was doing & said good-bye, in spite of being really tired & distracted by all of the excitement. He was wonderful. Charlie & I were so proud & more than a little relieved that he kept it together so well. In the comments for my last post club 166 mentioned that he hopes his son will get to the point where he makes friends. I can think back to years when I've hoped & wondered the same thing, & I think it was age & maturity that finally did it. Our guys on the spectrum have a longer curve for learning the social stuff, but Brendan has definitely gotten to a place where he knows who his friends are & has a good sense of who isn't, too. I wasn't ever sure it would happen, but it has. Whew!

When we got home from the festivities we just let him lego, offering him various foods to keep him nourished, & ate scrambled eggs ourselves, for dinner. His room looked like an explosion at the lego factory right before bed- mostly because he & dad had moved all of the projects started in the living room upstairs, so that at least one room was passable. As he got a last few pieces put in place before bed, I discovered that the new bionicle Bahrahki containers are this really cool translucent blue & have decided to try & make a lamp from one of them... stay tuned :)

Monday morning we had some extra time before leaving the house because he was due at the orthodontist for the rest of his braces at 9:00 am- more lego time! This appointment took longer, but they said it went very well, thanks to his co-operation. He was definitely much cooler about it all this time, not jumping up & down excited (no duh!) but not whiny or unhappy about it all either. He refused the offered tylenol on the way to school & seemed pretty comfortable, pain-wise, although the fixed bite-plate was making him lisp a lot & he wasn't very happy about it. He had a fine day at school & bounced out to the car when I came to get him. He said that the plate was starting to give him some pain & that he'd take me up on the tylenol offer when we got home. I told him that we needed to start his birthday meeting treat after snack time, & then he was free to do what he liked until dinner. He got a few dvds for his birthday & was excited by some new doings at Adventure Quest that a friend had told him about, so I knew he'd have sufficient distraction from his face if he needed it.

At Brendan's school they celebrate birthdays by having "birthday meetings". On the first 2 floors (pre-k through 4th grade) all of the kids & teachers sign one big card & then the birthday child's family makes a treat to share with, usually, 2 classes of kids- about 25 people at most. They sing happy birthday & then the birthday child can make up a math problem or just ask the rest of the kids to guess their age, then they have the snack. Parents are not only welcome, but pretty much expected to make an appearance if they can :) The first couple of years we were really good & brought fresh fruit trays for snack, & the fun for Brendan was dyeing the dipping-yoghurt different colours with food-colouring. The past couple of years we've gone a bit more decadent, making candy sushi from rice krispie treat rolled around twizzlers, wrapped in fruit roll-ups & sliced into little maki sushi's. Brendan & I have really enjoyed setting-up an assembly line to make these :) Mom does the sticky bits & Brendan unwraps things... With the braces, though, we needed a new idea. We got that idea from the jello that Brendan's been eating since his first round of braces- jello aquariums. We'd seen this on Zoom a few years ago- carve little fish from apple slices & suspend them in a clear cup of blue jello. It takes some time, since you have to do 2 pourings of jello to set the fish properly (& I still had some floaters), not to mention carving all those apple fish (52-ish of them). Brendan & I made the first batch of jello together, then I set him free while I poured it into 26 clear plastic cups & set them on cookie-sheets in the fridge. A bit before dinner I started carving fish, floating them in lemon-water to keep them from turning brown. After dinner Brendan & I situated the fish in the set jello & then we made another batch of jello to top it off. (We ended-up using 9 boxes of jello for 27 cups.) We ran into a hitch while situating the fish, when Brendan started freaking out about eating the cute little fish. Sigh. I made him one without & Charlie undertook to calm him down while I finished up. He was feeling better, though, today when I brought them in at 11:20 for the mature, 3rd-floor version of the birthday meeting (everyone sits down to lunch, sings happy bday, & then eats snack with lunch). He was very proud of the jello aquariums & his classmates were impressed that we'd made them.

All in all, an exhausting but exhilirating few days. Brendan has turned 11 in style & he doesn't see the orthodontist again (barring the unforeseen) for 6 weeks!

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