To fight, or not to fight...

Way back in early December Brendan's psychologist asked me to keep a "tic log", essentially a record of Brendan's anxiety moments. The purpose for this was data-collecting, to see if we could get a sense of the patterns of Brendan's OCD anxiety. I have been doing this faithfully, along with recording our responses to his anxiety on the odd chance that we learn anything from that, too, & getting Brendan's input on his time spent at school (everything has been done with his knowledge & co-operation, of course) ever since, filling 2 little hand-bound books with these observances... until just this past week. I'm not sure why I've stopped, but somehow it began to feel more & more like micro-managing, like looking at things too closely. So, without too much struggle (or guilt), I stopped. My researcher past tells me that we probably have plenty of data by now (3 months' worth) & my mom instinct tells me to follow my gut :) Brendan's psychologist is a wonderful, understanding person, so I know he'll understand, whatever the reason.

One of the good things about doing this sort of thing is that it's not hard to spot changes over time (since I'm writing everything down, I can't help but notice what phrases I write over & over again...). A few trends that have been pretty obvious are his anxiety before going to school (particularly Monday mornings) & also the extreme pain that the OCD anxiety has been causing him. One of the things that has changed noticeably in the past 3 months has been Brendan's ability to ask for help when faced with anxiety- he's gotten much more proactive about this & we are actively grateful, making sure that we give him feedback when he's done well with communicating. His school teachers have been noticing this, too. It is a wonderful, wonderful thing to see him starting to use the strategies he's been learning to cope with the anxiety. It's also wonderful to be able to give him the feedback that he is using the strategies. He's not always aware of what he does & one of the main things we've been trying to help him learn ever since the anxiety became a "big player" (almost exactly 4 years ago, just before his 8th birthday) is how to choose the most effective & positive ways to deal with it.

These days Brendan seems most vulnerable to the "fleas" (his word to describe/personify the OCD anxiety) on Monday mornings, & we have had some doozies the past couple of weeks... The first time Monday Morning-itis hit I was not prepared & it was a disaster. He was so immobilised by the "fleas" that he couldn't get dressed. I waffled between explaining that he would be going to school in his jammies if he couldn't get dressed, trying my best to enable the dressing somehow, and then trying my best to deal with the full-body tics that erupted whenever he tried to touch his clothes... There was something bad about the colour green that morning (related to something he'd seen on a show) & he couldn't even look at it. Although his clothes did not have green on them, he was surrounded by green things. Colour difficulties are a pretty common manifestation of the OCD anxiety, but they'd never been quite so intense. Finally, he was able to struggle into his boxers & pants on his own (his is nearly 12 & no way am I going to embarrass him & try to do the nether regions) & I dressed him the rest of the way. He was too upset to eat breakfast & sat in the kitchen & sobbed & hated the "fleas" & raged at the OCD & said he wished he'd never been born until it occurred to me to offer him a book, which distracted him enough to eat a banana & take his morning meds (bless you, Terry Pratchett!). By the time we got to school he was doing pretty well seemed not to have any more trouble than usual. I was a wreck for the rest of the day, though. I felt like a particular failure as a mother & it felt bad. Sigh. That wore off in time, though, & in talking to Charlie, he certainly was able to find bits where I hadn't totally blown it... I think the worst was feeling so helpless & ineffectual in the face of his pain.

Over the following week I thought about what had happened, mostly in the back of my mind as we did our daily thing. One of the things that has really been coming into focus over the past few months is Brendan's pain & resentment of the OCD. I've gone through a few revolutions of thinking since Brendan was diagnosed as being on the autism spectrum & one of the main ones has concerned whether or not to "fight" his conditions. I have written before about the use of "fighting words" when it concerns my kid or his differences, & my ultimate conclusion is that is does not add positively to the world when we fight it... but how could I talk about this with Brendan while still acknowledging his pain & his own feelings on the matter?

This week has provided a couple of occasions to work on this... :) This past Monday was definitely a continuation of the previous Monday, with the added excitement of Brendan still being "jet-lagged" from the time change. I was prepared, though, so I stuck with him verbally, from the other side of his bedroom door, as he got his pants on & then took over the rest of the dressing. Green was no longer an issue (the bigger the blow-up the shorter the duration of the "flea", I've discovered) but there is a particular shade of blue that causes problems... we got past that & he was crying on the way downstairs & plopped on the kitchen floor when we got there, so I just handed him his book & he requested an apple to eat & things were pretty ok. While I was eating my breakfast & he took a break from his book, I made an attempt to talk about the anxiety. I told Brendan that it seemed to me that his anxiety about going to school is actually pretty reasonable for a kid with Aspergers, with all of the social difficulties that go along with it. And it seemed to me that the OCD was taking reasonable anxieties & blowing them out of proportion, which is one reason it's so tough to deal with. We started calling OCD "anxiety on steroids" which made him kind of grin. It was a start...

This morning, even though he was off school for teacher conferences, I suspected that he might have some trouble getting dressed because we were due at school at 9:00 for his conference (yesterday he was off, but no conference). I was right- he dithered & "flea-ed" & then asked me to finish putting his shirt & socks on, which I did, & then observed that it was really helpful for him to ask for help. He went downstairs yelling & moaning, so we talked again about the "anxiety on steroids" & he said that he hated anxiety & started crying. So I told him that one thing I've observed is that he has a lot of trouble on schooldays, which did not mean that he doesn't like school or trying to get out of anything (this is a recurring argument- that he feels he's being accused of using the OCD to try to get out of things). I reminded him that this school anxiety is not unreasonable for him, but that the OCD ramps it to unbearable levels. Then I gently suggested that he wasn't alone in dealing with something painful like this, that there are other people around that I've known who were born with difficulties that sometimes cause them pain- like my friends from my wheelchair basketball days who were paralysed or had lost legs in war or accidents, & how they had to get used to being different & being perceived as being different, & used to getting around in a different way, which could be really difficult. I told him that I'd observed that those who found positive ways to look at their pain, who didn't fight it but accepted it as part of them, were happier people. We talked about people we've known who are refugees from war, & how anger & wanting revenge does not make someone peaceful. We even talked about the difference between being a "fighter" in the sense of learning to fence & how that's different from fighting something. Brendan reflected that fencing requires a lot of thought, but when he's angry & fighting the OCD, he's not really thinking, just reacting. Our discussion bounced around a bit, but as we talked Brendan became calmer, more peaceful himself. I mentioned all the ways that I've already seen him using good strategies to cope with the OCD, & how he's gotten so much better at dealing with some parts of it. That it's ok to be angry & sad about how hard it is to deal with life with OCD, but it's what he does with his anger & sadness that's important. He was perfectly calm & able to sit & eat (no book :) after that. We both felt calm & peaceful. We talked about it all again during his conference, as he reflected on how well he's managing the anxiety at school, pinpointed the difficult times of day & how he & his teachers could cope with them. It was all very positive & I felt such a glow of pride for my son.

Ultimately, I think what I really need is a big sign somewhere that says "the intense times are the times when we learn the most". It's so hard to cope with those intense times, when we're all falling apart & no-one knows what to do... but I look at what Brendan & I have learned from our frightful Mondays & I can feel (almost) grateful. We are turning our minds to every important considerations. How we think is how we live, & Brendan is growing into a very thoughtful person indeed... :)

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 ?

Full circle...

This past week can't have been just a week long... I feel as though time has stretched (sometimes agonisingly so), but then that's what happens when you have a kid in discomfort, I guess. Happily, we seem to have come back round to where we were & life is settling down to what passes for normalcy (for us). But what a ride we've had...

The first main consideration was the pain of these new braces & how to cope with it. We did the usual tylenol, round the clock, which helped, as did the hot-water-bottle teddy bear I'd bought years ago but had never used. Brendan'd lay on the foof chair (like a beanbag) & watch tv after school with the bear over his face & said it really helped. By Tuesday evening Brendan's face was really swollen & the initial all-over discomfort had settled into just the spots where the wires were poking his cheeks. Up to then he wasn't tolerating any wax in his mouth to cover the poky things, but by Wednesday morning he was ready to tolerate just about any secondary discomfort... Wednesday morning as I was trying to situate small lumps of soft wax on his upper back molars I realised that, in nearly 11 years of life, this was something I'd never done to/for my kid before. I've changed diapers, fed him, wiped & bathed him, placed thermometers where "the sun don't shine", but had never reached this far back into his mouth before. It was weird. He was so relieved when the wax was in place, you could see it on his face. After Charlie took him off to school, I called the orthodontist & got an appointment for that afternoon, to see what they might be able to do. Fortunately, they were able to re-situate the end of the wires so they didn't bother him & his face de-swelled by Thursday morning.

Eating has been a big challenge, too. He was really psyched by the prospect of going out for Japanese on Tuesday night, since dad had to work late, & we were pretty sure that his usual selections (rice, soup, edamame, ice cream) wouldn't cause trouble, but we weren't prepared for him to be so frustrated with the amount of time & effort it took just to eat. He nearly exploded a couple of times while we were at the restaurant, while not getting much food down (on top of it all), so I was not inclined to order dessert... but when he promised to keep it together while he waited for the tempura ice cream, I relented. Good thing- after eating the ice cream he was feeling much better & proceded to eat everything that had been giving him so much trouble pre-ice cream. When I went shopping Thursday morning I stocked-up on ice cream... He'd also decided that ice cubes made of fruit juice helped his mouth, so I got more juice, & decided to get him some jello (which he's never, ever liked) along with the requested apple sauce. He tried the jello for snack that day & loved it. :)

As for distraction- what we discovered was that tv worked best, with me reading out loud to him coming in second. Dragon Fable (his newer, better version of Adventure Quest) was not distracting enough, so he's spent remarkably little time on the computer this past week. Tv-wise, he asked me if we could try watching my old (from the early 90's) "The Adventures of Batman & Robin" animated series tapes again & I agreed. The first time we tried, maybe a year ago, he was too freaked out by the costumed criminals & decided himself that he should wait. I sat & watched with him, just to be sure he was doing ok. It's funny how you don't really notice certain things... while watching the shows this time around I was struck by the heavy undertones of mental illness (with the bad guys) & focus on their incarceration in a mental hospital (Arkham). The more we watched, the more Brendan asked me about how or why various baddies went crazy & I was getting more & more umcomfortable with exposing him to this. He was particularly taken by Two-Face's compulsion for flipping coins to make decisions, which, given Brendan's OCD, made me uneasy...

By Friday morning he was much more comfortable, physically, but I could tell that he was on edge in general, very likely due to the discomfort of learning to live with the braces. So much has changed- when & how often he brushes his teeth, a new fluoride regimen that has to be timed, what & how he can eat, when & if he can have a snack before bedtime... & just the constant feeling that he's got these things in his mouth. I went in on Friday afternoon for our usual japanese lesson to discover that Brendan had gotten in a bit of trouble during lunch/outside time & was waiting to have it all dealt with. His teachers were actually a somewhat pleased, since it seemed to them normal, kid-type trouble & it was good to see him doing developmentally appropriate things. I was cautiously ok with it all, but it never feels good to know your kid has given a teacher trouble (he misunderstood a direction that lunch had to be either entirely consumed or put away before he could go & play, & thinking that he had to eat it all, got angry & was caught chucking woodchips at the teacher, thinking she couldn't see him do it). He was pretty embarassed about doing it, being caught, & worried about the consequence. I had suggested to the teachers that the consequence be helping the teacher he'd given a hard time to with something at school & they thought that was a good idea, so I told him that much, to relieve his anxiety. But not much seemed to relieve his embarassment & discomfort. I managed to talk him back to a place where he could join his classmates for a workshop (japanese lesson got steamrollered by it all) & he hung in there for a bit, but then the tics got out of hand & he had to leave. I finally just took him home, but he was an emotional disaster by the time we got there.

One of the things that complicated it all was that he'd showed me something he'd made at school & it was weighing on my mind... he'd taken 2 playing-card jokers, taped them back to back, made a scratch on one side (to indicate the "bad" heads) & was flipping the whole thing like Two-Face flips his coin. I didn't react strongly when he showed it to me, but realised that I wasn't comfortable letting him see any more Batman... Of course, when we got home that's what he wanted to do, & when I explained that we were going to take a break he flipped. Sigh. He got so worked up, it was very much like the psychotic episodes he'd had when he was 8 & had just developed the OCD. He was "scared" to go in just about any room in the house, scared of his "bad" left hand & arm (a long-standing OCD issue), writhing on the floor & banging his head repeatedly. I wasn't really sure what to do- call Charlie? Call his psychologist? I didn't feel secure leaving him alone to do either. Finally I just shook him. I felt rotten about doing it & he got really angry, but he came back down to earth. He ran into his room & burrowed under the covers (which is something I'd suggested he do but he was too scared before...). I sat on the bed & held his hand through the covers, apologised for breaking trust with him, & explained that I'd been scared & didn't know what else to do- & cried with him. When he calmed down & we both were blowing our noses he told me I did the right thing. I'm not so sure... but it was over for the moment. We had a snack & I suggested that we watch some of a japanese programme I'd found on the internet (at veoh) called "Kamen Rider Den-O". It's in the Power Ranger/Super Sentai genre, but with a lot more plot (IMO), & although it's not subtitled, I've been able to glean alot from watching & researching the show on wikipedia. He was psyched to watch, so we did for about an hour & then he wanted to play Dragon Fable.

He was emotionally up & down for the rest of the evening & it was a great relief when Charlie came home from work & could spell me. Grammie was due to come to dinner, but called during the afternoon (while Brendan was on the computer) in a panic about the pet food poisonings. She was afraid to feed her 3 cats & couldn't get through to the vet to see which foods were safe, so I looked it up for her on the internet & then told her that Brendan was having a tough time. She decided that she'd stay home & recover from her scare (& feed her cats). It is such a gift to have a mother who understands & gives us the space to do what we need to for Brendan, plus loves us all pretty much unconditionally through it all :)

Saturday morning was fairly calm (good thing, because Charlie was in the office for the morning). We watched more Kamen Rider & discussed it over lunch. Charlie came home in time for japanese lesson & sat in with us. I'd thought Brendan would be up for lesson, but he had a really rough time coping (the purple part of the sofa pillow bothered him & his left hand bothered him) & finally he melted-down. Charlie suggested that they play with legos instead, so Tomoko & I finished the lesson & talked about orthodontia- she'd had braces as an adult & really sympathised with his discomfort. I also invited her to Brendan's birthday party next Sunday & we arranged to have our lesson in the morning next Saturday, so she could move her Sunday students to Saturday afternoon & come to the party.

Brendan spent a goodly part of the afternoon alternately obsessing about legos & raging around, & watching Kamen rider with me or other stuff with Charlie. It was a good day to have 2 parents at home! One thing we discussed over dinner Saturday was strategies for Brendan to reclaim his left hand & arm from the bad OCD thoughts. We've been working with him on this particular "thought" for a few years now- it's one of his earliest ones- & from talking to him about it, it may be that the whole thing originated because he has some sensory issues with his left hand. He's told us that sometimes it tingles or feels weird, which seems to have mutated itself into an OCD thought. He's renamed his left hand "Q-1", which stands for "quadroped 1" & that's how he refers to the thought, too. Over dinner we talked about Brendan trying to move his own "ki" or life-energy into that hand & see if he could reverse the bad thoughts about it. Brendan is very sensitive to "ki" & has found that he can sense the "ki" from other people & objects as well. I mentioned that the American Indians use bundles of herbs called smudge sticks to purify things, & that he might want to try this as well. I have done some healing work with crystals in the past, too, & told him he could use some of my crystals if he wanted to. Brendan seemed psyched to have some positive ideas for dealing with his hand trouble & went to bed in a pretty good mood.

I was worried about church on Sunday, since it's always a challenge for him, but he settled into his usual Dragon Fable game on the church computer during choir practise, transitioned really well to reading his book during the first part of the service, & even participated in the kids' story that happens right before we all go upstairs for Sunday School- something he rarely does. He wanted to stay for lunch (it was pledge Sunday, so there was good food :) & we heard that he'd taught his whole class some yoga that he'd learned in 3rd grade... although I don't think that was exactly the lesson for the day :) Flexible Sunday School teachers are another great gift... The whole afternoon at home went very smoothly. I found another ancient vhs tape- of episodes of "The Tick", which had been another of my early-90's faves- & we watched it in & around other activities. We went over to our sailing club, which is where Brendan's party will take place, to scout it out (I'm looking for likely places to hide the treasure, & we're all looking for where to do the various activities of his D&D-themed party). The bay is still mostly covered with ice, which was pretty amazing considering how balmy the weather has been lately. When we got back home I collapsed on the sofa to snooze for a couple hours while Charlie & Brendan went to fly a kite on a neighbouring hill & then played quietly with legos until I resumed consciousness. Brendan was much mellower all day- such a relief! And in the evening, after jammies time, he told us that he wanted to try to de-tic his left hand & arm. I found some lavender incense (I have real smudge, but strong smells are a problem & he loves the scent of lavender) & we did it in the living room rather than in his room, in case he had trouble with the smell. He lit the incense (part of the cachet was being allowed to light the match) & held some crystals in his left hand while I smudged his left hand & arm. He closed his eyes & pushed his "ki" until he said both sides of his body felt the same, energy-wise. The I smudged all of him. We affirmed that it was ok if his left had sometimes felt differently, because he's different & he's ok. Brendan looked very peaceful & happy when he was done, & he liked the incense so well he wanted to burn the rest of it in his room :)

I know this all may have sounded hippy-dippy... but I think that the incense & crystals were important psychological tools for him, that helped him to imagine himself as whole & ok. The effort certainly tired him out- he slept right up to the alarm this morning,which usually makes him grumpy as heck. But when I mentioned that I suspected the effort of moving his "ki" had tired him out, he smiled & agreed. He seemed proud to have done it. I asked him this morning how his arm felt & he said that it felt a little empty, so we discussed his taking time during the day to keep the "ki" moving. We told Cherie, his consultant teacher, what he'd done & she was delighted, knowing what a problem the OCD has given him over his left hand. I really love seeing his pride & joy in reclaiming part of himself. When I left school Brendan was sitting quietly at his desk doing his morning work with the rest of his class.

So we seem to be back to normal- for now :) This is birthday blowout week- I need to make lists of what needs to be done, particularly the adventure-quest-type activities (I have been googling co-operative games & have found some particuarly fiendish ones that will work very well to make things seem like a quest :) & then do them!! Our goddaughter has offered to help out & I think she'll make a good sphinx (tee hee). The RSVP's are dribbling in... And then, the day after the party (a week from today), the rest of the braces are installed & we get to go through it all again!