Tuesday, February 28, 2006

Real life for a Jedi...

I am happy to be able to report that B's first day back to school post-break went very well. Having the Go set to take to school helped a lot- he was really psyched about teaching his friends how to play. Checking-in with him on the way home yesterday, I discovered that he wasn't being triggered by OCD thoughts at school nearly as much as before the break. I think that being home for a week really broke their power to trigger anxiety, since he wasn't exposed to them daily. It was a very pleasant surprise. More disconcerting was his "I'm going upstairs, Mom" after snack & homework, & never seeing him again until a bit before dinner when he asked if he could play on the "c" (B-speak for "computer", specifically internet)... During the afternoon I could hear him playing with legos, then the tv was on for a bit (he knows he can only watch PBS or a dvd/video) but he neither needed or wanted my company. Considering how we'd been joined at the hip before the break... it was very surprising. I suppose he got his fill of mom last week :) At least, that was yesterday... I'll keep an open mind until he's done it for a few days in a row :)

Also, happily, I didn't need to go out & buy Japanese candy or new manga to survive yesterday. Well, actually, the Shonen Jump magazine I had ordered from Scholastic arrived, so I spent the time between loads of washing reading that. Unfortunately, it's much too violent to share with B :( I'm especially sad because they had the newest installment of Hikaru no Go in it! But by far the greater part of the magazine was devoted to hyper-violent fighting, with every weapon imaginable, & I'm not going to let my not-yet-10-year-old see that stuff quite yet. I know I'm swimming upstream with this policy, but I'm committed to keeping him from becoming overly exposed, & therefore immune, to violence like most kids his age.

I guess that's just one of the daily tests of being a real-life Jedi :) As I've gotten older, found myself in a life-partnership with another person, had a child, I've found more & more that I feel strongly about & feel the need to reflect in the living of my live. We talk about having "values" in our society, but I don't believe it's enough to just have them. They must be lived in order to bring them to life. I suppose that's really where I got the idea of being a Jedi myself. When I think about the way the movie-Jedi, like Obi Wan or Yoda, are portrayed, I often see an unrealistic picture of people who are serenely safe in their rightness, above mere mortals. Think of Obi Wan sacrificing himself in "Star Wars" after battling Vader, just to spur Luke on to becoming a Jedi himself. That's not really how I imagine Jedi to be. I think that's why my favourite movie Jedi is Qui Gon- constantly getting yelled at by the Council for not upholding the damn Code :) He knows what it's really like to be a Jedi, I think. He knows that life is messy & he jumps right into the middle of it anyway. He's a role-model of compassion & faith-based action. Compassion is a two-way thing, too. Self-compassion is terribly difficult to learn in our culture because it's not terribly valued. It's okay to beat ones-self up for being a mere human... But how can we live & model true compassion unless we learn to be compassionate with ourselves? When B calls himself a "git" for misreading a situation or hurting someone's feelings, my heart just breaks- & I get mad, too, because it makes me feel as though he's giving-up on himself, by labelling himself that way.

This happened just this morning, actually. It wasn't quite as smooth as yesterday- B was pretty surly when I came in to get his clothes out for the day, but I had the presence of mind to toss his whoopie cushion in as I left his room, saying I'd found it under my pillow last night (I had...) which really got him giggling. We were ticking along... until right before going out the door, when we couldn't find Rufus' belt pack (to keep him safe during gym class). B decided he must be a git because I reprimanded him for cussing-out the belt-pack for being lost, & even after it was found he couldn't calm down, just kept muttering angrily, until I couldn't take it any more & yelled... As soon as I realised what I was doing I recovered & then hugged him. I apologised, & realised that it was B calling himself a "git" that had pushed my button... & then remembered something I learned in recovery. I explained to B that feeling like a git was not the same as being one- that it's ok to feel like a git, but it doesn't mean it's true, & said I felt rather like a git for yelling. He seemed to get my point, but we were both pretty subdued & sad on the way to school. I made sure Cherie knew that we'd gotten off to a bad start when we got to school, & she suggested a game of Go to B, which really got him smiling & me feeling better about leaving him.

But even after a visit to my therapist, then to Barnes & Noble (I decided to try Shojo Beat to see if it was any better than it's male-oriented counterpart, plus I'd wanted to find a kids' Sudoku book for B), & then to Starbucks didn't lift my spirits much. I felt like a failed parent & a failed Jedi for snapping at B. After burying myself in manga for a while, I resurfaced & realised that Jedi have bad days, too. We are not machines, nor are we saints. We are people trying to live our lives with a guiding purpose, with compassion, & with integrity. If I want B to have compassion for himself, I absolutely must model compassion for myself. Another reason I am very lucky to have B in my life- without my young Padawan, I wouldn't have nearly as much reason to learn the lessons I must teach.

Sunday, February 26, 2006

Break over :(

We had our last day of school break today. B started to get "stuck" on the way out the door to church this morning, but I was not prepared to have a repeat of last Sunday (when he was in such a state of anxiety that we had to physically support him into the building & nothing I had brought with me book-wise could distract him, so C & I took turns playing dominoes with him in the lounge while the other went to choir practise for a bit- not a wonderful start to the day- although he did finally relax enough to go to Sunday school & was ok by the time we went home...), so I sat him in my lap & tried to problem-solve. My biggest problem is that I keep thinking that knowing what the "thought" is that's making him anxious will give us a clue to helping him past it. Well, it has helped him in the past to say it out loud & discuss it (darn it!), but some thoughts seem too scary for him to tell- & this was one of them. He did say that it didn't have to do with church, per se... & when I finally asked him if the books I had in my bag would be ok for him to read as a distraction, he made a cryptic request for "HNG6", which ended-up to mean "Hikaru no Go volume 6". Once he had the book in hand he was much better & read it in the car as well as during choir practise. Disaster averted...

We were supposed to have a Japanese lesson after church, but our poor teacher was still sick. She sounded so miserable on the phone, I just wanted to run over with some hot soup or something, except that I don't know where she lives :( It made for a very quiet day. C & B got in a lot of quality time :) playing B's Exo-Force game (for which he created a new machine of his own design out of spare legos, because he hasn't earned any of the big machines for the robot side yet with our behavioural charting system, so the robots are at quite a disadvantage in the game). I took this opportunity to complete Operation Boxer Shorts & B now has 8 new pairs of boxers (finished the final 3 pair). Whew!

Our music director at church was coming over to dinner tonight (I try to have her over once a month to keep in touch, since I'm chair of the music committee), but she was feeling yucky & also called-in very apologetically to put it off a week. C said that we must be the healthiest people in town right now, which really is a blessing, even though we missed having our visitors today.

Poor B was fine right up to bedtime, then melted down at the thought of the break being over. C managed to roll him into bed & then I sat & read to him (one of my favourite parts of Diane Duane's "Wizards at War" when Roshaun meets Dairine's mobiles...) until he finally emerged from under the covers & could speak again. During the requested "quick minute" he mentioned how sad he was to go back to school. I agreed that we had a great week, but said that I knew we'd have another one. I reminded him that we're bringing the Go set to school tomorrow & he can teach some of his friends to play, plus they'll be rehearsing the class play, which did cheer him up & made me feel hopeful that tomorrow morning may not be a disaster... fingers crossed.

Tomorrow is, however, beginning to look dismal & "what do I do next"-ish. As I mentioned in one of my first blog entries, the day he goes back to school after a break is usually terrible for me. I just miss him so much. I may have to go out & buy more Japanese candy... or maybe a new manga :) I should think about my next sewing projects, too, or maybe try to finish threading the dishtowels that have been on the big loom since last summer (now that would be a miracle...). I'll survive... but I'm beginning to think maybe I know where my kid gets his transition difficulties...

Thursday, February 23, 2006

Fab day!!

Well, after consulting B, I decided to defer the possible "playdate" this afternoon with a school friend to another day. The main event on today's schedule was taking our Japanese teacher to lunch, but there were plenty of projects around the house to keep us happily busy... & they did! During breakfast B got to giggling about a series of vignettes he's been imagining, involving his Rusagi (rabbit-inspired bionicles) & inventions that they had created, but were fantastic failures. I had broached the idea of doing some drawing together earlier this week, but he said he wasn't good at drawing & didn't want to. This morning, I casually mentioned that, although these vignettes would make funny written stories, they'd be even funnier if he cartooned them... & he bit! One of my Sunday school kids had lent me a book on drawing manga characters & I've really been wanting to try it out. B said that he'd try cartooning the Rusagi while I was doing my manga, so we settled at the dining room table, each with our drawing pads & pencils (we had to share the eraser, though :) & got to work. I coached B a bit at first, pointing out the shapes the Rusagi's face was made of, then suggested that he do a detailed drawing first & then a simpler version that would be quicker to draw for his cartoons. He took it from there. I worked through the first few chapters of the manga book, practising eyes & head shapes, & doing a LOT of erasing. B was clearly relaxed & having a great time because he also erased a lot, & normally he detests erasing. I would occasionally leave the room to move laundry into the dryer, change the fish's water & clean the bowl, or run the dishwasher, but he kept with it. I really enjoyed the pictures he made of the Rusagi- he coloured the detailed one & drew a pink tongue sticking out, which was really cute. He drew a bunch of faces with different, goofy eyes, giggling all the while. He made sure to compliment my drawings occasionally, too :) After 1 1/2 hours he'd had enough, and I was astounded by his persistence. He progressed from faces to full bodies, to completing one of his cartoons & it gives him the giggles just to look at it. I was quite pleased by my drawings, too :) It's been about 25 years since I took my college art courses... 'nuff said! Just about the time we finished our drawings, our Japanese teacher, Tomoko, called to say she was sick :( She was very bummed to miss lunch with us, but I assured her we'd do it another time, maybe during Easter break. B wanted to show me a Pokeman episode on one of the tapes he & dad got at the library, so we watched it before going out to our favourite Japanese restaurant sans Tomoko.

After lunch, B said he wanted to work on his legos. He decided earlier this week to reconstitute all of his Alpha Team sets. Most of them were shredded at least a year ago to make new versions of the sets. C tries to keep the pieces together once B has moved on to another project, so he'd unearthed all the Alpha Teams for B on Monday & that's been his main occupation the past few days. I've been impressed by the concentration & determination he's shown with this project. Looking through boxes of teesy pieces mingled helter-skelter (as opposed to opening a new set with only the right pieces in it) is not something he has a lot of patience for & he usually needs one of us with him when he does it. He has asked for very little assistance, though, & has managed to re-create a bunch of the sets. He's been taking time to play with them in between bouts of building frenzy :) So, he spent about 40 minutes this afternoon working on legos while I went up to my 3rd floor sewing/craft room (formerly the attic) & sewed. When I heard him turn on the tv (the tv room is at the bottom of the attic stairs) I suggested he watch just one episode & then we'd do something together.

The "something together" was the big project for the day- getting the seedlings planted for our garden this summer. As I mentioned a couple posts ago, I used to start all of my plants from seed before B was born, but had not found the time since. C & I found my API seed starter kits earlier in the week (during a lego-finding mission, actually :) & all of the pieces were there (yay!). So, I draped a counter with plastic & we went to work. B made it clear that he did not want to touch the "dirt" (germination mix) & I said that was fine... I got the sets put together (bless me, the instructions were still there, too!) & mushed the dampened soil into the little chambers, then gave B an old chopstick to poke holes for the seeds. We planted (all from Seeds of Change): cherry tomatoes, Roma tomatoes, bell peppers, Peruvian purple chiles, Oregon tomatoes, broccoli, basil, cinnamon basil, columbines, nicotiana, & larkspur. Theres a load more seeds to direct-sow, too (B sat & read the packages while I was mucking in the dirt, discussing planting methods- he's most excited about the edamame seeds &, for some reason, the zucchini...). I got the API kits set up in front of the sliding-glass door in the kitchen (southern exposure) & filled them with water. And now we wait! I am so glad we found time to do it!!

We had a snack & were both pretty tired, so we watched more Pokeman until it was time for me to make dinner. C came home from work & we spent dinner brainstorming things to do with tomorrow's pre-school-aged lunch guest. B only got squirrelly once, when I reminisced about his preschool years (thinking about himself as a baby & young child really makes him twitchy for some reason), but was easily jollied back to good humour. C took the ball after dinner & they played B's Exo-Force game while I finished my sewing project. Then it was kiss goodnight- & B was asleep. No meltdowns or getting "stuck" today. Loads of giggling & interesting discussions. Yummy lunch. Only a couple instances of "listing", which were easily diverted into conversation. It was a dream day- I told C I almost wish we didn't have to send him back to school... selfish, I know, but such a day is precious & rare, & experiencing my kid in such a relaxed state was truly a gift.

Wednesday, February 22, 2006

Facing fear...

Chance favours the prepared mind. -William Osler, 19th century physician (&, according to C, "the Grandfather of Internal Medicine")

C quoted this favourite saying of his to me on our way home from our visit today to Dr. M, B's psychologist. We try to see Dr. M just on our own every couple of months, to discuss the latest "hot" spots in B's behaviour & strategies for coping with it/him, or whether or not we actually need to intervene at all. One of Dr. M's many talents is giving us a strong sense of whether or not what we're doing is really effective, as well as positively supporting us as parents. There is no question in my mind that life would be much scarier without his help...

As I've been documenting over the past few weeks, B has had some big developmental changes going on, & while much of this is positive (in that he's developing appropriately for his age), the changes are quite challenging. B never does things in a subdued manner. Most of the strategies we've all put together for coping with the OCD have become less & less useful over the past few weeks & we are facing a vacuum of new strategies (although we are all working hard to find replacements!!). We spent the greater part of our appointment looking at the nature of the behavioural changes & discussing developmentally sound ways to approach them. It worked out well that B saw Dr. M yesterday afternoon, so he could see first hand where B is at. Since B is nearly 10 years old, he's beginning to work on his identity as a separate person from us, his parents, & also dealing with a lot of anxiety about mortality & being injured. Dr. M was very pleased that not only have we added the strategy of checking some of these fears out reality-wise to B's toolkit, but that he uses this strategy quite often with us & finds that it does alleviate his anxiety. We discussed the strategy of using physical activity as an antidote to anxiety, & tried to think of ways to motivate our essentially couch-potato kid to be more active. Our house really isn't big enough for a stationary bike, nor are we sure he's actually use one... although I would certainly make room if we thought it would work. Dr. M suggested that perhaps B would respond well to lifting weights, since B seems to like weighted things (like the ball-blanket he uses for sleeping). I also mentioned trying to get in the habit of going for a walk after school (after snack & homework). B has never been into this sort of thing, but will go if it's presented to be good for my health... I just have to get my act together & try it.

Our discussion eventually turned to dealing with some new & scary behaviours. As I have mentioned before, B is on medications (zoloft & seroquel) for anxiety & which prevent psychotic episodes that B has had during extremely anxious times. We are beginning to see some avoidance behaviours from B when eating & when taking the medicines. These behaviours appear to be motivated by the OCD, & Dr. M suggested that it might be best to not get too fussy about when B finds eating difficult. Intervention may come naturally (when B gets hungry) & making issues around eating oftens results in endless family struggles that we simply don't want to get started with... The meds issue is different, though, & although it's really nothing major so far, it's enough to make us worry about how to cope when he finally refuses to take his medicine. Dr. M told us that almost all families with kids on meds eventually deal with this issue, since it seems to be part of a kid's identity establishment to question things they've "always" done, like taking medicine. In essence, parents have "no cards to play" when it comes to the meds issue. If a kid refuses, there isn't much you can do but take them to the hospital or ride it out at home (depending on the medications the child is on)... however, it may be possible to weather the meds stand-off by making it less a confrontation than an exploration of the parameters. With B, the fear is that he will become psychotic & hurt himself without the medicine. C & I stated to Dr. M that the issue of B harming himself is what we use to determine whether or not B would need to be taken to the hospital during an extreme anxiety attack. Knowing our personal parameters helps enormously to prepare for such an event. C mentioned that the meds remaining in the blood stream for quite some time after dosing is stopped helps him feel less nervous about such a situation, although we can always tell if B's dinner dose of seroquel was forgotten because he can't go to sleep, but this does give us a cushion in the event B decides he doesn't want to take them. Dr. M suggested the idea of approaching going without meds as a scientific experiment, with well-established parameters that the whole family agrees to, which is something that would appeal to B & would also keep us in the equation. Luckily, so far B's ambivalence to the medicines have been motivated by OCD thoughts telling him that they are unsafe, so we discussed ways to make the pills seem different- putting them in a special container that could be declared "safe", offering them in a different place or time, offering them with chocolate milk or soda... as ways to divert B from the OCD thoughts & make them desirable. In a way, discussing these scenarios fell a bit surreal to me. There is a part of me that has been dreading to face this issue. I know what my kid is like without his medicine & that scares me so much, but I've only recently come to a sense of peace about B being on medications in the first place... The thing is, I feel very strongly that in the event B does refuse his meds, I have to be able to stay calm. B has always been able to sense my fear & scaring him could turn the whole thing into a confrontation, rather than something we can solve creatively together.

On the way home from our appointment, C & I continued to discuss our fears & how easily they could allow us to escalate possibly simple situations into major confrontations. C quoted Dr. Osler, & said that, although there's no guarantees for success, all of the advance planning we do just has to make a difference. I know one difference it has made already- by pulling my fears out of my imagination & discussing them in the light of day, they just aren't as scary. Also, by going through this process with C, I'm not only not alone, but we have the creativity of two different people to put into action. All this, plus basing whatever we do on our love & respect for our child... gives me the strength to face what ever may come. (stay tuned... :)

Monday, February 20, 2006

School break week...

This week is school break week in (most of) our area... B has really been looking forward to it, too. It's a good reminder to me that, as stressful as I find his growth & changes to have been that past few weeks, he's feeling it, too! Although we don't have major activities planned for this week, there is something to do every day (including Saturday & Sunday) & I find I'm guarding the left-over time as best I can, since I don't want this week to slip away in busyness. There are some fun projects B & I can do together, if we can find the time. I would like to get our seedlings started, for one. Before B was born I was a mad gardener (considering the postage-stamp size of our back-yard) & started pretty much everything from tomatoes to flowers from seed. Since B came along we've struggled to find the time to keep the perennial gardens (mostly herbs) from getting too horrible, plus tending to a few tomato plants (purchased at a local nursery) every year because we love them so. Last year I decided to try self-watering planters on the back deck to grow the tomatoes, & it turned out to be just the time-saving solution we were looking for. We planted the weekend after Memorial Day & were eating cherry tomatoes by mid-July! Plus the plants grew taller than C (who is 6'3"!!). Unfortunately, the Roma tomato plants were just not very good, which made me decide to do the seedling thing again. B was very into herb-gardening the summer before last, so I think he'll enjoy helping me get the seedling started kits together (they're like little greenhouses)- assuming I can find all the pieces... either way, that'll be a good project for us, & get everything started on time.

Today my best friend Roo came from Buffalo for a day-trip. I had requested it for a birthday present, & since her birthday was last Friday, it worked out well. Roo & I have been friends for 23 years, which means she pre-dates C in my life. We met while we were on staff at a UU summer camp in the Adirondacks back in the early 80's & have been good friends through all of the life-stages & -changes ever since. Roo's main claim to fame is not only being there when I first declared my intention to become a Jedi, but having egged me on by appending "J.I.T" (Jedi in Training) to my name on the letters she'd send :) She's a school teacher (specialising in deaf education) & it would appear that her district is the only one for many miles around that does not have this whole week off- she just had today & it was cool that she wanted to spend it with us. We went out for Chinese lunch & then made fudge, which she'd never done before (although she went to cooking school before deciding to teach, & is the best dessert-maker I know). B was very occupied with his "contraptions" computer game but decided to grace us with his presence when it came time to lick the pan... We all played Clue & then B tried to teach Roo to play Go- & she was a very good sport about it!! Through it all ran a thread of catching-up on new stuff & recalling shared memories. B showed her his spybots while I made dinner & when C came home from work they were roaring them around upstairs, to much hilarity. B had a tough time with OCD thoughts during dinner, hardly ate anything at all, & eventually had to leave the room because the thoughts were so upsetting to him. Although we only see Roo 3 or 4 times a year, I was struck by how unembarrassed I felt by his behaviour with her there... I rarely feel as though I need to explain him to her & it's a great comfort. B was in great spirits for most of Roo's visit & even asked her when she was coming back quite early in her visit, so I know she knows he's glad to have her around too. I'm feeling sad now that's she's left- she has a 1 1/2 hour drive ahead of her plus school tomorrow so she couldn't stay late. I sent some fudge with her, of course :) I'm so lucky to have such an enduring friend!

Tomorrow should be fairly laid-back, although we have to get up early because Daryl is coming to clean the house. I plan to take a quick trip to Jo-Ann Fabrics right when they're open (& least busy) because I can't finish making B's boxers until I buy more elastic (I've made 5 pairs already, but need to make 3 more). Hopefully he'll weather the trip alright... Maybe we'll stop at the asian food store on the way home to see if they have any new candy :) Then we're free until we leave for a visit to Dr. M later in the afternoon. C & I are already making notes to each other this evening about things to bring up with him...

C & I see Dr. M Wednesday afternoon, & since B is off school, Cherie, B's consultant teacher, is going to sit with him. She's been to our house many times, since we sat on a school committee that met weekly (usually at our house) last summer, but she's never kid-sat for B before. I think he'll have a blast. I lent her the first of Diane Duane's "Young Wizard" books, So You Want to be a Wizard to read during the break, so B & I are looking forward to checking-in with her to see how she's enjoying it. My ulterior motive in lending her the book was for Cherie to understand "Timeheart", which is something B has been talking & clearly thinking a lot about lately. B's been using the image of Rusagi (one of his bionicle creations) in Timeheart as an OCD diversion, so I'm thinking that it'll come in handy for Cherie to understand it, too, although I'm psyched to share the book with her, as well. It's our favourite series!

Thursday we are taking Tomoko, our Japanese teacher, out to lunch at our fave Japanese restaurant, since her clinical rotation right now is in a school & school's out this week. We may go to a school friend's house later in the afternoon, but the friend's mom was wonderfully understanding about my desire to keep things from getting too busy this week, so we're playing it by ear.

Dad's taking Friday off work (he usually takes at least one break day off). We are also having a friend from church who's daughter is in C's preschool Sunday school class over to lunch (daughter too), so B will get the chance to play with a younger child. He had a role in a church play over the holidays that required him to interact with this child & he seemed to bond with her, which is nice since younger kids usually make B very twitchy (we think it's because they're so unpredictable). I'm really looking forward to spending more time with them. They're a newer family at church & we really seem to be forming a bond.

Saturday we have a Japanese lesson in the morning, then off to another school friend's for the afternoon. Sunday, church & Sunday school...

Looking back on today, I'm really glad that we have a structured yet fairly relaxed week. B needs space just to be, these days. It'll be nice to find time to do some things together, rather than running from activity to activity. It'll also be nice, although not essential, to get some sewing done when he wants to play a computer game or watch a video (both being activities that he's been cool on for a bit, but seems to be getting back into...). Hopefully, we'll both find this week a refreshing break from our usual routine. It's weird, but it always seems to me that the time after the winter break is just a short slide into summer- with all of the changes that will bring. It will be nice just to live in the present for a while!!

Thursday, February 16, 2006

Spirals... & living with JRR

When I was in Survivor recovery (see "History pt. 1 back in the January archive) I learned that the process seems to take an upward spiral course... you deal with something difficult, think you're over it, move on to the next thing, & then the old stuff comes back again. Usually it's pieces you couldn't get to the first time, deeper, bigger, what you just didn't have the strength to face. Sometimes it's the "next level" of issues. One of my recovery issues was that a great deal of my abuse was from when I was very young & didn't have words to describe the feelings/experiences. As an adult, coping with the abuse, I used to have these pre-verbal flashbacks, re-experiencing the abuse, that were absolutely terrifying, because I had no words to describe what was happening & what I was feeling. The "next level" of these experiences came when I had an infant of my own. Just seeing how helpless he was frightened me... but because I had experienced the previous level of recovery, I knew what was happening & was able to find help before I became overwhelmed by my feelings. This is the "upward" part of the spiral- revisiting things with greater insight, & therefore a better chance of not being knocked-down by the experience.

What brought my recovery spiral experiences to mind is a similar thing I see happening to B these days. I never have, nor do I now, see B's life-journey with autism + OCD, Tourettes, etc. as a process of recovery similar to my own... but it has been interesting to see that B seems these days to be revisiting earlier stages of development on a higher level of functioning. I mentioned in my earlier post today that B has started whacking himself on the head in a most disturbing (& sometimes injurious) manner. This sort of behaviour when B was 5 years old is what led us to seek out a child psychologist & we were very fortunate to find Dr. M, who is still an important member of the village. Because we were able to find a positive (& somewhat humourous) resolution back then (detailed in my previous post) I feel confident that we'll be able to do so again, although there are some twists... for one, B is aware of what we're doing & why, which was not the case four years ago. He still thinks it's funny, but is also hitting himself on purpose at times to get us to throw beachballs at him. **sigh** I have explained that this is not the idea... On the positive side, when I request that he try to catch the balls I'm throwing, he happily complies, so there is hope of re-wiring the perseverative behaviour away from whacking himself (as long as I remind him why we're doing this!).

The other "old" behaviour that B has been revisiting is "listing". Because he's doing it on a higher cognitive level, it took me a while to put my finger on it... it was my gut that finally clued me in. When B was in kindergarten & first grade almost all of our time spent together in the car was spent with B reciting lists of things. He did it a bit in other situations, particularly stressful ones, but the car was the main venue. We would start out ok, with a bit of chat, but it always evolved in B wanting to list all of the different kinds of bionicles, their different masks (by name) & their attributes. If it wasn't bionicles, it was other interests- detailed lists of everything he knew about these things... it nearly drove me mad. I started finding excuses to ask him to stop- the traffic was too heavy & I needed to concentrate, etc. I didn't want to be disrespectful of him or his need to tell me things, & I sure didn't want to cut off or limit our communication!! But it didn't feel like communication, really. When I finally brought it up with Dr. M, he explained that it was a classic Aspergers-type behaviour. It was B's way of chatting- but it was not reciprocal. Dr. M helped us to find ways to help B learn to stop listing & actually have 2-way conversations, by role-playing conversations, taking turns asking each-other questions & responding, & reminding him gently when he'd lapse back into listing behaviour. B has become quite the conversationalist in the intervening years & I really enjoy our conversations, which range everywhere: string theory, power rangers, brainstorming new bionicle creatures, discussing Miyazaki movies, what happens when people die, what happens to bionicles when they die... you get the drift. But over the past couple of weeks, I have found myself feeling grumpy in the car on our rides to school, asking B to hold off on chatting while I navigate traffic, deal with snow... I realised that I was getting tired of his conversations, & that these conversations were mostly B telling me the attributes of the bionicle creatures he'd been dreaming up... sound familiar? Well, I was fooled at first. To be honest, I am often awed by my kid's ingeniousness & attention to detail when creating his creatures. He creates cosmologies for them- unique languages, musical styles, & spirituality. There are times when it feels like I'm living with JRR Tolkien! And I really enjoy hearing him tell me all about these details, although I really wish he were moved to write all this stuff down. Even if he doesn't do anything with it for years, he'd have amazing background for future stories.

Well, on the third morning in a row that B wanted to tell me all about what the Great Spirit looks like to Rusagi on the way to school, I realised that he was actually listing again. Figuring it out helped me a lot. His revisiting these behaviours really makes sense, in light of his present challenges. The coping methods he's used for quite some time are not helping any more & he doesn't have much in place at the moment, so it seems quite reasonable that he'd fall back on older comfort behaviours. I feel pretty confident that once he's feeling more in charge of his life again, he'll go back to having conversations. It's just so interesting, though, to find him spiralling through life as I do. I may be the mom, but it's also nice to remember that he's on his own life-journey, just like me.

"Summit" update...

I know I keep saying this, but our "village" is the best in the whole world! I'm still processing yesterday's meeting with B's school-based team, but I do know that it came at the right time for all of us. Along with C & me, there were 5 teachers/therapists gathered around the table to discuss how best to help our kid- & therefore everyone around him- best cope with his changing needs. It was a very intense discussion & I was very glad that C & I had sat down the previous evening (over Valentines chocolates & champagne- how civilised!) & made preparatory notes. As I suspected, everyone had been noticing the changes in B's behaviour & was looking for new strategies. We brought the group up to date on B's "toolkit" & the language we have been using to talk about the OCD thoughts (so we can be consistent), as well as new ways of diverting him from them. We shared that B himself has been complaining that his usual strategies for coping with the "thoughts" are not working any more, hence his recent neediness at home & at school. We shared incidents of newer behaviour, including a return of some perseverative stuff we hadn't seen since the Tourette's became apparent last summer, like whacking himself in the head, & a newer behaviour that B terms "getting stuck" which seems to precede serious meltdowns. I have been having a terrible time getting a handle on the "stuck" mode (& was making things worse :( unfortunately) but C has figured out some successful strategies- essentially a massive redirection/distraction- that I've since tried & had success with. As with many of B's less-functional behaviours, we see these things at home before they occur at school, so we wanted folks to be prepared... It was nice to see that everyone agreed that he's maturing & really feels like a nearly-ten-year-old emotionally & cognitively. He's also made good progress recently with social interactions with his peers.

Getting down to solutions, we talked about how to help B cope with the "noise" from the OCD thoughts that makes it difficult for him to tolerate ambient noise (like when the class is brainstorming or strategising together) these days. We discussed having him use earplugs or headphones to deal with the noise problem. His teachers came up with a plan to allow him to do some of his school work quietly, away from the other kids, & still be supervised by an adult. For the perseverative behaviours, I recalled the strategy that Dr. M suggested a few years previously when B was doing the same thing (in essence, we threw soft balls at him in order to re-wire that whacking motion into a catching motion- it worked almost miraculously back then...) & I promised to dig-out the little beachballs we'd used then & send some to school. C recalled some ideas that Dr. M suggested for diverting B from the intrusive thoughts, using colour imagery to help calm him down. We also took notes on some specific questions from B's team to bring to Dr. M when we see him next week. His OT is particularly interested in suggestions for sensory integration methods that don't require a great deal of motor planning. She's tried Brain Gym & the Infinity Walk with him, but his motor planning issues get in the way of his enjoyment, & therefore co-operation.

The main impression that I'm left with from this meeting is that B is surrounded by people who love him & have his best interests at heart. They also surround C & me with their appreciation & heartfelt support. When I am with these folks I wonder how I can doubt that B will be ok :) OK, reality check- it's when faced with the snarling, sarcastic pre-teen that I really have my doubts.... **sigh** Having this support is what allows me to get out of bed in the morning & decide that I'm going to face the snarling kid with kindness & as much patience as I can!

So- the ear plugs are in the backpack for B to use today. C & B have already given the balls a try, with great hilarity. Pelting 5-year-old, pre-binocular-convergence B with little beachballs was a different experience than doing it with the present, fully-visually-clued-in, bigger & sillier B. If nothing else, it gets him up & running around, trying to get dad back! I kept biting back "Somebody's gonna get hurt!" last evening during the scrimmage... can't escape doing the mom thing :) At least he likes this sort of therapy! A bag of balls are ready to go to school, too, perhaps after the winter break week, next week, so they'll have time to figure out how to use them without causing all hell to break loose... (brave people!).

Tuesday, February 14, 2006

Growing pains... can be good!

Happy Valentines Day to all! B passed-out his valentines to his teachers today, first thing, happily explaining what asagao are (see previous post) to all who would listen :). He was then waylaid by Ryan, the teacher of the other 3rd-4th grade class, & came away from the encounter giggling madly, hiding something in his hands. It turned out to be a whoopie cushion, so I do believe that there is more than Valentines madness on tap for today. May the Force preserve them all... ! I made a whilrwind visit to Paula's classroom, then ran out to get to my 9 o'clock therapist appointment. The waiting room was absolutely quiet, in marked contrast to my last stop, & I took the opportunity to just sit a bit & enjoy the quiet before taking my knitting out to wait...

Lately I have been finding my therapy sessions to be focused on processing things that I need to get a handle on in my life- an opportunity to talk about various issues & get to the core of them so that I can get on with the living part. Today I really crystallised some concerns/thoughts about Brendan's current development. This was very much on my mind because not only has he seemed to have very different needs since his recent meds crisis, but the traditional strategies for everyday life with B have not been working as well. The differences have been apparent at both home & school, & some people had been wondering if the changes were due to the medication change, so we had arranged to meet with B's teachers tomorrow (C is only working in the morning, so he can be there) to discuss new strategies & share our perceptions of what's going on with B. C & I feel strongly that B's current behavioural changes are developmentally driven. C was looking at some of the Eriksonian developmental stage info our pediatrician hands out at the yearly check-up, & it seemd to him that B was behaving appropriately for his developmental stage- with the unique B spin on it, of course. B's been very interested in spirituality & death lately, which is spot-on for his age of nearly 10. He has been thinking about impermanence vs eternal, & the stories he makes up & tells us (about his various bionicle or pokeman creatures) are complete with what happens when they die... his new lego game does not allow for characters dying because he doesn't think it's appropriate for a kids' game (!). Many of B's tic/OCD thought triggers have been changing, too. He's much more disturbed by noises & unpredictability (particularly during class time) than he has been for a while, but still seems to enjoy unstructured time with his school friends. At home, B's needed almost constant companionship/distraction, & really wants to discuss things or tell us his stories or just talk. On the other hand, he's been remarkably mature about some things... I mentioned yesterday that I was concerned about my aversion to playing board games colliding with his need to play the game we designed, but he had come to the conclusion on his own that it was okay for me to play only occasionally if I wanted to, & he was apprecitative of my help in designing the game. After school yesterday we watched "Spirited Away" together in japanese (with english subtitles) & we were not only amazed by how many japanese words we understood, but had some really satisfying discussions afterward about the spiritual/moral issues raised in the film. B pointed out to me that C & I would never behave the way the parents in the film did (they, in essence, are tempted by the food of the gods, eat it without invitation, & are turned into pigs for their greediness) & I agreed wholeheartedly that Dad & I are too uncomfortable about overstepping social boundaries to eat food uninvited. This seemed to comfort him & to free him up to really enjoy & think about the rest of the film.

So- back to the meeting with B's teachers... I was bemused to discover yesterday that the meeting has become a summit- both B's OT & speech teacher stopped me in the hall to say they'd be there, too, although neither of them ususally comes to B's school on Wednesdays... When I told C about this development, we decided that this was a sign that everybody was noticingstruggling with the differences in B's behaviour & looking for some help. I had heard from B's OT that he had started resisting being pulled-out for OT & that she was going to try to adapt what she is doing with him to work in his class setting at least part of the time. She said that in most kids who begin resisting like B is, it's a sign that they no longer need OT, but with B's motor-planning & sensory integration difficulties, this isn't the case for him. Sooo, I really can see why she would like to be in on the discussion tomorrow. I have been feeling somewhat intimidated, though, by the change from "get together with teachers" to "full team" feel we're getting now... I told C that it made me feel like we need to bring concrete ideas & strategies for these folks, rather than just brainstorm/chat. C thought it was enough that we even called the meeting (many parents don't get even that involved) & was feeling fine about going-in with general thoughts & ideas. While talking today to my therapist about B's recent challenges & changes, I was able to put what I've been noticing right out in front of me & look at them...

What I see is a boy who is growing. Over the years of dealing with Aspergers, OCD, & more recently with Tourettes, B has developed strategies for coping based on where he was emotionally & cognitively. As B grows & changes, his strategies have had to change, but it's been very gradual. In the past, most of the coping strategies have been "outside-in"- developed by his care-givers with input from his psychologist & psychiatrist & the other skilled people in his life, & then implemented by his care-givers to assist him. Over the past few months B has been taking more responsibility for the coping, but it's still been based on an "outside-in" system (to my mind, at least). I think that B is experiencing not only a change in what his needs are, based on changing developmental stages, but also a change in how the coping strategies need to be implemented. When I look at it all this way, it seems very natural. But also pretty big! We may have to shift some of his school goals to accomodate them. For example, a lot of the focus has been to "plant" B in the classroom (since he usually prefers to do his work alone), so that he can learn to interact with other kids, learn pragmatic language, & appropriate socialisation. But if the noise & unpredictability are affecting his ability to overcome the internal "noise" from the OCD, then he may just need to have quiet times & places for part of the school day. He clearly enjoys playing with the kids outside after lunch, & other unstructured times in the day, plus the school play rehearsals have begun & he's having a blast working on that (his teacher told me wistfully that she wishes his whole day could be spent on the play- he's not only enjoying it that much but functioning at his best & brightest...). Perhaps that will do for social time, rather than trying to keep him integrated into the classroom all the time. I think that sharing the "toolkit" approach with everyone will be a good thing, too. We can share not only the current complement of tools that B has, but our strategies for helping B develop new ones as the need arises. We'll also have a common language/terminology we can all use with him, which is a great help.

I am so glad that I've had the chance to really think about & process my perceptions before going into tomorrow's "summit" :) I strongly suspect that the shared experiences of these folks will give an even more complete picture of where B is at, & I do believe that we'll be able to find strategies to help both B & all of us cope with his emerging capabilities, as well as changing needs. Yet again, I feel deeply grateful for the village that has assembled itself around him & us as a family. Their skill, creativity, & respect have made school a safe place for B to be, are what allow C & I to have the breathing room we need as human beings, & give us essential alternative persepectives on our kid.

Monday, February 13, 2006

Kaleidoscope days...

The last few days have been like living in a kaleidoscope- I'm left with images of events, encounters, experiences that have not been fully processed yet. I am a process person, so this is not the way I like to live life- maybe because I don't feel as though I've lived it until I've been able to process. And if it's been busy for me... I'm trying to imagine how it must be for B (although he held-up very well, mainly because he had both parents to bounce off, most of the time). Luckily, the weekend wasn't bad busy, just unusually full of activities. Saturday morning we started right off after breakfast making valentines for school. The hand-making of valentines has become an important event for me, & it was one of the first craft activities B & I successfully shared, which has added to it's significance for me... for him, well, the hardest part for him is signing them so it doesn't really matter of they're store-bought or not. :) This year we made them from origami flowers, using the simple asagao (morning glory) pattern, & when he got tired of folding, I took over doing that & he signed & embellished. We had to make a fair number because the valentines project at school this year is making valentines for hospitalised children. B was not in the best state of mind by the time I declared us done (we wisely made the teacher valentines first), but was able to pull it together for Japanese lesson. He worked pretty well with us for maybe 20 minutes then managed to divert the lesson onto a discussion of the latest volume of Hikaru no Go. To be honest, I don't mind when B does this when he's gotten fed-up with the lesson. It's a lot better than having him melt-down & we usually end-up learning things about Japanese culture or talking about things we'll encounter when we go to Japan next year. I am often amazed by what a good sport Tomoko is about her lessons being derailed this way. The C came home (he worked Saturday morning) at just the right time & got some lunch for B while Tomoko & I finished the lesson. I promised that I would go over the parts B missed with him, & it sometimes really works out best when we do this. Then I can give the lesson my undivided attention & really get the point of grammer we're learning. This extra practise with B during the week helps to nail it home in my head, too. I'll say it again, though, we're very lucky to have found Tomoko!!

The after-lunch activity was a play-date with a school friend- the first time this friend has come over. His mom stayed, which I really enjoy, since we get to visit too. The whole play-date thing has never been easy for B or for me. I don't feel comfortable leaving him the first time we go over to a family's house so I stay, too. This has led to our finding some great & enduring friends, & also to discover that the folks who don't appreciate this habit of mine (I always mention it beforhand) are usually not people B's comfortable going back to visit anyway. Interesting... but anyway, I really like it when I find another mom who stays to visit with me :)

After the playdate, C & B did their own thing while I took some breathing space & did some sewing. I discovered that B is out-growing his boxer shorts (yet again), so grabbed this little time to finish a project I'd been working on for me before staring on the new size of boxers- I usually make 9 pairs since he needs extra to leave at school. After dinner C & I tag-teamed playing the new lego game B has been creating with our help. I am beginning to face the fact that I have a serious hang-up about board games & I wish I understood it! I loved the design phase of putting the game together, but now that we're actually playing it & testing the rules I am not having much fun :( This is bumming me out because it's taking the joy out of the process with B... we are lucky that C loves board games & will play with B for hours. I am more of a card game/dominoes type & will happily play those with the guys. I do need to figure out how to get past this aversion, though. B is obsessed with finishing the game so it can be played with friends & begs to work on it every day after homework is over. Maybe if I put a time limit on it, then we move on to other things... I'll have to try that today...

Sunday- church (no choir today so we could get there later) & Sunday School. My senior high class Sunday School is very small- only 4 kids enrolled & 1 of those was at a conference this weekend, so it was a great surprise to have everyone else show up plus one visitor & potential new member. The Board of our church has asked the youth to get involved in long-range planning by giving feedback on various issues relating to RE & youth participation in the church. In the process of discussing this we discovered that the kids don't feel a strong UU identity or a sense of the history of our denomination, or at least not strong enough for them to explain what it is that makes them want to be part of the church (other than their parents bringing them :) or that they could use to explain to friends why they like coming to church (which they do). I gave them a bit of an overview of how our denomination came into being & why I personally find church important in my life, & promised more info next week. We decided that it would be good for them to be able to write their reasons for coming to church on the walls (our room is famous for it's graffiti) when they've had a chance to research & discuss it all. I really enjoyed this process with them. I think that this is what being a teenager is all about anyway- figuring out who you are becoming- so any way that I can assist makes me feel like I'm doing my "job" as friend, advisor, & teacher. But it was intense!! I was so tired during lunch that I felt like taking a nap, but there wasn't time. Yesterday was also my mother's birthday & we invited mom, cousin & her husband to dinner to celebrate. So, I took about half an hour to finish my sewing project from Saturday (& I'm wearing it right now!) which refreshed me enough to start cooking. And baking. And cooking :) C kept B occupied & made the salad, so when folks arrived I could sit & chat. Our cousin's husband is a dean at the music school in our town & talk naturally turned to the wonderful lessons that they offer to the larger community... B was actually enrolled in their early leaning programme from the time he was 2 years old but the year he began kindergarten he also began PT, OT, & visual perceptual therapies & it was just too intense for us to keep taking him to music lessons as well... Sometimes I really do feel like we're swimming upstream in our desire to keep B's life as unprogrammed as possible. Our society strongly values constant activities for kids- keep 'em busy! Don't even give them time to think!! So many of the people we know spend their lives driving their kids from one lesson/game/playdate to another. B's needs are very concrete, though. He overloads very easily & does not do well in structured environments. He can cope with summer camp sessions because it's structured more like school & there's time to get used to things. Anyway, trying to explain B's needs to well-meaning family who see an obviously talented kid going fallow is not easy... We are fortunate that B's music teacher at school loves to challenge him with extra projects because there's no way we could add music lessons to his life right now. He took a couple years of piano on a low-key basis with the former music director at our church. They worked together at home & sometimes focused on composing songs or playing drums or whatever B was into, rather than piano, but they were a good experience for B. We also had the primary-level music teacher at school work with B after school for a while, too, but his interest lapsed. There's a part of me that really wants B to play an instrument or be in a choir or something!! But I've had too much experience with trying to force him to do something & having him take against it fiercely as a result... I just have to respect his rhythms & trust that his abilities will shine through when/if he does go back to music lessons, & this is what I explained to well-meaning family. I also mentioned that we take Japanese lessons, which are a wonderful excercise for his "ear", too. ("See, we're not total slackers!" I thought... :)

Grammie seemed to enjoy her birthday dinner & company very much. One of the kaleidoscope images from last night that sticks in my mind is of her wearing the "autism awareness" wristband I gave her last fall... It's such a joy that my mom has come so far in her ability to cope with B's "labels" that she can wear it. When B was first diagnosed I didn't tell her- it would have been too devistating. Over time, when she couldn't help but notice that B behaved differently, I told her bit by bit. I know she was overwhelmed, but all I could do was model acceptance of who B was & it finally rubbed-off. When the OCD hit & B couldn't be touched by anyone but me it was horrible for Grammie, who loves hugging & kissing her grandsons. But she learned to be respectful of B's boundaries & eventually reaped the rewards of her patience when he could finally hug her again. Since Grampie passed-away nearly 4 years ago, Grammie has had an open invitation to dinner with us every Friday night. This has brought us all even closer together & I see my mom having even more acceptance of, & pride in, her "different" grandson. C told me last evening after B was in bed that Grammie had helped B through a particualrly ticcy moment that evening, distracting him in a loving way all her own. It's not only comforting to see this but validating- that she can learn from us what works well for him, & that she, too, can feel capable of helping him when he needs it.

This morning was back to school. We created a new tool for the "toolkit" at breakfast, to help with the intrusive OCD thoughts & we were both keen to tell Cherie about it so she could remind B to use it during the day. It involves imagining Rusagi (creatures created by B) singing in Timeheart (a concept created by Diane Duane in her Young Wizard series) to help heal rifts in time & space. They sing in their own language & the song he sang was so sweet! It certainly helped the breakfast-time thoughts. After B was well-planted at school I taught Cherie how to make asagao, helped Paula out with a project, talked with both B's OT & speech therapist, & consulted with 2 people on knitting projects. When I got home I continued the process of putting the house back together after having had a dinner-party, plus the laundry... but was particularly struck by how quiet it was in the house, & peaceful. How I finally felt like writing again, in the midst of all the morning's chores. I really enjoy feeling fully engaged with life & wouldn't have changed any of our weekend activities for the world- particularly as we seem to have survived them, but I guess I'm someone who really needs to live life slowly to fully enjoy it.

This week isn't quite so crazy, with most of the birthdays out of the way (got to get Roos' prezzie in the mail, though!) & Valentines Day preparations nearly ready. But it will be another full one & I'm just going to have to find the quiet time, somehow. Time to examine my life & reflect on the images that stick out of the kaleidescope whirl.

Thursday, February 09, 2006

Meet Rufus...

This is Rufus, the naked mole rat. He used to be pink, but is now greyer than I am :) By Velveteen Rabbit standards, he is Real... and it shows. I never, ever imagined that my life would be enriched by a naked mole rat, nor that I would count one (even a stuffed one) as a member of my family, but that is what has happened...

Rufus' story begins with Lilo & Stitch, the Disney movie. Grammie gave the dvd to B & we ended up liking it a great deal. We have not had the best of luck with Disney films in our house- The Jungle Book scared the daylights out of B (well, Kaa the snake did) & even at the age of 5, B "got" the fact that Simba was being made to feel responsible for his father's death in The Lion King & it upset him very much. Until Lilo came along, the only Disney movie that we unreservedly endorsed was Mulan, which C & I rented to preview when B was 3 1/2. The night we watched it I laughed so hard at Mushu's antics I was afraid I would wake B up (the tv room is right next to his). It was a great treat to discover Lilo & Stitch. B was around 7 & getting into outer-space & aliens, so he loved the "experiments". We all really enjoyed the messages about universal/non-traditional family values, with the added bonus of a transgendered supporting character- not something you see every day! (how Pleakley has flown below the radar for so long is beyond me... :) Since we don't get cable tv, & therefore Disney Channel shows, Grammie started taping Lilo for us. Of course, sometimes Grammie goofed the times rt Disney goofed the schedule & we got other shows on the tapes besides. We generally sped past them, but one day we were lazy & watched the Kim Possible episode Grammie had accidentally taped... & were hooked. I loved the girl-power message, B loved Ron & Rufus & 10-year-old genius Wade. So we requested that Grammie tape KP as well. We found the website & online games & one day I saw a Rufus stuffie at the Disney store & decided that Santa should bring it for Christmas. B found him peeking out of his stocking Christmas 2004 & whooped with joy. Rufus began talking immediately (in the voice from the show, which B mimicked perfectly) & had comments about everything. He & B became inseparable during holiday break. B had developed strong attachments to a couple of his bionicles after he developed OCD, but Rufus superceded them all- & he was easier to sleep with :) He also was a wonderful distraction when the OCD anxiety would overwhelm B. We found that we could tickle Rufus & B would laugh for him, or we could put Rufe up B's shirt & he'd giggle, & begin to relax, & soon the anxiety was forgotten in the fun. Rufus became an important anchor for B & a lot of fun for all of us.

The week back to school after the February break that year was a tough one for B, & his teacher requested that he bring Rufus in to school with him, to see if it would help him cope better with schoolday transitions. We were fine with it (since B took Rufus everywhere else with him) but I was concerned that either B would put Rufus down somewhere & lose him, or he'd avoid doing some things because he didn't want to put Rufus down, so we found an old belt pack of mine & gave it to B to use as a Rufus-carrier. Rufe was an instant success at school. Kids whom B had barely spoken to that year (this was March!) were asking him about Rufus or having conversations with Rufus & it appeared that B was using him to initiate social contact with classmates. I knew that Rufus was truly a person in his own right when B's teacher informed me that Rufus had a role in the class play & could I make him a chicken suit.......! (I wrapped him in a feather boa with just his cute little face sticking out) B did his first research poster that year on naked mole rats & actually found a live web cam at the national zoo that showed their naked mole rat colony (the real ones are not nearly as cute as Rufe, I'm afraid). At B's school concert at the end of the year, when all of the classes perform what they've learned in music class that year, we had another surprise. B hadn't told us about it ahead of time... but in the middle of his classes' presentation, his music teacher introduced a guest soloist- a naked mole rat. B got a huge grin on his face as he & Rufus came down from the risers to the microphone. He sang, in Rufus' funny voice, the first verse of "Gary Indiana" from The Music Man, then backed-up his class on the rest of the verses with perfectly timed "yeah!"'s. People were rolling in the aisles & gave them a standing ovation. C & I were blown away. When you have a kid who requires quite a lot of explaining to others... well, it was inexpressably precious to see him shine like that. All thanks to a naked mole rat...

B & Rufus are still tight, although Rufus is not the novelty this year at school that he was last. I hear that he's singing the descant to Bobby McFerrin's "Don't Worry, Be Happy" for this year's music night, though, so B's music teacher seems to know how to keep a good thing going. As B's anxiety ebbs & flows I sometimes have to remind Rufus to be more proactive in helping B out, though he's always ready to do so when reminded (or woken up- Rufe sleeps a lot in the belt pack these days). He played Watson to B's Sherlock Holmes for Halloween last October (I knitted him a little vest to match B's costume) & had his own stocking this Christmas for which B provided the goodies :) Whoever would have imagined the previous Christmas that B was to receive a transitional object that would make such a huge difference in so many facets of his life? Rufus has transcended toy-ness for all who "know" him, thanks to B's imagination & need. In the immortal words of Stan Lee... 'nuff said!

Wednesday, February 08, 2006

Beliefs on my bumper...

Life has been very full the past few days, celebrating birthdays & getting ready for more... not to mention Valentine's Day (thank goodness C reminded me! I always get a false sense of security after finishing his birthday preparations, often forgetting the next important holiday that's just around the corner :). I turned 48 yesterday & while B was in school I not only enjoyed a delightful lunch with B's best buddy's mom, but went to see the eye doctor to have my eyes tested yet again. I received my first bifocal prescription at the age of 40 & have gone no more than 10 months before needing new lenses :( ever since. I suspect all the close-up work I do makes me more sensitive to my vision changes (that's the doctor's theory, too). After the exam, while I was seeing the optometrist to update my measurements & make sure my face hasn't changed in the last 10 months either (so the new glasses will fit) another patient arrived to get new contacts. We were both waiting idly when she asked if that was my car parked out front, with all the bumper stickers. I admitted it, & she spoke reminiscently of past cars of hers, similarly plastered with stickers, & told me she suspected we were very similar in outlook.

I enjoy these encounters very much (well, the positive ones :) since they usually come out of the blue & are as varied as discovering that the person in the car next to me, waving their hand, is not giving me the finger but the deaf "I Love You" or coming out of our downtown church to find some local photography students documenting the back of my car as "urban art". I'm quite sure that Professor Snape would find me quite comtemptible since not only do I tend to wear my heart on my sleeve (OoP pg. 473, UK paperback ed.) but also my beliefs on my bumper :) Ever since my first car, Bessie (in honour of Dr. Who's roadster), I have enjoyed finding creative bumper stickers that reflect ideas & perspectives I like to share with the world. We always buy used cars & drive them until they are ready to be put to sleep, so I generally have time to collect the necessary stickers- old faves & new ones that I've spotted around town or in catalogues (Syracuse Cultural Workers http://www.syrculturalworkers.com/ & Northern Sun http://www.northernsun.com/are my favourite venues) for the next vehicle. Some of my coolest stickers have been sent to me by friends far & wide (thanks Leila! :) & some represent local organisations that we support. I seem to have taken it all to a new level with "Hedwig" (B's name for my car) pictured above, though, & C keeps wondering when I'll run out of room...

After we had exchanged our favourite places to find cool bumperstickers, the woman asked me if I was active in some of the organisations whose stickers I display, which brought me up short. I said that we financially support them... & then got mentally stuck. Fortunately, I was standing in the little building where for 1 1/2 years I brought B weekly to work with Dr. C on his visual/motor difficulties. Although Dr. C & her husband have left town to be closer to family & sold the practise to another very skilled practitioner, the support staff is the same, & I had just been updating these lovely folks on B's general progress since they'd last seem him for a regular eye exam. So, I pulled my self mentally together & responded that I have an autistic child & am most active in advocacy work with him. And then our optometrists came to tend to us & it was time for me to say goodbye & thanks for the chat...

On my short drive home I thought about it all... again. Every so often our local urban justice organisation calls to remind us of the next rally or march, & I explain that we have a young child at home & aren't available, but are very happy to be financial supporters- & they, so far, have been unfailingly cheerful & kind in response. The bottom line is that B can't bear crowds or noise or unpredictable situations, & as the "veteran" of many protests, marches & rallies since the early 70's, I know that he'd be miserable if we tried to take him to such an event. So how do we give our autistic child the same value for social justice & change that we have? And how can I stay involved in social justice while retaining the precious energy I need to raise my challenging kid? We are fortunate that our church not only collects for the local food cupboard & has a strong social justice undercurrent as a community, but we also host homeless families for a week 4-5 times a year, as part of an interfaith hospitality network. C always volunteers to prepare a meal during these weeks & takes B with him to play with the kid guests (hide-and-seek with walkie-talkies is a favourite :), which is much more B's speed. B's school also works to empower the kids to seek solutions to the world's problems in a just manner by thoughtfully researching the things they'd like to see change or help to make better & then decide the best way they can effect change. This year B's class researched the hurricane Katrina aftermath & decided to have an on-going craft & bake sale so they could send money to the Red Cross for relief efforts. I have assisted by teaching crafts to his class & making bake-sale goods at home with B. But I can't escape the occasional feeling that I'm not doing enough...

Yesterday, I responded to that friendly woman's query that I am raising an autistic child & mostly advocate for him... & it struck me that this is social activism. Sometimes the classic "get involved in someone else's problem" school of activism is what sticks in my mind as "proper" social action. If my actions actually changed my life for the better it was a cop-out... but this really is a 60's-70's artefact, isn't it? I played wheelchair basketball back in late 70's & early 80's, & met & made friends with too many Vietnam vets to think that ending war anywhere else doesn't do us at home a great deal of good, too. The 90's "think globally/act locally" seems much more appropriate in these times when our actions as a country in the wider world have finally, tragically, come home to roost. So I realised, after I said it, that my advocacy for my child follows this philosophy. As many are discovering, if we can change the attitudes & policies in our little corner of the world, it can ripple outward to affect a great many others. This also follows my Jedi philosophy of treating others with respect (no matter how else I may feel like treating them...) as a spiritual/mindfulness practise. It's really hard sometimes- & all the more satisfying when I succeed. And it's not as though "coming out" publicly as the parent of a person with autism has been effortless. It felt like big steps to wear the "Autism Awareness" wristband (& hand them out to friends & family) & to put the puzzle-piece ribbon magnet on my car. I thought about these things for months before finding the courage & place in my life to act on them. It's all part of the process of living, really. It's a continuum: dealing with the changes in my life after B was born, emerging back into an active life with this challenging kid, finding out why he's so challenging, coping with my feelings about his diagnosis(es), & then taking steps to make life livable so that we can get back to the work of living in the world, as part of the world. Perhaps wearing my beliefs on my bumper has also been an important part of this process... saying "I'm still here! I still care!" during the times when my energies have to be spent on B & keeping our family functional. So, guess what? I'm a social activist, right out of my own home... :) Not that I can rest on my laurels, or anything... but it's ok!

Sunday, February 05, 2006

Our extended family...

C & I had a funny/strange conversation this evening, while sort of reviewing the day after putting B to bed. I mentioned that I had wished this morning at church that I could put a sign around our kid's neck that read "I am Autistic (see my mom or dad for details)". C agreed that B had been particularly on his own planet this morning, which can make for interesting reactions from those who aren't regular attendees at our church... What inspired my comment was B's burying himself so deeply in a book during the first part of the service (before the kids leave for Sunday school) that he was completely oblivious to those trying to greet him. The guest speaker today, associate minister at the other UU church in town, had come down from the pulpit & was greeting those in the front. I saw her head toward B, stand there for a moment looking at the top of his head (literally buried in the book- he's going through Beverly Cleary's at an amazing pace :) & then slide on down the pew to shake my hand. It was too brief an encounter for me to say anything meaningful to her about my son's behaviour. I was more rueful than embarassed, really. The book stategy has been in place for a short time & represents many victories on B's part. He's only been able to pick up a book & lose himself in it for about 3 months. Before he could distract himself by reading, the early part of services were often excruciating for all three of us (& unnumbered gentle souls who never said a word...). After the onset of the OCD, B found sitting in rooms full of people nearly impossible due to "thought" triggers like babies or small children, which would cause him to moan & wriggle in distress. C & I would take turns holding him & trying to distract him. You may wonder why we put everyone through this... I guess, for me, it was partly a leap of faith that it wouldn't last forever & partly a need for us to be together as a family & partly pure pigheadedness... Then, one of his Sunday school teachers started asking him to help her with ushering- handing out programmes & taking the collection & this helped a great deal. Somehow, having a purpose & focus really helped B & I bless this friend's creative & unsolicited solution to his distress. When this friend joined the choir & stopped ushering things were tough for a little while, then the reading kicked-in & B's been much more comfortable & functional in church since then.

Back to hanging a sign around his neck, though... upon reflection, it seemed an odd impulse, particularly in light of the spectacular tics my kid is capable of producing- there is no way anybody can assume that he's "normal" after seeing one of those. It brought to mind something that happened over the holidays. During the intergenerational service the Sunday before Christmas, some kids were drafted to hold up cards representing the "12 Days of Christmas" in front of the congregation. After the service, an occasional attender remarked to me in passing that she thought it odd that my son was holding his card away from the congregation, with his back to everybody. Although the whole encounter passed before I could say anything in reply, I must of had a strange look on my face after she said this. I remember telling C how strange I'd thought her remark... The denouement didn't occur until just a couple weeks ago, when I mentioned in Joys & Concerns (part of our regular Sunday service where anyone can briefly share a joy or sorrow with the whole congregation) that I was blogging about B & our experiences raising a child with autism & finding it very helpful. This same woman approached me after the service & apologised for her earlier remark, explaining that she hadn't realised B was autistic. It was a very kind thing for her to do. It made me realise that, as open as we are at church about B & his struggles (& triumphs!), I can't just assume that everyone knows what's going on with him. It's also made me realise how lucky we are to have this larger, extended family in which to be open about B, where we can find strategies for coping in public with our kid with very little risk, & where we can find a sense of comfort with our being an "alternative" family. So I guess my wishing I could hang a sign on B wasn't so weird after all, in light of the loving community we've found in our church. It's not such a wild dream to imagine B as an adult member of this, or any, congregation, giving back the love & acceptance he has learned while growing up in such a place. To all of you (you know who you are!) who may read this- many thanks!!!

Saturday, February 04, 2006

Three poems...

We are in the midst of a very busy weekend- it's birthday week chez nous (C is Monday, I'm Tuesday & Grammie is next Sunday!) & many birthday projects are being finalised :) This is the first year B has played a big role in our bday preparations (he & dad baked "secret" cookies this afternoon, & then B finished his weaving project for dad, using the handsupn yarn we made, while I read to him). In light of all this busyness I haven't had the energy to focus much on blogging (but I am keeping a sticky file of my ideas, due to a suggestion from my friend Nancy- thanks!). I was tidying-up yesterday & came across three poems that I wrote when B was a baby, & I thought I'd share them :)

B at Five Months

two tiny starfish hands
a school of two small feet
seeming aimless
until the unsuspecting prey
-finger, toy, braid-
fall within their scope
pulled relentlessly
into the soft, anemone mouth


tiny child
makes sweet, soft sounds
coos & burbles
sometimes vulgar
but always precious

may they still be-
when the downy cheek
turns to long-awaited bristle
and the pitch edges toward bass
-so precious

Part-time Job

A baby's feet
are employed full-time
but only part-time as feet.

How do they spend their
moonlighting hours?

Mesmerising mobile,
Chase & catch toy,
An extra set of hands!
Levers to be pulled (result unknown).
Exclamation points!!!
Percussion instruments...

Learning to walk may be a baby's
most amazing feat,
but there is a price.

Thursday, February 02, 2006

My time or yours?

One of the biggest struggles in raising a high-needs child is allotting time for each of us to get our needs met. You'd think that when said child starts school it would get easier, & it does... somewhat. But what I've found is that days when B is not in school- weekends, school breaks- tend to be easier on both of us. I think it's because the home-time on schooldays is often very intense. We have a specific amount of time in the morning to get dressed, eat, & (if B does well) play a bit before hopping in the car. I try to keep this time pretty rigid routine-wise because he functions better without surprises. The after school routine starts out pretty regular, too, with snack & homework leading off. Because the pre-dinner hours tend to be very difficult for B we try to get anything essential done right after school. Some days, like today, B sees his psychiatrist or psychologist, which pushes the routine closer to dinner time, but B seems to handle this pretty well because the time is structured. Other days B either finishes his homework & rushes off to do something he's been waiting to do all day, in which case I don't see him again until dinner time, or is low-energy & just wants to watch TV. TV watching time has been a tradition since B was in kindergarten. He has never been very good at self-regulating, & ever since B gave up naps (just a few weeks after his 4th birthday) he's needed "forced-downtime" in order to make it through the day without melting down completely. So I got in the habit of sitting down with him to watch tv somewhere around 4:00 pm, even calling him in from playing outside, for TV time (although it made me feel like the "mom from hell"). Once B was settled in front of PBS or a dvd/tape I could usually slip out to get dinner ready. Over time B has needed me less & less during TV time, although I still always watch new shows with him, in case he has questions or something is scary.

Some days, though, after school time is not quite so simple. Once the OCD symptoms began, B's needs for downtime became much more variable. B also started to need me more than he had for quite a while. Sometimes he'll be in the middle of a lego or other project & ask for me to come sit with him because "he can think better" when I'm there. I've come to believe that C's or my presence can help B keep the OCD thoughts at bay somewhat, especially when he's low-energy or in the pre-dinner state of mind. All of this leads to rather a dilemma for me- what can I plan to do after school? I do try to get any of my essential stuff done while B is in school, since it's only reasonable & logical. I'll be honest & say that I don't always get my needs met while he's at school **sigh** For example, today I didn't get the sewing done that I meant to do, but I did make up for it by not only ordering our birthday cake (C & I have birthdays coming up next week), but while I was in a phone mood, I also made an eye appointment for me (because i think I need new bifocals-again) & the orthodontists appointment for B that I've been meaning to make for at least a month. We can't help but have a clash of competing needs some days ... on the days B really needs me to be in the same room as he is all afternoon & into dinner-making time... on the afternoons where I need to start dinner earlier than usual... on the days when he wants me to play games with him but I'm too emotionally exhausted to have patience with games... or when he has a cool idea but needs my help to realise it. Then, there are the days when I have some energy & he absolutely doesn't need or want me around... for a while. And just as I get into a project he comes in & wants attention/intervention. Some afternoons I find myself hanging around the house waiting for the summons that doesn't come. When I am in a good state of mind, I try to have little projects in mind to keep me busy & out of trouble :)

Sometimes I wonder if parents with kids without special needs face this too. I know my neighbour is sometimes driven to distraction by her non-disabled son's aversion to doing homework (but she has two younger kids as well to add into the mix). I certainly feel bad when B needs me & my heart just isn't into the game or project he wants to do. I have friends who seem to spend every possible moment at their kids' beck & call, which leads me to wonder when they get their needs met... My head tells me that it's good for B to see the human being his mom is, & to understand that she has limitations too, just like everybody on this earth. I do enjoy a lot of our time together, & I it hate when I push myself to do what he wants, but my heart isn't into it & I'm a sourpuss as a result. In those situations I try to explain my parameters to him (time- or energy-wise) & then we brainstorm solutions. Maybe we do one thing he wants to do & then I get a break. Maybe we decide to watch TV together until I have to cook. Maybe we agree that we'll do something together after dinner instead. When he needs me in the room with him it can be difficult, but we can fall back on TV time (especially if we can agree on what to watch :). My hope is that he's getting a realistic sense of the give & take of life & living with others, so that he'll find it easier to to live & adapt to living with others someday (although he says he's either going to spend the rest of his life living with us or get his own apartment across the street :). Although I feel some guilt about it, perhaps my less-than-perfect ability to accomodate his every need will also help him become a bit more resourceful, too. What I've especially learned is that, if I take care of myself & make sure I have enough time to myself, I don't begrudge the times when B is in crisis & really needs me. So... for now, I have a bunch of little otedama (Japanese bean-bags) cut out & ready for hand-stitching on the afternoons when B doesn't seem to need me. Right now, he's upstairs racing his new spybot around his room & perhaps he'll be happy doing that till dinner time, but if not, I think I'm prepared... this time.

Wednesday, February 01, 2006

Settling back into routine...

I'm happy to report that things are returning to "normal" (our standard for normal, anyway :) at our house. The extra 25 mg. of seroquel has done the trick once again. School folks are reporting that B is "twitchier" than usual- Tourettes-type tics more than the OCD ones (B seems to have 2 very different tic manifestations)- but have observed that he's not nearly as sensitive to his regular OCD triggers as he'd been since returning from holiday break. What I've noticed (other than the lack of depression/severe meltdown) is the return of his ability to focus intensely on his own non-OCD thoughts, accompanied by his being able to verbalise much more effectively when he needs help & what kind of help he needs. This is a great relief to all of us- particularly since I'm still recovering from the stress of this past weekend & am more tired than usual=somewhat less patient than my "normal". One of the results of return of B's focus is that he was able to turn a big disappointment into a creative project yesterday...

B was cruising the lego site & found screencaps of the new Exo-Force game (which our Mac doesn't support). He started to descend into angry sadness over the situation, while I reminded him that he has to learn to prepare himself for these feelings if he's going to go to that site. The he said, "I'm gonna show them! I'll make my own game...... wanna help mom?" Did I mention my lower than usual energy? **sigh** I suggested that he might base his game on the Oriental Expedition game that lego included with that series of legos a few years ago, sort of a card-based RPG using the legos & a board for moving minifigures. He got right to work designing cards on the computer. I wandered in to see how he was doing & he showed me 5 files of cards he'd designed. We chatted about the goal of the game, & he decided base it on the Exo-Force storyline of collecting energy stones containing info to help the good guys. I thought the cards would look cooler if we printed them with a pattern on the back, like in a real game, & went get the cardstock from my bookbinding supplies so we could try it out (I think this was the point of no return for me- I was so into the project now :). They looked really neat! We decided to print out simple grids on the cardstock for the game board, & then thought about obstacles to the players that could be placed on the board. By the time I had to make dinner, he was happily designing hazard tokens. We told dad about the game during dinner & began thinking about how to determine the outcome of encounters between the good guys & bad guys... I found myself discussing the relative strengths & weaknesses of the various legos (he may not have all of them yet but has memories all of the specs from the site of course :), which are mostly weapon-laden robots. Being a committed pacifist, married to a CO, I found this a bit surreal, but from a pure strategy point of view it was interesting. After dinner, while B & dad worked on making a file for the game rules (so far,) I cut out cards & tokens. B had found a "kit" of downloadable images at the lego site & designed the good & bad guys' home bases- very cool looking. I suspect that with a few play-throughs we'll be able to nail down the exact dice rolls that make for a fun & playable game. Even if he gets distracted by other things & doesn't finish the game, the activity of yesterday afternoon & evening signal a welcome return to enjoyable family life. B was happily tired by reading time last night & when C came down he told me not to bother going up for a kiss- B had fallen asleep while he was reading! :)