Friday, March 31, 2006

Birthday weekend...

There are 22-ish hours & counting until B's birthday party! C & I worked together last evening writing coded messages of many sorts (evil laugh). Today I went to the party store to get supplies- last year I just went with all black, but this time they had "super spy" themed stuff which I just couldn't resist. They even had fake mustaches, which will be fab because we're going to make the spy operatives put on disguises every time they leave spy base (B's room) to go on missions :) :) I am going to wander the house with a camera & laugh all afternoon! Although it hasn't been nearly as intense a process as last years' party, I think this years will be as much fun, if not more, because B has been involved with as much of the planning as possible. He even came up with the crucial point of the spy operation- he's going to disappear & the kids will have to find him (hee hee!). I arranged for him to sneak over to a neighbour's house during one of their "spy operations", & we'll have clues for finding him. It should be a blast :)

The timing couldn't be better, because we're finally seeing the results of raising B's zoloft dosage 2 1/2 weeks ago. He hasn't gotten stuck in days, nor has he been hitting his head on things. He's more focused in the morning getting ready for school & today he shocked me by getting dressed before I did! He's been doing well at school, too, although today was a trial because tomorrow & the birthday events are so close... B's been taking wonderful advantage of the taste of Spring we've been getting in the northeast US the past few days, too. He & dad got the bikes out on Wednesday & they were out riding for nearly an hour. B had trouble remembering what to do- he stopped riding about mid-last-summer, so hasn't been on his bike since July. C was worried that he'd outgrown his bike, but being bigger is actually making getting on & off much easier for him. He gave-up on it last summer because he fell off every time he dismounted & half the time he attempted to get on the bike. Motor-planning issues make it difficult for B to remember how to do physical things until he's done them many, many times. The fact that everything's coming together bike-wise is so heartening... because it turns out that he's gained 8 lbs. in the past 2 months :( ...even with adding twice-weekly swimming to our efforts to watch what he's eating (not that he overeats, just makeing sure he's eating healthy, non-fatty stuff...). I was so bummed when Dr. B, his psychiatrist, weighed him last Tuesday. I didn't want to talk about the weight gain in front of B, so C called her back & they talked about when we need to get worried about the rate of gain & what the alternatives are. We are committed to keeping him off anything that's more dangerous than seroquel, but she seemed to think that were other, relatively safe drug options to try, if necessary. But not until school is over!! The main thing right now is that he's enjoying life a lot more than he was, even a few days ago. This morning while I was brushing my teeth before school I heard him making troubled noises in his room & was able to talk him back to earth through the bathroom door, which was amazing. I had been worried that he might have trouble with the excitement of his birthday & party tomorrow, but I'm feeling much more confident now about his ability to cope. Hooray!

Sooo... think of us tomorrow afternoon, with 7 spy kids prowling the house for clues & spy gear (& their missing "chief" hee hee). We have a few adult friends coming over too, to join in the fun (plus the cake :) & keep us sane :) "See" you all when it's over!

Wednesday, March 29, 2006

Approaching acceptance...

The contrast between Estee's recent posts "Awakenings" & "Open Arms" at Joy of Autism ( & Mom to Mr. Handsome's "Face in the Crowd" post at Autism: Ready, Set, Go! ( has got me thinking about my own journey to acceptance of my child & who he is. I resonate to the sadness of those parents who are still reeling from their child's diagnosis, their fears, their worlds being turned upside-down... but from rather a different perspective. I was fortunate to have been reminiscing recently with a long-time friend (& 1/2 of the couple that would be B's legal guardians if anything happened to C & I) about what things were like when B was in the process of receiving his diagnoses. Her memory is that C & I were in shock for a while- kind of going through the motions while focusing on the enormous amount we had to learn & do to get B in "the system" (for special ed. services at school, therapies, etc). This comment brought be vivdily back to that summer when "the dominoes began to fall" (see my "History pt. 4" post for the details). What I think put us the most in shock was not B's diagnoses per se, but the readjustment of our expectations (this kid was going to need more than the usual kindergartener, for sure) combined with the huge amount of info we had to assimilate in order to best advocate for him. I remember taking B for his first evaluation, with an OT, & how I fought not to shut-down when she estimated that my 5-year old was functioning at the physical level of a 2 1/2-year-old. Because I had been trained as a PT aide, I understood exactly what she was saying, & I knew the news was not good... The shock intensified as B continued to be evaluated & was found to be severely developmentally delayed... When they finally got around to doing the psychological & academic evals. things got less desperate- B tested as very bright & verbally way above his peers, although he was not able to recognise visual cues like letters or shapes (which led to our discovery of his severe visual/perceptual difficulties). Navigating the labyrinthine school system was daunting, but it was essential to getting him the help he needed, so we learned. It was essential. I sometimes think of this as the beginning of our time as "parents exponential", since B's needs have expanded as he's gotten older, rather than, as I observe in other families we know, his gaining increasing independance.

When I think about being in shock that summer, it feels very much like a mix of "things are not going to be the way we imagined for our kid" & being overwhelmed by the learning & growing being required of us... When we finally got to B's first CSE (Committee on Special Education) that would determine whether or not he was eligible for services for his developmental delays, there was no question that he was eligible- but at this point not one word had been said about Aspergers or autism... that diagnosis didn't come for another year, so we had a great deal of time to get used to B being "different" before tweaking our adjustment to include his AS diagnosis. In fact, by the time he got the diagnosis, C & I had done so much research that we already comfortable with this "label" for our kid. It fit him perfectly, actually, in all it's & his quirky glory.

So, why were we so comfortable with our child's AS diagnosis? Are we freaks, bad parents, outcastes of society? Why wasn't this the end of the world for us? We could see how painful it was for B to interact with peers, dealt with his melt-downs from sensory overload, had to work like mad to find the proper school environment so that he could get the education he needed &, even more important, have his emotional needs met. What was "wrong" with us that we didn't choose to fight B's diagnosis/disorder?

Of course, there's no one factor that brought us to our perspective on B. Probably first & foremost, we have always chosen to work "with" B rather than "against" him, whether it be choosing not to "Ferberise" him as a colicky infant but to night-parent him instead, or finding ways to gently intervene with self-injurious perseverative behaviours (& not intervening with the ones that aren't- choose your battles, we always say :). Another factor is that we had friends raising a son with AS, before it was in the DSM-IV & school services were available, & had seen their son grow & blossom in their care into the lovely young man he is today (now a good friend in his own right & mentor to B). I think another factor was a combination of being "older" parents who were already bucking the system by having their first child when most of their friends/peers had kids in high school & college. This also made B that much more precious to us, that he was our "one & only" shot at parenthood. Perhaps another important aspect of our coming to acceptance of B's autism is that we are not fully engaged with popular culture. We do not have cable tv, do not get the daily paper, we avoid the mega-expensive "toys" that some of our friends take for granted. We try to consciously distinguish between what we "need" & what we "want". We are as active as possible in social justice organisations & are active in our church community as a way of reaching out to the world at large. So we have a somewhat "alternative" lifestyle to begin with... An additional factor for me was not only having spent most of my teen years working with (& adoring them in every way) developmentally disabled children, which made me acutely aware of the family dysfunction that can arise when a family is faced with a disabled child, but also spent time in a wheelchair myself from the ages of 18-25 (see my "History pt. 1" post for more info) & was fully involved in the disabled rights movement back in the late 70's & early 80's. So it wasn't much of a stretch to see my own child's differently-abledness as not something to mourn but something to understand.

I think one of the hardest decisions a parent must make, when faced with how much intervention to provide their child- with any sort of "disability"- is what is enough. I was challenged to think about this when reading blogs of other parents & of all the far-flung destinations travelled for remediation, all of the medical & behavioural interventions tried... I asked C one evening why we hadn't gone to such lengths to find help for B. We talked about the assistance we've gotten so far & how pleased we are with the "village" supporting us... but I think that it goes deeper that that. Ii think that we were never driven to expreme measures to remediate our son because we have always been able to see him in the midst of diagnoses, therapy sessions, even meltdowns. And, essentially, he is fine. His quality of life is enhanced greatly by the things he's learned in PT & OT, speech & vision therapy & to imagine that accepting one's child means "doing nothing" is pure rot (I'm sorry, I read this comment on another blog & it pushed my buttons big-time :). But B is still B... Accepting him for who he is, embracing his neurological differentness, loving my child because is has AS seems very natural to me. To abhor the "magic pill" that would "cure" him also feels natural- I would never mess with my kid's essential nature. That would be disrespect to the worst possible degree. And part of how we show respect to B is to educate him about his diagnoses. He can explain AS, Tourettes, & OCD to anyone who asks, & has interesting insights as to how they affect his life. Perhaps it is because we have pulled-back from popular culture & don't subscribe to society's standards for perfection (& actively try to subvert them when we can :) that we can say that, for example, whether or not he easily interacts with others is less important to us than whether or not he is happy. In other words, while we encourage him to be social & expect him to be at least polite to others, we do not push him. We follow his lead. Interestingly, he is doing beautifully with his social interactions at school these days. His speech therapist has been delighted by the ease of his interactions (part of her therapy time with him is "push-in" to help him with socialisation). He's really excited about his birthday party this weekend & thinks a lot about what activities would be fun for the kids who'll be there. The main times he has trouble is when the OCD kicks-in... & the fact of our lives is that that's B's biggest "handicap" these days. Not AS, not Tourettes, but OCD. Perhaps it's because I see the negative effect of the OCD on B's life that I can look at autism through much rosier glasses. Life was much easier for him & us when he was "just" autistic... but the fact is that OCD can be part of the spectrum as well, & we are working very hard with him to help him reclaim his pre-OCD life. It will take time- but we have faith.

So, this is how we have come to a sense of acceptance of B's autism. It doesn't happen overnight, nor does it happen without deep examination of our expecatations of life, our lifestyles, & ourselves. But I believe it is the most respectful way that we can regard our children. Perhaps the best healing from the shock of having autism enter our lives is to find the essence of our child & love that essence, whatever life may bring.

Tuesday, March 28, 2006

What would Qui Gon do...?

I was driving home from my therapy appointment this morning when this question popped into my head... Jedi spend years of their lives training themselves to become a Force for good in the universe. What we see them doing in the movies, though, is coping with emergencies- big, splashy, special-effect-type emergencies where they can use their lightsabres to defeat the droids & their wits to survive. We do not see them coping with day-by-day, energy-draining, soul-wrenching, low-level crises. Presumably, they are trained to cope with these, too... but how?

I have become very aware of how B's present long-term crisis is affecting my health & state of mind. I am seeing how my own feelings are a factor in how I try to help him when he's in crisis, & how they sometimes hinder me & him as we're trying to cope. I know that my feelings are what allow me to be tuned-in to his moods, sensitive to what might turn a melt-down around & help him to recover, but I am also feeling tired & frustrated, & these negative emotions are not helping at all. The way things stand right now, B can be doing beautifully- fully engaged with life & happy, like when he performed in his class play last Saturday (he was fabulous! :)- & then an OCD thought will hit him & literally knock him down. Sometimes he asks us to kill him because the thought is too terrible (it's so hard to hear your child saying such things!)... I hold him, talk to him, give him images to use against the thought, wait for the thought to subside... eventually he comes back, a little shaky, & re-engages in life. This can happen any time of day, out of the blue, at school or at home. When it happens at school I go there if it's bad & he needs me, sometimes I can get him functioning there again, sometimes I bring him home with me. I am feeling such wear & tear on my soul these days... at times I use my frustration creatively. This morning when B started whacking his head against a door because of a thought, I was able to shock him out of it by yelling at him. I told him that I understand that he needs to do something when the thoughts hit, but I will never support him hurting himself, that he needs to find something else to do... he responded angrily that it isn't easy to find something else, & I countered that we're not choosing the easy things to do anyway... we both cooled-down pretty quickly, & he did stop whacking his head... & when I mentioned this interchange to my therapist she seemed to think it was appropriate parenting. I know that my frustration is getting in the way, too, though. I know I tend to snap at him when he's having trouble transitioning into dinner time (dinner time has always been the "witching hour" at our house anyway)- C usually has to referee & I end up feeling like a surly kid myself. At my therapy appointment we talked about how I'm taking care of myself so that I can better care for my family...

I have been seeing a new chiropracter for back pain & that's felt deeply therapeutic on many levels. I have been making some herbal remedies, too, which I haven't found time to do in a long time. Back when B was a baby I did a lot with herbs & other complementary medicinals, but haven't done anything since B developed the OCD- there's been no time. I made 3 anti-inflammatory tinctures that I've had success with in the past, over the past couple of days, & have been looking into supplementing with herb teas, too. I found a couple of crystal bracelets that I made a few years ago to help with back/inflammation healing (using Diane Stein's "Women's Book of Healing" as a resource). Whether or not one believes in these methods, just taking the time to do this for myself has in itself been healing. Giving myself time to "veg" (read manga, watch a video) during the day & not constantly have to be doing useful things has also helped. Trying to be in bed before midnight is also a goal presently, since I really need the rest.

I have faith that B will settle into his new, pre-adolescent way of being at some point- for a while at least- & things will be calmer. I believe that I will be able to go back to weaving & the other activities that I love which, at the moment, consume too much of my time & attention to be practical. Just as B is discovering new ways of coping, so am I. The hardest part is forgiving my failures & overcoming the fear that I'll do something wrong & hurt someone. I'm doing my best- I try to have faith that it'll be enough. And hope that this is just what Qui Gon would do...

Friday, March 24, 2006

B manga... plus snapshots of today...

As promised, here is the manga B drew for Tomoko, featuring two of his Pokemon creations, Buttox & Crystal Worm :) He drew it in traditional manga sequence, reading from right to left, top to bottom. He asked me to write the Japanese dialogue & sound effects in... Essentially, Buttox is minding his own business (first panel) when surprised by the Crystal Worm popping out of the ground (CW says "don!" which means "tadaaa!" & Buttox says "beeku!" which means "eep!"). Buttox is frightened & begins a "poison fart attack" (it says "kusai", which means "stinky"), which surrounds CW (who also says "kusai"). CW faints from the smell, causing Buttox's heart to pound ("doki"). Then Buttox says "gomen nasai, onarashite!" which means "sorry, I farted"... Tomoko is going to laugh so hard when he gives it to her tomorrow. B begged me to let her tell him how to say "fart" in Japanese last week, & when I agreed, she made sure to teach him the polite form :)

B certainly had a better day at school today, although it began with some fireworks... I was brainstorming some ideas for cutting the energy off from the OCD anxiety with B over breakfast when I said the wrong thing (again) & he freaked. I managed to comfort him & bring him back to earth, & we ended the meal happily sharing more ideas for his birthday party, which was a great relief on all counts, since it's just a week away (beeku!, I mean, eep!). His class was performing their play for the first-floor kids (pre-K- first graders) this morning & he was really looking forward to it.

I had a busy morning, with a visit to my new chiropractor (my back has been bothering me a lot lately). I feel so blessed to finally have found someone who understands my perspective on my physical health. Most of the chiropractic folks I have seen in the past have tried to guilt-trip me into a fitness programme or some kind of activity that turns out to be completely inappropriate for my body's state of health. I am actually quite healthy these days, but have a constant level of inflammation, & therefore intermittent swelling in my joints. I never know from moment to moment if I'm going to suddenly not be able to get up the stairs easily because a knee has gone out on me, & recently my left thumb has been quite swollen, not to mention the sciatic flare-up... I have gone through all of the anti-inflammatory medicines available & either they don't work, give me major side-effects, of were recently taken off the market because they're unsafe :( So, I have found that any sort of fitness regimen is too hard on my body & just gets me hurt. What I try to do is eat a healthy diet, park away from entrances to places so I walk a little extra, & supplement with herbal remedies as I can. I feel like I am taking a balanced approach & finally I found someone who agrees! It's always felt like a catch-22 when I seek help for intermittent flare-ups because the relief of the pain has always been accompanied by increased stress from being told I'm not doing enough to get myself fit & healthy. With times being so intense with B right now, it's doubly a blessing to find someone who supports what I'm doing, & gives me gentle suggestions for taking my own approaches even further- more herbs to try, etc. Strangely enough, taking care of myself like this is also making me feel like I'm taking better care of my family by giving myself some relief from pain & stress. All I can say is it feels like just in time... :)

After the chiropractor I met a friend who is moving apartments & helped her set up her new kitchen, which was fun. Home for lunch, then I messed about with herbs for a bit, making a cold care tea for Cherie, B's consultant teacher, who is coming down with a cold. It hit me this morning that I wish I had more energy to give back to the folks who give B & us so much, so decided that the tea would be a good start.

B had a great day just up until I came to get him. He was looking sullen when I came to get him, coat on & sitting in a beanbag chair in the cozy corner of the special ed. resource room. He just wanted to get out of there, it seems... although he had to wait until I gave Cherie her tea :) When we got home he really wanted to do stuff with me, so I made a deal with him to read more of Terry Pratchett's "Bromeliad trilogy" for a bit & then we would draw for a while. We finished "Truckers" & began "Diggers", then sat down to draw. B wanted me to show him how to make "manga eyes" but turned out not to have any patience for the process of learning to do it. I pointed out that the eyes he draws on his Pokemons are perfect for them & I really like how he does it, so he was content to do his own thing. He drew a new Pokemon while I sketched some (I'm trying to put bodies on my heads these days...) & then he decided he wanted to google Pokemon for more sites to explore. We have a house rule that B has to have an adult with him when he googles (& permission before he downloads anything, too), so I helped him find a site for the Pokeman rpg & left him happily doing the tutorial.

My mom has a sick cat, so she called to say she wouldn't be over for our usual Friday evening family dinner. I decided to make onigiri (rice balls) & practice making tamago (rolled omelette) as a side dish (I definitely need practise...). B decided he wanted onigiri, too (he usually has a bowl of rice) but unfilled... he still hates mixing food. We had a fruit tray with the Japanese food, too. C likes his onigiri with tuna salad in it, & I tried one with a little bit of tamago & one with chopped tsukemono (pickles). Mmmm....

After dinner B had his bath, with dad presiding, then we had a fire in the fireplace. B was narrating the habits of his mole-rat Pokemon & told me that it has arthritis like I do & hops in a sock to keep warm. It uses a hat that's been tacked to the ground as a tent, too :) I wondered out loud if he might imagine the OCD anxiety being stuffed in a mitten & talking in a muffled voice, which made him giggle (I said something right!!!). Then we read more Bromeliads & off to bed...

We give Tomoko her manga in the morning & I'm looking forward to that very much. Tomorrow afternoon is the play! B decided that he wants Rufus, usually clasped under B's arm, to sit with me & help me take pictures of the play. Afterward C is hoping that they can go swimming, to take the edge off any over-excitement. Sunday will be busy, too, with church, & then our nearly 16-year-old goddaughter is coming over to learn to make onigiri & talk Fruits Basket (a manga that features onigiri :) & watch the new FB dvd I got (she & I are both mad for Furuba). Then we are having a good friend from out of town to dinner. So, another busy weekend that will go by in a flash. But the play is tomorrow! I can't wait... :)

Thursday, March 23, 2006


The excitement this morning at school was dress rehearsal of the 3rd/4th grade school plays. The plays are held in a small community theatre space about 2 blocks from school, so they were getting ready to truck all of their stuff down there... When I left B this morning he was dressed in the flannel shirt, chenille bathrobe, & cowboy hat that make up most of his costume (we're saving the new "blue-jean"-type pants for the day of the play, so he had his usual cargoes on :). The get-up was hilarious. I just can't wait to see the play!

I spent the morning grocery shopping, doing laundry, & finally found some time to work on B's birthday party activities. I snagged a bunch of B's code books & was making notes when, around 12:30, the phone rang. It was Cherie, B's consultant teacher, calling to say that B had had a fabulous rehearsal but got "stuck" while watching the other 3rd/4th grade class doing their rehearsal... they had managed to get him back to school by driving him, but he couldn't go upstairs to his classroom. Cherie asked B if he could go up to talk to me on the phone, but he couldn't, so I went over. When I got there B was sitting at a table, all hunched over, with his face red & contorted. I pulled a chair very close & hugged him. He relaxed briefly & agreed to have Cherie bring his lunch down (by this time it was nearly 1:00 pm & neither of us had eaten), but the minute he saw his lunch he tried to hit his head on the table & started to cry & moan. We've learned that we can't ask him what's wrong, or what the thought is because it just makes things worse. He tried to throw himself on the floor, but I got him back into the chair because I feel like he's closer to being "in control" if he's not on the floor... I asked him if we could do anything to take the power away from the thought (per Dr. M's recommendations yesterday) but that sent B into hysterics, saying that it would kill someone to do that (essentially). He kept moaning & gagging (really scary) & snot was running out of his nose, which was making him even more uncomfortable. He kept saying it was hopeless & that I wasn't listening to him, that I wasn't being open-minded to the possibility that there's entropy in the world. I countered that I thought he wasn't being open-minded to the possibility that there was hope, & that there was something that could help him... After about 20 minutes, I suggested we go home. He stopped moaning, but was upset that he might miss the afternoon work, so I pointed out that he wasn't going to get much work done while he was so upset. All this while Cherie sat quietly with us, close on the other side of him. She offered to get his coat & backpack, & fortunately my counterpoint convinced him we should go, so Cherie helped us out to the car.

B's class was outside playing & it made him cry to see them, but we got him in the car & he was able to buckle his seat belt by himself. On the way home he calmed down considerably, & although he wasn't yet ready to consider what we should do for the afternoon (he kept tearfully rejecting all of my ideas for distraction... sigh), he was able to talk about lunch options... He also told me that I can't use the "P" word ("power") when talking about taking the "power" from the anxiety & worries, so we agreed that I could say "energy" instead. I suggested that he might want to imagine an impenetrable wall between himself & the anxiety, which would cause it to shrink because it couldn't get to him. There was some discussion back & forth about how a wall can't be impenetrable, but I told him that it was his mind & that he set the rules, so he could make the wall as strong as he liked. We decided to have soba noodles with kombu broth for lunch. He wanted to go up to his room & lego while waiting, which was interesting, since he usually needs to be right by me when he's been upset. During our calm (& yummy) lunch, I told B that, although I don't want to ever be disrespectful of him, I will never agree that there is no solution when he's terribly distressed. I mentioned that we were able to help him calm down today, & that my grandmother (whose maiden name is B's middle name) always said "where there's life, there's hope", & I believe this. He told me it was ok to disagree with him, that the "stuck" feeling puts him under terrible pressure & makes things seem hopeless.

After lunch we decided to watch "Sky High" (borrowed from best buddy E) together again, & he's now watching his Pokemon dvd...

Seeing B so out of control today was really scary, but that we were able to talk him down & transition him to a more comfortable place was really comforting. I called & was able to make twice-monthly appointments with Dr. M right up to June, while the noodles were cooking, so I feel as though I've done as much as I concretely can for the moment. Thanks to B's willingness to share, I also have more insight into how best to approach him when he gets so deeply distressed. I'll remember to share the "wall" imagery with Cherie, too, & try to strike the "P" word from my vocabulary (at least around B) & try to find more acceptable words like "energy". I am definitely going to be early tonight... whew!

Wednesday, March 22, 2006

Mom does manga...

This evening I was able to persuade B to begin drawing a manga for Tomoko, our Japanese teacher. She had particularly liked one of his home-made Pokeman, by the name of "Buttox" (yeah, can you tell he's nearly 10....?) & I have been hoping he might feature this character in a manga/cartoon for her. We dreamed-up the story together & B got to work, & since he likes me to be near him when he draws, I decided to draw him drawing :) (that's the picture above). He has Rufus clasped under his arm, as usual. When he saw my picture, B was quite charmed (sigh of relief- you can never tell when he's going to be touchy about personal things these days). He really liked his "manga" eyes :) Then he requested that I draw Rufus doing the "peace" sign that seems so ubiquitous in Japanese photos (even ones portrayed in manga). He loved it, & said I was getting pretty good with my drawing, too :) I will try to remember to take a photo of the finished "Buttox meets Crystal Worm" manga, before he gives it to Tomoko, & post it here.

I shouldn't have been worried about B wanting to resolve yesterday's altercation with his friends. It was the first thing he wanted to talk to Cherie about when he got to school, according to C, who's day off is Wednesday, & who passes-on the day-off to me by taking B to & from school in my stead. There wasn't much time to talk to him directly after school, since he had an appointment to see his psychologist Dr. M, but we were able to get an idea of how it went over dinner. B said that that the other boys had been so caught-up in their "secret plan" (this was the ball-throwing part), that they didn't think about how he might feel about it. B seemed relieved to have cleared the air & be back on good terms with them all. So were C & I!

During B's appointment with Dr. M they talked about the OCD as being caused by anxiety & worry, & Dr. M introduced the idea of "worry warriors" to B... who was not convinced about adopting the concept, but did participate in an exercise identifying potential "worry warriors", such as "farts", jokes, & other distractions that take his mind off of his worries. C (who took B to the appointment- bless him!) said that B also pulled a very funny fast one on Dr. M... I guess B wanted to play with a ball that was out of reach, & was being asked to hold-off until they were finished talking about something else. C said that B glanced out the window & said "hey look, a bluejay!", which caused Dr. M to whirl around (with his back to B) & look out the window. B then grabbed the ball & started playing with it. C said Dr. M just broke up laughing, & appeared very pleased that B was able to "script" a scenario that predicted the behaviour he wanted Dr. M to exhibit- turning his back to him. It sounded hysterical- & just shows what a lovely person B's psychologist is, to be delighted to have been "had" by our kid... :)

Tuesday, March 21, 2006

Four minutes...

It took just four minutes to wreck my kid today. **sigh** B started out the day saying "hooray, we have gym today!"... this is such an incredible turn-around from his previous attitude to gym class that it made my heart sing. B is not the easiest kid to motivate toward physical activity, add to this that he's pretty self-conscious about his awkwardness (due to low muscle tone, proprioceptor difficulties, lingering visual difficulties, & his sensory processing differentness), so it really has been a triumph that he's been enjoying gym class so much. At B's school, beginning in 2nd grade, the kids go to the local YMCA for 10 weeks of swimming & 10 weeks of gym (mostly group tag & that sort of thing) during the winter. The gym portion of this year got off to a bit of a rocky start because the kids weren't getting any free play time at the end of gym class- & they really wanted it. The teachers managed to impress the importance of the free time on the teachers at the Y &, until today, this has been one of B's favourite parts of his time there...

When I arrived at school to pick him up they were just getting off the bus from the Y. B had a scowl on his face & didn't even smile when he saw me pull in. He handed his backpack to his consultant teacher, Cherie, who had gone with them to the gym today, & disappeared inside to get the rest of his stuff... Cherie said that there had been some difficulty at the end of class & B had ended-up screaming in frustration, which caused some of the kids to yell at him (making things worse). She had been watching the class from a window into the gym & hadn't seen anything happen, but it was clear that he was really upset. When B came out of school he brushed by Cherie & wanted to just go home. I suggested we go inside & find out what had happened... I figured that Cherie would be picking up the pieces tomorrow, so should be in on the story. B got very defensive & accused us of talking behind his back, but we got him to agree to go in with us. We only got as far as the stairwell just inside the door when it all came spilling out (loud in that echoey space)- during their precious free time today, all four minutes of it, some of his buddies had ganged-up on him & thrown balls at him, some hitting him in the face. It seemed to have been part of a game they were playing, but B was furious with them. He ranted about people not caring about others' feelings, just because of a stupid game, and accused them of trying to "kill" him when they threw the balls and hit him in the face... I gently explained that getting hit in the face with a ball wouldn't generally kill anyone, but at that moment one of the parties involved came down the stairs on his way out of school. B was still really angry, but I was impressed that he didn't yell at him (he did mutter imprecations, but it was very subtle). Not long after another one came down and observed that B looked upset. B said "I don't want to talk about it now" through gritted teeth, & Cherie assured the boy that they would talk about it tomorrow. Cherie & I both praised B fro being so civil to him, even though he was very angry. We both assured him that he would have a chance to tell these boys how he'd felt about what they'd done tomorrow. B was initially ready to write them off (although I did point out, semi-humourously, that one of them had already accepted the invitation to B's birthday party...) but we reminded him that this was not what people in the Cobblestone community do. We decided to go home then & leave things till tomorrow...

In the car B was still very angry, then erupted in rage & dismay when he realised that he'd forgotten to talk to Cherie about his homework for that afternoon. I made sure I had his attention (calmly asking him to listen to me a few times until he could) then said I was giving him the day off of homework. This really calmed him down, although the rage then turned to tears. How could these friends do this to him? How could they hurt him & not listen to him, all for the sake of a stupid game? Whenever we talk about kids & their behaviour, I refer to them as "super growing people" (since we're all always growing, no matter how old we are). I gently reminded him that growing people of all ages make mistakes, but super growing people sometimes do things like this because they can be thoughtless. They just haven't learned to be thoughtful consistently yet. I also reminded him that these were friends & deserved a second chance. B agreed though his tears, & then said that, when he said that they were killing him, he didn't mean that they were physically killing him, but spiritually. I was rather blown away by this perspective, it was so eloquent, & thanked him for explaining that to me. I suggested that he might want to repeat that to his friends tomorrow, so they'd understand how it felt to him. In trying to comfort B, one thing that I did not bring up was that all of the boys involved are also on the spectrum & have many of the difficulties with socialisation that B does. It's probably inevitable that kids with difficulty reading social situations are going to do insensitive things in the name of fun (certainly kids who are supposedly just "fine" socially do this all the time), & I'm wondering if some of B's outrage comes from knowing that these kids are like him (and he does know- he's had them pegged without any prompting or assistance from us since early on), & his thinking that they should be looking out for one-another. By the time we got home, B had calmed down, & our conversation turned to what to have for snack. I suggested we watch the Fruits Basket dvd that had arrived today, as a nice diversion.

He enjoyed the Fruits Basket very much (so did I :) but he was still touchy all afternoon & evening. When C came home B went out to meet him & spilled the whole story again before they even made it into the house. I don't think I've ever seen him so deeply distraught by on an "incident" like this. The only thing approaching this was when he took an intense dislike to a school friend (who had been a buddy until things went sour) in 2nd grade, over an unresolved issue between them. When B developed the OCD, this boy became a trigger of intrusive thoughts & we really had to work with B on not demonising him, reminding him that, no matter what had happened, this kid was a good person at heart. At the time there was no way for B to face the depth of his anger at this boy & no amount of encouraging would let B see him as anything but bad. It was tough to see him struggle with this situation, & tough to see my sweet kid so hemmed-in by his anger. It took 1 1/2 years, but Cherie (bless her) finally got B to talk to this boy & sort things out & they have been friends ever since (interestingly, what upset B in the first place was that this boy had hurt B's feelings & not acknowledged that any sort of transgression had taken place- was quite oblivious of it). This boy was also one of those involved with today's upset, which was not a surprise to me, really :) Today's experience seemed to have an immediacy & intensity that was different, though.

I found it very heartening that today B agreed, without much coaxing, to sit down with Cherie & the boys tomorrow & talk about what happened. I hope that B follows through & doesn't let his feelings fester like they did the last time. I believe that these boys are good, sweet guys & will be horrified by the effect their game had on B. I really hope that B won't let this incident poison his feelings about gym class, too (arrgh!). The main thing is that I'm so glad that he'll have the chance to face his strong feelings, share them, & have a reasonable chance of being listened-to. It would be great if he can come out of this situation with new skills & understanding of others. Fingers crossed...

Monday, March 20, 2006

B's class play...

At B's school, late winter is play time. All of the classes participate in theatrical productions chosen, adapted, & performed by the kids in each class. The school's director has referred to the emphasis on theatre as their equivalent of team sports- all of the benefits of teamwork without the drawback of heavy, sometimes toxic, competition. I really like this analogy. B is not a sports-oriented kid & considering his difficulties with hypotonia, motor-planning, & sensory integration we don't expect him to be (although we try to find ways for him to be active on his own terms, for the long-term health benefits). In fact I am somewhat relieved that he's not desperate to play team sports. My brother went through hell in his pre-adolescent years because our parents forced him to participate in Little League baseball. He was never a team player & hated baseball. He actually ended-up making a name for himself (in our state at least) in his late teen years as a frisbee freestyler, which was really more his style. The great irony was that I was the more athletic of the two of us & would have really enjoyed Little League, but girls weren't allowed to play back in the late 60's... I learned a lot from my brother's experience, & was ready to support my kid in any sports endeavor, but was also daunted by what I have seen my friends' children go through when participating in heavily competitive team sports. I was not enthusiastic about the idea of dealing with other hyper-competitive parents & all of the politics, & have to decide when to step in if things got too intense... You can see I've thought about it a lot :) In light of my worries, it's fortunate that I married into a sailing family. We bought our own boat when B was 9 weeks old, & joined a racing fleet at the same time. We had B in swimming lessons when he was 18 months old, in anticipation of his first sail with us when he was three, & we bought him his own kid-sized sailboat a few years ago, although he much prefers to sail with dad in our Snipe, which is fine because he can crew for dad when he's older :) There is a great deal of competition in sailing, too, but we have found a wonderfully friendly fleet to race with, & many of the members are like surrogate grandparents to B, so there is absolutely none of the "Little League" feeling about the experience :)

Hmm... seemed to have wandered a bit... back to the play! Although B has participated in each class play since he arrived at Cobblestone in first grade, he didn't really blossom into the "ham" he has become until last year's play. His class adapted a Vietnamese folk tale & he played a "councillor", with a fair number of lines to memorise. Not only did he memorise his own lines in record time, but memorised the whole play & became the official prompter. He played his role so that he never left character when on stage, & didn't seem get distracted or have trouble with tics until the end of the play. It was an eye-opening experience for us, not being "theatre" types ourselves. We had, however, heard from many sources that acting can be a wonderful outlet for a kid with Aspergers, because working with scripts can allow them to try unfamiliar emotional/social situations safely & comfortably. This seems to be the case for B & he is turning into a talented actor. B also seems to have no problem with stage fright. As long as he has a script to follow or song to sing, he is perfectly comfortable getting up in from of hundreds of people & performing- usually with a big grin on his face.

This year his class adapted a musical play about pioneers, since they had just finished a unit on the Oregon Trail, & B was asked to take one of the lead roles, as the "Father" (although he really wanted to play the turkey... :). Since work on the play began B has had a much easier time coping at school, or at least recovers better when the OCD thoughts intrude. His teachers report that he doesn't tic during play time, nor do his usual OCD triggers bother him. It's such a joy to find an activity that brings out the best in B. He enjoys working together with the other kids & helping them, too. He has put a lot of personal touches on his role, & his teacher told me that he does such a good job as the father that it makes her want to go to him for fatherly advice :) From a day-to-day perspective, I just love watching my kid shine, & enjoy something so thoroughly. From a more over-arching perspective, I feel a deep sense of gratitude that my son goes to a school that values him for who he is, not what they expect him to be. He & the other "special needs" kids are not "allowed" to participate, but are integral parts of the school, & it is understood that the school is enriched by their presence. I worry sometimes about finding an equally wonderful place for B when he hits high-school age (his school goes through 8th grade), but fortunately it's not relevant for a few years.

The play is this Saturday afternoon & we are psyched. We have decided to see if we can get B into theatre camp this summer with a friend from his class, too, to keep him active in this activity that allows him to blossom so much. I am anticipating a bit of a let-down for all of us after the play is over, although his birthday is the following week, so that should help keep his spirits up. Hopefully the preparations for the all-school Music Night in May will be enough to fill the gap afterward the play- I hear Rufus will be singing again this year :)

Friday, March 17, 2006

Birthday season has begun...

Well, I did it. I got the birthday invitations in the mail- whew! B's 10th birthday is just 2 weeks away (April 1st) so I just made it within the polite, 2 week notice deadline. It makes me wonder sometimes, how time get's away from me so easily. No wonder I love scifi & manga so much- it happens to those folks all the time...

Birthdays at our house tend to be a strange mix of low-key & very intense. We do not do the "invite every kid in the class" blow-outs at another location (like laserquest or a bowling alley), although I sometimes think wistfully of not having to clean the house before a party... B has only been able to go to big, echo-y places comfortablly for the past couple of years, making the birthday parties of other kids quite problematic at times. One time, when C took B to a bowling-alley party. he had to take him outside & walk with him until cake & ice cream time, because B just couldn't handle being in the place. One year, B's best buddy E invited B over for a separate "party" just for them because B couldn't tolerate the place his party was located (you can see why they've been best friends since preschool :). As of about 1 1/2 years ago B has been able to handle the laserquest thing, although it's very stressful for him. He puts up with it, though, because it's so very cool & spy-ish.

So, the low-key part of our home-grown parties is that there are always less than 10 kids there, including the birthday boy, from school, church, & neighbourhood. We plan the party to last about 3 hours & have cake & ice cream & prezzies as part of the festivities. There are usually at least 3-4 other adults on hand to help out (E's parents are always invited, & Grammie too, when she's in town). B sets a theme ahead of time- this is the intense part- & I make it happen :) The first party in this mode was B's 6th, when we had a Harry Potter theme. We dressed all of the participants as wizards & their goody bags contained the glasses, scar tatoos, & wands, among other wizardly stuff. They played home-made HP games (I drew a big Harry face & we did "pin the scar on Harry") & had a potions lesson using various combos of vinegar & baking soda. The piece de resistance was a quidditch cake- B requested that I dye the icing green- & then I wired his Harry & Malfoy lego minifigs on brooms to look as though they were flying through the air playing quidditch. After that, we had 2 years of science parties, where we dressed them all in lab coats & did experiments, made simple flashlights, used a lemon to power a clock, that sort of stuff, & I used mini Ehrlenmeyer flasks on the cake to hold the candles :) Last year was the most intense- the spy party. I set up an elabourate treasure hunt/spy mission that included locked rooms, secret codes, & lots of alarms that had to be disarmed. My only regret is that I didn't have the camera glued to me as we followed them around the house, because I wished I'd caught the "deer in the headlights" looks on their faces as they tried to get through B's booby-trapped room to disarm all of the alarms. (cue evil laughter... :)

For some reason, I am having a terrible time wrapping my head around this year's party... **sigh** It's another spy scenario, per B's request, & I'm beginning to think I burnt myself out doing last years (heck, I had to flow-chart the treasure-hunt part to get it right...). I am having little luck finding ideas for this years' party. I forced myself to bring it up with C & B repeatedly, over dinners, so that I would be spurred-on by their enthusiasm. C says that I don't have to have it be as over-the-top as last year (although I reminded him that I have standards to uphold...), but my main concern is that B not be disappointed. I did find some inexpensive decoder sets at American Science & Surplus (I loooove that site!) for the goody bags/toolkits & plan to use them as part of the "treasure hunt". It has turned out to be a good thing to include B on the planning- we are seriously considering having him disappear at some point, requiring everyone else to use his spy tracker set (which will be provided after they solve a code) to find him :) He thinks that would be a hoot... I will definitely have harder clues for the participants this year (last year, those that actually co-operated -don't ask- breezed right through them), with extra hints given out right before frustration sets in. We are inviting Paula & Chuk, too, & hoping that Chuk will enjoy participating as an "informent" (specific task to be determined). B is desperate to have his spybots involved somehow, although the "somehow" is eluding us at the moment... The main thing is, the invitations are out! This party's gonna happen no matter what....... & it's a good thing I work well under pressure!!

Thursday, March 16, 2006

Omiyage & onegaishimasu...

These are "omiyage" gift bags (little pouches, really), which I learned to make from Kimuko Sudo's Omiyage book. Many of the bags are made to look like flowers or animals, or can be used as small evening bags. (Interestingly, our Japanese teacher said that, although the tradition is Japanese, these special pouches are more western in flavour & not part of the traditional practise of omiyage.) I love hand-stitching them, particularly from recycled vintage kimono fabrics & I have been making them for at least 5 years. I think I've given away more than I presently have, & although they are gifts in & of themselves, I feel funny giving them away without putting something inside the pouch, in the spirit of omiyage... Omiyage is the Japanese custom of giving "obligation" gifts to people in your life. I have "obligation" in quotes because it's not really the right word to describe the reasons the gifts are given. There is no direct translation in english for omiyage because we do not have this concept in our culture. This is one of the reasons I love learning languages. Getting a deeper sense of how people in other cultures think is endlessly fascinating to me. When Tomoko, our Japanese teacher, introduced us to the phrase onegaishimasu, she explained that there is no direct translation for this idea because it describes a relationship between people that is recognised in Japan, but not in western cultures. She explained that it means (not literally) "thank-you for the good things you will do for me in the future" & that it's used in many situations in Japan, from New Years' greetings (the context of our lesson that day) to beginning a new job. Not long after this lesson B & I started reading the "Hikaru no Go" manga series, & discovered that this phrase is used to begin Go games! When I read manga (translated into english, of course) I can always tell when the character is saying onegaishimasu, even though the transaltions are quite varied& sometimes stilted... In thinking about our discussion of this cultural difference with Tomoko, it seems to me that people in Japan are much more up-front about recognising their interdependance. They live so close together on their small islands (compared to North American people) so they have had to put a much higher value on not only giving people emotional "space" by being very polite but also have formalised their connectedness with onegaishimasu. This reminds me very much of the Unitarian Universalist value for the interdependant web of life, which is one of our Principles & Purposes. The fact that we have to even talk about it (& don't take it for granted) says a great deal about our culture, I think. We seem to value the cowboy loner much more highly than our connections to other people- & I think this explains a great many of our failures as a society. I am not saying that we are failures in comaprison to Japanese society, mostly because I don't know enough about it yet, & because what I do know leads me to believe that Japan has their problems too... What I am saying is that our tendency to either ignore, hide, or be embarassed by our deep connexions to other people is not a good thing. I also believe that deep connexions are not the same as dependancy. To understand that my life would not be as wonderful without my husband & child, not to mention my friends, or that I would not do as well personally (or with child-raising) without my husband, does not make me dependant on them in a bad way. So I resonate to the Japanese concept of onegaishimasu very much. Taken in this context, the idea of omiyage gifts is also lifted out of the "obligation" category, & into "recognition" (to my mind, at least). I like the idea of recognising those who give us so much by giving them gifts. Perhaps many families can recognise this custom in the gifts they bring back for family & friends when they go away on vacation- we certainly do it. We also like to make sure B's teachers & helpers at school get small gifts on holidays like Valentines Day, & I try very hard to make sure that they have hand-made gifts for Christmas & end-of-the-year parting, since the hand-made part seems to recognise how they have helped to hand-make my child's school experience :) from their hearts.

One of the things that got me thinking about this today was that I always bring B home a little treat when I do my once-weekly grocery shopping (like today). I think it evolved from our practice of allowing him to choose one thing at the grocery store to buy for himself when he has to go there with me... he has a fair amount of anxiety in crowded, busy places, but when he thinks about what he's going to buy, it distracts him from a lot of the anxiety & sometimes even makes him look forward to going... Every week I bring him something, usually candy-ish gum of a new & different sort (B can't have artificial sweeteners so it's sugary, too) as a treat for after school. I had been thinking alot about the appropriateness of this though, in light of trying to keep his weight under control, & also from the perspective of not wanting him to take these treats "for granted". I have batted this whole thing back & forth in my head & come up with some rationalisations... & a new way of thinking about it. First of all, although candy is not banned in our home (that would kill me, probably :) we only have it in the context of mealtimes, to protect everyone's teeth (I was a dental researcher, after all). We have banned fatty snacks except on special occasions, & we're all better for it, but it's been very hard on B since he's really a salt-snack kind of a guy... Also, gum-chewing is a major soother for B, & from my research days I know that if he chews for at least 10-15 minutes, he's washed all of the sugar out of his mouth (there's abundant research that proves this), so sugary gum really isn't bad for him from a dental-health point of view. We have also never seen any sign of B getting "wired" or having behavioural changes due to sugar consumption (believe me, we've looked...) & recent research supports our observations, so that rationalisation for cutting out the special treats goes bye-bye as well. As for taking these weekly treats for granted... when I think of them as omiyage I find myself lightening-up even on this point. Why not thank my kid regularly for being such an important part of my life? Oh, yeah, I thank him in many other ways, both concrete & non-, but these ways are often contextual & random. A weekly treat from the grocery store is steady & predictable (things kids on the spectrum love & need) & does him no harm- it may actually do us both some good. :)

Tuesday, March 14, 2006

"A walk in the park (with a lollipop)"...

The past couple of days have been very stressful... B has been having more & more difficulty with anxiety over the past week or so & yesterday it finally hit the fan. It was one of those days where I felt as though I was making it all up as I went, & nothing was working more than once... one of those days that seriously tested my faith in myself as a mother... & at one point I realised that nobody that has much invested in their own pride, or in being right all of the time, should become a parent because all I seemed to say to B all day was "I'm sorry"... The anxiety was causing him to have random "thoughts" that were either unpleasant or scary (he couldn't say much about them) & there wasn't much that could distract him. He would just freeze-up, shaking, or drop to the floor & sit there crying, or -worst of all- bang his head on any hard surface nearby, & very little that I could say helped... he sat down to eat breakfast & then a "thought" caught him & he just froze & couldn't even pick up his hashi (he was having rice). I tried having him go back upstairs again & start over, but nothing worked. He finally dropped to the floor, but I couldn't help him much down there so I lifted him up (unfortunately my sciatic nerve has been acting-up big-time lately, so it really hurt to lift him *sigh*) & got us to a chair so he could sit in my lap & at leat be hugged. After a few minutes, miraculously, he lifted his head & started talking about Pokeman... he managed to sit in his own chair & eat & I even got him to school. He was pretty upset that my back hurt when I picked him up, but luckily he'd recently watched "Return of the Jedi" again, so I could explain to him that, just like Luke was willing to fight Vader to protect Leia, I was willing to risk my back so that he could feel better- that's what people do when they love each other. He seemed to get it...

School went very well (these days it seems to be the best distraction for him), right up to about an hour before the end of the day, when he lost touch with his body again (he's doing this a lot lately) & didn't get to the bathroom on time. When his consultant teacher, Cherie, brought his spare boxers to him, a "thought" made him reject them, so she called me & asked if I'd bring another pair... I had spent the day doing laundry & trying to recover my energy (I really had wanted to blog, but was so numb & muddled that all I could do was bury myself in manga, which really helped) but the call was not unexpected. I ran over to school, but he was pretty distraught by the time I got there... he got dressed all right, but bumped his arm on the bathroom stall lock on the way out & it hurt so much I could practically feel it... Cherie got him an ice pack, then gathered his things for him & I took him home. He was so lost... did his homework & ate his snack, but he wasn't interested in watching a movie or playing with legos... (I had been madly hoping that the "Howl's Moving Castle" dvd would arrive in the mail from Amazon- it was supposed to have arrived last week- but it didn't, grrrr...). He finally settled on playing internet games, but was finding them frustrating, too. I was still pretty low-energy, so not at my diverting best... he finally spiralled back down right before I started to make dinner. I caught him whacking his head on the table & offered him every diversion I could think of. He started to cry & asked for tylenol because he had a headache (head-banging will do that, but it still scared me because he never, ever complains of headaches). He rejected the idea of putting some music on, putting a dvd in the laptop so he could watch it in the kitchen while I made dinner, playing more games on the computer... he just sat & cried. I asked him if he thought he might be able to eat dinner. He said that there was a 96% chance that he'd be able to... so I decided that I could leave him (I had been hugging him for comfort & to prevent the head-banging) long enough to cook. I made buttermilk pancakes, with a bit of whole-wheat flour for flavour & melted butter instead of oil, because I wanted them to be extra-yummy. At some point, B got up & just started conversing normally with me (talking with my therapist today, she wondered if it wasn't the smell of the pancakes that did it... I am keeping this in mind for the future...). I asked him if I was making things more difficult for him, when I tried to divert him. He told me that the only parts that make it harder are when I ask him what the thoughts are- he just can't articulate them, so that was very good for me to know. Then I asked him if, compared to the OCD, having Aspergers was like a walk in the park with a lollipop- he actually laughed & said "oh, yeah!... & compared to the OCD, having Tourettes is practically nothing... I'd dump the OCD in a minute..."! It was amazing. He did not sound like a kid right then, he sounded like another adult, just for those few moments. When I shared this conversation with my therapist, she said she suspected that it was a very therapeutic for him to share those feelings. It certainly confirmed my sense that the OCD is the biggest obstacle to B's quality of life, & perhaps helped him to feel that we understand this.

The rest of the evening went pretty well for B, although I was absolutely wiped-out. C came home to a kitchen full of pancake-aroma & we all really enjoyed dinner :) Then they played a game, & after jammies, B watched some "Robots" (his best buddy lent him the dvd), which makes him giggle so hard he can barely breathe at times, then storytime & to sleep. C & I did quite a lot of processing after B was asleep... I did quite a lot of crying, too. When we looked at the recent patterns of behaviour, it was clear that B has probably outgrown his dose of zoloft, which is what is keeping the OCD anxiety in check. B weighed-in at 110 lbs in February, & we haven't upped the zoloft (I just checked) since mid-October! He has gained at least 15 lbs. since then... so it really makes sense that he's not got enough in his system to damp-down the anxiety sufficiently. We also decided to ask Dr. M, B's psychologist, to see him twice-monthly (we usually go once a month) until the end of the school year. Getting more of the cognitive/behavioural therapy for the OCD might be a big help right now... we also decided to ask Cherie if she'd remind B to go to the bathroom sometime around lunchtime, so that he would be less likely to have an accident in the afternoon (she was happy to agree to do this). The processing helped to ground me, so that I was able to finally relax enough to go to sleep myself (even though I was wiped-out, the stress sometimes revs me up).

This morning went much better. I was ready to explain to B why he had an extra half-a-pill to take with breakfast but he didn't even notice... After dropping B off at school & hanging out in Paula's room for a bit, I saw my therapist & was able to get a sense of perspective on the previous day. I looked at my budget & decided I could go back to the anime store & buy some more Fruits Basket -heaven help me! I tried to resist, but the story is just too good! B was animated & laughing when I picked him up from school. He happily did his homework & had snack, & then the mail arrived & "Howl's Moving Castle" finally arrived (!) so we went right up & watched it in Japanese. It is so wonderful... B & I enjoy tossing out the words we recognise (we put the english subtitles on, too) to see if the other of us picked-up on them... plus we really enjoy the original voice actors, chosen by Miyazaki himself. I would probably not ever watch it in english again, given the opportunity... The evening went well, too. After B was in bed, C & I decided that there was no way that his good day could be due to the increased zoloft (yet) but was probably the result of having had such a dreadful time the day before (C calls it "regression toward the mean" :) Either way, we are grateful. We shared again how tough it is to live with such an unpredictable kid... but how rewarding B makes it anyway, just because he's B.

Tomorrow is another parent/student/teacher conference day (our conference was last week) & it's C's day off. A school friend is coming over & they're all going swimming at the Y in the morning (after our last meeting with Dr. M, when he encouraged us to get B more physically active to help deal with the anxiety, we joined the Y where B's class goes swimming for part of the winter, since it's nearby & he's comfortable there). I have a doctor's appointment in the morning- I've got to do something about this sciatic pain, since I don't need the extra stress of sharp pains going down my leg... then we're hoping to take C out for japanese food (we're trying to get him accustomed to it well before we go to Japan next year, hee, hee). I am hoping to have us all sit down to watch Howl together in the afternoon- C said he wouldn't mind seeing it in Japanese, if we have the subtitles :)

Friday, March 10, 2006


I was looking through the latest Syracuse Culural Workers ( catalogue this morning and came across a poster from a South African children's rights organisation that said:

All children have a right to:
Love and security
Healthy food to eat
A decent place to live
Adequate medical care
Be protected from abuse
Good education

Our rights=Our future

I agree wholeheartedly with this statement. As a mother & an adult who was abused as a child, I don't think we can reiterate too many times the basic rights that children deserve. As an adult Unitarian Universalist/Jedi, I believe that we are all interconnected- in the present now & for all time, and so our behaviour towards one another has real consequences. The good we do has a real effect on all of us, as does the ill we do... This may sound hippy-dippy abstract, but I believe that if I live this philosophy, then it becomes concrete & a true Force in the world.

This statement of rights also got me thinking about "rights" in general, and how people act on their perceived "rights". Specifically, I've been thinking about the perception of "rights" in the on-going conflict within the autism "community" over "cure" & "acceptance", "poisoning" vs genetics...

When B was diagnosed with Aspergers Syndrome, C & I took a look at the literature published to date concerning possibility of mercury poisoning, among other things, as the cause of autism. Both C & I are accustomed to reading these sorts of research papers- he's an MD & I was a biomedical researcher- & so we were able to look carefully at the types of statistical analysis that was done, as well as the populations studied. Neither of us found compelling evidence for connecting autism to external causes in any of the papers we read. Our belief is that B's autism is genetic, since we can identify other family members with spectrum tendencies (I see them very clearly in myself, for example). Another observation that counters a post-natal onset for B's autism is not only his "high needs baby" infancy (chronicled in my "History pt. 1" post) but also his lack of binocular convergence- in short, my kid never ever recognised faces (among other things) until after he had spent nearly a year in visual/perceptual therapy. I see the visual issues as an integral part of his spectrum-ness, so it just doesn't make sense to me that any of his spectrum charactersitics could be post-natally induced. I've come to see that being on the spectrum is part of who B is. It is how he perceives & interacts with the world, & although we have given him assistance of various sorts to help him organise his perceptions & make sense of them, I also value his unique way of looking of things & wish the rest of the world did, too.

I was explaining this all to a friend yesterday at school. Since we haven't known each other for very long, she has only seen our moving into acceptance mode of B's autism & not the struggle we went through to get where we are... It's relevant to her because her son is on the spectrum (to anyone observing & working with him), but has not been able to get an AS diagnosis from the specialist she's taken him to, which puzzles me (I've been encouraging her to get a second opinion). I know that seeking such a diagnosis has mixed responses in the autism community- but the effects of being neurologically different without an official diagnosis can be devestating on a child & their family, at least in our community. The child is the biggest loser, since he doesn't qualify for pragmatic speech services (which he needs) & are horrifically expensive for parents to cover themselves- if they are able to get them outside of a school setting. The family finds themselves locked in the midst of their grief & confusion, too, because they know that their child has special needs & is not developing "normally", but they don't have anything concrete to wrap their thoughts/fears/hopes around. This friend asked me yesterday if I thought it was the "live vaccines" that had damaged her kid (but not his younger brother...). I tried to explain that these were different issues (the "live vaccine" was the polio vaccine, & there was a danger there- one that I took seriously, since my mother had had polio as a child), & then explained our understanding of the research on vaccines & autism... This conversation helped me to understand how confusing the conflict over whether or not vaccines are related to autism has become. Not everyone can read & understand medical literature, or understands how statistics can be made to lie, subtly, or to favour the desired outcome. It also helped me to understand how easily a parent's fears can be exploited by unscrupulous people... and perhaps I am again being naive, but I really don't understand how anyone could think litigation & large settlements will make things all better... all right, I can see that the promise of a large settlement could make some families feel they can better care for their child with autism, but I can't help but feel that this is not the best solution to helping families cope/care/value their autistic family members.

It also led me back to thinking about what people believe to be their "rights"...
I see lists of "rights" being necessary when the society does not automatically grant certain basic needs to its members. We have a Bill of Rights in the US & I am glad of it, although it seems to be missing some essential things, in my opinion, such as the right to adequate medical care, sufficient food & housing, to be free of harassment based on gender/sexuality/race/religion... I'll stop there for now. Along with rights, for adults, there are also responsibilities of course. I believe it is my responsibility as a parent to make sure that B receives the same rights that I do, under the law, by providing him with things like a home & food, education & medical care. C & I have extended this list of rights, based on our religious beliefs, & also try to see that he is respected, loved, & treated with dignity. The ways that we do these things, & perhaps our belief that he deserves them causes us to diverge somewhat from the mainstream, or so I believe. For example, the way we respect him & treat him with dignity is to refrain from corporal punishment in our home. Our kid does not get spanked or slapped. We took this belief so far as to refuse to "Ferberise" our colicky child when our pediatrician suggested it, choosing instead to co-sleep & night-parent him. Another way in which we treat him with respect & dignity is to make sure he understands the importance of treating others, including us, the same way. It takes energy to follow-through on these things, but it's a responsibility we feel strongly about. I think that where things get very fuzzy in the confrontation over how to treat & even perceive people with autism is in the area of personal beliefs about how children should be raised. Perhaps it's even deeper, going back to why people choose (or don't choose) to have children. Because of our backgrounds, C & I were aware of the possibility that our child would not be "perfect". We decided that we didn't care how our child came out- we just wanted the chance to be parents- so we refused all prenatal testing. We never assumed that we have the "right" to a perfect child, & although our process of learning & coping with B's diagnoses was just a bumpy as anyone else's, we've never felt that anyone owed us anything because our kid has Aspergers, Tourette's, OCD. We are not susceptible to promises of recompense because we're not looking for it.

I can say honestly that, although I have no promises of B's future success, no certainty that my obviously bright & in many ways capable child will ever live independantly, I am glad of who he is. I enjoy my life most of the time. Yeah, it's scary sometimes. He's an unpredictable kid, getting bigger, with puberty just around the corner (eek!). He's also a delight. C & I have a good relationship that has been tested by this kid & has remained resilient. We enjoy raising our "different" kid. We wish he didn't have so many difficulties (I'd gladly dump the OCD right this minute, but it looks like it'll take a bit longer...), but no amount of blame or money would make a difference in our lives. We are fortunate- we are not homeless, we are raising B in a two-parent family, we have medical care when we need it & I don't have to work in order to make ends meet- so I can stay on top of B's many needs & make sure we give him our best. I am deeply aware that this good fortune is a big part of why we can feel comfortable raising our autistic kid. I am also aware that it is our attitudes that make a big difference as well. I have been able to adjust my expectations of my life to accomodate raising a differently abled child. I am not ashamed of him, nor do I consider his neurological differences to be "damage" requiring compensation.

I know that there are many voices, from many different perspectives, in the controversy over how to look at autism, how to "treat" it, how to live with it. I can only express my own way of looking at my own experience with autism. But I would also like to suggest that all who participate in this discussion look inside to their own expectations, their own sense of their "rights", & try to understand how this affects their journey with autism. I believe that there is life beyond hopelessness & broken dreams, if we are willing to dream differently.

Wednesday, March 08, 2006

The mindful iconoclast...

I have considered myself to be an iconoclast for quite some time... ever since I heard the word on a "Pinky & the Brain" episode of the Animaniacs, one of my favourite early-90's cartoons. :) My sense of what the word "iconoclast" means is/was of someone who refuses to worship the idols of popular (or any) culture. I just looked it up un "Webster's II" & discovered that you actually have to break the idols to be an iconoclast... that seems rather hair-splitting to me, so I'll continue to consider myself one (I'm not that big on mayhem, really...).

One of my manifestations of iconoclasm is refusing to believe that famous people are anything more than just people, or that anyone in authority is, at heart, is anything more than just a person. At this phase of my life, this attitude doesn't get me in much trouble. I don't have a boss, & the "authority" figures in my life (doctors, mostly) seem comfortable that I call (most of) them by their first names... :) Consistant with this philosophy, B goes to an alternative school where all the staff are known by their first names, & B's classmates know me either as "B's mom" or "Lisa". C has no interest in anyone outside of his office referring to him as "doctor" (we have a few friends who affectionately call him "doc"), so he's with the programme as well... Occasionally we rub-up against the rest of the world, where I get referred-to as "Mrs. my-last-name", but I've gotten used to it as a make-believe sort of thing (since I've never really been "Mrs. my-last-name" or "Mrs. C's-last-name") so it kind of makes me smile, rather than irritates. B is on first-name basis with most of our friends, but we are careful to be aware of those who would not be comfortable with this & introduce them to him with the honourific. B's twist on this is that he generally forgets any honourific & cuts to the essence, calling them by their last name, which we try to gently correct, but has offended no-one so far (he does this with anyone with an honourific attatched- doctors as well :).

As I mention in my profile, I agonised for quite a while over whether or not I should refer to myself as "Jedi" when signing into the HP forums for the first time... seems silly, perhaps, for such an iconoclast, but it's the stubbborn desire to adhere to the truth that makes me an iconoclast, & led me to want to be a Jedi in the first place, so I didn't want to portray myself as one unless it felt true... I think it was remembering childbirth & B's infancy that convinced me that I had passed my "trials" & was truly a Jedi. Of course, it's having survived Survivor bootcamp that really did it... but it's the nature of my present state of Survivorhood that made me forget. I've come to understand that it's a good thing to forget all about the abuse for lengths of time- that not having to live every moment as a Survivor is one of the things I claimed when I came out the other side of recovery. I have ruminated occasionally in here about what it means to me to be a Jedi- & how my Jedi diverge from the Hollywood version (sorry, George... I do hope you knew what you were doing when you unleased this idea out into the world :) Zilari's comment to my last post reminded me that I should mention that my Jedi do not have to be buff swordfighters, either. My 48-year-old arthritic body wouldn't last half a minute with any of the Darths in a lightsabre duel- but in my world it doesn't have to. I prefer to encounter my Darths with Force of will, not brawn or even speed. In the past couple of years I have come to see these encounters not as battles, with good guy & loser, but as ways of getting my head around someone else's point of view, so that we can come to an agreement. This takes at least as much effort as a battle, believe me, & is rarely as clean as severing someone in two, but the long-term benefits are much more positive :)

About a year & a half ago C & I had the opportunity to attend a lecture by Jon Kabat-Zinn, a strong proponent of the mindfulness movement (which is based on Buddhist principles, but does not go so far as to train people as Buddhists... sort of secular Buddhism, to my mind :) here in the US. C has a partner who leads mindfulness workshops for his patients & who has trained with Kabat-Zinn, which is how he ended-up lecturing in our town... We were interested in attending the lecture partly because we had a couple of K-Z's books, including "Everyday Blessings", a book about mindful parenting (written with his wife, Myla) that C had given me when B was an infant. I must confess that I never made it through the book- it was far too abstract for me to relate to while coping with baby B. Having dipped-into it again recently, I am still put-off by the bits I read, relating being a parent to Arthurian legend. (I have to confess here that I also have a predjudice against the word "parenting" as being a psudo-word that promises more than it gives, but that's just me...) However, both C & I have been interested in learning more about mindfulness, since we are both interested in Buddhist philosophy & have, at different times in our lives, tried za-zen as a spiritual practise. We were equally as curious to observe Jon K-Z as a lecturer as to hear what he had to say. The lecture was to the medical community & primarily concerned the results of using mindfulness as a daily practise to help people live healthier lives. I applaud these efforts- I think that we in the US are far too interested in having doctoring done to us, & not taking enough responsibility for how our lifestyles affect our health. Where I have difficulty is with the proponents themselves. They seem to send my iconoclast-meter sky high... I know a couple of active mindfulness teachers, people adored by their students, who are some of the lousiest parents I have met. They talk their kids down, right in front of them, to the point that I want to just shake them (the parents). The Jedi in me says "what the hell!?!" when I encounter this sort of thing- where is the true practise of mindfulness? C & I have discussed this at length, so we were particularly interested just to see how an internationally known practitioner of mindfulness comports himself...

The talk was interesting & the information presented impressive- there is no doubt that people who adopt mindfulness practise have good results health-wise. The speaker... wrestled with his power-point presentation in a most clueless way... was passionate about his subject... had a nice, relaxed way of speaking & did not seem full of himself... in other words, seemed like a nice enough person. I had no interest in shaking his hand or meeting him, so did not have the opportunity to find out if he was interested in meeting me :) He had quite a crowd swarming around him after the lecture, so C & I slipped out without him noticing **grin**

I am led to wonder how people who become well-known or even "stars" escape the guru syndrome of having people believe that you are the source of their feeling of well-being, rather than the inspiration. There is so much emphasis in our culture placed on being more special than others- I know I felt a strong pressure as I was growing-up to want to be better-looking, more successful, wealthier, happier than everybody else. There was a time when I wanted to be "someone" in the knitting field- I have had patterns published in various books & magazines & have been moderately well-known as a knitting teacher locally. It's taken me many years on my life-journey to understand that my happiness does not rely on being better than others, but on being better along with others. I am not interested in being a "star" or even well-known, but on being respected for what I do (even if not many know what the heck I'm doing...). For me the process of teaching has become much more important than being known as a teacher. So, perhaps the concepts of humility, mindfulness, & iconoclasm have all become mixed-up in my mind in a way that no-one else finds relevant, but for me these are inseparable concepts. It seems to me that if you are truly practising mindfulness & living in the moment, then competition, striving against others for rewards, the desire to be respected above others, even thinking that you are better than someone else- these things become meaningless ideas. To me. So to me a "mindfulness superstar" is an oxymoron... I wonder how anyone, particularly someone whose livihood depends on selling books & being well-known, can escape the guru syndrome, particularly when the need for the public to know & invade one's life increases the better-known one is. Some of these thoughts were brought back to mind when I heard the story of "J-Mac", the autistic young man who recently made such a splash in the media for his basketball triumph. As inspiring as the story is, I wondered how such a media intrusion would affect our lives, & decided that I would not be happy to have anyone, let alone Disney, mucking about with us. Selfish, perhaps, & very unlikely to happen, of course, but there we are...

After the lecture I asked my therapist, who has done quite a lot of exploring of eastern philosopies in her life-journey, if she could recommend some mindfulness literature that was free of the superstar-syndrome sliminess. She laughed, understanding what I meant immediately, & recommended Thich Nhat Hanh's writings. For our anniversary that year I picked-up a couple of his books as part of C's present, since I thought it would be fun to do some further reading together. As it turned out, it's wonderful & interesting reading, but very difficult when read out loud- there's a lot of repetition that becomes almost mantra-like, very appropriate in books by a Buddhist monk, but really difficult to listen-to when read aloud (or so we found). So we've continued our individual mindfulness journeys, uh, individually. I was delighted to have recommended to me, by an HP forums friend, Matthew Bortolin's The Dharma of Star Wars, & even more delighted to discover that he studied with Thich Nhat Hanh... it's a wonderful book, illuminating Jedi philosophy from a Buddhist point of view, & very similar to what I try to practise myself... with a big difference. Here's the thing- to truly become a master of any practise takes dedication & TIME. Time to meditate, time to just be aware... TIME! I have loads of time- in which I have a very full life as a mother & partner & artist... I do not have the TIME to become the full master of any practise. What I do have is time to practise :) I have time to try to be mindful, to be as present as possible, to think positively & creatively, to take the time to work things out or think things through before reacting- or not. I even have lots of opportunities to practise my patience & creative thinking, since my kid requires it of me daily. I think of it as the flip-side of monastic-based practise: full & mindful engagement in everyday life. It takes a long time to become adept at anything, but it's never boring!

Monday, March 06, 2006

Striking a balance...

Bleah!! I spent a full hour waiting for an appointment this morning... My cell phone is dead, too, & the new one hasn't arrived yet, which only added to my anxiety. (I only turn the phone on when I leave school & am not going home, so that they can contact me if necessary.) This particular doctor, my TMJ specialist, does not have the best of records, waiting-wise, although he seemed to have been getting a handle on things last time I was there (4-ish months ago). I was just going in to have my splint checked to make sure it was still fitting properly, so it felt even worse to wait so long...

When they did finally get to me, the assistant seemed determined to gloss-over the inconvenience. She'd come out once (when I went back to the secretary at 20 minutes past my appointment time to see what was up) to say that there wasn't a room for me yet, & so was cheerily taking me back to the finally freed-up room to get me settled, but I just wasn't in the mood. I wasn't mad, per se, just grumpy & not in the mood to be cheered-up. It felt disrespectful to be kept waiting so long- if there had been an emergency she could have said so, but didn't... What I sensed was her expectation to go along with her attempt to pretend nothing untoward had happened. I suddenly had a sense of the Jedi in myself, the strong & respect-worthy person not being willing to participate in a charade. I was polite, but did not respond to her comments about the lovely day outside... When the doctor came in he had the good grace to apologise & say that they were still ironing-out some space problems, & further explained that they actually don't have enough chairs for him to see patients (but, of course, still book them). Being the wife of a doctor, I can relate to those headaches, although I don't like dealing with them personally. Fortunately, I like this doctor & know he's doing his best, so was back in my usual good humour.

On my way out of the office, I thought about how it felt to refuse to say "it's ok to inconvenience me". This is new behaviour for me & still feels experimental, although it also feels right. Thanks to being a Survivor, it's taken me my whole life up to now to discover that I am a person intrisically worthy of respect. I don't have to be Yoda or Obi Wan to deserve it- I deserve it. This is how I try to behave to others, this is what C & I model for B in our everyday interactions. We always thank the meal-preparer for the meal, I try to remember to thank C for emptying the dishwasher (even though it's not a designated task- whoever gets to it first does it), we remind B to say thanks for favours & treats given him & thank him when he's been kind to us. This form of acknowledgement/respect is very important to us. It's how we say "you are a person who is worth our notice & appreciation". It is this kind of behaviour from C that taught me that I am a person worthy of respect. Even sooo...

It's not easy to hold on to my dignity & refuse to play-along when someone is determined to be disrespectful. I have found that I often need time to process when this sort of thing is happening because my instincts aren't very good yet. Plus, there is a strong part of female socialisation that tells us not to make waves, not to be mean, let it go... One situation where I'm getting very good at holding my ground is with phone solicitations. I absolutely detest these invasions of my privacy, so have become more & more comfortable with challenging them. We are lucky in that we have a built-in bs detector when it comes to these things; since C & I don't share the same last name, we can always tell if they call me "Mrs C's name" or him "Mr my name" that they're not anyone we know or want to hear from. I am always polite (ok, maybe not always... but I've only yelled once :), and as soon as I realise what they're up to, I inform them that we prefer not to receive phone solicitations, thank them, & hang up. It's a shame that some of the best causes are some of the worst offenders, phone-solicitation-wise, & this, sadly, has really soured me on some of them. Perhaps I'm just an outlier, but this is probably the worst way to get my co-operation... & I hope they figure it out!

Today, it felt odd & stiff to refuse the assistant's efforts to gloss-over the hour I waited to see the doctor. I tried to strike a balance between being rude (which I did not want to do- adding disrespect to disrespect gets us nowhere) & being compliant. I think I succeeded. I certainly did not feel like I bought-into the false cheeriness, but I wasn't unpleasant either. I hope I seemed dignified- she stopped trying, at any rate :) I'm beginning to see how my internal image of being a Jedi is a form of daily spiritual practise. Imagining that I'm a person worthy of being respected seems to have rubbed-off in a practical way. Plus, because I kept my dignity, I don't have any left-over or unresolved feelings about my being made to wait this morning. They know how I felt about it, nobody was left with the feeling that it was ok to do this, the doctor apologised, it's over. Now, the laundry is beeping at me... & I may find time to do a bit of sewing before having to go get B at school (I hope!).

Sunday, March 05, 2006

B is drawing!

Can you tell I'm psyched?! OK, before I get gushing, this picture is of "Morenaite", which is a Pokeman creature that B created, based (of course) on a mole rat (Rufus was the model for the drawing). I have written "mo-re-na-i-te" in the hiragana alphabet at the top, & our Japanese teacher, Tomoko wrote it out for B in kanji right below. He is saying "naco!" which is what Rufus in Kim Possible likes to say (his favourite food :) & it's also written in hiragana.

OK, back to the gush... As I mentioned here a week or so ago, B & I had done some drawing together during winter break (the resulting picture of Rusagi is posted below). He had dreamed-up the Morenaite & I had written the hiragana for him, & even the talk-bubble, but he lost interest in drawing... until yesterday's Japanese lesson (go fig). We were talking about manga again & Tomoko revealed a heretofore hidden talent for drawing manga, which really fired B up! He showed her his Rusagi picture (& I showed her some of my manga-drawing attempts) & she proceded to draw us some amazing pictures... I had strongly suspected that Japanese folks would have a leg-up when it comes to drawing because their written language is, essentially, pictures, & watching Tomoko draw confirmed this opinion. It was like watching her write kanji- just gorgeous. So B decided it was time to draw Moranaite & you can see the result. I think it's wonderful! B has an eye for capturing the essence of what he draws & I've seen this before in his drawings, but his interest in drawing has been very limited in the past due to his fine-motor skill difficulties, & compounded by his visual perceptual difficulties. He was never interested in colouring books & has had to be strongly encouraged & supported at school when it comes to drawing/illustrating/colouring. He now seems much more comfortable with not only drawing, but erasing- something he used-to despise (erasible coloured pencils are helping, too).

He decided that he wanted to draw during choir practise this morning at church, rather than read, so we packed everything up in a tote bag & he created 6 more drawings of Pokeman creatures in about an hour & a half. He has been dreaming-up these creatures & describing them in detail to us (listing them, really), so it is soooo cool to see him feel competent to draw them. I have waited a very long time to see him enjoy the process of drawing. All of the patience has really paid-off!! :)

Rusagi drawing...

This is the picture of Rusagi that B drew during winter break, with the "real-life" inspiration. Rusagi is B's own creation- a bionicle creature based on a rabbit ("usagi" is Japanese for rabbit...). B used his picture as inspiration for cartoons featuring the adventures of the Rusagi. :)

Friday, March 03, 2006


Thanks to recent posts by estee (, zilari (, & alexander's daddy (, & the ensuing discussion in their comments' sections, I have been trying to educate myself further about the issues & conflicts within the autism community these days. I found autism diva's site ( to be very helpful, especially for info about current events & controversies, & from her site I found ( & the cafe press shop of oddizms (, where I detoured to find a replacement for my puzzle-piece ribbon car magnet. Or, perhaps, an addition to it, I haven't decided yet. What I have been finding reinforces (unfortunately) my instinct to keep the heck away from the popular media... it's just too overwhelming. However, I can't just stick my head in the sand either. I have strong beliefs about how all people should be treated, and I can't advocate for my beliefs very well if I'm ignorant of what's going on out there...

To be honest, I do feel naive- I had no idea that there were parents subjecting their children to dangerous "therapies" to "reduce" the amount fo mercury supposedly in their bodies. I had no idea that the puzzle-piece magnet may be seen by the adult autism community as disrespectful. For me, it was a way of publicly "coming out" to the community as a parent of a child with autism, which was a big step on my journey of acceptance & beyond. In honour of this journey, I think I'll probably add the new sticker, rather than replace the magnet with it (thinking on the fly here...). I have never found the practise of being "pc" terribly helpful or respectful, really. I think it just allows people to hide obvious issues behind a mask, or pretend they're not there. What I am most interested in is being respectful, which can lead to similar behaviour (as "pc") but from different motivations. Bottom line for me is that it all boils-down to respect.

My educational journey was motivated by my wish to be respectful to autistic adults & to other parents of kids on the spectrum, as well as my own growing child. I think that my lack of previous interest in exploring these issues has been motivated by encounters with other parents of kids with autism that were less than positive. I think we've been very fortunate in most of our interactions with friends & family since B was diagnosed with AS. Our immediate family has been pretty supportive of all 3 of us, although it's not always easy for older people (read "grandparents") to accomodate B's behaviours, since they don't have to live with him day to day & don't always understand why we don't jump on every little thing & remediate it (whereas we try to "choose our battles" & let B just "be" when we think it's appropriate). The greater number of our friends, particularly our church community & sailing friends, have been extremely supportive of us as individuals & as a family. These are the folks who have been with us from the beginning & seen us through the process of B's "dominoes-falling" diagnoses. Many have proactively educated themselves about AS & asked us for resources (& used us as resources as well) for learning more. I can think of only one close friend who disappeared after B's initial diagnosis, which is still painful, but cushioned by the far greater number of friends who've been there for us. When it comes to school, we have also been very fortunate to have found schools that treat B like a person to be educated & not like a problem or as a "diagnosis". From my interactions with other parents of spectum kids at B's school, I know that our story is far from common. Some of them feel isolated within their families, vilified because their child is "different" & for their attempts to find out why... Some parents seem to be trying to raise their kids in a bubble, free from the expectations of the "real world", which they don't feel their kid can handle. And as varied as the experiences of parents at B's school (which requires support of an alternative education philosophy, counter to mainstream educational thinking) seem to be, my experiences with other parents have been, other than one or two notable instances, uncomfortable...

I should preface this next bit by mentioning that I have a fair amount of social anxiety that has slooowly eased-up just by having a kid & having to be in social situations (& be functional in these situations). I am not the ice-breaker in a group of unfamiliar people. I warm-up pretty quickly, though, once somebody gets me talking, & in a group of friends I have no difficulty at all. I also have always known that I am different in most ways (this is probably part of my Survivor stuff) & I'm not like most other moms I know. It probably could be summed-up by reminding everyone that I think I'm a Jedi (for heaven's sake!), although most people do not know this :) What they see is a woman with long, greying hair, no makeup (occasional lipstick), & hand-made clothing that relates very little to current fashion. This is how I am most comfortable being & although I know it can increase my social anxiety, I am far more comfortable doing things my way rather than trying to conform (that was my previous life...).

The summer B was 6, when he was diagnosed "officially" with AS, his psychologist recommended a "Friend Makers" class for kids with Aspergers being given by a colleague & a speech therapist. It met once-weekly, for an hour, for 6 weeks. We parents sat in the waiting room together, therefore, for an hour, for 6 weeks... The first week, the only parent who spoke to me was one whose kids also saw B's vision therapist, so we'd met there. She seemed to know a few of the other parents as well, but never thought to introduce me to them (there were 8 of us, mostly moms, with occasional dads). I sat & knitted &, essentially, observed for those first couple weeks. It was a very uncomfortable place... one kid had trouble staying in the room with the other kids & had to come out to see his (all of the kids in B's session were boys) mom frequently, which seemed to frustrate his mom a lot. Another mom had 3 other kids in the waiting room with her, at least one of them appeared to also be on the spectrum, & she was constantly chivvying them about their behaviour... Another couple seemed frozen, with "deer in the headlights" looks on their faces. I really wanted to say something to them, help them to an understanding that this was not the end of the world... the problem was what & how to say it. By the third week, we began chatting among ourselves more naturally. I was glad that I had kept my mouth shut initially- these folks were all over the place in terms of their feelings & I'm sure I'd have offended someone had I spoken-up earlier. I shared our experiences with school & doctors, which had been mostly positive, & came away feeling very lucky... sort-of. It didn't always seem like luck to me, but attitude, that made the difference in our stories, but I was at a loss as to how I could express this. It was emotionally wrenching to hear the stories as they came out, & I was almost physically (as well as emotionally) reminded of my Survivor therapy groups (I mentioned in my "History pt. 1" post that I am an incest Survivor)... which led me to think that there probably should have been a therapist stationed out in the waiting room with us. After one gruelling hour in there I was unsettled for the whole day. There was so much fear & anger, some of which I could identify with, but a great deal of it was a mystery to me. One mom went on & on about the price of her child's therapies & how they couldn't afford it, but when I saw her bundling her kid into the latest-model ultra-mini-van in the parking lot, I wondered how on earth they couldn't afford their kid's therapy... Other parents talked about the latest treatments & how they were driving their kids hundreds of miles every week to access them... There was such a sense of desperation in that room.

It all left me very confused. This Friend Makers class was about as high-tech as we had gotten, with B therapy-wise. He saw his psychologist at least twice a month & had his vision therapy right through the summer, unlike OT & PT, which was school-based. We had not sought any other interventions for B than what we had learned to do at home... was there something wrong with us? My gut told me that B was fine, really. He had a whole list of issues, such a fine-motor co-ordination, lack of binocular vision, & social interaction difficulties, which we were addressing. But it had never occurred to us that his autism needed to be treated. I kept these mostly fuzzy thoughts to myself, but after one very stressful session in the waiting room I found myself upset all day. We decided to go to our favourite pizza place for dinner that evening, and in the course of the meal not only did B burst into tears because one of the kids had told him that Superman's planet had exploded & that's why he had to come to earth (sigh), but then I lost it while trying to fill C in on my day... C was surrounded by sobbing family members in a resaturant & wasn't sure whom to deal with first (poor guy...). After B went to bed we talked about the whole thing & came to the conclusion that we thought our kid was doing just fine with what we were already providing, & that our guts were our best guide, informed by the great advice we got from our "village". In light of this experience with other parents, though, we also decided to keep a low profile & not to join any of the local autism parent support groups.

When I reflect on these experiences, I am struck by how much our acceptance of anything unexpected in our lives is based on our attitude. It had taken us nearly 8 years to conceive a viable baby. C & I decided to have no prenatal testing at all- not even ultrasound. I don't think anyone can be fully prepared for whatever "bad news" they may receive about their newborn child, but we were certainly ready to accept anything we got. B was our one shot at parenthood, so we ran with it. As I've chronicled previously, B was a difficult, "high-needs" baby, but we hung-in there with him because we were committed to him. He's still a handful, but our commitment is made, & to do any less for him would be disrespectful. We have arranged our lives around him, but not to the extent that we exclude our own needs, so we're pretty happy as a family. Neither of us sees B's autism as a thing that needs curing, and our efforts to help him are directed at helping him make better sense of the world so that he can enjoy his life fully. We don't see B's neurological differences as preventing him from enjoying his life or from having a great & fulfilling life. This is how we respect B & ourselves as his parents. When things feel "out of whack" with B we try to look at the balance of all our lives together, we don't try to fix just him.

So that's the way we do it. What I've been finding very helpful & hopeful is reading the blogs of folks like zilari & autism diva, who are furthering my knowledge of how I can be respectful to them & to my growing son's neurodiversity. There is a little, perhaps somewhat Pollyanna, voice in my heart that tells me that my respect for my son is what will really make things turn out "all right" for him, no matter what happens. I believe this voice, because I've seen the power that respect- which I am defining as valuing a person from & for their own point of view, & valuing their intrisic worth & dignity as a human being- has had in my own life. In light of what I have been learning about how autistic children & adults are being treated, I can only hope that the ripples each of us cause when we treat another respectfully will spread wider & wider. Yes, we need to speak-out, too, & make sure that the world knows that we love & value the lives of those deemed "different". May the Force be with us all, in all the ways we try to make a positive difference!!!