Wednesday, November 29, 2006

Mom can see...!

Today, being Wednesday, Charlie took Brendan to school & I had a few glorious hours to pull some things together that have been languishing since before Thanksgiving. I have been wanting to run an indigo vat since October, & have been preparing on & off by pre-dyeing some t-shirts for Brendan, a dress & skirt for me (for the "supernova" technique Brendan & I discovered a couple of summers ago, where we splash procion tie-dyes on cotton garments, fix it, wash it, then tie it & overdye in indigo for a very cool effect). I've also been working on a japanese-style hippari top (like a karate gi) in white muslin to be shibori dyed in the indigo. Today I finished the hems on the hippari & did some research online about shibori, which yielded the exact thing I was looking for. I also put 17 balls of wool yarn into skeins for over-dyeing (some of it probably 40 years old, with very 60's colours, given to me by a friend whose elderly aunt died). Whew! Now all I have to do is the shibori tying & I will be ready to run the vat. I wish the warm weather were going to last (it got into the 60's today) because it would be a whole lot nicer (& less smelly) to run it outside, but I don't see any way I'm going to actually be ready to dye by tomorrow, & Friday will return us to our regularly scheduled pre-winter weather...

We had our long-awaited team meeting at school with Brendan's psychologist, Dr. M at noon today. Charlie was working in the morning, so he nipped-in just as we got started. Brendan's classroom teacher, Jen, was home with a sick kid today (& his consultant teacher, Cherie, was subbing for her...) but she managed to get there for the meeting, too. Brendan's speech & occupational therapists were there as well, & our friend & school's director, Paula. This was a follow-up to a school visit Dr. M made in early November to talk with Brendan's teachers, see the school, & generally get a feel for how they might apply some behavioural techniques to help Brendan cope better at school. They had already set-up the new daily scheduling system for him, suggested by Dr. M, which has been in place for 3 weeks now & it got very high marks, particularly for helping him stay in the classroom for longer periods of time. The trade-off, however, is that the longer Brendan stays in the classroom, the less work he actually gets done because he's so distracted & ticcy. After looking at it from different perspectives, we all decided to keep going with the attempts to help him get the social time in the classroom, rather than worry too much about the academic time lost (he catches up very quickly with some one-on-one time, so is staying up with the concepts- just isn't putting out quite as much written work as he was before). Jen said that he really seems to be enjoying the social time with the other kids, & his tics have not been disturbing anyone. We talked about the wisdom of giving him "tic breaks" during the day, to get some of the tension out of his system so he can concentrate better in class & Dr. M said that would be a great idea. The best news came from his OT, Anne, who has been working with Brendan on a programme designed to help him learn to identify how he feels & then to react to how he feels by specific activities that they've brainstormed together. So, if he checks in with himself & discovers that he's "running low" he has some strategies for getting his energy up, like doing something active or eating a snack, & if he's "running high" they've been working on relaxation techniques. This is the most amazing part, since Brendan has resisted any attempt to get him to participate in relaxation activities since he was in first grade. His speech therapist, Mary, mentioned that he'd given her the feedback that he didn't like to do these activities or even hear them spoken of because not being able to do them successfully made him feel bad. I was amazed that he told her this, & glad to understand better. Now he's accepting deep pressure from a few of us, & Jen has seen him put his head on his desk & take a minute to breathe deeply in the classroom, so he must be feeling that these techniques are finally working for him. Hooray!!! I asked Ann if she thought a weighted vest might be a good thing to try at school & she said she'd bring it up with Brendan. He & I could make one together, & she has a pattern we could use, so maybe it's be worth a try (he uses a weighted blanket at night, so we know this sort of thing works for him). All in all, it was a very positive meeting &, in spite of the difficulty of Brendan's increasing tics & anxiety, we got the definite sense that he's doing really well in many ways. Again, hooray!! And what a great team he has working with him. I've been thinking about holiday presents for everybody, & I get so muddled because, basically, I can't think of anything that would properly represent how much I appreciate these folks. They are the best!

Charlie & I came home after the meeting & I continued putting wool into skeins, while Charlie made some phone calls & ate lunch, then it was time for him to get Brendan (& stop at the bakery on the way home-yum), while I waited for the plumber to come & replace our dying kitchen faucet (we got sick of it over the Thanksgiving holiday, & decided to replace it before it broke & flooded the kitchen...). Brendan came home with a book from school that completely engrossed him. It was an anthology of the old Tin Tin comics (I loved them when I was an older teenager) & he barely looked up to say hi to me when they got home, nor did he want a snack. It took him about 45 minutes to finish reading, & after a bakery goodie snack he & Charlie went to fly a new kite (it was an absolutely gorgeous day) on the hill behind our house. They'd found a "beginner" kite (called a "hata") in a kite catalogue & it really lived up to it's name. Charlie said it practically jumped into the air out of their hands & was a lot of fun to fly. They came home an hour later, & said that they'd been able to "walk" the kite part of the way home- it just hovered about 3 feet above their heads until they hit the bottom of the hill & lost the wind. Pretty neat...

And... just before closing time at the optometrist's office, I was able to finally pick up my new glasses. I could actually see to drive home. Talk about apparent miracles...

Tuesday, November 28, 2006

Thanks & quacks... :)

Well, I blew the anonymity thing very nicely with my last 2 posts... I think it shows just how overwhelming life's been for the past week. Mostly, good, but really a lot going on. I appreciate very much the kind comments I've received on the sermon. Once I'd recovered from how long it turned out to be (& really, I didn't get many complaints about that :) it felt very good to get the feedback. The best, though, was from Charlie (my Charlie, *wink*). He really liked what I had to say, & since we're living this together, it made me feel that I had succeeded in capturing our life as I'd hoped to (it was bloody difficult to do, too!!!). The only "unfortunately..." part of the morning was that Brendan did not do very well with Sunday School being held with the kids all together in the lounge, rather than in his regular classroom. His tics/anxiety lately has been the highest we've seen since the onset of the OCD 2 1/2 years ago, so having things not "right" was really upsetting for him. The adults who were supervising the kids managed to help him barely keep it together, but the as soon as the service let out he ran out looking for us. The irony of standing at the door & greeting everyone after the service with my kid mashed against me, head buried in my armpit (he's 4'10"... I'm 5'3"... do the math) after this particular service was not lost on anyone. We bundled him off to the car as soon as we could. At least folks understand now what's going on with him... that's truly a comfort.

Yesterday was the day for Brendan's dental work. He had been really upset about the idea of having nitrous in order to have the filling put in until we'd speculated over dinner (the evening after his last check-up) what it would be like to watch The Elegant Universe on nitrous oxide, which piqued his curiosity & also made him laugh. Brendan has had a lot of distress about the idea of mind control, & I think that's where his fear of the gas was coming from. He's had nitrous before, when he was 6 for his first filling, but had no real memory of it. So it was good to go into this procedure with that anxiety laid to rest. Even better, he decided that missing part of a day at school was a bonus, so he was in a very good state of mind when we finally got to the dentist's office. He co-operated beautifully & it all went very quickly & easily (he said The Elegant Universe didn't seem any different, though :). We did have one very odd & unsettling experience with the "laughing" gas (& he did giggle quite a bit afterward), though... As he was relaxing, wartching the tv in the ceiling & breathing through his nose, as requested, he suddenly said to me "no tics, mom!". He was perfectly relaxed throughout the filling, no twitches, no noises... As he was recovering, with pure oxygen to flush the nitrous out of his system, he said "the tics are coming back". He could feel the tension returning, although he giggled more than ticced for the next hour or so. I had never realised how constantly Brendan feels the tension of the tics. It was unsettling & eye-opening to understand this, especially with there not being a heck of a lot to do about it...

Brendan had a good day at school (coming in at just about lunch time is his idea of a schoolday :), & then we had a brief time for a snack at home, & then on to an appointment with his psychiatrist. Dr. W has made a habit of chatting with Brendan at the beginning of his appointments, getting Brendan's perception of what's going on, which I think is really good (Brendan tolerates it...). Dr. W has a bin of army-man toys (like nothing that we have at home) & Brendan is utterly fascinated by them so he askes repeatedly to be excused to play with them, although he does try to be civil about chatting :) Yesterday he brought up his "new" tics- the one that isn't triggered by anything, & the one so overwhelming that it makes him scream & spasm his whole body (triggered by any number of things). He didn't want to describe the overwhelming one & spoke of it with Rufus covering his face. When he was finally excused to play, I reinforced what Brendan had to say, that these thoughts/tics are causing him a lot of anguish & that we (his parents) feel it's time he had a break. At this point, Dr. W kind of talked out loud, about how it's difficult to know exactly what we're trying to treat. As we know, Brendan's Tourette's & OCD are inextricably intertwined, and I added that we believe the autism plays a part in all of it as well. He & I tried to sort out our language a bit, too, since when I speak of Brendan's anxiety, I'm talking about the OCD thoughts, whereas Dr. W was hearing me speak of a more generalised anxiety, which he doesn't really see (& he's right). He said that, ultimately, there was no perfect solution to Brendan's anxiety because it's so multi-factoral, & that some of it is just how he's "wired" neurologically. I explained that we're not expecting perfection, nor do we want to change who Brendan is. What we want for him is some relief, so he can get back to enjoying life, at least as much as he was a few months ago before we reduced the zoloft (because he can't tolerate the dosage required to actually treat the OCD). I will confess, I wish I'd had my sermon there to give Dr. W. I know he sees lots of parents & probably does not have a clear idea yet of where we're coming from philosophically, so I tried to be a clear as possible that we're working from an acceptance point of view. After discussing all of this, he did say the thing I'd hoped to hear: "Well, if he were my son, I'd try..." He recommended trying Luvox, an SRI with a good record for helping OCD-related anxiety & enough research on the effects in children that we're comfortable using it. As unsettling as it can be to hear the professional that you're relying on for help air his thoughts about the complexity of your kid's situation, after thinking about it I can say that I feel good that he wanted to explain it all, that he was cautious about raising our hopes for the results. This is a process, for sure, & keeping all of us well aware of our priorities & expectations is a very good thing.

This morning, pretty much from the time he woke up, Brendan had a really tough time with overwhelming tics. He had trouble settling on a shirt to wear (they kept setting off tics) & getting dressed was punctuated by thumps & stamps from the tic (I told him the other day that he sounds like a Flamenco dancer when he tics like that, to which he replied with a humourous, InuYasha-esque "OY!" :). Breakfast went a little better, but when he went to brush his teeth his left hand set him off. When our friend Daryl arrived for our every-other-week house-cleaning, I warned him that Brendan was feeling overwhelmed today with tics. Daryl is imperturbable, thank goodness, & good friends with Brendan, who did manage a "good morning" before tearing upstairs yelling that he wanted to be put out of his misery... When I went up I found him under the covers in bed, moaning, & sat down with him wondering what to do. I decided to let Rufus handle things... I moved Rufe up where Brendan could see him & said that the "Quack Doctor" was going to help, & then had Rufe touch him with his paws on his face, ears, nose, as though he were giving him medicine. Brendan started to giggle & suggest places for the "medicine"... Now, lest you think I'm setting my kid up for complete dependance on meds for his well-being (yes, we are aware of this danger), the "Quack Doctor" is an archetypal role in the very old, European mumming tradition (called Revels here in the US). Our church Sunday School put on a mummer's play last year, right before Christmas, & Brendan played the Quack Doctor (& will again at this years' play, which we are gearing-up for in a major way, since Charlie & I are the ones organising it!) because he adores the role so much. It's a humourous, even goofy, role. The thing about the Quack Doctor is that, although he tries all his medicines on the (actually dead) person in the play, he never succeeds in curing them (that takes someone of faith- think Launcelot). Brendan understands that, so I'm not terribly worried that he's going to completely depend on the doctors or the medicines. In fact, when he was moaning in distress, before flying upstairs to the safety of his bed, all I could think to say while hugging him was that I understood that he was feeling bad, but that he're really ok, one of the ok-est people I know. It's not easy to help him to believe that, in the midst of so much emotional turmoil, but I believe it. And Rufus the Quack Doctor distracted Brendan from his distress so well that we were in the car & on the way to school before we knew it.

Onward... with high hopes that Brendan's continuing to have a pleasant day...

Monday, November 27, 2006

Autism sermon part 2...

Here’s part two of the autism sermon, which was entitled “Greetings from Autismland”, by the way...

How Brendan is presently affected by autism is that, like most kids with Aspergers, he is hyper-verbal, with a precocious vocabulary, but that he needs help with what’s called “pragmatic language”. This means that he needs help understanding the give-&-take of conversation. When he was younger his conversations consisted of listing things, rather than listening to others & actually discussing things. This has caused him to need alot of help figuring out how to interact socially with peers, although he has less trouble with adults, who are often charmed by his precise way of speaking. Brendan’s precocity with language has made him an amazing story-teller, & an example of this was his having a story published in an anthology of Harry Potter essays when he was 8 years old, which actually earned him royalties.

Brendan has had difficulty all along the way with fine-& gross-motor skills, which have affected his ability to write fluently & participate in activities that require a great deal of co-ordination- except for legos. Even when he had trouble visually distinguishing the pieces due to early visual/perceptual difficulties (which responded well to therapy) Brendan has always been able to lego- the definition of a true lego-maniac, I guess. When he started learning cursive writing in school a few years ago we decided to forget that & teach him to touch-type instead. About a year ago the school district gave him an alphasmart keyboard to use at school which has made doing schoolwork much easier. We are currently looking into voice-recognition software, since it’s clear that even typing is not the best interface for Brendan to express himself, & current autism research supports this observation. Gross-motor-wise, Brendan has little interest in participating in team sports, which is just fine by us (I’ve always pictured myself as a choir mom rather than a soccer mom). Keeping a child with autism physically active can be a challenge, though. Gym class at school can be difficult for Brendan, with the noise & confusing social dynamics added to his discomfort with doing physically awkward activities. At school he’s been working with the gym teacher to reduce his anxiety about participating. For a while Brendan was taking fencing lessons, but it’s been tough to find low-anxiety time for him to do it now that school has started. Luckily he was born into a sailing family, so we started him in swimming lessons when he was 2 years old, preparing him to begin sailing with us when he was 3, & more recently he started sailboat racing with his dad, which he enjoys.

Some of Brendan’s neurological differences have led to perseverative behaviours, which are behaviours that result from neurons firing without any thought or intention behind them. We were unfamiliar with this sort of thing when Brendan began hitting himself when he was 5. We couldn’t find any behavioural method that would make him stop & this is when we found our wonderful child psychologist, whom we still work with, who explained the nature of perseveration & showed us ways to neurologically retrain Brendan when he engages in self-injurious behaviours (not all of them cause him to hurt himself). The tendency of people with Aspergers to have intense interests in specific subjects is also a perseverative behaviour, & Brendan has this characteristic as well. One thing we work with him on, when sharing his interests in others, it getting him to be aware of the give-&-take of conversation, so that he can experience a shared conversation rather than monopolising it with lists of facts & information.

Another way that Brendan’s neurological differences have affected him is that, as he’s grown older, his sensitivity to input from his senses has become more intense, which has given him aversion to loud noises & certain smells. He also has some food aversions & preferences, although he can be very adventurous about food, too, enjoying certain Japanese foods very much. When exposed to sensory overload Brendan may react with extreme anxiety, which will often set-off Tourette’s tics. This limits where we can take him- we have to be careful about the restaurants & other public places that we visit. If presented with too much sensory info, Brendan may scream, moan, or melt-down rocking on the floor. As he gets larger & more aware of his own sense of dignity, we have to be careful to figure out how to help him manage these reactions- either by distraction or avoidance. One really good distraction has turned out to be learning to speak (& read & write) japanese. One of the gifts of Brendan’s neurological differences is the ability to reproduce pretty much any sound he hears (called echolalia), so I decided to find a japanese teacher for us about a year & a half ago, since Brendan & I are both really interested in Japanese culture. It’s been a really neat experience, learning to speak japanese together. Brendan has learned a lot about the social conventions in our society that don’t come to him naturally, by reflecting on japanese culture, & we’ve also found that switching to japanese in situations where Brendan is starting to experience sensory overload often allows him to switch mental gears enough to distract him & help him cope. In spite of Brendan’s difficulty adjusting to new places, we’ve decided to take a family trup to Japan next June. We’re looking forward to experiencing a completely new & different culture together, & doing a great deal of advance planning so that we can anticipate Brendan’s difficulties, so it can be an adventure of the good kind...

One of the main ways that autism has affected Brendan’s life recently is the anxiety that results from Obsessive Compulsive Disorder, which also triggers Tourette’s tics. This characteristic didn’t show up until 2 1/2 years ago, right around his 8th birthday. Until this time most of Brendan’s behavioural difficulties arose from frustration with not being able to do something he wanted to because of motor difficulties, or the frustrations any kid experiences as they grow. The OCD has caused B to experience so much anxiety that it has caused him to try to hurt himself many times, & has affected his ability to cope with day to day life, particularly at school. The OCD also causes him to do certain things, such as touch certain things in a certain order, in order to alleviate the anxiety. It was at this point that we added a child psychiatrist to the village & began trying to find medication to help reduce the anxiety so that Brendan can enjoy life. This has not been an easy process, since we have yet to find something that works well without giving him side-effects, like weight-gain, & putting him at risk for long-term health problems, such as diabetes & tardative dyskenesia. This has been one of the most heart-wrenchingly difficult parts of being an autism parent, making the decisions as to how much intervention he needs to function versus the risks, & then watching him carefully to see how well it works (or if it works at all). Since he’s also a growing child, we’re constantly keeping tabs on his emotional functioning, & changing his medicine dosages, or the medicines themselves, accordingly. Since we want to keep him on the bare minimum medication for functioning, we have to listen carefully to what he’s telling us about how he feels about himself & his life, & not just count meltdowns & decide how many are acceptable. School is very stressful for him, anxiety-wise, but Brendan needs the opportunity to be with other kids, so taking him out of school due to the stress would not be the best thing for him. We are fortunate that he’s got creative & accepting teachers at his school, the Cobblestone School, & has developed a wonderfully close relationship to his special ed. teacher, who has the sensitivity to tell when he’s becoming overwhelmed by anxiety & needs a break. She has developed strategies with him that allow him to cope & actually learn in spite of the anxiety. Brendan also has monthly sessions with his psychologist for cognitive-behavioural therapy for the OCD, & our hope is that he will continue to develop strategies for coping with the anxiety as he grows & develops so that it will someday not be as overwhelming for him.

As you may surmise from the overview I’ve given of Brendan’s autism characteristics, having a child with autism can be very absorbing & isolating- life in Autismland runs at a different speed & with different rules than life without autism. Brendan’s needs can be very immediate. I am a stay-at-home mom & Charlie works 12-hour days as a physician, so we work hard to balance the time we spend helping him cope with day to day life. Sometimes we have to depend on each other to tag-team Brendan when things get intense lest one or the other of us burns out, so that limits the times we are available for school or church meetings & other activities. Charlie & I depend on our time together in the evenings, too, after Brendan is in bed, to compare perspectives & perceptions on how he’s doing, or share funny stories about things he’s said & done. We compare notes on any patterns of behaviour that we think may need need assistance from his psychologist. We evaluate whether his meds are working properly (as he grows that can change remarkably quickly). We also need the time just to stay connected ourselves, as a couple, so that it’s not just all about Brendan. Some evenings we read out loud to each other or watch shows we’ve taped. Sometimes we just sit quietly & hold hands. I know deeply that I could not be the person & mother that I am without Charlie right beside me. He is a big part of the joy I find in Autismland. Keeping in touch with my sources of spiritual inspiration are essential as well. Singing in the choir & teaching Sunday School help a great deal. Exploration of the buddhist concepts of mindfulness letting-go of attachment have helped me live in the present & let go of ideas about how I think my family or Brendan should be, allowing me to enjoy how they are instead, an invaluable perspective to have.

At every turn we & Brendan have been accepted & continued to feel welcome in this church community. Brendan has found friends here of all ages, understanding Sunday School teachers, mentors, & peers who treat him as a person of worth & dignity no matter how difficult it may sometimes be for him to participate in class or other aspects of church life. This has been a great blessing for all three of us. There are not many places in public these days that Brendan feels comfortable. Church, school, & our sailing club are about the only places where we can go & socialise with friends, meet new people, work for social justice, do the work of the community, & still bring Brendan along for the work & the fun without worrying too much that the behaviours he sometimes exhibits will cause misunderstanding. Being actively involved in this community as a family has kept us open to the world & aware that we have a lot to give this world, & not just to our son. From playing computer games with other kids in the lounge to playing with homeless kids while dad helps make dinner for Interfaith Hospitality Network families, Brendan gets the chance to experience the wider world through our involvement at church.

Part of engagement with the world for all people or parents of young people who are differently abled is advocacy. For me, it wasn’t always an easy thing to do- it took some time before I could say to someone observing Brendan’s sometimes outre behaviour “he’s autistic”. It has gotten easier over time, though. And one of the things we’ve found very important as we have learned about Brendan’s autism & how it affects him has been to help him understand himself well enough that he can, when he wishes to, explain it to others. This requires not only knowledge, but for Brendan to feel comfortable enough with himself & his differences that he doesn’t mind talking about them. It also requires that we, his family, genuinely feel that it’s ok for him to be the way he is. And we do. This doesn’t mean that we don’t provide him with the tools to help him be the best he can be- over the years he’s benefitted greatly from occupational therapy, physical therapy, visual perceptual therapy, & speech therapy. But it has become very plain to me that Brendan’s autism is an essential part of him. He wouldn’t be the person I know & love & take great pride & joy in without it, & so I have come to value autism as part of the whole of him. My great hope is that he will continue to grow into a person who feels comfortable with himself. I think a sign that he is on this path is that he’s been able to speak to his class at school two years in a row now about his differences, explaining how the autism affects his interaction with the world & also letting everyone know what’s up with his sometimes noisy tics. His classmates have respected his openness with them & instead of mocking or mimicking his tics, pretty much ignore them & treat him just like anyone else. His self-advocacy has been very successful so far & makes me very proud.
Like beauty, autism is in the eye of the beholder. But what helps determine the perceptions of people & families affected by autism is the acceptance & support they find within their communities & within themselves. To parents facing the process of diagnosis with their child, I would say that it’s really hard at first. And it’s not easy to think & process all the information you’re being presented with when you’re numb from the implications for your child & family. But remember that you are the ultimate expert on your child, so follow your heart & gut as well as your head. Try to keep your sense of humour, too- it’s been an invaluable tool for our family. When you look for information, it’s important to know that not every organisation with autism attached to it’s name is going to give you a message of encouragement, some don’t even allow autistic adults’ voices to be heard because they provide too much of a positive counterpoint to their message of hopelessness. But the hopeful messages are out there- October’s Autism Acceptance Project that was organised by autism mom, Estee Klar, in Toronto is a good example, the Autism & Advocacy Conference that occurred a few weeks ago in New York City, organised by Kristina Chew’s husband Jim Fisher, & blogs on the Autism Hub, put together by autism dad Kevin Leitch in the UK as a clearinghouse for non-cure-oriented writers are good examples. For those supporting a family coming to terms with autism, the best help is to be open-minded, to not assume that all families are searching for a cure & bombard us with the latest information, to try & meet us half-way & allow us to help as well as be helped. Listen & learn, & love. Anyone who takes the time to think can make a difference in the lives of those around them. I know this because you all have made a difference in the life of this family living in Autismland. And on this Thanksgiving weekend, this is something for which I am very thankful.

Sunday, November 26, 2006

Autism sermon part 1...

In my posts over the past couple of weeks I’ve been talking about writing a sermon on autism that I finally gave at today’s service. It was 2 weeks of really hard writing, most of which disappeared into the ether as I changed the way I wanted to get my points across. The service went very well & there were many positive reactions to what I had to say, including hearfelt words from a family undergoing the diagnosis process right now, although I am still getting over the embarassment of exceeding the 20-minute limit for the sermon (I actually had a hot flash when I looked at my watch between the sermon & final hymn, I was so appalled...). There is just so much to say in order to paint a fully-dimensional picture of life with autism. I am serialising the sermon into 2 parts for the blog, so that it won’t be so lengthy to read at one time. So, without further ado...

Good morning. I’m speaking today about a topic very close to my heart: autism. It may seem odd to refer to something like autism as being close to one’s heart, but one of the things I am learning in my journey as the mother of an autistic child is that things that once seemed scary do not stay that way & can work their way into your heart very easily if you love the person connected to it. I asked Karen for the opportunity to speak today because I see autism mentioned more & more in the media & very often what is told is the negative story- we hear about destroyed families & distraught parents -as recently as a few days ago there was the story of an autistic child murdered by his father, who could no longer bear the burden of raising him & thought he was being kind by ending his child’s life. We don’t as often hear of the many families who are not only coping with their autistic children but are thriving. There are many misperceptions about what autism is & what it means to individuals, families, & society. This morning I’m going to do my best to tell you what I’ve learned about autism & our journey as an autism family in the 4 years since Brendan was diagnosed as being on the autism spectrum.

While writing this sermon I felt the presence of many people looking over my shoulder. People whom I respect & whose points of view on autism have shaped my own. There are other parents of autistic children, whose experiences are different, & yet have enough similarity that we can identify strongly with each other & support each other in our journeys. Adults with autism whom I have met, mostly online through the blog I started nearly a year ago in which I chronicle daily life with my autistic child, & others whom I have watched grow from childhood into adulthood, have shared their invaluable perspectives on their experiences with autism & given us keys to Brendan’s experiences as well. There are the professionals who have helped us by sharing their expertise & respecting us as a family & as individuals. Our family is there, too, & my husband, Charlie, who has picked up my pieces repeatedly as I’ve hit the wall in writing this sermon, & is the quiet anchor in our sometimes turbulent life. The person who looms largest over my shoulder, though, is Brendan himself. As much as I want to speak truly of my experiences as an autism mom, reflect what I’ve learned from all those looking over my shoulder, & make them proud of what I’ve written, I can never forget that I am speaking of, & to a certain extent, for him. As I composed this sermon I have endeavored to be respectful of Brendan, my dear boy, & the reason I am on the journey that I’m sharing with you today.

The term “Autismland” was coined by an online friend of mine, Dr. Kristina Chew, who writes daily of her family’s life with their autistic son, Charlie, in her blog of the same name. I asked her if I might borrow the term as my sermon title because it really captures an essence, for me, of life as an autism family. This kind of life can be so different from those of people we know that sometimes I do feel as though I’m living at a remove from everybody else. But not too far removed... The cards we used as birth announcements when Brendan was born said “It takes a village to raise a child”, & in Brendan’s case this is literally true. You would know, since this church community is a large part of the village that is helping us raise him. The village also encompasses the people looking over my shoulder, the growing number of people who support our family in many ways.

One of the things I’d like to do today is explain a bit about what autism is, since there is a lot of misunderstanding & misinformation about it. There is good reason for there to be confusion about what autism is. For one thing, it has only been recognised officially as being a separate entity from schizophrenia & mental retardation since 1980. For another, the characterstics of autism vary widely: from people who appear to be unaware of the world around them to hyper-verbal geniuses. Autism is called a spectrum disorder for this reason, although I believe it’s a mistake to think of autistic people as falling on either a “low-functioning” or “high-functioning” end of the spectrum, partly because these designations can become self-fulfilling prophecies for the people so labelled, & partly because they simply don’t convey the complexities of autism. It’s really more like a chinese menu, with one from column A & 2 from column B. In the case of Aspergers & Kanners Syndromes, a particular subset of characteristics from the autism menu that tend to occur together have been given the specific names of clinicians who in the 1940’s identified these characteristics & labelled them as syndromes, but these are both part of the autism spectrum. The threads that connect all people with autism are neurological differences that affect sensory perception, understanding of social conventions, & the way the brain interfaces with specific parts of the body, such as speech delays, fine & gross motor delays, & motor planning. Autistic people express their neurological differences in many different ways, particularly as it pertains to sensory issues. Some people may flap their hands or rock, in order to help them process or mitigate the information their senses are giving them, some may injure themselves, some may melt-down crying or screaming if sights, sounds, or smells become overwhelming. Some people are barely recognisable as having autism, with mild social difficulties or intense interests in specific topics, but who fly below the radar of diagnosis, or may be social misfits, but function well enough in society to avoid the label of autism.

Another common mistaken idea about autism is the assumption that a person with autism will exhibit the same behaviours all the time, or that apparent developmental delays are forever. Research is beginning to show that the growth curve of people with autism is longer than that of the neurotypical (non-autistic) population. This puts a whole new spin on the idea of life-long learning & it’s crucial to remember that evaluating anyone on the spectrum using neurotypical developmental timelines will give a false impression of their potential. With the development of devices designed to help with communication, & greater access to those devices, people who were once thought to be hopelessly autistic are communicating their unique insights & ideas about their lives, & slowly being accepted as the people of dignity & worth that society has up until now denied.

You may notice that I am using some carefully chosen vocabulary when speaking of people with autism. I am not trying to be “pc” with my choice of words. What I am trying to do is reflect the attitude that people of neurodiversity have a right to be respected for who they are. This does not mean that neurodiverse people should not have the benefit of appropriate education- including any therapy, device, or support that helps them live life to the fullest. But I truly question the right we have as a society to judge people of any diversity as “impaired” just because they interact differently with the world than the majority. I have come to this conviction by seeing how difficult it can be at times for my son & our family to fit into our society, which, for all the changes brought about by the disabilty rights movements & awareness efforts, still has an atavistic fear of those who are different, those who don’t seem normal.

When autism is mentioned in the media you will often hear people speaking of a cure for autism, as though it were an illness. Some people compare it publicly to cancer or AIDS, & many of these people are parents of children with autism. I disagree strongly with this point of view. Part of the problem is that, although there is research that has pinpointed the areas of brain that work differently in autistic people, there is a lot of misinformation floating around about the causes of autism. The best research so far shows that genetics are the most likely reason for autism to occur, & many families with autistic children can identify other members with autistic tendencies, perhaps a relative considered “quirky” but otherwise undiagnosed. It’s important to understand that other theories for the incidence of autism, such as mercury poisoning from vaccinations have not been proven to be true, & the case for environmental poisoning being the cause has yet to be investigated thoroughly. And although there is a widely-touted “autism epidemic” supposedly occurring these days, studies by the CDC have pretty much debunked this as well, citing better identification criteria for the apparent increase in autism cases over the past 2 decades.

Unfortunately, because there is so much fear surrounding autism, & the supposed epidemic, many quack therapies abound, targeted toward frantic parents who are desperate because their child is not following the normal progression of development. Some of these treatments are actually incredibly toxic, & can lead to the deaths of the children exposed to them. I can’t help but wonder what is so terrible about autism that someone would be willing to risk their child’s death in order to “cure” them? Some might answer that my child isn’t “low-functioning” like their child, that “normal” life for their child is hopeless without a cure. I can’t speak for any parent but myself, but I do not look for a cure for my child because I don’t believe he needs to be “normal” by society’s standards in order to be worthwhile. I believe that all life has worth & would not risk changing who he is intrinsically by wiping out his autism. And there really is no substantiation for the claims of people cured of autism, outside of the potential they already had & the fuzzyness of the edges of what we conceive normal to be. In spite of all the claims-chelation, special diets, or hormone injections, there is no cure for autism- no magic pill or therapy, either behavioural or medical, that will remove the autism from a person. Autism is a way of being, it’s how one’s brain is “wired” neurologically. And although there are no cures, there are many non-toxic therapies: behaviourally-based, speech therapy, physical & occupational therapies, & some medicines that treat specific symptoms such as anxiety, that can help a person with autism reach their full potential. At the heart of it all is, I believe, how we as a society value people. If a person does not achieve the goals our society holds dear- go to college, get married, have a family, or is deemed not to have the potential to achieve these goals, then they are written-off as useless. The parallels of the autism advocacy movement to the disabilty-rights & gay-rights movements are striking & much discussed in the online community that I am part of.

Along with the therapies that help our son Brendan, it is the supportive “village”, including this church community, that has been vital to our family’s so far successful coping with autsim. There are those here today who remember when Charlie & I first stood up in Joys & Concerns & shared that Brendan, then 5 years old, had been undergoing testing which revealed that he had severe developmental delays. About a year later we stood before this community again to say that Brendan had been diagnosed with Aspergers Syndrome, an autism spectrum disorder. A few months after Brendan’s diagnosis Charlie & I hosted a “home service” with close friends from church, where we shared our fears & hopes for Brendan’s future & found support for the journey ahead. The Hymn of Reflection that we sang today was the one we chose for this home service, because it states our hopes for Brendan so elegantly. In the 4 years since Brendan was diagnosed with Aspergers he has collected more diagnoses- Obsessive Compulsive Disorder & Tourettes Syndrome, each of them part of his particular autism spectrum characteristics that have unfolded as he has grown older, each one a new challenge to understand & accept. The acceptance does not just appear like magic, but does come in time. Acceptance is essential if we are to remain respectful of Brendan & who he is.

Part two will be posted tomorrow...

Friday, November 24, 2006

A good holiday for B...

Zoom! Thanksgiving's over. C's parents are still here, flying back to Pittsburgh after lunch (there is a spirited Monopoly game going on as I write). Nearly everything brought out for dinner yesterday has been cleaned & put back & the house, although still fragrant with curry spices, is looking almost normal.

It was apparent, though, yesterday morning that things were different at our house. B was rather at loose ends & having trouble focusing on doing any of his usual things. Even wasn't able to log-in to Adventure Quest early in the day, as he'd hoped, & he wasn't terribly interested in playing with legos or anything else. He & dad tidied-up his room in preparation for cousins in the afternoon. I began cooking around 10:00 am, & C & his parents went to church (to a union Thanksgiving service co-sponsored by local churches, temples, & more recently, mosques, that our church has taken part in for over 100 years) at 10:30. B still couldn't settle on anything to do & was looking weepy, & I had about half an hour before I could take a break, so I convinced him to watch an episode of Kim Possible on my laptop until I could join him for some InuYasha. He was in much better spirits after the InuYasha break & decided to play AQ until lunch. My mother-in-law had been fussing at us yesterday about how long we let him play in the afternoon so C & I had decided that while they were at church would be a good time for him to play... this is one of the situations we find ourselves in on our infrequent visits with C's parents. His mom does not understand the rhythms of life with B (& has little interest in understanding them, unfortunately) & so misunderstands our allowing B to manage his most difficult time of day (during a difficult & unsettled holiday time) in the best way he knows how as over-indulging him. Sigh.

Other than a half-hour InuYasha break & another half-hour for lunch, I cooked right up until 2:00 in the afternoon. C stripped the dining-room table after lunch, put in the extra leaf, & then put the good tablecloths on (after I unearthed them :) & got out the good china & silver, while B & his grandparents played Monopoly on half of the newly-clothed table. As I mentioned previously, we had decided to bag the turkey this year (rather a relief to vegetarian me) in favour of a veggie curry meal with all the fixin's (raitas & chutneys & rice :). I made 3 different curry dishes, one with hard-boiled eggs, one tofu (in the place of panir cheese), both in a tomato base, & then a dry pea & potato dish. My plan was to get it all cooked early, then put them all in casseroles in the oven to stay warm so that I could visit with family, rather than be sequestered in the kitchen. I had made notes on what needed to be started when, prechopped all the raw ingredients, & premeasured the spices. The only hitch was that they all had to be cooked simultaneously because my good casseroles are hand-thrown ones that can't be put into a hot oven or they'll break, so I wanted to get everything into them, warm, stuff them in the oven, & then keep it all warm until dinner. I got a bit boggled by the 2 tomato-based ones, since the spices were different but they basically looked the same, & kept having to stop & think before dumping things in pans... But it all came off & C helped me wash-up while the oven heated up. I had time to wash my face & fuss with the now-set table before everyone arrived.

Keeping busy is a good thing, especially when facing the unknown. We have not shared a holiday with my brother & his family (wife & 3 boys) in over 5 years, due to the rift cause by our father. Around the time of our father's death my brother decided that he wanted to reconcile with the rest of his family & we've been glad to be back in contact with them. It has been a bit nerve-wracking, though, since it's been so long since we've seen them & I am not comfotable with the unknown, particularly when it comes to the behaviour of family members... I've had some moments of jitters contemplating Thanksgiving Day over the past couple of weeks, but today was too busy to think about anything but producing an edible feast. B was clearly looking forward to seeing cousins he didn't really remember, though, & that was a comfort.

Everyone started arriving about 3:30 (my in-laws were already here)- my mom & brother & family, then our friend Tomoko. Things were a bit awkward until Tomoko arrived & we got to introducing everyone. Seeing my brother's boys for the first time in 5 years was amazing, they are so big & changed! The oldest is 16, & we definitely made the right choice to sit him at the "adult table" rather than the "kid table" in the kitchen, since he's very grown-up now. The next oldest is 13 & the youngest just a few months younger than B & they were quite happy to be in B's company. The younger 3 followed B up to his room & we didn't see them until dinner (C brought them soft drinks & a bowl of cheetos for social time :). The biggest change, though, was in my brother. He looked beat-up, tired, & was limping. He's had a terrible battle with ill-health ever since he was nearly killed in an auto accident when he was 18 (nearly 30 years ago) & I know he's had difficulty with addiction to various pain-killers, too. It made me sad to see him look so tired- he's my younger brother, so I was not expecting him to look older than I felt, I guess.

While the boys played, we adults ate cheese & crackers & chatted for about 40 minutes, then I started setting things on the table for dinner. We got the boys set with rice & cheese & veggies, & the grownups set-to the curries. We ended-up saying "ittadaki masu" for grace (it's the traditional Japanese grace, said before every meal) & then we explained it to everyone who was not taking Japanese (not everyone could say it very well, though :). The meal went really well- the curries felt like a traditional Thanksgiving feast, complete with not having enough room on your plate for all the food :) I don't make a hot (too spicy) curry (it turned out that had been a worry for some folks) because C can't handle it, so there were lots of people going for seconds. B & younger cousins finished first & tore back upstairs to play. We coaxed them back downstairs for dessert (my mom made pumpkin pies, my mother-in-law had sent us a fruitcake, & my sister-in-law made pumpkin bread), but they were having too much fun to hang with us much. Before we knew it 7:30 rang on the clock, & my brother & family got ready to go, since they had 1 1/2 hours of driving to get home. Tomoko & my mom followed them, & then my in-laws went back to their hotel.

I can't remember that last time that B had so much fun with other kids. When I asked him later what they'd done together, he said they'd helped each other play some computer games, played with his spybots, got the spy gear out, messed around with legos. We barely saw him the whole time they were here & there was little evidence of tics or overwhelming OCD thoughts. After our tired kid fell asleep while I was reading to him, C & I sat & talked about the day. We marvelled by how functional B had been, especially compared to playing with other kids. B really has just one friend (his best buddy, E) that he can spend time with without eventually having trouble with tics or anxiety popping up. It was such a lovely thing to witness B havinng so much fun. We adults didn't do too badly either. The atmosphere was friendly, if a bit reserved due to the long time since we'd seen each other. Tomoko seemed to have had a good time at her first "non-traditional, traditional Thanksgiving". My mom was in heaven, having her family back together again. We felt pretty good about putting it all together.

I didn't have time to check-in to any of the blogs I usually read yesterday, being so busy with dinner & family, but I was very sad to discover that yet another child with autism has been murdered by a parent. It adds a sobering note to the thoughts I've been having all week while struggling to collect these same thoughts enough to write my autism sermon for this Sunday. It underscores how different the experiences of autism families can be, & especially highlights how much we as a society need to work on providing support for parents & for changing our attitudes about whose lives are considered valuable & whose aren't. During lunch with my in-laws today (our last before they flew home) my mother-in-law provided an interesting counterpoint to my sadness about the murdered child. She was remembering Thanksgiving 43 years ago, right after President Kennedy was shot, & my husband, then a baby, was in the hospital for a yet-undiagnosed illness that caused serious vomiting. She said that it had been hard to find anything to be thankful for, that Thanskgiving... but here we all are, so many years later. While there's life, there's hope- that's what my grandmother used to say. How can we help people hold onto their hope? How can we change the attitudes of those around us so that hope is easier to hang onto?

B has definitely been coming down from the holiday excitement today. By the time his grandparents left to catch their plane, after lunch, he was having more trouble with tics & his lego-building was giving him anxious thoughts (one room he'd built in a fortress he'd been making from Hogwarts Castle pieces was somehow "contaminated" & he needed a lot of help managing his fear about what he thought he'd made...). Oddly enough, what helped was a shopping expedition to the manga store (we got a couple of InuYasha actions figures for him to earn), the fabric store (fabric for a wizards robe he wants to make with me), & Borders (to find the manga I really wanted that the manga store had sold-out of). After a snack at home he tried getting logged-into AQ, but no luck (& lots of frustration & anxiety) so C decided to play legos with him & they're still at it- no anxiety, just lots of action & creativity. Tomorrow I REALLY have to finish my sermon. Stay tuned...

Tuesday, November 21, 2006

Inching into the holiday...

It's amazing how easy it is to become disconnected from the usual flow of life when holiday time comes around. For some rreason I'm really aware of it this year, & it's helped me to empathise a lot with B's difficulties when the normal flow of life is interrupted...

C's parents arrived yesterday afternoon from Pittsburgh. They flew up & rented a car, then got themselves settled in their hotel (where they've stayed while visiting for 10 years now) while I picked B up from school & took him for a regular visit with his psychologist. He was happy to hear that the daily schedule they've worked-out for B at school (with incentives for staying in his classroom for lessons) is working very well. I was also able to check-out the latest, rather disconcerting, development... B started making a new tic vocalisation over the weekend, & when I asked him, as usual, what was triggering it, he said "nothing, mom- it's just happening". This is the first time B has had Tourettes tics that have not been triggered by OCD anxiety. Up till now we've been able to modify the tic frequency by modifying his environment to minimise triggers. B's psychologist told us that non-triggered tics are simply not modify-able. They are neurological firings that have nothing to do with volition, so there's no way to behaviourally deal with them. This was good to know, although I'll admit my heart sank a bit, too. It feels as though B has moved into a new phase of things & I'm not quite up to speed. One thing that occurs to me, though, is that this may be fallout from B's zoloft dosage being lowered by half over the past month or so. In either case, I made sure that B had heard what Dr. M had said about this new tic, & assured him that we'll just do our best to live with them. B doesn't seem worried much about them, which is good, & I've let folks at school know that these must be ignored as much as possible.

B had a nice visit with Dr. M & was in a good mood afterward, looking forward to seeing his grandparents at dinner time. C was working a bit late, so we'd arranged to meet them at their hotel & eat at the restaurant there. Neither C or I had thought much about the meat thing (unfortunately)... We met them in the lounge & then as we moved into the restaurant, B immediately put Rufus over his nose because of the smells (of food). He sat like this at the table until his Shirley Temple arrived, which he drank with his fingers pinching his nose (for the first bit). The drink perked him up, & the waiter was very attentive, bringing B another as soon as he was finished with the first. After that, B had to go to the bathroom, & so dad took him, & our meals arrived while they were gone. What B had thought was pizza was really flat bread with tomatoes & cheese melted over it, which he rejected, so I ordered him a salad, but the worst part was the meat on his dad's & grandparents' plates... he covered his face & moaned quietly, wriggling in his chair. His grandmother vaccillated between asking him if he'd like to move between she & C (away from me) & asking loudly how the other meat dishes were. B just sat & writhed & moaned. I ate quickly, trying to figure out what to do, & decided that I'd take him back to the lounge where there were comfy sofas & candles, & where there were no smells to bother him, & where I could finish my glass of wine :) He agreed immediately to go to the lounge, & relaxed very quickly once we were there. We could hear his dad & grandparents chatting, which I found comforting. I told B that I thought he'd done a pretty good job of holding it together (hey, he didn't scream) & told him that he was different than most people in his feelings about eating animals, & that was ok. He told me that every time someone cut into their meat he felt like they were cutting him (!). Poor kid. Once he was calm I asked if he'd like his salad (which he'd been too upset to eat at the table) & he said he did. So he munched greens & I sipped wine, & I realised that I was having a nice time. C & his parents were nearby, B was comfortable, & I had a really nice glass of reisling to enjoy. It was one of those stolen moments, when you never expect to be having fun, but you are. I have been thinking so much lately about life with B, in the midst of writing my sermon on life in Autismland, & it was nice to be living one of those unexpected times that I've been trying so hard to capture for my sermon.

B had school today, so C & I spent the time with his parents, visiting our neighbour's studio (she does lovely things with herbs, fabrics, photos of flowers, & teas) & then out to lunch at the tea place Roo & I visited just a couple weeks ago. We picked B up afterward & they got to see B's school for the first time & meet a couple of his teachers. B was in a great mood, having had a really good music class & anticipating 5 days off school :) B opted out of a trip to the bakery with grandparents & dad, & stayed home to watch some new InuYasha with me. While we all were having afternoon tea (they'd bought petit fours at the bakery) B decided to "mine" the basement for some lego sets that had been put away. He happily rediscovered them in the kitchen while we had tea in the dining room, & even was fairly cheerful about taking them all upstairs to his room (by himself!) while I got ready to make dinner. He watched some of his Narnia dvds while I made dinner (the old BBC ones, not the new movie) & was good company at dinner. He's been really good about accepting hugs & kisses from grandparents while at home.

Tomorrow will be our first day all together, although dad & grandparents will be going to an art exhibit in the afternoon (it's always good to have a break :). We have decided to order out for pizza tomorrow, instead of eating out as originally planned. I'll pre-watch more InuYasha tonight, so we'll have something fun to do together tomorrow. So far, so good :)

Sunday, November 19, 2006

Diary of a mad autism mom, Part 2...

It's funny that knowing ahead of time that things are going to be busy doesn't really prevent or alleviate the feeling of being overwhelmed. I don't know why that is... you'd thing that "forewarned is forearmed" would be a truer truism.

The in-gathering of the charity knitwear at my handspinning guild meeting went pretty well. All of my efforts & planning paid-off & we gathered a lot of neat items to be donated. The funny judging went well, too. C wore a white coat over his tie-dyed shirt & the lawyer friend wore a suit & tie over a denim shirt & sneakers. B did pretty well for a while, considering that there were at least 60 people at the meeting & it was very crowded, but toward the end he just lost patience & would not be distracted, & he ended-up nearly melting down before we could go. C was able to take him out into the hall where there were fewer witnesses while I gathered all the knitwear to take home. I was not terribly perturbed by any of B's behaviours, since I live with them daily, but I got the sense that some folks were worried (in a kindly meant way). There was a potluck lunch, but we ended up going out for pizza on the way home, which was fine with us. It was quieter at the pizza place & B had the undivided attention of both parents again :) I was pleased by how engaged B was for most of his time at the meeting. He had fun coming up with silly award categories for things (one of the items I'd made got the "best scarf for a tapeworm" award, accompanied by much giggling by B). Later in the evening, while C & I sat & processed our day, C said that he thought B would have been fine if things had moved along more quickly, but a group of at least 60 people (there were some other things going on during the judging) does not move along as quickly as a 10-year-old does, & B's tics became more prominent as his impatience grew... I wondered what some of these guild people thought, seeing my ticcing child- not that I feel worried, but I wonder if they realise that B is autistic, or if they care. The group is so big that I don't really know everyone. My friends certainly know B & about our life with him. It made me realise that B & I rarely go outside our established circle of school & church. I know it's easier to live that way... I wonder if it's a good thing, though?

After C went to bed around 10:15 last night I had intended to clean-up some of the writing I'd done for next Sunday's autism sermon for a half hour & then take a shower & get to bed well before midnight. The more I edited, the more I wrote & at midnight I made myself stop. Sigh. As I finished my shower I realised that pretty much everything I'd written was rubbish & would have to be redone. Big sigh. I had thought that having so much to say would make things easier, but in fact it's making things more difficult, as I get caught up in details when I really need to keep my perspective more global. I realised that I am also feeling a lot of pressure to really do this "right", to make what I'm saying reflect what I've learned from reading the blogs of others in the autism hub as well as my own experience. I really want everyone who's a regular reader to be proud of me. It's driving me crazy, though. I write & write, & then in restrospect I realise that I've forgotten something really important. Tonight I will yet again, dump most of what I've written so far & approach it all from another perspective.

On top of all this, there is Thanksgiving to be prepared-for, with my in-laws arriving tomorrow evening & 12 for dinner on Thursday. And then on top of the top (or, perhaps, below it all) are some upheavals occurring at church with the music programme, which I'm in involved in as chair of the music committee. I met with our minister & a board member (also a music committee member) last Thursday to compare notes & dissatisfaction with the way things are going with our new music director & to figure out some strategies. This morning this same music director was 45 minutes late for a regular choir practise, & didn't phone in until the last minute, so we had no idea of what was going on. We organised a pick-up rehearsal, but my gut was churning so much by the time he arrived that it was a miracle I could sing at all. There are 3 big events before Christmas that involve the music department & I really want things to hang together until after the holidays, when I can put some time & energy into shoring things up... I'm wondering if I'm going to have this luxury, though.

The blessings that I can dredge up from all of the chaos: B is in school through Tuesday, so I have time to write, grocery shop, & get my act together. C is off as of Tuesday, so we'll have a day with his parents before B is let loose from school. Quite a few people at church touched base with me today to say they're looking forward to my sermon next Sunday. That actually relieved the pressure some (shows how much pressure I'm feeling...). We had a nice japanese lesson today & Tomoko is joining us for Thanskgiving dinner on Thursday. Two big events (Thanksgiving & my service) will be over by this time next week... Then on to the next insanity!

Friday, November 17, 2006

Brief update...

It has been a busy & relatively uneventful week in our corner of Autismland :) A blessing, really. B has had a pretty good week at school, with no huge ups or downs. They went on a field trip to a local kids' museum to attend "Sleuth School" on Wednesday & I went along to help supervise. I was assigned a group of 5, 4th-grade girls & I had a blast. They were so into it & I told then they could start their own detective agancy any time, in my opinion. B & 2 other boys were with his consultant teacher, Cheire, & he seemed to have a good time solving clues & running around looking at things. He had us all laughing at one point- there was a fairytale giant (probably 10 ft. tall at least) whose arms could be moved by levers & had a microphone where you could say things & the voice would come out in a giantish bass. B was singing Weird Al tunes into the microphone & flailing the arms around- it was a hoot.

The evening right after I last posted, B mentioned that his eye ached. I looked at it & didn't see anything amiss, but cut him off from the computer in case it was causing a headache... it was dinner time anyway. During dinner he was rubbing the eye & then said that it was a "sharp ache" & getting worse. After a brief discussion of semantics (because, if he tells me something aches, I am not thinking sharp pain...) I asked him if he'd like some tylenol, & he said yes. After choking down 4 huge chewables he lost his appetite- due ot the overwhelming fruity flavour or the pain, I'm not sure (I did calculate the total dose of 4 chewables & have since purchased a bottle of regular-strength tylenol, of which he'll only have to gulp down 2 with water, something he does daily with his other meds). When he said the pain was moving into his forehead I decided to give him some sudafed, too, in case it was sinus. B then headed for the sofa, moaning. I got a warm cloth for his head & sat with him, holding the cloth on his forehead for him & wishing that daddy the doctor wasn't at work late. The pain wasn't easing-up at all & I was worried that B might be having a migraine, something I've dealt with for years, but can't imagine trying to help B cope with. He moaned occasionally & I offered to put on some music, but he said weakly that he just wanted to "chat", & occasionally told me things about his Adeventure Quest game. We sat like this, with my refreshing the warm cloth every so often, for about 40 minutes until dad came home. B sat up to greet C & said he was feeling a bit better. We got him upstairs & into his jammies about an hour earlier than usual. By the time he snuggled into bed for a story, also much earlier than usual, he was feeling much better. C's opinion was that it was sinus & he was glad that I'd tried the sudafed... me, I was ready to throw just about anything at it, to make the pain go away. B woke up feeling fine the next morning. thank goodness! B's high pain threshold can be a good thing, but it also means that any pain he reports must be pretty severe, which can be scary.

I was looking around the house this morning, noticing how tidy everything looked (including B's room floor & the tv room- amazing!). We cleaned up so the house could be vacuumed last Monday evening, but things are never still tidy by Friday morning... & I realised that I have Adventure Quest + busy week for mom (meaning very little energy after B gets home from school) to thank for it (if thank is the right word...). B has been very focused on AQ these days, & I although I have very good intentions for after school activities (work on japanese, make stuff), I just don't have the energy to follow-through in the afternoons these days. Sigh. B is ecstatic- he's been trying out all sorts of personae- ninja, necromancer (he didn't like that one very much), werewolf (!), on top of his usual mage & wizard roles in the game. His frustration level waxes & wanes- sometimes I know he needs intervention when the swearing gets loud, sometimes it's when he starts talking the the monsters as though they're in the room. He always manages to come back down to this planet, though, so I feel ok about letting him continue with the game. Probably the wildest adaptation B has made to the game concerns the fact that he can't always get into it when he first logs-in. We helped him cope with this frustration by setting a timer for 10 minutes, & then he plays at another site & only checks AQ when the timer goes off. He can calculate his chances of getting in soon by whether the number of people waiting to get online goes up or down... This way he minimises obsessing about it all & keeps his cool. These days he just grabs the timer on his way through the kitchen & does it all by himself. C & I heard him cheering one afternoon, not because he'd been able to log-in immediately, but because there were few people waiting in the queue... he happily hummed along & was logged-on in no time. It's amazing how adaptable my kid can be.

I am still writing furiously for my sermon in 1 1/2 weeks, in between church meetings, school trips, & getting ready for an event that I've planned for my handspinning guild meeting tomorrow. Our charity effort at guild is called "Warm Extremities" & I took over as the organiser just a couple of years ago. Members & friends of the guild participate by either donating raw materials, spinning fiber into yarn, or making finished yarn into garments that can be donated. We gather everything that's been made over the year at the November meeting & then it is donated before the holidays (most goes to a local women's prison, so the prisoners can choose items to give to their children as holiday gifts). Back when B was a baby the friend who organised it came up with the idea of having a fun judging of all the finished items, to make it more than just handing stuff in, so she asked her husband, a lawyer, & C, a doctor, to be guest judges, calling it "a doctor & a lawyer judge knitwear". They came up will all sorts of goofy awards (like "the cat in the hat" award for the tallest hat) & certificates were given to the people who made them. We did this for a few years, then someone else took over & did something different. When I took over as organiser I decided to revive this judging & it was well-received last year (B wore his Sherlock Holmes coat, his Halloween costume that year, & helped out :). This year I added B as an official judge, & billed him as the only one of the 3 who has actually spun wool or made something from handspun... B was, as I'd hoped, very charmed by receiving special billing & official judge status, & is actually looking forward to going. Heh heh. Sometime advanced mommy planning actually works...

Tuesday, November 14, 2006

Breathing space...

This week feels like the breathing space before the big holiday & I'm trying to do as many things as I can while there's room to breathe... without burning out, of course. B is still unsettled on his new, lower doses of both zoloft & seroquel. He had yet another cow yesterday morning over the shirt I got out for him to wear to school (a chocolate brown colour with a reddish tinge) so I decided that he is picking out his own clothes from now on. If he wears the same things over & over, so be it. B has shown absolutely no interest in choosing what he wears, only rejection of anything that even shows a slight resemblance to the colour red, so he was rather surprised by my handing the responsibility over to him. Ironically, this morning he chose his tie-dyed boxers with a big splash of red on them from the bottom of his undie drawer, rather than the black & white ones on top. There really is no logic to OCD...

While B was at school I worked on the sermon I'm giving at my church in 2 weeks, on autism & being an autism mom. I had awakened at 5:30 am Monday morning, as I usually do because that's when C gets up for work, but instead of falling back to sleep I'd stewed & worried about the up-coming weeks, my so far unwritten sermon & plans for Thanksgiving taking turns preventing my preferred activity of sleeping... So I decided to start out easy by choosing the hymns & readings for the service, but found myself so inspired that I segued right into writing the sermon. For the first time in nearly 30 years of writing sermons for services at my church, I think I may have too much to say. I've decided to just write, without editing anything out, & then put it all together after I run out of steam (if ever!). I stopped after 2 hours, to have lunch, & feel like I've gotten a good start. Good thing. I realised that next week is going to be so busy with family in town & the holiday itself that I have to have it ready by this Sunday at the latest...

B had a good morning at school yesterday, but quickly fell apart in the afternoon when math time came. It wasn't that he didn't want to do the math, it was that he didn't want to do it in the afternoon. Cherie, his consultant teacher, intercepted me on my way in to school to let me know what was up. She was mostly worried that he'd vent his school frustration at home, since they hadn't been able to find resolution before I'd arrived. When I found him he was in a closet (his speech therapist patiently standing by the doorway), red-faced & unhappy. He wasn't coping well with choices- there were too many, then not enough. He had trouble calming down enough to get things from his locker to go home, but he was pretty calm on the way out of school & I didn't ask any of my usual questions about how the day had gone on the drive home out of respect for his fragile composure. We had snack & then he was able to get on to Adventure Quest immediately- a blessing! I let him blow off steam for quite a while before asking him to take a break, & he was quite happy to lego for a while before going back to the game. He & C legoed together after dinner, in between B playing AQ, & then they tidied up his room to be vacuumed this morning. It took more than an hour of reading to B to help him get to sleep- C took the first half-hour reading "Borgel" by Daniel Pinkwater (laugh-out-loud funny, that one is) & then I followed with more of "The Grey King". After B was asleep C & I composed a letter to his psychiatrist sharing our observations about B's current functioning on the lower dose of anti-depressants, to let him know that we're seeing some significant changes- weepiness, emotional volatility, & difficulty settling himself to sleep. This particular doctor, whom B has been seeing only since August, is not easy to reach by phone, so we decided that snailmail would be best. If we hear from him before the next appointment, then that's great...

As mentioned, B chose his clothes for the first time this morning, sifting through his drawers to pick out a blue shirt (blue's his favourite colour) & blue socks & the cargo pants on the top of the pile. Note to self: get that indigo vat fired-up but soon! There are at least 3 shirts waiting to be dyed blue, I just have to find the time! He was a bit down about going to school this morning, but I reminded him that there was music class this afternoon, & the prospect of a bowl of miso soup & leftover fried tofu cheered him up as well. B has taken to eating miso soup for as many meals as we'll allow, with the addition of rice or tofu as available. He'll be right at home when we go to Japan... I think part of the glamour is that he can make it himself, & part is that he just really likes it. Hey, it's really nutritous (miso, seaweed, tofu...), too. :) The only hitch this morning came when he tried to take his pills with soup rather than bothering to get some milk or water. I was getting my own breakfast when he ran to the sink, spitting. The pill melted instead of going down his throat... After figuring out which one it was I gave him a substitute, & we both agreed that soup is not good for taking pills.

Unlike most schooldays, B had more trouble in the morning than the afternoon today. I had an inkling when I thought I heard B yelling while I was doing my greeter job at the school door, but I knew they would be able to find me if I was needed, so I didn't go up. B was with his OT, Ann, when I got there, playing Rush Hour Jr. She asked B if she could tell me about what had happened earlier, & when he mumbled a bit I asked him if she could tell me out of his earshot & he agreed. She said he'd been really upset when she got there, too much confusion in his classroom had unsettled him, so when they left for his OT session she decided to use this opportunity to help him work on his calming techiniques. I was delighted- B has had a tic about words like "calm" & "relax" & "deep breathing" since the OCD began, 2 1/2 years ago, so it's a very difficult subject to discuss with him. But, for some reason, Ann can say these things without getting any negative reaction from him. She showed him how to put his head on his desk & tune things out by concentrating on his breathing & he tried it with her. She was really pleased by how well he responded & his readiness to move on to playing Rush Hour (I had to rat on B, since he's an ace at that game- his speech therapist used to play it with him in first grade & he got very good at it :). I told Ann how delighted I was that she can work with B on relaxation techniques, since we can't even broach the subject with him... I left him happily mowing through the game levels.

My next stop was the asian food store, since we're nearly out of miso soup :), then home for a little bit. I'm trying to do as many odds & ends as I can, so I worked some more on a sewing project that I need to have done in time for the indigo pot (it's what's really holding me up with the indigo, actually), then pre-watched an episode of InuYasha (to see if B can see it too) while eating an early lunch. I had an appointment with the eye doctor at noon- my distance vision's been getting blurrier & blurrier over the past couple months, but I'd been trying to hold-off until the new year before having them checked because I only got these glasses last February, so there will be no insurance coverage. Alas, this past week the traffic lights have been so blurry it feels like I'm seeing double, so I called for the appointment... &, yes, I need new glasses :( Well, :) really, since at least I'll be able to see again, soon...

B was still in music class when I came to get him this afternoon. They were rehearsing for the musical, & standing around the corner (so he wouldn't see me & get distracted) I really enjoyed hearing the kids, including B, rehearsing their lines. He's playing the father in "The Velveteen Rabbit" & managed to send the whole class into hysterics when he embellished one of his lines (he was drinking coffee) with a burp & a fart :) His teacher humourously requested that he leave the sound effects out... B was focused & happy & it was wonderful to behold.

We've had a quiet afternoon, watching some InuYasha while drinking ramune & then on to AQ, for B, while I made a dent in the holiday-shopping list by shopping online. I finally found us a tree! We've had a 4-foot silver tinsel tree (aka "the emergency tree") for the past 3 years, ever since I had my first-ever, real-live asthma attack when we brought the real tree into the house that year. C & I were both in shock when that happened, since I'd been fine with real trees my whole life before then. I bought the silly little tinsel tree in the aftermath, at Target, because I was so unhappy at the thought of never having a real, good-smelling tree again & couldn't face a fake tree that was trying to look real. The year after, C thought maybe I'd get-over whatever it was that had triggered the attack if we waited a year or two, but my internist told him he was dreaming (it showed how much in denial C was, too, about the tree thing, since not only is he an internist & should have known better, but my doctor was one of his interns years back... :). Last year, year 3 with little tinsel tree, we hardly noticed at all that we didn't have a real one. It had become part of our traditions (which include celebrating Hannukah & Yule, as well as Christmas). So, this year we decided it was time to get a 6-foot tinsel tree. I had seen one at Urban Outfitters last year, so I just got online & bought the thing. It's done, & the 4-foot tree already has been promised to a friend :) I also worked my way through a pile of catalogs with the pages turned-up at likely gifts for friends & family. C & I have our 18th wedding anniversary coming up, too, on December 3rd, so I needed to get cracking on a gift for him. With more of the shopping done, I should be able to at least sleep better in the mornings! It's crazy toboggan ride, this time from Halloween to Christmas, & I've learned that I do my best if I keep plugging away, little by little, & try not to leave anything to the last minute... try...

Sunday, November 12, 2006

Japanese, left hands, & "Flushed Away"...

Whew! Another lightning-fast weekend has almost flashed past.

C worked yesterday morning & I was determined that B would not spend the whole morning at home on the computer, so I traded him some time playing our new katakana scrabble game for some time watching 2 new episodes of InuYasha, which left very little time for computer games. B was much more enthusiastic about playing the game when I got out the real scrabble board to play it on, although we don't have a scoring system set-up yet & aren't actually picking random tiles with which to make our words- we don't have enough japanese vocabulary to do that yet :) The fun of using the katakana alphabet for this game is that it's the one that's used for translated english (& other language) words, so you can fudge it a bit. I found myself spelling "ku-kee" (cookie) & "chyoo-bakka" (Chewbacca) on a couple of my turns. B was amused when he sounded them out :) After lunch we had a japanese lesson & we were psyched to show Tomoko our new game & to play it with her. She came prepared with another InuYasha conversation for us & B wore his InuYasha hat of course. Tomoko alternated between giggling over B's near-perfect mimicking of InuYasha's voice (from the anime's japanese soundtrack) & reproaching herself for teaching him to talk like a "tough guy". B seemed to have trouble sitting still during lesson & kept jumping up to get things to fiddle with, or saying things very loudly so that I kept having to ask him to tone it down. He's never been like this before during lesson, but Tomoko just calmly followed B's lead, which was wonderful. After we had played a few rounds of our katakana scrabble (which she thought was wonderful) B went off to play legos with dad & she & I had our usual chat about everything from grammer to cultural differences to american customs.

Today I finally got around to asking Tomoko about the word for "autism" in japanese, something that Kristina had asked me about in her AustismVox site a few weeks ago. The word itself is "ji-hei-shyou" (じへいしょう)& the kanji means: "ji=self" "hei=closed/restricted" "shyou=symptoms". Tomoko believes that the word is not indigenous to Japanese culture (as something that has been recognised for a long time) but a translation from another language, which makes sense to me, since the english word "autism" comes from the greek ("autos=self"). We talked for a bit about how kids with special needs are perceived in Japan. She said that it's difficult for a culture like the japanese, which values homogeneity & "the group" so much, to value the needs of individuals. She said that there are special schools for kids with obvious special needs & that teachers who work in these school are highly trained & better paid than regular schoolteachers (that's something, at least). She said that kids that go to special schools are rarely mainstreamed. We talked about how difficult it is for japanese kids with Aspergers & other, more subtle, differences because they partially fit in & are less likely to be sent to the schools for kids with special needs. They end up being bullied by other kids as well as teachers for their differences, & their families tend to suffer more shame because of their kids' differences. Tomoko did say that the disability rights movement in Japan has made some progress in the past few years. A man with congenital deformities became somewhat of a celebrity a few years ago, publicising the message that he felt he was ok just the way he was. She said that he had such a genuine way of presenting himself that many people were impressed by him. I opined that he must have one heck of a family, to have raised him to be so comfortable about himself in a culture where his differences are something shameful. It rather reminded me of the disability rights movement of the 70's here in the US, something I participated in actively, when disabled people began speaking or themselves & challenging the general perception of the disabled as people to be pitied. Talking to Tomoko about the current state of acceptance of neurodiversity in Japan certainly made me feel grateful that we live where we do. There are challenges here, for sure, but there is also a lot more acceptance of "lone wolves" here in North America than there is in Japan.

B managed to get himself a spot in Adventure Quest yesterday afternoon, so he played before & after dinner. He's been finding the lack of "free" spots very frustrating (if you pay a one-time fee of $20 you get on any time, so B is saving-up to buy a membership), sometimes bringing him to tears. After dinner when he was playing, there were more & more angry sounds & tics coming from the computer room (really a sun porch that's an extension of the living room) the longer he played. Finally, I asked him what was going on & he yelled angrily at me that the game was too hard. Trying to help B keep a balanced perspective on computer games is really hard, & it's also really annoying when the games become so important to him that he forgets to be civil... After trying to problem-solve a bit I finally asked him to please take a break from the game, & he stormed off in a fury. C followed him upstairs, since B made it clear that he didn't want me around... sigh. After about 15 minutes of B & his tics getting louder & louder I finally went upstairs. I told him that I thought we should work things out, since he was obviously really angry with me. He was in tears & said that he didn't understand why I'd asked him to take a break. I reminded him that computer games are supposed to be fun, & when they make him tic uncontrollably then it's a sign that he needs to take a break- find a new way to do things, think about his strategy, get some help. He was angry, too, because I had used the words "just a kid" during our interchange & he said it made him feel bad... I realised that I wasn't being clear about what I meant, & explained that I meant it to mean that he was less experienced than a teenager or adult might be, which was appropriate for him. He's "just a kid" & can't expect himself to function like an adult. He seemd to understand, & I told him I'd try to be clearer with my language in the future. In the end, we decided he could go back to his game, as long as I sat with him & helped him with his strategy. I'm not sure why (perhaps the autism, perhaps his being 10) but B has trouble keeping track of all the resources he has to play the game. He has lots of different kinds of armour, wizard robes, shields, pets, weapons (arrgh!), magical implements, but he rarely tailors his resources to his situation, so he loses valuable points when encountering monsters. As he played, we looked together at the attributes of the monster he was facing & decided which of his protective & offensive items would be best to use. We tried his different pets out on different monsters to see if there was a pattern there, too. We kept track of his hit points & mana points & tried to balance how much mana his various spells required with the outcome of their usage. This really seemed to help B's gameplay & he also seemed to be enjoying the game more as we played.

B had a bath next & then he played a bit more before getting ready for bed. Friday night he had a lot of trouble falling asleep- perhaps due to the reduction in his seroquel dose? It took C & I tag-teaming until after 10:00 (B went to bed at 8:45) to get him comfortably asleep. Last night I just decided to read to him until he was sleepy... I started at 8:30 & read till nearly 10:00 before he was asleep. Whew! C & I decided that tag-teaming is better, until we have this falling asleep thing figured out (again).

This morning he was up a bit before 7:00 am, which was better by his standards, sinc ehe had some time to play. There were no protests about going to church, & have been none since he's been able to play Adventure Quest on the computer in the lounge while we're in choir practise :) During breakfast the topic of "Q1" (B-speak for his left hand) came up because it was causing a tic. I took the opportunity to ask B how his left hand feels- does if feel differently than his right? I have been wanting to bring this up with B ever since tera and zilari commented on this post that B's OCD problems with his left hand might have something to do with his proprioceptive difficulties (thanks again for your comments!!). He responded that sometimes it feels like his left hand is "giving off radiation", which C interpreted to mean that he might have some tingling or spotty sensation in that hand. I was immediately struck by the memory of B's OT, back in kindergarten, deciding to train B to be right-handed, since he was showing no preference in handedness. Up until that time I thought he might end-up a lefty like me, but we agreed that gently guiding him toward his right hand might make things easier for him... (nothing punitive was done in this process). It did make me wonder, though, if requiring him to establish a dominant hand might have upset his internal balance somehow, but C didn't think that would have happened (being a physician, C does have some insight into this). It would appear, though, that B is having some sensory differences with his left hand that has led to it becoming an OCD issue, which is good information to have.

B had some major tics in the car on the way to church, due to the coat he was wearing (no clue as to what about the coat was triggering him, though), & as we were trying to talk him down I remembered that I'd been thinking of suggesting that we go see "Flushed Away", so I brought it up & next thing we knew B was distracted from the tic thought & ready to think about going to the movies... When we got to church I reminded him of the strategies we'd come up with the evening before for playing AQ & asked him to come see us if he was having tics (he did just fine). My Sunday School class wasn't going to meet today (one of our two faithful youth was going to a conference) so I'd planned to use that time to work on my sermon coming up in 2 weeks. The other of my kids came, though, so I spent the time instead chatting about anime & manga & just hanging out. I had my laptop & showed him the pics of B in his InuYasha hat & some of B's manga drawings I'd photographed for my Jedi Workshop blog. This young man is a very talented artist & plans to pursue a degree in graphic art in college (he's a senior), as well as play football (he's being recruited by some major colleges because he's also a talented athlete). It was so much fun to just hang out & compare notes on manga & anime art, comic books, our thoughts about the casting of the Xmen movies. He gave me some recommendations for manga that he thought I'd enjoy. I realised afterward that there aren't many people in my life that I can chat about this stuff with. I'm pretty lucky to have such a great kids to hang with :)

After lunch we looked in the paper & decided that we could make a showing of "Flushed Away" if we left around 2:00 pm. B was really psyched- we haven't been to a movie in the theatre in a long time... We loaded-up with popcorn & drinks (for snack :) & just got in before the movie started. I had high hopes, not only because I've heard good things about this movie (thanks, Kristina :) but because we've been enjoying Aardman production films since B was very little. I saw my first, "A Close Shave" at a handspinning meeting, where a roomful of women rolled on the floor laughing at a sheep-oriented animated film. I went out & bought all the "Wallace & Gromit" short films right after that & have very fond memories of having "picnics on the moon" with B when he was 3 by spreading a blanket on the kitchen floor & eating cheese & crackers (with tea out of a thermos) while B explored the "moon". We loved "Chicken Run" & the more recent "Wallace & Gromit" movie, too. We were not disappointed by "Flushed" either. The combination of british humour, visual puns, & potty jokes was really good & I can't remember the last time all of us laughed out loud at the same film. The slug chorus was a hoot, as were the eclectic musical selections.

B tried to get on AQ after we got home, but got another screen telling him there weren't any more slots. I found him by the computer pushing the "refresh" button repeatedly, which didn't seem to be doing anything but making him more frantic about not being able to get on. When I suggested he do something else while he was waiting he burst into tears. We finally resolved things by setting a timer for 10 minutes, & every time the timer went off he could check the AQ site. I showed him how to tell if the number of online players was growing or shrinking, so he'd have an idea of how long the wait might be. He played some games at the lego site in another window, & finally- after about 1/2 hour- he was able to get into Adventure Quest. C convinced B to play some katakana scrabble after dinner, which B did half-heartedly for about 20 minutes, then we let him get back to his AQ game. It's almost jammie time, then we'll do some tag-teaming till B goes to sleep.

I've been noticing that B is much more intensely engaged with life since we've reduced the zoloft (in the process of trying to wean him off it). He cries more easily, is louder & more "in your face", & more obsessive about the things he really likes (like Adventure Quest). He's also better able to focus on his legos & the stories he makes up about them (C is trying to get some of B's "Professor Chris" story written down, since it's very interesting & involved). We are giving it all some time, hoping that B's emotional intensity is something we+he can learn to work with.

Friday, November 10, 2006

Relaxed day together...

Today was another day off from school, in observance of Veteran's Day. There are times when it seems the numbers of days off at B's school in November are greater that the days he is in school (not true, but if feels that way :), but we had a nice day together. For one thing, we got to sleep in until 8:00 (we're usually up at 7:00). I was really surprised that B was stil asleep when I got up- we'd recently reduced his evening dose of seroquel because he was sleeping right up to the alarm, so I had expected him to be back to his usual waking-up at 6:00-ish. I can't remember the last time he slept in till 8:00... He was in a pretty good mood, though, since it was a school holiday. B decided that he wanted miso soup for breakfast, having seen Kagome & her family having soup for breakfast on InuYahsa. I have some nice instant-type miso soup, & B put it together himself. There are 2 packets, one with the miso & one with flavouring. I showed him where on the packet to look to read what the flavourings are, in japanese of course, & he read them off to me without needing much help, then chose one & put it all together. I have a japanese-style water boiler that keeps the temperature of the water steady (I keep it set at 175 for green tea), so B just used that hot water for his soup. He asked for green tea, too, but we've been having B drink milk for at least 2 meals a day, to make sure veggie-boy gets enough protein. He pronounced his breakfast "oishii" (delicious). At some point in the proceedings B had put the InuYasha hat on, & we fell into making up InuYasha-inspired verses for the Weird Al (via Devo) song "Dare to be Stupid". We were challenging each other to make up verses for each character & had a great time :)

I had an appointment with the chiropracter right after breakfast, so we hopped in the car (B still in the InuYasha hat). He took it off when we got there & we conversed in japanese & made up more take-offs on InuYasha while we waited. I had swung by the anime store yesterday & picked up the recently-released (in english) Hikaru no Go volume 8, so B had that to read while he was waiting for the chiropacter to put my back to rights. C & I had brainstormed a list of things for B & I to do today, since I didn't want him to end up on the computer all day. With all of the japanese fun in the morning I'd had an idea for yet another activity, which is how we spent the next part of the morning- making our own scrabble-type tiles out of the katakana alphabet (using the computer & card stock) so we could play games with them. Both B & C are trying to learn katakana these days, so I thought it would be fun for all of us to be able to play word games in japanese. After I composed it all on the computer (colour-coding each "line" so that it'll be easier to learn) & printed out multiple pages, B helped me cut them out using the mini paper-cutter. This took us up right up to lunch. I had been thinking of going out for japanese, but we were on a roll, so I put some rice in the cooker & B had some more miso soup with his rice. I made onigiri with tobiko (little orange fish roe- yum!) on top for myself. We both had green tea with lunch & Halloween candy for dessert :)

After lunch B opted to lego for a bit, saying he was too tired to play any word games in japanese. He worked very hard on making some more models for his "Professor Chris" set (a very complicated story involving good guys & bad guys & robots & mole rats & lots of vehicles) & after a couple hours he came down for snack & to show me what he'd made- a library, for one, that opens & closes in a tricky way (way cool). We each had an apple for snack & then settled-in to playing with our japanese letters. On one hand, in japanese you rarely run out of vowels (as can happen in english scrabble) because all letters but one are tied to vowel sounds. The tricky thing, we discovered, is that the vowels are mostly tied to consonants, so it's harder to think of words using the letters of just one word (at the start of the game at least). B found the letters for InuYasha, & then I added InuTaisho (that's his father's name) to the "I" of InuYasha. B used my "shi" to spell "Shippo" & I used his "o" to spell "origami". We ended this game with B using the "mi" to spell "Miroku"- another character in InuYasha.

B finally got a spot at the Adventure Quest site (it's been really jammed-up lately) & played until dinner time. Grammie came over to join us for dinner & watched B play, while he explained what he was doing. She laughed when she saw the InuYasha hat (he had worn it most of the day) & said she really liked it. I was having a dinner disaster, myself... I had thawed pizza dough from the freezer by floating it in warm water, but the bag it was in leaked. When I retrieved the dough it was soggy. It was nearly impossible to get flattened on the pizza pan & had an unhealthy look to it. Time for plan B... Lucky C made that lovely cheesy potato casserole earlier this week. He & grammie had leftover casserole & B & I had fried tofu & rice. Grammie brought salad, thankfully. To try to recoup the disaster I made baked apples for dessert & they, at least, turned out really well :) Then we had a spirited game of "Fairy Queen" (a newer version of "Old Maid" where you want to end up with the Fairy Queen at the end because you get extra points...). B went back to his computer game & we chatted with grammie until it was time for B to get ready for bed. I read to him (we're now on the 4th book of the "Dark is Rising Sequence", called "The Grey King") but it didn't seem to help him relax like it usually does. After a "quick minute" (curled up in a lower quadrant of B's bed, since his plushies are all still tucked under the covers so that they look very like another person in bed with him...) he asked for dad to come up for a "quick minute" also (said he likes variety). Dad finally left him with a flashlight, but I can hear him ticcing right now so it doesn't appear that he's going to fall asleep any time soon. Sigh. Better get upstairs & see if I can help (C's on call tonight & working tomorrow morning, so is trying to get to sleep himself). All in all, though, & nice day together with B.