Friday, June 30, 2006

Soapbox time...

Today began in an interesting fashion... B had been watching "The Empire Strikes Back" (he gets up pretty early, so often quietly watches a video or dvd until the rest of us are ready to get up) & I had asked him to come down for breakfast when he got to the end of an action sequence. I decided to check the email while I was waiting for him... & found one from an acquaintance from church that really set me off... This acquaitance is one of those people who sends reams & reams of stuff, much of it of a spacey-spiritual sort, & I had just about convinced my junk mail filtre that her stuff was, indeed, junk, when she became the chair of a committee that I correspond with... sigh. So I had to de-junk her address & put up with the reams. As it turns out, I had the opportunity to do some educating today.

She sent me a link to a site trumpeting the virtues of a "promising new treatment" for autism. This got my back up, but I dutifully checked the link & discovered that it was for something called "zeolite" which is supposedly "inert", & totally safe for the treatment of the effects of, you guessed it, mercury & heavy metal poisoning :S It is being advertised as a "wholistic" alternative therapy :S :S The "inert" bit really gets me since, from a scientific point of view, that would mean that it doesn't actually do anything... So I replied with the following email:

The problem with this "study" is that is has not been proven that mercury or any heavy metals cause autism. Many parents desperate for a "cure" for their children are sucked-in by these terrible claims, often subjecting their children to life-threatening procedures in order to "cure" them. Otherwise healthy children have died from these procedures. As benign as this zeolite treatment may be, it still carries the toxicity of giving false hope of "cure" for autism. Also, I'd like to point out that the word "inert" used to describe zeolite, means that is has no effect. That is what this means, scientifically, so I was suspicious of the "research" the minute I saw this word. Charlie & I are fortunate, my having been a laboratory scientist & Charlie being a physician, that I we can read these studies & evaluate them on their scientific value, & believe me, there is alot of specious stuff being passed off as science.
All current authentic research into autism shows that is is a condition that arises prenatally, & does not occur by poisoning after a child is born. Charlie & I have researched this extensively & firmly believe this to be true. The greatest harm perpetuated against autistic persons is that they have a "devestating" condition that must be cured at all costs. I am in communication with autistic adults, whom I met though my blog describing our lives with a child with autism, & they describe happy, functional adult lives, particularly when they have found employment that does not discriminate against them for their differences, & when they have been able to get rid of the baggage they've collected over a lifetime of being different. Charlie & I believe that the least toxic approach to raising a child with autism is an wholistic one- accept your child for who they are, find the best help so that they can live life to the fullest, & find the best "village" to raise them in. Raising a child with autism is a challenge, but an exhilarating one for those who are up for it, especially if you can love & respect your child for who they are & let go of your own baggage about who they will not turn out to be.
Linda, I would ask you to please be more careful about the information you send out to others, in the name of being helpful. Living a life of frantic search from "cure" promise to "cure" promise does not seem to me like a terribly wholistic or spiritual one, & that is exactly what happens to the poor families that are caught up in the struggle between what society tells them they should think/feel about their child with autism & what, in a better world, they could gain from this experience. Many people don't even understand that they have a choice about how to think or feel about their child, they just look for radical "cures" . If we're going to help these folks, we need to emphasise the joys amidst the pain of raising a child with autism, not offer more frantic, fraudulent hope.
I offer these thoughts with an open heart & hope you will accept them in the same way. -Lisa

I was pretty fired-up, as you can see, but tried to be kind, since I firmly believe that no-one accepts criticism when they are under attack. I did receive a nice, but pretty vague reply. It was more that I expected, actually...

The interesting part of this whole incident was what happened afterward... While I was composing this email, B came downstairs & proceded to make himself breakfast. He ate, cleared his place, brushed his teeth- & I was still furiously typing away (my early morning fingers just didn't want to co-operate...). Finally he asked me what I was doing, & I explained that someone had sent me info about a "cure" for autism & I really wanted to set them straight. He was incensed. Why would anyone want to cure him??? To be fair, I explained that not all kids with autism could communicate like he can, & many families have a very difficult time figuring out to help their kids. But I also told him that many families do want to cure their kids of autism & do not value them the way they are, & that his dad & I do not share this belief. He told me he was very glad of that. Then he asked if he could read the email. I was at the editing point, & weighed this request for the potential for upsetting him, & then said yes he could read it. So he read as I edited a few things for clarity & repetition (did I mention I was fired-up?). After he read it, B hugged me & thanked me for writing it. Whoa...

After I sent the letter & began making my long-delayed breakfast, B asked me more about the mercury poisoning thing. I explained that some people believe that their kids weren't born with autism but had been poisoned by their vaccinations, since some kids appear to be developing normally, but then change about the time they receive their MMR vaccines. He had a quizzical look on his face at that. He asked me if we had observed that with him, & I said that, although I did begin to think that B had ASD at about the time he'd had his MMR, it was very clear to his dad & me that he had been very sensitive to sensory overload & since he was born & that his development had been different than most kids'. We talked about how we discovered B's developmental delays, how his hearing loss when he was 4 years old had made his teachers think that that was the cause of his delays, & the long process by which we discovered that he had autism. We talked a lot about his visual/ perceptual difficulties (B did not have binocular convergence, so was not able to focus on objects until he'd had 1 1/2 years of intense therapy). We talked about my fears that he'd never read (that surprised him) & he decided that all that work had been worth it :) B also decided that he wanted to think about making a statement about how he feels about having autism. I told him that I'd be glad to put it in my blog if he did, & that I thought it would be really helpful to others to have his perspective. I told him how much reading the blogs of adults with autism, such as Zilari's "PartProcessing", helps me understand B so much better. So... we'll see. He was almost as fired-up as I was, but the energy waned & we moved on to our first project of the day, starting to weave a blanket on the big loom (B is really psyched about it!). Stay tuned...

Monday, June 26, 2006

First day of our summer schedule...

Today was the first day of B's & my summer schedule. Yesterday we created the new weekly schedule form, with the time laid-out in time-line fashion, from left to right, & the days of the week top-to-bottom, as B's psychologist recommended. This is all part of the effort to help B relate better conceptually to time, which is a pretty important life skill. After we made the form on the computer, we counted the number of weeks we'd actually be using it & printed out the forms we'll need. Then we made a file of the activities we want to do this summer:

manga drawing
weaving on the big loom (my floor loom)
hiragana (japanese written alphabet) practise
wiring an intercom set from a kit
continuing last summer's bionicle story
going to the library
typing practise
creative writing

...and printed it out. We also began our list of books to read over the summer. We'll start out together reading (alternating reading chapters aloud to each other) the first Artemis Fowl book. B has wanted to read Artemis since last summer, but I thought they were pretty violent for a 9-year-old... B was delighted to discover that the library on the 3rd floor of his school (where he'll move up to in September) has the Artemis Fowl books, so I decided to do a pre-emptive strike :) If we read them together, at least I can explain the violence as it comes up & make sure he's okay with it...

Our final task yesterday was to take our brand-new schedule & plug activities into it. B had a fencing lesson today & has a playdate on Thursday, which we recorded, plus we'll go grocery shopping Thursday morning... Then we put it all up on the fridge.

This morning the first thing B did was check the schedule :) We began with a hiragana practise session at 9:00-ish (around my doing the laundry & answering a phone call) which went very well. I'm hoping to replace the hiragana chart on the dining-room wall with the katakana chart by mid-July, so that we can begin learning that alphabet, too. Today, I got out the flash cards I made last summer & we put them out on the table as B identified each letter (using the chart on the wall to assist him). Then I asked him to spell words by pointing to the letters. He was getting pretty fast by the end of 40 minutes :) We had to get ready to go to fencing right after. B hadn't had a lesson for a couple weeks, but he still had the head-knowledge, even if his body was taking it's time remembering. He never once got frustrated, though, which was very cool. Next stop was the anime store, where we discovered that volume 7 of Hikaru no Go is out, & which solved the issue of what B's solo quiet reading book would be. After lunch we had 1/2 hour of solo reading & 1/2 hour of reading together, then we got out the intercom kit & had another go at it. B & I tried to make these 2 years ago, but it was way beyond B's patience level at the time, so I put them away. He had a frustrated start this time, almost as though he was remembering the last time, but with coaching, B came around. I had him undo the old wiring & I took charge of re-wiring the difficult bits. B also got out his battery tester & wire strippers & put them to good use. We worked happily away & didn't stop for a snack until 4 pm. During snack B played his current favourite cd, Dr. Demento's Greatest Hits... We found it at the museum of American history, & since I was a big Dr. Demento fan as a teenager we decided to get it. B, of course, finds it hysterical, although he needed a lot explained to him... he did **get** the shaving cream song by the end of it, & really likes Tom Lehrer's Poisoning Pigeons in the Park, The Fish Heads song, & Weird Al Yankovic's Yoda. During B's free time today he watched all of "Star Wars: A New Hope" in bits & pieces. C recommended that B try watching "Star Wars" as a distraction from tic-inducing thoughts & it really seemed to work, since B didn't have a major "tic attack" until after dinner. Although the OCD thoughts are still pretty overwhelming to B, we've decided not to increase any medication until we're absolutely sure that other methods, such as distraction & scheduling pretty tightly (so he is constantly focused on projects), don't work. If today is any indication, the scheduling works very well.

This week is our shake-down week, summer-schedule-wise. Next week he begins a week & a half at computer camp, before we return to our own scheduled activites. So far, so good. B fell asleep very well this evening & today felt really satisfying to me- it certainly went like the wind! Tomorrow we begin the day by baking. We've decided to bake cookies every week, so dad won't have to take store-bought cookies to work :) Plus, we're beginning a new activity of B helping to make dinner, which will happen twice a week (about all I thought I could handle, to begin with :). Onward...!

Saturday, June 24, 2006

Everybody's rights...

I have been more & more appalled lately by the reports of abuse & murder of children with all sorts of disabilities. Kristina Chew in her Autism Vox site recently reported the response by disability advocates here: & it was a welcome response. I recently confronted this issue of how we think about people with disabilites with the minister of our church, who was participating in a Muscular Dystrophy fundraiser by being "locked-up" & asking his friends & congregation members for "bail". This is the email I sent to him:

Hi George,
Your mentioning of your fund-raising efforts in church yesterday reminded me that I had wanted to contact you about this (things have been so busy I'm having to make notes to myself to remember things :). I wanted you to know that I oppose the Muscular Dystrophy Association's tactics for fund-raising on moral grounds, so that is why I have not supported your efforts. I know that you are supporting them for very good reasons, but most people are not aware of the moral implications of these sorts of fund raising campaigns, so I thought i would send you some info.
My main objection is that these campaigns objectify disabled people as objects of pity. Our society tends to see this as an acceptable exchange for the money that is given to the cause, & the good works that it will do, but in fact it's hurting those it is trying to help much more than it helps. For one thing, it perpetuates an unacceptable way of thinking about any human being, & in a society that resists thinking deeply about anything, this is not good. What we need to do is challenge the assumptions society makes about people. Certainly we would do this if it were racially-based, but the perception of disabled people as objects of pity is so pervasive as to be nearly unquestioned. A good example of this is the recent publicity of the murder of an autistic child, Katherine McCarron, by her mother. This is becoming more & more widely seen as a mercy killing, in spite of Katherine's grandfather publicly speaking out on the contrary & describing what a vibrant & lovely child she was.
Of course I feel deeply about these issues as the parent of a disabled child, but I was also fortunate to have belonged to a group that brought together disabled & able-bodied (as we used to say:) teens for social occasions back in the 70's. I met many young people with MD & learned first-hand that they were not only persons of worth & dignity, but certainly were not people to be pitied (some of the guys were pretty cute...). This experience made a lasting impression on me & has made me want to advocate for a positive view of differently-abled people whenever I can.
As a mother of a child on the spectrum I began blogging in January & joined an amazing community of people at various places in their journeys with autism, with some amazing advocates. One, Estee Klar in Toronto, has written an interesting examination of the "Economics of Pity" & here's the link:
I hope you will accept my comments in the spirit of friendship in which they are offered. You are a kind & thoughtful person & I really wanted to give you another perspective on the fund raising.
See you soon -Lisa

I sent this email on June 12th & have yet to receive a response, but I hope that he did understand my concerns & took them in the spirit intended. It is very hard to try to do good & be told that you may actually be doing ill...

B & I had a heart-wrenching discussion sometime last year about disability. He was trying very hard to understand where he fit in the world, with his differences & difficulties, & was wrestling particularly with how he was/is perceived by others. At some point, we were talking about how his somewhat invisible disabilities were just as real as if he were in a wheelchair or were blind, even though neurological differences are not generally recognised that way. B told me that he thought it might be easier to be in a wheelchair, which led us to a comparison of his life on wheels vs his life on the spectrum. It was illuminating for me to see how hard he was trying to get a grip on what exactly his differences were & how they affected him & other people. We ended the conversation, as I try always to do, with an affirmation of how valuable he is no matter what his differences, how empty life would be for us without him, & how much I love him. It also, as usual, ended with tears...

Why does our society embrace the "sound-bite" mentality/sensibility to the exclusion of real understanding? Why does humanity seem to need to put people in neat categories that serve no-one? Why is is so hard for most of the world to understand why my kid's life is not a tragedy but a gift to everyone who knows him? Deep acceptance & understanding of others is turning out to be one of the most difficult things for people to learn... but they are essential for our continued existence. I would not want to live in a world without neurodiversity, or any diversity.

Thursday, June 22, 2006

Home safe & sound... plus B's journal!

The drive home yesterday from DC was pretty uneventful, which is good :) B was definitely tired- he even fell asleep in the car within about 20 minutes of getting on the road, which is unheard-of behaviour for him. He had a tantrum at one point, but we gave it some time & he came back to earth. HP book 6 on tape was a life-saver. We listened to it for most of the 8-hour trip home. Once we had unpacked the car & I got the first load of wash in, we made a beeline for our favourite japanese restaurant for dinner. I most definitely felt more human after that meal :) B was very happy to be home, but it was clear that the transition was difficult for him. He had a terrible time settling into bed last night, didn't want any of his usual bedtime activities, like reading aloud to him, & finally settled for a "quick minute" with me. I put the fan on him, which often helps him to relax, & didn't leave until I was sure he was asleep. C & I compared notes on how easy it is (usually) for B to arrive at a new place, but very difficult to arrive home. Today he's doing better, although having dad home is a major bonus :) They mowed the lawn first thing then went to pick-up a sail C was having mended & hit the bakery on the way home. I grocery-shopped & we had japanese food (home-made) for lunch. As it turns out, our neighbour's son, B's age, needed an emergency appendectomy last Monday, so B is next door keeping him company by teaching him how to play the pokemon TCG- dad's idea :)

I thought it would be fun to put B's travel journal in here to share- he has a neat turn of phrase & an interesting perspective on things. All but two entries were typed entirely by B, & I have included some of the photos he chose for his journal as well.

A Tour of Washington DC with Rufus

I can say 3 things about the Air and Space museum.
1. They have some pretty cool missiles
2. Most of it was not boring
3. Cray ( the super computer ) was one of my favorite exhibits.
I also liked the WW2 exhibit and the Cessna.

The spy museum was awesome! My favorite things were: The thing where you could go through the duct and spy on people and the gift shop.
After a lunch at the spy city cafe we sat down and sunbathed by the hotel pool. And that’s pretty much what happened today.

Today we went to the national mall, it was quite a sight. We started at the Lincoln Memorial. We got to see a bunch of cool things including: the place where Martin Luther King Jr. stood when he had his famous I Have A Dream speech, the Gettysburgh Address and the statue of Abraham Lincoln ( it was amazingly big! ). The Washington Monument was pretty cool too ( we didn’t actually go up to it ). Did you know that in Washington D.C. no building can be taller than the Washington Monument? Then we walked back to the hotel ( after stopping at the Hirschorn for lunch ).

Here is Rufus at the Museum of Natural History next to a statue from Easter Island. My favorite part of the museum was the geology section ( it had an exhibit where you could jump and a seismograph would pick up the jump ). The gift shop wasn’t so exciting but they did have ice cream ( I had chocolate). The afternoon was pretty quiet. Me & dad went in the pool & swam around for a bit. We gave dad his Father’s Day present first thing in the morning & he used it in his pokemon card battles.

At long last we have seen a naked mole rat! This photo was taken at the National Zoo. Personally I thought they were cute, the reason I think this is because they scurried backward and forward through their tubes and they were so fast that mom kept getting pictures of their butts! At the gift shop we found a new friend! Another plush naked mole rat that we named Genki. After that we took the metro to the hotel and had a swim.

Today we went to the American History Museum. In the picture above (that’s me with the rat tail) I participated in a hands-on science experiment about dry ice, carbon dioxide and acids & bases. I also did an experiment about detecting polio using antibodies. And also in that science place I measured distance with a laser. We got to see Abraham Lincoln’s hat and Dorothy’s ruby slippers from the Wizard of Oz. After that we took a look at the Asian art museums (it was mom’s idea). Back at the hotel we took a swim & me & mom watched Kim Possible.

Tuesday, June 20, 2006

Best museum day yet...

Today we went to the Museum of National History. Strangely, although we had saved it for last because it didn't seem like the museum that would be most interesting to B, it was the place that held B's interest the longest. Who knew there would be a hands-on science lab there that is absolutely wonderful? While waiting for the experimenting to begin, B measured the distance across the room using a laser, with a docent's help & a great explanation of how this technique was used to measure the distance from the earth to the moon. This was right up B's alley, since he decided to calculate the distance from the earth to the sun last fall using the just-learned info of the time it takes light to reach earth from the sun plus the speed of light per second... The first docent-led hands-on experiment he participated in used CO2, made from dry ice, & tested various reactions using colour-reactive dye & acids & bases, flasks & candles & syringes- B just loved it. The picture above shows the last bit, where the docent put some soap into a mixture of dry ice & water. The next docent-led experiment dovetailed with the new exhibit on polio, & explained the identification of viruses using antibodies... & there was a neat little bit tacked-on at the end that showed how difficult it is to really clean your hands using a dye that was only visible under UV light. B washed his hands for a full minute, but there was still a little dye left on his hands :) Good information for a 10-year-old who has a lot of oral needs & therefore has his hands in his mouth a lot...

We wandered through the museum a bit, finding Lincoln's top hat & Dorothy's ruby slippers, & seeing the actual flag that inspired the "Star Spangled Banner", then had some lunch. For some reason, B's coping got worse after we ate, so we moved on to the two Asian art museums for just a walk-through before going back to the hotel. The afternoon went by very quickly, with a swim & a pokemon game. Before we knew it Kim Possible was on (we are taking advantage of having cable in the hotel room, since we don't have it at home :) & then it was time for dinner. C & I decided last evening that we've probably done & seen everything that is reasonable to do & see this trip, & although we weren't going to go home until Friday, we're headed back tomorrow. It will nice to have a few days with dad home all day. Perhaps he & B can get out sailing a couple mornings before C has to go back to work. We managed to plant the vegetable garden before we left, so there should be seedlings waiting for us at home, which will be really exciting. This vacation has to be counted a success, but we're ready for home :)

Monday, June 19, 2006

Pilgrimage accomplished... :)

We did it! We found the naked mole rat colony at the National Zoo. If you look carefully at the picture you can see a mole rat behind Rufus in the picture above...

It was pretty hot today, so we decided to take an early taxi to the zoo, to save our energy & patience. C & I managed to slide by the pandas for photo ops on the way to the small mammal house, which was a thrill for us. They are so amazing... B was pretty focused on finding the mole rats, although he enjoyed seeing the other small mammals, like the tamarinds, meerkats, & prairie dogs. We got there just as the naked mole rats were being fed, so got to see them wake up & begin to get active. They scooted along at quite a clip in their clear tubes, & went backwards as quickly as they went forwards, resulting in quite a lot of hilarity when we looked at the photos later- most of them were of empty tubes! Watching them crawl over each-other in a tube was a hoot, too, as was watching them haul the food around in their teeth. B had done a research poster on naked mole rats in 3rd grade, so he kept a running commentary of facts. He was just fascinated with them in living colour & I was glad we made the trip to see them. They were pretty darn cool :)

We made a trip through the invertabrates & reptile houses, but with the heat & all these days of unaccustomed walking, we were ready for lunch by 11:30. We stopped by the gift shop after lunch... we have begun referring to this vacation as the "gift shop tour of Washinton DC" :) We've found that we can tempt B into just about any museum as long as there's a gift shop... however, once he's in the gift shop he's really quite selective, & if there's nothing of interest to be found, he just takes it in stride & moves on. I feel very lucky! The cries of "buy this for me" were pretty thick in some of the shops & pretty obnoxious as well... We did find something worth buying, though, in the zoo shop:

This is Rufus' new friend, Genki (Japanese for "spirited"). Once we saw this naked-mole-rat stuffie we knew he was coming home with us... B has already created a pokemon based on him, with a name, sound, & "attacks" (all defensive & most of the healing type :). B did note that the ears aren't right (naked mole rats have ear-holes, but no flappy bits) but that didn't deter him from adopting the little guy...

We took the Metro back to the hotel. B & C had a nice swim, then played pokemon cards for a while. We had reservations for a tour of the Bureau of Engraving, but B & I were too pooped to go, so C went on his own & B & I watched Kim Possible in our room... C came back with all sorts of interesting facts about how paper money is made. We had dinner here at the hotel & B had his calmest meal outside our room yet... hard to know if it was all the down-time this afternoon or if Genki was a good distraction. B charmed the socks off our waiter with thanks & complementing his service, & decided that he wanted the ice cream course that came with his kids' meal, rather than deciding to take off for the room as soon as he finished his main course. He was falling asleep by 7:10, so C played another pokemon game with him to keep him up, in the interest of B waking up a reasonable hour in the morning (rather than 4:00 am)...

During the day, while trudging through the zoo & trying to distracting myself from the heat, I got thinking about what is necessary to have a successful outing with B... I think that the most important thing is a big smile on my face. The kind of smile that says "whatever my kid is doing, it's all right with me... he's fine & so am I." People do stare when B gets ticcing, & I have to admit that it can be everything from disturbing to embarassing, but we really have no right dragging this kid out into public if we're going to be embarrassed... & he has every right to be out in public... ergo, we just have to smile & keep going. Other important things are to be rested ourselves, because we don't need 3 of us with short tempers. That's just no fun. Keeping distractions that have worked before in mind- & being prepared to cook up new ones- is really important. Speaking Japanese has been a big help this trip. Remembering phrases B is not as familiar with & using them, getting him to try to remember what they mean, as well as saying familiar things to each other... these have proven to be very helpful while in elevators & restaurants when B gets overwhelmed & starts to tic loudly. Keeping compassion in mind has been helpful to me, too. When I have been overheated & crabby, it's been very helpful to remember that B is feeling similarly, so that I don't say things that make B feel worse. Making sure that we have plenty of down-time has been essential for B to recharge & be ready for the next challenges. This is basically true for me, too... I have been very grateful to C for his patience with both B & me at times. Neither of us travels well... but the rewards of this trip are pretty obvious. B has been fully engaged with at least one sight or activity at every place we've visited. We've seen sights that he's been able to relate to things he's learned at school or at home. It's definitely been worth it.

Tomorrow we'll go to the Museum of American History, & the one or both of the Asian art museums (depending on B's patience). We've promised a trip to the gift shops... but it's the intangibles that we'll really carry home with us... :)

Sunday, June 18, 2006

A quiet Father's Day...

B & I surprised dad with a smuggled-along-on-vacation present & home-made card today :) B made C's card on the computer & it is one of B's original pokeman creations, created in honour of dad, called "SeaTern", designed to help with sailing. B designed C's card just like a regular pokemon card, with attacks & weaknesses, so C was able to use it to play the pokemon card game today with B- a great success :)

C also had the very bright idea early on today that it would not be good to go to Monticello on a 90-degree day, since B is susceptible to the heat & we could not be sure if it would be cooler inside than outside... so we decided to walk across the street to the Natural History museum instead- guaranteed air-conditioned. B's favourite part was the exhibit on volcanoes & plate tectonics. There were lots of interactive, computery things that he just loves & it was really interesting. C & I took turns accompanying B while the other looked at the gems & minerals, which were amazing. C also tried to hunt-down the giant squid skeleton but was told it was not being shown at the moment. By the time 11:30 am rolled-around B had reached the end of his tolerance & was ticcing like mad, but we had lunch at the museum cafeteria & he seemed to feel better. We posed Rufus with the Easter Island stone statue right after lunch & before ice cream for the walk home... :)

We had a very low-key afternoon. I zoned-out for a bit while C & B took a swim. There were pokeman card games & playing on the computer, we read- together & separately- & B & I did some origami. After dinner we played cards together. Both C & I recalled hearing B talking in his sleep last night... in Japanese!! He very clearly said "yamete!" which means "cut it out!" :) We have been using Japanese as a distraction when B gets ovewhelmed in public- trying to figure out new ways of putting the phrases we know together to make new sentences or just speaking Japanese instead of English- & I guess the practise is doing some good. Can't wait to tell Tomoko that B's speaking Japanese in his dreams... :)

Tomorrow is supposed to be a bit cooler so we plan to make our pilgrimage to the National Zoo to see the naked mole rats... hope we can get a good pic of Rufus with his compatriots!

Saturday, June 17, 2006

Walking around DC...

Today we took a cab to the Lincoln Memorial & then walked back to the hotel, seeing the DC sights on foot. On the way over, B was giving us fun facts about DC, such as the Washington Monument being the tallest masonry structure in the country (& maybe the world) & that no building in DC is allowed to be taller than it is. I asked B where he got all these facts & he looked proudly over at dad... they must have been discussing these "fun facts" (B loves 'em) for days... C & I then told B about how the steps of the Lincoln Memorial are used as a rallying-place for celebrations & protests. We talked about Marian Anderson's being denied the right to sing in the DAR hall because she was of African American, & how Eleanor Roosevelt resigned her membership in the DAR as a result & arranged for the concert to take place on the steps of the Lincoln Memorial (some back-story about the DAR & who Eleanor Roosevelt was needed to be added, but B got the idea...). B was very impressed by the memorial & by the Gettysburgh Address engraved on the wall, & we talked about what that meant, too. It was neat to have him so focused & interested. We looked for the spot where Martin Luther King gave his "I have a dream" speech & so Rufus had to be photoed there too:

On our walk we passed the Einstein memorial & "The Wall", & talked a bit about the Vietnam War, too... there's a lot here that's B's still too young to understand, but he's starting to get a sense of our country's history. Watching "Liberty's Kids" on PBS when he was younger turned out to be really helpful because he had heard many of the names mentioned in the Declaration of Independance Memorial (C was impressed that there were four physicians among the signers :), which we passed on our walk. C was very keen to get a photo of the White House (we tried to get a tour but were told that June is an impossible month to get in... so much for it being "America's House"), so Rufus got to pose for that one too:

The giggles we heard from folks witnessing our Rufus photo ops have been a lot of fun...

We ended-up at the Hirschorn by lunchtime & took a walk through before we ate. We looked around at the sculpture garden, too, which was odd & cool. The break gave us the energy to make the last leg back to the hotel- it was a long morning for people unaccustomed to quite so much walking, & though B got a bit crabby before lunch, he was really quite a trooper :) We rested all afternoon (Disney Channel was having a Kim Possible marathon, so we had to watch it :), then got on the Metro to go get some dinner. Unfortunately, this was bad timing for B, who began melting-down as soon as we got out of the station... Finding places to eat for a kid with sensory issues & a vegetarian mom are not easy & by the time we settled on a place he was practically in hysterics. C & I felt rotten for him & very stressed, but we persevered (ignoring the looks we were getting), got food, got food in B's tummy (& our own) & all of a sudden B went from tears to calm. We added ice cream cones to the mix, which got us all the way home in one piece. What we are finding is that, for all that our hotel is nicely located sightseeing-wise, unless we want to eat every night in the hotel (& we don't...), finding food nearby on weekends is nearly impossible :( This is something we're gonna keep in mind for future vacations, believe me!

Tomorrow I hope to have B update his DC journal, then we're off on a day trip to Monticello, home of possible fellow spectrum-member Thomas Jefferson.

Friday, June 16, 2006

Spy Museum +...

Today we set off first thing on the Metro for the Spy Museum. B said he was looking forward to the escalators, & although he balked a couple of times, he & C set up a system of counting before walking onto an escalator that really did the trick. B even carried Rufus himself on the last leg of escalators. On the way to the spy museum we walked through Chinatown, where Rufus stopped to have a photo op with the beautiful gate...

The long-awaited spy museum was pretty cool. B was rather worried about being able to memorise his alias upon entry, so I didn't bother to do one for myself & just memorised his chosen "cover"... although it wasn't as big a deal as they made it seem. You could try to pass a quiz when you left, to see if you were arrested at the border or not :) C did it while B & I were in the gift shop & they let him leave, but he was too suspicious to be allowed into the country again :) :) But I'm getting ahead of myself...

There was a lot of hands-on stuff at the beginning, which B really liked although it was pretty crowded & you had to have the patience to wait until one of the interactive displays was free. Crawling through the duct was as cool as advertised & B did it several times. His patience lasted until about halfway through the museum & then he was ready to just move on to the gift shop, although a display about he Enigma Code & Alan Turing did catch his attention again for a bit. I really enjoyed the pop culture parts, & even B was charmed when they showed some Rocky & Bullwinkle in one room, since we are big fans... Here is B's take on the spy museum, in his own words:

The spy museum was awesome! My favorite things were: The thing where you could go through the duct and spy on people and the gift shop.
After a lunch at the spy city cafe we sat down and sunbathed by the hotel pool. And that’s pretty much what happened today.

Actually, after lunch we went to a little science museum nearby & enjoyed exhibits on the environment, DNA, & genetics. The photo above of Rufus & Einstein are from this museum, a part where you had to guess how much DNA you had in common with various animals & plants :) Rufe was very pleased to have had his photo taken with the great scientist...

B not only sunbathed by the pool after getting back to the hotel, but had a nice swim. We made an attempt to go to a nearby Chinese restauraunt for dinner, but B was tired & the OCD overtook him & sent him into a fetal position... then we tried take-out, but the cigarette smoke in the take-out area got my asthma going & I got dizzy. So poor C sent us limping back to the hotel & brought the food to the hungry masses. It was a weird feeling, not to be able to stay somewhere I wanted to be, but it gave me a sense of what B must experience when he gets overwhelmed by the OCD or sensory overload, so I guess it wasn't entirely a wasted experience. C didn't mind getting the food for us, & we had a quiet evening together in our room, playing pokeman, attempting to watch a Disney Channel movie (but it was too scary for B), reading more of "Coot Club" to help B get to sleep. Tomorrow- off to the Lincoln Memorial, Hirschorn, & any other places of interest in between...

Thursday, June 15, 2006

Visiting the Air & Space museum...

Today was our first day in Washington, DC & it went very well. We had contacted friends (C's best man when we were married) who live in Delaware, so our friend T & his youngest daughter, E (who is 13-ish), drove down this morning & we met at our hotel. We decided to go to the Air & Space museum at the Smithsonian, which is a long-deferred dream-come-true for me. I grew up in the 60's during the space race & one of my most exciting childhood memories was seeing the live pictures from the moon & hearing the "One giant leap for mankind" live on tv. I wanted to be an astronaut from that day forward... & though I sublimated this desire with a lifelong interest in science fiction, it was very exciting for me to see the vehicles that actually made the space voyages of my childhood. In fact, when B & I were looking at an exhibit of the spare LEM module for the first moon landing I got all choked up, prompting B to comment, "Gee, Mom, I never really knew how important this was to you... " How do you explain the newness & excitement of living through the space flight era to a kid to whom the whole thing is fait accompli...? He certainly understood that I was moved by it all, though.

The picture above is Rufus in front of some of the missiles on exhibit, B's choice of picture location. When I asked him this evening what the best part of the museum had been, he replied, "Observing the missiles & how they worked." It certainly seemed that, whenever B was getting bored or overwhelmed by all the people, a missile exhibit was the perfect diversion... is this a 10-year-old-boy thing? I think that, until today, missiles were an abstract thing to him- something he'd heard of from other kids & made out of legos to shoot from his lego vehicles, but never really understood before. Seeing how they worked was interesting as well as sobering, & he assured me that his lego missiles never killed any (imaginary) people. I fully expect him to take home the design for the buzz bombs used by the Germans in the Blitz & make them out of legos, he was so fascinated... The WWII exhibits gave us a chance to talk about the war with the Japanese, too, which B had been puzzling over somewhat, as it occasionally comes up in our Japanese lessons. It certainly makes me glad that we've come a long way since then in our understanding & appreciation of Japanese society & culture. The other exhibit that B really liked was the one about computers in space travel. He enjoyed seeing the evolution of computers & the progression of equipment from room-sizes installations to micro-chips. We both enjoyed examining the CRAY super-computer circa 1976, with it's 60+ miles of wires & special cooling system.

B did astoundingly well in the museum today, coping well with the increasing crowds as the day wore on... lunch time could have been really disastrous, since the food court attatched to the museum was one big McDonalds with many lines & huge numbers of school-trip kids waiting in them. There was a smaller, somewhat quieter cafe upstairs, & B decided to try a chicken salad sandwich up there for the first time rather than stand in the lines downstairs. He scarfed the sandwich in no time at all, & was ready for more looking around for a bit, before we finally ended-up in the gift shop to look for gifts for his best buddy. Unfortunately the toy shop was downstairs, but there was only escalator access (that we could find) & B developed a morbid fear of escalators last summer, so I went down & found some fun stuff for both he & his buddy (plus the original model of the USS Enterprise, NCC-1701, that was used for filming the original tv show :). Then it was time to walk back to the hotel with our friends, go for a swim, sit in the sun & relax.

We decided to try taking the metro to Chinatown for dinner, as the concierge assured us that any type of food we could want would be found there, & having a 10-year-old & a 13-year-old with us, we really wanted kid-friendly food that was not to be found in the hotel. We also thought it would be good to take a foray into the subway system to see how B coped. Right after buying our tickets, two things happened... B announced that he really had to go to the bathroom, & we discovered that there was only escalator access to the trains in the subway station we were already in... After one false start, when B stopped dead at the top of the escalator & panicked, C asked B if he could lift him onto the first stair... & B agreed. He handed Rufus to me (he was afraid Rufus would fall...) & C lifted him on... & away we all went. We did every escalator the same way, & eventually B relaxed somewhat. He confessed to me on one of our escalator rides that the reason he was afraid was that he'd been playing on an escalator in San Francisco (in April 2005) & fell & hurt himself, but hadn't told us. I remembered that escalator, too- there was one outside the hotel restaurant & B enjoyed riding up & down it when he was done eating. I never knew that he'd had a scare. He seemed relieved to have the incident off his chest & we were certainly relieved to have him coping better with escalators... & all this on top of really having to go to the bathroom... we found a Ruby Tuesdays near the metro station & C took B right to the restroom when we got there. We didn't see them again for a while... but B finally arrived at our table & announced to the world how relieved he was to have all that diarrhea out of him! (Luckily, the one lady who overheard this announcement just cracked-up, which was another relief...) He blames the chicken salad sandwich & I am not going to push the issue by requesting that he eat another... ever. We all had dinner (& a lovely discussion of Harry Potter with our 13-year-old friend, who turns out to be as much of a fan as we are :) & got back to the hotel in one piece. C saw our friends off to the right elevator to find their car, & we made plans to meet them tomorrow at the spy museum, which is high on B's list of must-see places in DC. After a bath & short Pokemon card game with dad, B fell right to sleep. Wonder where Rufus will find himself photographed tomorrow...?

Tuesday, June 13, 2006

Abilify update...

About a month ago B's psychiatrist recommended that we begin transitioning him from Seroquel to Abilify because it appeared that B was beginning to have some side effects from the Seroquel, which he has been on for about 2 years. He takes the Seroquel to help him cope with the OCD "thoughts", which are so intrusive that he has psychotic episodes from the anxiety. We do not like the idea or reality that our son needs neuroleptics & are very much aware of the potential, long-term effects, but B would not have a functional existence without the Seroquel. He would not be able to cope with school or any of the other growing & learning things that kids do (we recently reconfirmed this opinion with B's psychologist). As it stands, B is doing very well, considering his high level of anxiety even with the meds (he's also taking Zoloft). The side effects issue with the Seroquel is weight-gain & also that his triglyceride levels have been creeping up over time, which made his psychiatrist uneasy. When we saw her last month his most recent fasting blood test (from mid-April) showed his triglycerides to be over 300, so she asked us to repeat the test that week (mid-May) & strongly recommended beginning the transition to Abilify, which does not appear to have as much of a weight-gain or effect on cholesterol. We added 5 mg. Abilify on top of his regular Seroquel dose because he had been experiencing increased anxiety at the time. The immediate effect was to mess-up his sleeping routine by causing him to fall asleep earlier & then wake up earlier (which for B is not a good thing, since he rarely sleeps past 6:00 am as it is...). So, we reduced the Seroquel by 25 mg. 3 days after starting the Abilify, which took care of the problem. Over the next 4 weeks things were pretty stable, which was great, considering that it was the last weeks of school, with all of the attendant stress & transitions. As I had hoped, this was the first time since first grade that B did not try to hurt himself (by zapping himself with a paper clip in a wall socket) at school during the last few weeks, & that felt like a major victory.

Then just a week ago, B began having sleep disruptions again. He was waking up at 2:00 am & not being able to go back to sleep on his own. C would go in with him & try to get him back to sleep by just being with him (which usually works), sometimes successfully & sometimes not. The third morning this happened, B seemed to be having major leg spasms, & when B pressed his face into his dad's arm, C realised that B was having facial spasms, too. Thankfully, being a physician, C realised that the Abilify was causing these spasms & we discontinued it that morning. B slept through that night without any problem & the spasms have not made an appearance since. C called B's psychiatrist that day (last Friday) to let her know what was happening, but she didn't get the message until today which was our regularly scheduled appontment, anyway (today she told me that we should just ask the secretaries to page her in these situations, so now we know...).

Some good things (so far) have come from this situation... although I'm still feeling guilty as heck for B's having to deal with the spasms at all. We have not returned B to his previous Seroquel dose & he's been doing fine (it's been 5 days, which has usually been enough time to see any adverse changes), which means that this could be our first successful dose reduction ever- & we've tried at least twice in the past 2 years to reduce the dose. My thinking is that the increased time with Dr. M, B's psychologist, over the past 3 months has contributed to B's ability to handle more anxiety with less meds. He is much better at articulating what is causing the "thoughts" these days, which means that we can do our best to either modify his environment to minimise the triggers for the thoughts, or we can work on desensitisation. Either way, there's been a lot less head-banging & a lot more creative problem-solving, & it feels good. It also turns out that B's weight is down 2 lbs. from last month & his triglycerides have dropped to nearly a third of the worrisome figure from 2 months ago- hooray!! B was wondering if being more physically active would have had an effect, so we asked dad the doctor when he came home from work today & he said that increased physical activity would most certainly cause the numbers to be lower. This is wonderful reinforcement of B's recent efforts to be more active. He's had fencing lessons every week, plus has been learning to mow the lawn (we have a push-mower & postage-stamp-sized lawns, which are perfect for him :), plus has been swimming, & to top it off he's been digging a hole in the back yard & hauling out huge rocks with much sweat & excitement. :)

We are leaving for a family vacation to Washington, DC tomorrow, & B is psyched for the trip. Not specifically about going any place in particular (except the Spy Museum :), but just looking forward to going on vacation. I have a new Fruits Basket messenger bag for him, packed with goodies for the trip, like Pokemon activity books & plenty of gum. We found his spell-checker, which has never really been used as such, but has some great games like hangman on it, & are great for killing time in lines & restaurants. We have plenty of dvds & a new cigarette-lighter power converter for the laptop. And... drumroll please... I found the UK audio-book version of "Harry Potter & the Half Blood Prince", with Stephen Fry narrating, on Amazon.UK & purchased it to arrive in time for our trip. We love Stephen Fry & just can't wait to pop the first tape in tomorrow :) Makes me just about look forward to driving 8-ish hours... I hope to put up some of B's travel journal observations in the blog over the time we're in DC, so stay tuned.....

Thursday, June 08, 2006

Class trip day...

Today was B's class trip to the amusement park. I brought in all the tie-dyed t-shirts first thing, having taken them home yesterday (after rinsing & untieing them at school), to wash them to get the rest of the extra dye out. The kids really got caught up in the magic of untieing their shirts & discovering the patterns left by the colours & rubberbands. It was great- they were so psyched. They enjoyed putting them on this morning even more :) And I heard at the end of the day that they really were helpful to the teachers & parents for spotting the Cobblestone kids in the sea of schoolchildren who were spending the day at the park.

The weather was supposed to be dreadful- rainy & cool, but a miracle occurred & the early-morning temperature dip reversed itself so that the kids were able to go to the water park. The sun even came out! The rain didn't start until they were on the way home. B seemed to have had a great day, with a few B-ish blips, of course. He worried about drowning in the wave pool, he told me later, because the waves kept going over his head, but he had the sense to get out before things got out of hand, anxiety-wise, which made me very proud of him. He also saw a game in the arcade that had the words "tear your heart out" on it (not a game he played- he assured me he wouldn't do that because the game was too violent) & these words have gotten another OCD thought process going which made the afternoon & evening difficult, tic & thought-wise. We came up with the image of one of his home-made pokemon sitting on his shoulder & defending him from the thought, which worked as long as I reminded him of it. I think he was just that much more vulnerable to the thoughts because he was so tired from his full day (not to mention the fact that he woke up at 4:30 this morning & never got back to sleep- sigh). He rode a lot of rides, some which did scare him, but he endured. He enjoyed many of them, too, & I think his overall experience was a good one. This is nothing to sneeze at (one of B's favourite phrases right now :), when you consider how noisy & crowded & unpredictable the park was today.

My day, after handing out shirts & kissing B goodbye, was busy, with the regular Thursday grocery shopping & then additional errands to pick up some final end-of-year gifts for B's teachers. Most of the gifts I made, but we decided that the only appropriate gift for Ryan, teacher of the other 3rd-4th grade class & B's frequent partner in practical jokes, was a bunch of whoopie cushions. I bought 9 for Ryan & 1 for B (his has poohed-out), & the lady at the joke shop actually gave me a bulk discount :) I can't wait for Ryan's reaction when he opens his gift & neither can B... As I left school this morning, after hanging-out & chatting for a bit on the playground, I felt the bittersweet feeling that the end of the school year always brings- but that I always forget about until the next year rolls around. As much as B has difficulty with transitions, so do I, although our difficulties tend to be over different things. B & I are actually very lucky this year. We discovered only last evening that his teacher for the past 2 years is switching positions with one of the 5th-6th grade teachers & B will have Jen for 2 more years!! Plus, his consultant teacher, Cherie, is also looping up to his next-year class, at least for one year. So the same team that has had so much success helping B learn, & who knows him so well, will be with him again next year. I told Jen it was like a dream come true :) We had prepared B for a new teacher next year, not knowing at the time that Jen would be moving up with B, & after meeting the current 5th-6th grade teachers on Tuesday, which was Moving Up Day (where the kids who are moving up visit their new classrooms, & the kids who aren't welcome the newcomers & answer questions), B seemed pretty neutral about them (he was much more interested in the science projects on exhibit & the "older kid" books in the 3rd floor library). He seemed pleased that Jen & Cherie would be with him next year, when I told him, though I've learned that he doesn't think too much about the people in his future, or worry, or anticipate. He deals when things occur, which is probably a good thing, since his dad & I do this sort of anticipating anyway.

So... tomorrow is goodbye to the way things have been for 2 years, goodbye to B's class for the past year. Only half of his class will be moving up... I may not see some of the parents I've made friends with & grown used to seeing this year quite as often next year. I'll be climbing 2 flights of stairs instead of one for the next 4 years (I've already begun whining about this, I'm sad to say...). B will be one of the big kids- officially. Amazing, wonderful, & true!!

Tuesday, June 06, 2006

B's research poster... & what we've been up to lately...

It's proud mom time :) Last Friday was research day at B's school & all of the kids in the two 3rd/4th grade classes gave their research posters in two 40 minute sessions. It was really neat! They had all started their projects right after spring break & there was quite a variety of topics, although most concerned animals. B's was, as you can see, on the topic of quasars, pulsars, & black holes. He had enjoyed the unit on astronomy that preceded the break so much that he decided to continue exploring some of his questions about the universe in his research project. He found some books at the library & also did some research online. B read some of Stephen Hawking's research into the subject as well & quoted some of Hawking's specific findings when he explained his poster. Quite a few parents attended the poster presentations & some told me that B had taught them something new about pulsars, quasars, & black holes :) *glow* I love that B's school begins this sort of in-depth reseach when the kids are so young.Not only does it give them good experiences with sharing their knowledge, but it focuses them on questions they have about the world, then helps them learn how to discover the answers. It also gives the kids a sense of pride in their knowledge & the accomplishment of making & presenting their posters.

Well, this is Tuesday of the last week of school. It's amazing... even B can't believe that he's so close to being done. I have been vetting a 3-day tie-dye project with the 3rd/4th grade classes that began yesterday. They are going to an amusement park for their end-of-year trip on Thursday & one of the teachers thought it would be great if they all had similar shirts... thought tie-dye would be just the thing... but didn't know anything about tie-dyeing. I got involved, since I do have experience with it, explained the procedure (we are using the professional dyes, which is why it's a 3-day process... but the shirts will be really bright & colour-fast when we're done), & told him what to buy. Yesterday we tied the shirts with rubber-bands & then put them into an alkaline solution to soak overnight. Today was dye day... only one kid really hosed himself with dye, which is nice (I put B in dark clothing so it wouldn't matter, & made sure the kids knew to wear old clothes today :). I started out with rubber gloves on, but I kept taking them off & needing a new pair, so gave up on them... my hands are an interesting shade for the next couple days. Tomorrow is rinse day, then I'll take all of the shirts home & wash them in synthropol, so that they'll be safe to wash when they finally go home. I'll bring all the shirts to school on Thursday, ready to wear to the park, so none of them get lost. Most of the kids have been really excited about the process, which has made it a lot of fun for me :) B's OT came out with him (we did the dyeing outside in the schoolyard) & made sure Rufus didn't get hosed as well as assisting B with the process, since I was trying to teach all of the kids what to do. Tomorrow is rinse day- getting as much dye as possible out of the shirts before I take them home to wash. We are very fortunate that the weather has been sunny & conducive to being outdoors! Twenty-one kids tie-dyeing indoors would have been overwhelming!!! It was interesting to work with such a varied group of kids, too. On one hand, it really gave me an appreciation of my own kid & his ability to listen & co-operate with this sort of project, since some of the kids had trouble paying attention, or with the physical act of wrapping the rubber bands around the shirt, which frustrated them & made them want to quit. On the other hand, it was fun to see most of the kids eager to learn about the process, asking questions asked that were very appropriate & to the point. Although I wouldn't usually think of doing this sort of project as relaxing, I visited the doctor for a regular appointment right after yesterday's session & was pleased to find that my blood-pressure was 112/80. :) I guess I know what I'll do if it ever starts creeping up into medicine-requiring levels...