Monday, July 31, 2006

Another ride on the roller-coaster...

This morning B typed a letter to his school teacher, Jen. She had included a SASE in his yearly portfolio packet (the end-of-year report that details the students' progress & gives parents a sense of where they are academically) with a note asking that B write her a letter, so we decided to plug it into our schedule first thing this morning. We debated whether to type or write, but typing won because we decided he'd be able to write more if he typed. B sat down at the computer & immediately put his fingers in the "home row" configuration for touch-typing without being reminded, which was a very good sign :) I explained how to date a letter (in the upper right-hand corner) & he took it from there, with just a few reminders about capital letters, & punctuation. B was so full of zest for the job of writing this letter & was using his usual, interesting way of saying things that I was feeling great joy just to be sitting there witnessing & occasionally enabling the whole thing. We'd talk about what he did, then B would write it in his own words, beginning with the trip to Washington DC in June, moving through computer camp, then listing some of the projects we've undertaken this summer. I told B that I was looking forward to the time when he can touch-type reliably because he'll be able to write all of his stories easily, & he has so many stories in him... B wondered what it would be like to only be able to communicate by typing... B would stop typing from time to time, once handing me Rufus, since it was hard to type with him clamped in his right armpit (Rufus' usual place), once trying to use Rufus as a wrist-rest (like those at computer camp) with much re-positioning of Rufus (back, tummy, side) & giggling. As B worked, I began to notice that his tics became more frequent & eventually, the grins turned to grimaces. At the point of listing what we've been doing, B was trying very hard not to look at the keyboard at all & swearing (in japanese, sigh) when he had to because of mistakes. The tics became bigger, longer, & louder & I finally inquired what was setting him off. "Hands" was the terse reply. One of B's frequent OCD triggers are his own hands & feet- he has never elabourated as to what it is about them that makes him tic. I felt sad to see the obvious joy he'd been taking in writing about his summer turn to distress. Finally, for the final two sentences, I took over the typing because he would never have been able to finish otherwise. I told B, matter of factly, that although the OCD was getting in the way, it wouldn't always be such a problem for him. B agreed, in a tired fashion. I couldn't help but remember the joyful way he had begun the letter. It had been yet another roller-coaster ride activity, but the letter is mailed & I know Jen will love reading it.

I'm happy to report that "Star Trek: The Journey Home" arrived over the weekend & was a great hit. I had forgotten just how many hysterical lines there are in this movie (including the one where Spok tells Kirk "just a damn minute..."). We have been having quite the discussions ever since. From the usefulness of the phrase "colourful metaphors" as a euphemism for swearing (something we are actively dealing with, B-wise) to explanations of how aliens were perceived in our society before & after Trek, to how the Cold War affected the makeup of the Enterprise's bridge crew (B's main understanding of the Cold War comes from Rocky & Bullwinkle, so it's good to have another point of reference :), we have been exploring many new frontiers of our own. It was surreal to have my 10-year-old give me a lucid explanation of the physics of time-travel as explained on the special features disc (which he watched on his own), although unfortunately, the discussion of the vegetariansim of Vulcans has only reinforced B's OCD-driven distress about the eating of animals. B has, perhaps predictably, latched-on to Spock & Vulcan philosophy & he loves to phrase things the way he thinks Spock would. Of course, we've been looking at how Star Trek & Star Wars fit together in terms of how each broke new ground & changed the world of sci-fi & entertainment. And just to expand the horizons even more, the "Dr. Demento: Hits from Outer Space" cd arrived in the same order, & the Trek parodies have added interesting spice to the conversations. Parodies & what makes them funny (as opposed to what can make them offensive :) has been an on-going topic of conversation. The way the Trek characters are portrayed in the parodies has also thrown light on the steroetypes they represent. (My favourite song on the cd, though, is Weird Al's take on Star Wars Episode I, sung to the tune of "American Pie". It's absolutely brilliant!) In all, I think that B is getting quite an education just from these two discs. The extra bonus is that it's a lot of fun sharing my first sci-fi obsession with my kid :) And we have a whole new construct with which to help make this confusing world make more sense... :)

Please write...

Autism Diva recently posted ( see July 21st post) that the Kellogg's cereal company has teamed up with Autism Speaks to "advertise" information about autism- in itself a good thing- with the Autism Speaks web site prominently displayed... not a good thing, in my opinion. Autism Diva has invited those concerned to write or email & includes the contact information in her post. Here is what I wrote:

Dear Mr. Knowlton,
I was quite distressed to learn that the Kelloggs company has decided to join with the Autism Speaks organisation in a promotional campaign. As the parent of an autistic child & active blogger about my life with my child, I support the efforts to make the public aware of autism. However, I do not support the activities of the Autism Speaks organisation because I believe that they paint a far too negative picture of life with an autistic child. Their video "Autism Every Day", which is advertised on their site, contains a segment where a parent "confesses" their passing wish to kill their autistic child (in front of the child...!). I believe that the decision to include this in the video shows blatant disregard for human life & must be taken seriously. Having undergone the journey of acceptance of my child's diagnosis of autism I can imagine the effect this might have on parents looking for information & assistance in their own journey. Please seriously reconsider this promotional campaign, particularly the advertising of Autism Speaks' message which so clearly devalues the lives of autistic people.

I have been haunted ever since hearing about the "Autism Every Day" video & reading the online discussion. I do not want the devaluation of the lives of people with autism to become an accepted attitude. My son's life is too precious to be left to the whims of popular culture. Please read Diva's post & write in as well. Many thanks!

Friday, July 28, 2006

Busy week!

These weeks when B is home just fly by!

B & I are very pleased with ourselves. Our most recent project worked out very well, although it took the full week to realise... A while back, when my back started acting up again, I found the body pillow I used when I was pregnant (more than 10 years ago) & started using it again to make myself more comfortable sleeping. Somehow, my side of the bed (& the body pillow more specifically) has become B's comfort spot when he's upset or out of sorts. Sometimes it's heartwarming & cute, finding him burrowed under the covers wrapped around the body pillow... unless, of course, he's just come in from playing with water balloons (with soaking wet hair) or is really sweaty from helping dad mow the lawn. Then it can be annoying... So we all decided that B needs his own body pillow. B has also been having trouble with his regular bed pillow for that last few months, sometimes rejecting it altogether, sometimes needing a new pillowcase before he can go to bed... he had mentioned to C how much he likes the quilted pillows I made for the sofa, which made me think that what he really needs is a pillowcase that's 100% cotton & not the poly-cotton blend ones that come with the sheets. We were hoping to make more ExoForce fabric (like we made for the lego lampshade), but the printer has decided to go, maybe terminally, on the fritz... so I suggested a trip to JoAnn Fabrics last Monday to see if he could find any fabric he liked instead. This all somehow coalesced with my musings about a body pillow for B, & some time in the wee hours of Monday morning I decided that we'd make B a body pillow & make a cover for it out of the fabric B chose for the the pillow case. I measured my body pillow & lo- it was exactly 18" wide. I have had some 36" muslin hanging around for some time, so that's what we used for the shell. B found some Star Wars fabric that he latched on to :) & it was on sale (yay!). The "do not use this fabric for children's sleepwear" message along one selvage kind of freaked him out, but he decided it was ok because we weren't making pajamas out of it... (big sigh of relief). So, while the fabric was being pre-washed & dried, we made his body pillow. I measured the fabric about 6" longer than he is, so he can grow into it, & we used shredded foam for the stuffing (& made a quick trip back to the store because, of course, I did not buy enough...). B machine-stitched the long seam himself, with a bit of guidance assistance from me. I sewed it shut, since by the time it was full it resembled a 5 1/2 foot long sausage & was about as easy to manage... We made the cover a couple of inches bigger all around & used hammer-on snaps for the closure, which B really enjoyed hammering in place :) Volia! He has enjoyed snuggling with it every night since. We decided to wait to make the bed-pillow case, since we had other projects to get going...

We decided to do our summer tie-dyeing this week. I have been saving things to dye for a while now- whenever I put in an order at Dharma Trading Company (mostly for undershirts & socks for B & C, but their specialty is clothing blanks for dyeing) I get some bigger sizes of t-shirts for B to grow into, some cotton squares to experiment dyeing for furoshiki (wrapping cloths), & other fun stuff. C needed new socks so I decided to tie-dye some for him (he hates boring socks) & we did a couple pair for B as well. I had been saving white boxers of B's to tie-dye as well, but the main thing I have really been wanting to do is the cover for B's ball-blanket :) This is a weighted blanket that B uses to help him sleep. It's made of denim fabric, but I made a cover for it from white muslin specifically for when we travel, to keep it clean. I've been wanting to dye it for a couple of years... So, we did the 3-day process, beginning Monday with making the soda ash solution to soak the to-be-dyed items in & then tying everything with rubber bands before tossing them into the solution. On Tuesday afternoon we spread an old tablecloth on the back deck & commenced with the dyeing (I use Procyon dyes because they are wonderfully bright & durable). B did his socks & his boxers (& part of the house, but who's complaining...) & left me to do the rest. Everything had to sit overnight before we could rinse & wash them Wednesday afternoon.

Wednesday was my once-a-summer return to the 19th century... For 11 years now I have been teaching spinning for a programme in a little town about 1/2 hour away called "Miss Eliza's Schoolhouse". For a whole week 14-20, 10-year-olds spend their days dressed, living & learning as kids in the 1870's would have, in an old, one-room schoolhouse. I also dress in authentic 1870's clothing (somewhere in the neighbourhood of 7 yards of fabric, including the apron...) & tell the kids about how different fibres were & are used to make clothing. I bring things I've made to show them, then I teach them to card wool & spin it on a drop-spindle. They all go home with little skeins of yarn that they've made themselves. This year there had been a request to try the spinning wheel, too, so I brought one of mine along & we made the time for them to try after they had learned the basics on the spindles. I always have a lot of fun doing Miss Elisa (I'm Miss Lisa :) & it's nice to give the kids a glimpse into the past & a sense of where things come from. C took the whole day off this Wednesday so that I could do Miss Eliza, & he arranged to have one of B's school buddys come for a visit. So, after I got home at 2:30 from a full morning & partial afternoon of teaching (& lugging baskets & wheel) I was able to change clothes & move right into rinsing tie-dyed stuff. I like to rinse in the yard when I can, so the water isn't wasted (I've never had any trouble with the dyes hurting the lawn or garden). It was a lot of lifting heavy buckets, but everything came out beautifully- the ball blanket cover is fabulous & B says it looks like a supernova. I put everything through the washer with some synthropol to keep the leftover dye from doing any harm. We a now a newly colourful family :)

Thursday was not as much fun as the rest of the week had been... I woke-up with a migraine :( We were supposed to go grocery shopping but I just couldn't manage it. By 12:30 I realised that tylenol & caffeinated soda was not taking this one away, so I took an imitrex... mixed blessing. Yes, after a couple more hours the migraine was mostly gone, but I thought my head was going to explode first, the pain was so intense. B was wonderful. He played games on the computer while I dozed on the sofa, then when I could manage to sit for a while, we watched Pokemon videos together. He read to me, too. He never once complained that we weren't doing anything fun & was really sympathetic. I called C to warn him that I wasn't feeling well, so he brought pizza home for dinner, bless him. He read to B at bedtime to give me a break, since I was still wiped-out from the migraine.

Today I was much better, although still a bit fuzzy. We started out at the chiropracter for one of my regular appointments & B was able to sit & read while I had my visit, after asking the doctor about the "mechanisms" in the room :) Then we finally went grocery shopping. Poor B, though... the bacon cheeseburger pizza (a local specialty) that C brought home for dinner (my half was eggplant) had weirded him out, which sometimes happens after he eats meat. He gets OCD thoughts about Rufus being hurt or eaten & then food starts giving him thoughts. So there we were in the grocery store... all of the food started giving B thoughts. I would stop to hug him when he was really distressed, but I tried to keep us moving as well because I was afraid that the thoughts would just keep getting worse & B would completely lose it & there was no way we could leave the store without our groceries. I was very distracted from my shopping list & kept having to back-track to get things I'd forgotten. B's tics got louder & bigger. There was a nightmarish quality to the whole thing- every time we turned a corner there was another triggger. I kept wracking my brain for distractions... finally, in the last aisle, as I was despairing that B would never have the patience to wait in line while we checked out, we had to pick up some bug spray for C to use on a yellowjacket nest in the garage. I asked B to help me compare the different types so we'd buy the right kind... we were reading the ingredients on 2 supposedly different kinds & discovered that their ingredients were identical, & the absurdity of this did the trick. We discussed this all the way to the checkout, then I told B to look over the candy to see if there was anything he wanted, which took him almost to the end of checking out. We walked in the rain to the car, B trying to hold the umbrella over us both while I pushed the cart, & laughing hysterically when he managed to do a better job of protecting the pavement from the rain than me... whew! We got home, I put groceries away & dealt with laundry while he played on the computer. Then we made his pillowcase, finally. He is very pleased with the matching pillows :) The rest of the day was mellow, with grammie coming over for the usual Friday night family dinner. He was very excited to show grammie & dad what we'd done today.

Looking back on the week, I just can't believe a whole week has gone by, it went so fast... Looking back on the day, I am exhausted. But I'm also really proud of surviving our grocery store crisis. When I glanced at another person or briefly worried about what they thought of my melting-down kid, I was able to bring my focus right back to B & not waste time on feeling embarassed. I think that keeping my focus allowed me to keep it together myself & I feel really glad that we were okay by the time we left the store. It bodes well for our shopping expedition next week... fingers crossed!

Friday, July 21, 2006

B's views on Aspergers...

B & I got talking about Aspergers today while baking scones, so I thought I would continue the conversation here & give some of B's views & Ideas about AS (or "gas hamburgers", as he likes to call it :).

B mentioned the following characteristics that he believes AS gives him:
* Pretty good concentration- the advantage to this is that it helps in school (his teacher Cherie thinks so) & helps him to concentrate on books better. The disadvantage is that it makes him have trouble when switching activities.
* Good imagination- spices up his life a bit & "might even spice up your mother's life" (I quote...). The disadvantage is that, if you have OCD, sometimes imagination may give you some triggers.
* You care more about your own interests than the popular culture ones that other kids care about- the advantage is that B thinks that perhaps this makes him more resistant to teasing because he doesn't care as much what other kids think of him. B also feels he can avoid getting into violence in shows & games more easily because he's not into some of the things other kids are into. The disadvantage is that some kids may not want to be your friend because you don't share their interests.

B doesn't think that it's bad to have AS. He thinks it's ok to be different. The worse thing that could happen would be to be sad that you're different. B thinks it's best to just be yourself. It helps to not hang out with people who tease you. (Mom wondered if it also helps to be surrounded by people who, even though they are helping you with OT, Speech, & other stuff like that, really like you for who you are & aren't trying to change you. B thought this was true.)

B also has OCD, which is the thing that bothers him the most. Here are a few reasons why:
* For one thing, it lies to him. It makes him worry about things that have about a one in one thousand chance of happening.
* Sometimes it makes it harder to get rid of the thought that bothers him.

B says:"What helps the OCD is a little plushie I have names\d Rufus. He's a naked mole rat. Just having Rufus around & looking at his cute little face distracts him from the thoughts. Sometimes he does funny things like jump on my head. I carry him pretty much where ever I go. I have other pokemon plushies that help too. If the thoughts are mild then watching a dvd can help, but not if they're too intense. Sometimes playing a game with dad or talking to my parents or teachers can help. Medicine helps me cope with the OCD, plus seeing Dr. M is helping me too. I'm not sure if anyone can completely recover or get rid of OCD but I hope so."

alexander's daddy once asked if B knew any other kids with AS & what he thought of them. B says that he knows some kids with autism. Two are at school. "One of the kids is not in my class, so I don't to see him much. He has more trouble than I do. He'd been tapping on a door & it was driving me crazy, & when I went to find out why he was doing it, the teacher explained that he had autism like me. I've talked to him, he doesn't talk much back, but he's pretty nice. The other kid is in my class. When I talked to my class last fall about having OCD, Tourettes, & AS, he told me he thought I was very courageous. I think that's because he wasn't able to talk about having AS. I enjoy talking to him, but we are not close friends because we don't have a lot of interests in common. I have another friend with AS, who used to go to my school but is now going to college. He's one of my best friends. We share interests & some of the stories he told me about going to my school were pretty interesting & funny. It's nice to have a friend with AS who's older & can share things with me. "

So, there's B's views on the subject for today :)

Monday, July 17, 2006

Back to Camp Mom...

Computer camp is over. B came home last Friday with a disc containing all of the games made by kids in his workshop & it is really nifty. B's game, based on a story he's writing about a robotic naked mole rat (of course :), has his robot, Omega, going uphill while battling the bad guy's robots (z-borgs), collecting root vegetables for extra points. B drew all of the characters & graphics & they are really cute (to a mom, of course- to B they are "cool"). The other kids' games are pretty cute, too.

We had a quiet weekend, with a lively japanese lesson on Saturday (we played games to help B with his hiragana recognition), then a visit from a spinning friend who couldn't make the meeting either, so she came over to keep us company. C got to sail, even though the day began with thunder storms. On Sunday B & C went for an early-morning sail. They left the house around 6:30, ate breakfast down at the bay, had a nice sail (B skippered for quite a bit), & were home by 9:30 am. They also weeded the garden, but the heat has been intense the past few days, so they didn't stay out for very long. Our garden is doing well, with all the rain last week & now lots of sunshine. The tomatoes, in 2 self-watering planters on the back deck, are now taller than both B & me & heading for C-height... In the afternoon B convinced me to take him to the gaming store to spend saved-up allowance on pokemon booster packs, & then we checked-in at the anime store around the corner to find that Hikaru no Go volume 3 is out on dvd, so I picked it up. B beefed-up one of his pokemon decks with some of the new cards but had terrible luck with the game he & dad played, so it was good to have Hikaru as a distraction while he cooled down... B brought the go board up to the tv room & set problems for himself while he watched...

The klonapin has been working very well to help B fall to sleep, so we reduced his seroquel dose again on Sunday evening, back to 50 mg. The 75 mg. evening dose was good to bridge the gap until we got the klonapin started, but it certainly didn't seem to have an effect on the thoughts & tics during the day, so we felt safe dropping it back to the previous dosage...

Today we went back to our Camp Mom schedule & the first thing we did was make the lamp in the picture above. B has had a Pooh lamp in his room since infancy & it recently occurred to me that he probably should have something more suitable to a "big boy", so I found a kit to make a lamp out of a mason jar. B decided he wanted an Exo-Force theme for it, so we filled the jar with extra legos. The lampshade is sticky, for the fabric of your choice to cover it, so B & I put Exo-Force pictures from a file he had downloaded from the lego site into a drawing file & printed the resulting pictures onto printer fabric. I did all the supplemental gluing (I used bias tape to make the edges neater). The lamp is now in its place on his dresser :) We also finished dressing the big loom for weaving our first blanket together. Yay!! I can't wait to see what B thinks of weaving something so big. We also came up with a compromise... I have been wanting him to do the Timon & Pumba typing game over the summer so he doesn't lose his touch-typing skills. So I told him that I would read Artemis Fowl to him for as long as he practised. Today he did 1/2 hour, so I read for the same. We had finished the first book & so we started the second one. He also finished "Half Magic" on his own today.

Dad has a meeting, so B & I will have a home-cooked japanese supper, yum! Looking at all we've accomplished today, it's a great start to Camp Mom. Hope we keep having this much fun!

Thursday, July 13, 2006

Still breathing...

Life is never dull...

After 2 nights on the klonopin I can say that it seems to be helping B to sleep without succumbing to the nasty thoughts, so that's a relief. I was kind of freaked-out after reading the prescription's accompanying info, though. They say people taking this should carry a card stating that they're taking it, the dosage, etc... When I mentioned it to C he explained that B is on such a low dose that it's simply not going to be a problem. He called it a "you get what you see" kind of drug, meaning that you don't have to wait for it to become effective (like the zoloft & the seroquel). B takes it at dinner time, it works for the next 8 hours, then it's out of his system until the next dose. I feel much better...

Of course, there's still the daytime anxiety to deal with. B is doing well at camp, although we are getting more & more stories of teasing by other kids- nothing B can't handle- & are spending time every evening coaching B as to appropriate responses (mostly to ignore them, since that seems to work best). He's having a really good time with his best buddy after camp, too. Around dinner time we can see B's energy level start to flag, & after dinner it's the downhill run to bed-time.

Yesterday I made a big mistake during the pre-dinner down time... we were sitting aroung waiting for C to come home & make dinner. B couldn't settle on anything to do while he waited, so we were just idly conversing. I had been facing a dilemma- I am responsible for the charity efforts of my big spinning guild, which are on-going through the year & culminate in a final gathering of all the handmade items in November. I try to make as many meetings as possible because people spin yarn to be used by others to make things to be given away & I'm the clearinghouse for it all. I've missed the last 2 meetings due to vacation & illness & really wanted to go this Saturday. However, I forgot that C's sailing (racing) is on Saturdays this summer. He hasn't been able to go the past 2 weeks because he's been working, & the sailing is his main sanity activity, so I want him to go as much as he can... In my mind, I imagined B going to my spinning meeting with me, maybe doing some spinning on the wheel or on his spindle, or maybe just sitting quietly & reading or listening to a tape. I brought this idea to B during our down time, explaining that he'd be helping me out a lot by going with me, being a co-operative member of the family... I had no idea how awfully he'd respond to this idea. He was dead set against it & I was really disappointed. I couldn't understand why he didn't want to help me out, why he couldn't see the bigger picture. I wish someone would explain to me when kids are developmentally ready for this kind of give & take- B can seem so mature & understanding sometimes & I thought he would understand how important it was to me. I tried very hard not to guilt-trip him while still explaining my point of view. B's body language became very angry- he moved away from me & it made me sad. I wondered if he was angry with me for making the request. He ended-up simply freaking out. The tics became more & more explosive & he started moaning & screaming, hitting himself in the head & rolled up in a fetal position on the sofa. I ended-up apologising & telling him it was my fault for asking (C was home by then & was there to support both of us). B finally came down, but kept insisting it was his fault, that he was a "bastard" (arrgh, language!) for not wanting to do it... I finally told him I didn't think it was anybody's fault, really. I didn't realise how much it would upset him & he didn't either. He accepted this, & then we finally broke through the other side when he blew his nose & showed me the snots, which grossed me out, which made him giggle... We got dinner & medicine in him, then decided to watch a pokemon movie after dinner, until bedtime. B was able to tell me he was ready for bed before the movie was over, which was great. I read to him for about 20 minutes & he was asleep.

C & I processed the disaster after B was asleep. I was still very bewildered & feeling very guilty for precipitating this episode with B (I'm the one who's supposed to be helping, not hurting...). We decided that, in spite of B's flashes of maturity & ability, he is nonetheless a child with disabilities & we can't forget this, ever. His disabilities are multiple, not just with motor/fine motor/sensory components, but definitely with emotional barriers & boundaries that can't yet be crossed. It made me feel as though life had put the fences closer around me- uncomfortably close. This morning, though, as B got ready for camp & gleefully unwrapped some pokemon cards he had earned through our behavioural charting (& believe me,. they didn't come easily this time around... B's life has been complicated), I was struck by how fortunate I am to have a kid that can go to camp all day, enjoy playing with friends, likes to do summer stuff with me. I can take him on errands & grocery shopping. Life could be a lot more constricted than it is- so I am holding this thought & trying to appreciate what I have. I put out a call to my spinning guild friends, asking for someone to collect the charity stuff for me & let everybody know I'm still alive :) I've already had a response, so that's taken care of. Sometimes it's weird being the mom of a kid on the spectrum. They can fool you- one minute behaving as thought they can handle anything & the next making it very clear that you have a child with a disability on your hands.... I've had a rude awakening, but no harm seems to have been done. We happily discussed Star Trek on the way to camp this morning & I realised that the 4th movie, the "Save the Whales" one, would be fabulous for B, so I told him a bit about it (& ordered it this morning after I got home). Life is back to normal for us...

Tuesday, July 11, 2006

Holding our breath...

As I've though about yesterday, it feels as though we have been holding our breath... will the extra 25 mg of seroquel help B back to the life he's accustomed to? He started it Sunday dinnertime & having discussed the extra pill with B earlier in the day, he took it without comment or complaint. He didn't want me to read to him at bedtime Sunday night, so C just sat in the dark & chatted with him until he fell asleep at nearly his usual time. I was a bit nervous about camp Monday morning. B was still having trouble with OCD thoughts & we sat & hugged for a bit after breakfast to help him pull it together. He never said that he didn't want to go, so off we went. We seem to have very deep, interesting conversations on the way to camp, so he was pretty diverted in the car. He ticced pretty violently when he got there, but I decided that they'd call me if he was having trouble... I stuck close to home anyway, just in case (it wasn't hard, seeing as it was laundry day & I needed to bake bread :). I brought both B & his best buddy E home after camp, with a stop to buy water ballons :) B had been very distracted during the day- he was wearing his swim trunks when I picked him up! It turned out to have been funny incidents, though... he spilled orange soda on his pants (& his pizza, which he said didn't taste very good with the soda on it...) during lunch, then another kid accidentally hosed him with chocolate milk. So he put on still-damp swim trunks (with his clean boxers :) & bagged the sodden clothes in the plastic bag I send for emergencies. That was pretty good thinking, actually, although he decided he must have a "mild case of dementia", which he thought was funny... After a snack, E changed into his trunks, too & they commenced with the water balloon fun. After E left B seemed tired, but not overwhelmed, & told me about how the game he's designing is coming along. He couldn't be on his own because the thoughts would overwhelm him, but he kept me company for a bit then went online to look at pokemon cards. I think he's memorising every card in existence as an antidote to the thoughts... It will be very cool & interesting when he gets the japanese cards & can compare them.

When C came home for dinner he said he'd spoken to Dr. B, the psychiatrist, & that she would have a new prescription for B waiting for us after camp tomorrow. She wants him to try klonopin- an anti-anxiety medicine that we'd decided against trying a few months ago because it, too, has a possible weight-gain side-effect. C told me that he has adult patients on it & they'venot had difficulty with weight-gain & it's helped their anxiety a great deal. After dinner it was tubby time. While B was bathing a ferocious thunder storm came through, so after I braided his rat-tail, I read for a bit from our Arthur Ransome book to distract us :) B & C were going to play a pokemon card came after, but B was too tired & asked me to read some more. At one point he had an overwhelming thought & rolled into a fetal position, but he was able to verbalise the thought (it was the one about Rufus being beheaded again- he said it was very graphic). I made physical contact with B, to give him some feedback from outside his head, then told him that this bad thought couldn't happen, that Rufus was safe, & that he was safe... he calmed down pretty quickly & was able to go on listening to the story. He fell asleep within about 1/2 an hour.

This morning felt a bit less like I was holding my breath. B started ticcing the moment he woke up, but the minute he was distracted by dressing & eating breakfast it stopped. He was quite relaxed going into camp, looking forward to working on his game. This afternoon we'll pick up B's new prescription after camp, then go the the store to fill it & have a snack there while we're waiting (B is really looking forward to this part :). Our friend Paula & her son, favourite sitter C, are coming to dinner, so we'll pick up some fruit- maybe make strawberry shortcake for them. We'll also start B's new medicine, continuing the breath-holding phase as we watch for side-effects & to see if it helps.

Sunday, July 09, 2006

Saving a life...?

Yesterday was one roller-coaster of a day. Dad worked in the morning & I had planned a quiet morning, printing out the letters B & I had written to Tomoko's mom in Japan to thank her for the snacks she had sent us (the Pokemon-themed ones were a particular hit :) & practising hiragana... but the brand new black printer cartridge turned out to be defective, so we made an unexpected, yet quick trip to get a replacement, which was weathered well by B, then continued with the regularly scheduled activities. C got home right as we were getting ready for lunch & they had time to start a pokemon card game before our Japanese lesson. I had found some daifuku (mochi with red bean paste inside) buns at the asian food store & also some mugicha, which is the favourite japanese iced tea for summer (considered very healthy), so I prepared a surprise snack for our lesson. The message B spelled out for Tomoko this week said Tomoko wa, mugicha ga suki desuka? which means "Does Tomoko like mugicha?". She loves it :) The next bit of fun was watching dad eat a daifuku bun. C is known for his suspicion of soft, sticky mochi, & I now have the photos to prove it :) He's a really good sport. Buckling down to the lesson went pretty well until we got to the verb "to eat", which seems to have an unpleasant connotation for B at times & starts him ticcing... it's really hard to know how to deal with this. Tomoko is endlessly patient- it's really the only reason we learn anything at all, I think. She moved along with the lesson & I held B half in my lap until the tics calmed down, then he did his bit of the conversation & was released to dad for more pokemon. Tomoko & I usually spend time on our own after B's part of the lesson is done, comparing cultures or my asking questions about words or phrases I've come across. I am always amazed by how Tomoko is always completely unruffled by B's tics & difficulties with certain words & ideas & I'm coming to see this as part of Japanese culture's way of looking at children in general. In Japan kids are cut a great deal of slack. They are expected to be kids & are indulged a bit (a kid can ask an adult for something, like a toy or a sweet, & it isn't considered rude)- probably because things get so demanding as they grow older.

In the afternoon, B had a great time with the kids next door. They have bonded over water balloons over the past few days, kindly provided by B's best friend E, & now that the balloons have run-out they have been playing with the hose & in their big, inflatable yard-pool. For all that we have been neighbours since before any of the kids were born, there is a sense of exoticness about them at times. The oldest, a boy, is 5 days younger than B, with the other 2, girls, 3 & 5 years younger than the boys. These kids go to catholic school & are part of a huge family clan. Other than being neighbours, we don't run in the same circles at all & do have some diverging values, but in all they are great neighbours & good people. They have watched with acceptance & understanding our journey with B & autism, which has been a comfort. During the recent water play we have been enjoying overhearing B's interactions with the kids- he is having a great time learning their games & sharing ones he knows or makes up. While C was outside with B yesterday, keeping an eye on things, the neighbour mom was telling him about overhearing a conversation between B & middle child about his tics. She was amazed... she said B answered the questions matter-of-factly & very clearly (this mom is a nurse), explaining that his brain worked differently & that he can't do anything about the tics. but that they aren't an ilness or anything- that they happen to him, but are not likely to happen to her (middle child). C & I were also pretty amazed & pleased by B's ability to explain his tics to a younger child, especially his being aware of her possible fears about them.

As they day wore on B had more & more difficulty with thoughts & tics. By bed-time it was clear that he was exhausted, but he was terribly restless while I was reading to him & after 30 minutes seemed no more ready to fall asleep than when I started reading. The tics got louder & louder & all he could say was that it was a thought about Rufus getting hurt. The biggest problem with the OCD & B not falling asleep is that he gets less & less able to talk, think clearly, or even interact with us as it gets later... C tried putting B in front of the tv to watch pokemon for about 45 minutes, but the thoughts started bothering him the minute he went back to bed. By 11:15 we tried putting him back in from of the tv, but B was too far gone- we got him into the Foof chair (like a beanbag but filled with foam) but the minute we turned on a show he went into a fetal position & started banging his head (luckily, on the Foof). After a bit, when he just couldn't relax enough to watch the show, we turned it off & I tried to talk him down. His eyes were red & looked like a frightened animal's. It was plain scary. C was there, too, & we thought maybe it was time to contact the doctor on call for B's psychiatrist, but B got very agitated when we mentioned that. We've talked to B before about the possibility of having to go the hospital if we felt he was injuring himself or needed more help than we could give him. I explained that his distress was very scary & that nothing we were doing seemed to help. I kind of jiggled the Foof as I was talking to him (B has found rocking & jiggling to be calming ever since he was a baby). B kept banging his head into the Foof, but the noises got quieter & quieter, so we just sat with him. B started to cry because his ear was getting abraded from the banging, so I asked him if he wanted to go back to bed. He nodded & nearly ran back to bed- dove in & started to cry into his pillow. I sat by him, still jiggling the bed a bit, & B finally said "thanks for taking me for who I am". I was taken by surprise- he'd been mostly non-verbal up till then, & I started to cry too. I told him that the only thing I'd change about him is the OCD, & that's only because it makes him so miserable... but that everything else about him I couldn't imagine any other way. He didn't tic again & finally fell to sleep while I sat with him.

This morning while thinking of last night's marathon, I couldn't help but reflect on this post by Kristina Chew in Autism Vox: which comments on another autism mom's responses perceived criticism by a disability rights activist. The autism mom says:

At the end of the day, we are tired and, yes, many of us have had very bad, dark days, but that is common when you feel so isolated and alone in the most important fight of your life: to save your beautiful child.

I have mixed feelings about this statement. It certainly seems to me to explain a great deal of the "curebies'" (not saying that this mom is one, although the "saving" bit seems to imply this...) desperation- feeling "isolated & alone". Recalling C's patient & persistent words yesterday afternoon, when the pokemon game went badly for B & he was furious & upset... I think of how lucky I felt to have a husband who is as fully committed to co-parenting this child with me. I would feel terribly alone without C- I just never could do this alone & I wonder if some of this desperation is coming from many family's not having such equally-committed parents (at least to the child-raising). But is this the "most important fight of my life"? Do I see life as a battle? Even after the hours spent keeping B from hurting himself & bearing witness to his misery last night, I cannot see this life with him as a battle. I am not fighting him, nor am I fighting autism, or really, OCD. I haven't written much from the Jedi perspective lately, but I believe that, in essence, how we think of anything, particularly, our lives, is how they are going to be... my life is not going to be a battle. I am aiming for peaceful co-existence, thank you very much, particularly with my child & my family.

In the aftermath of last night, even though we were committed not to increase B's seroquel, it is clear that he needs something more to help with the anxiety. Whether this means changing medications altogether or increasing the seroquel- we will begin exploring this with B's psychiatrist tomorrow. Today with B has only shown us more clearly that he needs more help to overcome the irrational fears the OCD causes him these days. He's been plagued by thoughts & tics all day & refused to play outside with the kids, saying that they were giving him scary thoughts. We have spent most of the day distracting B with reading out loud & pokemon games. We discussed over lunch what happened last night & I asked B if he could tell me what had upset him so much. He explained that he couldn't get the thought of Rufus' head being chopped off out of his mind. I know that I would have been distraught, too, if I couldn't get such a thought out of my mind... I mentioned that we wanted him to take more seroquel this evening, but he balked. We explained that, just as he's been out-growing his socks because his body is growing, he seems to have out-grown the seroquel again, too. I reminded him that he'd taken this much seroquel in the past, but we'd reduced it because he was taking the abilify (which ended-up giving him muscle spasms, so we stopped it & never upped the seroquel again). It turns out that his biggest worry was that he'd gain weight faster with more seroquel, but we assured him that wasn't the case. He asked us to call Dr. B, his psychiatrist, tomorrow & ask for her advice, & we assured him that we will. It may be time to try something else... It's so hard not having any real answers in the face of B's terrible distress. But we will keep looking- not to "save his life". To give him a life without fear, so that he can enjoy being a kid & playing with other kids.

Thursday, July 06, 2006

A challenging evening...

Hoo boy... yesterday was a bit too exciting/exhausting for B & we sure felt it last evening...

B had a great day at camp. He likes his new counselors/teachers, learned some Flash code, had a well-balanced (for him) lunch at the cafeteria (this was a great concern, since B has been known to overdo the fatty foods like chips & make himself sick, so we'd coached him a bit beforehand & it worked!), had a nice time swimming (he'll swim every day at camp, which is fabulous!), & then had the added excitement of knowing his best buddy was coming home with him to play. They had a snack when they got home & then had a great time doing the spy thing with all B's equipment. They were minimally annoying with it all- a bonus. E's dad came over around 5:00 pm, but spent quite a bit of time helping me goof around the new backup hard drive he'd helped me pick out. This purchase has been about a year in the making, since I started worrying about the 1000 photos stored on our older desktop computer last summer, & finally got my act together a couple weeks ago to seriously look for & buy one. E's dad is a software designer & loves the challenge of working with a mac occasionally :) so he has helped me do a lot with our home computer network. We had to reformat the hard drive to work with the mac, which took some time, then he showed me how to do the actual backup using the desktop. I did the laptop on my own later. So the boys had about 4 hours of non-stop playtime (B played the Dr. Demento cd for him, with great glee, too :).

After E & his dad left, B just melted down :( Dinner was a bit late & B was getting more conservative by the minute about what he'd eat (ended-up with crackers & peanut butter). I was very concerned about B's out-of-control-ness. He was ticcing so loudly that it was like screams & he looked just miserable. It was likely a mistake to approach him about it all right then... but I tiold him that, although I did not mean it unkindly, I thought that maybe having a play date after camp was too much for him. That did it- B became furious with me & wouldn't speak. We did get him to nibble some food, & after a while I tentatively said that, to me, the tics looked as though he was in emotional discomfort, so they worried me... but I wanted to know if my perception was accurate. B had a closed, angry look on his face, but he started writing in the air (a communication tactic he occasionally uses). I read "n-o-s-e..." & said "nose?", which was quite a non-sequitur considering my question... B actually cracked-up laughing then (so did C & I), but persisted & the word came out "nosey". In other words, he found my questions nosey... but the ice had been broken & the mood lightened enormously. He kept writing in the air for the next half-hour, at one point waving as though he were shooing a fly, to much hilarity, & that turned-out to be an apostrophe (gotta love 4th grade... he got his contractions down by the end of the year :). I struggled to figure out what he was writing, which B seemed to enjoy greatly. Finally, by dessert, he was ready to speak again & we all shared the leftover rhubarb crisp...

Later, B hugged me & apologised for getting mad. I explained that I probably had chosen the wrong time (C would strongly agree with this statement) but that it affects the whole family when he loses control like this, & I worry about him. We agreed that he may go to Ethan's after camp today, but I'll make sure to get him by 5:00 pm, & he promised to do his best to stay calm at dinner.

Also, the last week or so B has had more & more trouble getting to sleep. C thinks it's probably B out-growing his seroquel dosage again, but we've decided not to raise the dose & to see if we can find behavioural strategies instead, to help B manage falling asleep. Until recently C or I would read to B until he fell asleep- from 1/2 hour to an hour usually. A few nights ago I read for 2 hours (ok, it was the exciting end of "Pigeon Post", so that was a factor) & then had to stay for a 20-minute "quick minute" before B was settled-down enough to sleep. It was 10:30 before I left his room. C took over the following night... Last night, C suggested that, if we were going to survive this phase, we'd better take it in shifts, so I read for the first hour, then C took over for the next 1/2 hour of "quick minute" until B was settled. This was much easier on both C & I, so it looks like we've found our new bedtime strategy- for a while at least :)

This morning, on the way in to camp, B was ticcing very loudly (he sometimes "gets it out of his system" before doing something stressful) & I reminded him to try to keep the tics silent. B has a head-jerk kind of tic, but it often escalates into an accompanying loud, exploding noise &, in response to B wanting to keep a lower profile in public (to avoid feeling self-conscious) we've been trying to remind him to keep the tics quiet. He told me that he told his counselor yesterday that he has Tourettes, to explain the tics. I was floored & very pleased. Another wonderful instance where B has advocated for himself! I told him that I was very happy he'd been pro-active, since people feel much more comfortable with behaviours when they have names for them. B seemed to think it was "no big" :) I did not make a mom-fuss, but the glow lasted quite a while...

Wednesday, July 05, 2006

First day of summer camp...

I've been a bit blue this morning- as I always am the first day B is away after having been home for a bit. B started computer camp today. It's the same camp he attended last summer, which is a plus, since the only unknown variables were the kids & his group leader/teacher. I woke up worrying about Rufus- how would B keep track of him in all the distraction? They start out in one place, then move to the computer labs, then have lunch (in a cafeteria), then go swimming, then back to the computer lab for the afternoon session. Last summer B was carrying Rufus around in a belt pack but that went by the wayside sometime last fall, so I was really worried that Rufus would- horror of horrors, get lost. B was pretty amenable to leaving him home, actually. We imagined Rufus attending "camp mommy" & the activities he'd be doing at home with me & dad (C's day off today), & somehow it was ok... relief. Rufus is at this moment up on B's bed having fun with the pokemon stuffies & Genki, so I'm sure B will be happy to see him so happy :)

B went off to camp quite blithely with dad, looking forward to seeing his best buddy, E, who is coming home with B after camp to play. At the time, I was more concerned about who would be home when the roofers arrived this morning (to replace the shingles on a small porch roof -as it turns out, they didn't get here 'till afternoon), since I had a chiropracter's appointment that overlapped with the time C would be away taking B to camp... It didn't hit me that B was gone for the day until I was leaving the chiropracter & had an uncontrollable urge to go to the bookstore. This is what I always do when I miss B- go buy something distracting (JoAnn Fabrics is also high on the list). I was in tears by the time I got home. C told me B had gotten to camp in fine spirits & gave me a hug. He saw his teacher from last year to say hi, the new ones seemed nice, & the folks at the sign-in remembered him from last year (in a friendly way...). B really enjoyed this teacher last year & I'm sure he was psyched to see him again. So, that variable seems covered... but I always worry about how the other kids will treat B, too. Last year B had a not-so-friendly interaction with a boy he'd known from another camp 3 or 4 years ago. This kid actually came over to play way back when, but it was clear that he was still in parallel-play, developmentally (at the age of 7) & hardly interacted with B at all, so we never invited him back. B was never invited to his home, either... it was kind of a relief, actually. This boy is obviously on the spectrum & was not getting any needs met at that time that were going to help him to progress, at least socially, & I was hard-pressed to figure out how to interact with his mother on the subject- there was a lot of denial going on & a lot of "oh, he's so bright" being used to compensate for the poor kids real difficulties. Sigh. This same kid singled-out B for major picking-on last summer & we spent a lot of time problem-solving, until one day B just said to him "if I have done anything to offend you, I'm sorry" &, like magic, it was all ok. I was so proud of my kid...

OK, so being confronted with difficult situations like this are probably a really good thing for B. I admit it. And as B gets older & more independant, he's going to face even bigger challenges, & I've just got to get used to it. I said to C today that I worry about B more as he gets older- I always thought it was suppsed to be the opposite, that you worry less as they get older... My friend Paula, whose son has AS & is B's favourite sitter, & is heading for college, has had the same experience, so I know I'm not crazy. C says that he thinks it's natural, since the older B gets, the more he explores the world, & the more potential trouble he finds... the only comfort is that B is getting more sophisticated as he gets older, & he still talks to us & will let us problem-solve with him. A great blessing...

So, it turns out to have been a good thing that C & I had decided to use this first day of camp to catch a matinee of the Prairie Home Companion movie today- it helped to keep my mind off my blues & was fun to see, as we are great fans of Prairie Home. C is picking B & E up as I write & I'm looking forward to seeing how the day went. The dumpster just arrived, for the roof, I think (judging by the noise- I am so glad this is a small job... I just can't stand this sort of noise for very long).

Yesterday, the 4 of July holiday, was quiet for most of the day, but we had a fun indoor picnic for dinner. One of my cousins from Canada drove down & she & my mom joined us, plus our Japanese teacher, Tomoko, & one of C's partners whose family was out of town & working. Tomoko promised to bring some traditional Japanese summer food (& promised it woud be funky), so I decided to make sushi, too, & so we had a hybrid meal of burgers & white hots, potato salad, cheetos (B's request), salad, futomaki, donburi (sort of a casserole, with fish cake because I don't eat meat), & some funky noodles made of agar-agar. We broached a couple of bottles of mead C & I had made the year before B was born- it was very nice, too :) Enough to make us decide to brew some summer ale during these couple weeks that B is in camp, something we haven't done since he was a toddler.

It was fun to have such an international July 4th :) We talked a bit about politics- US, Japanese, & Canadian- but had the most fun explaining how we're learning Japanese to my cousin, Peggy. B held-forth on the language's gender differences, & how men & boys say some words that women don't & vice-versa. Then B & I shouted-out our usual conversational japanese phrases to each other: "B is annoying!", "mom is annoying!", "drink your milk!", "cut it out!" & B told everyone he was sorry, but he farted (in japanese, of course...). Lots of giggling ensued... Tomoko seemed pleased by B's grasp of the japanese concepts he was explaining :) B had a great time explaining things. We ended the meal with rhubarb crisp, harvested from the garden, first of the season. And lots of leftovers, japanese & american, for dinner today :)