Thursday, August 31, 2006

Meet the new psychiatrist...

I was looking back over old posts to see when or if I'd mentioned that B had lost yet another psychiatrist... I didn't find anything &, to be honest, I think I was too upset at the time to write about it. B has been seeing a child psychiatrist since April of 2004, when his psychologist referred us because of B's increasing anxiety & OCD symptoms, with the idea that therapy alone wasn't going to allow him to cope any more. This first psychiatrist retired less than a year after we started with him due to health problems. We had been seeing his replacement in the practise, Dr. B, for 1 1/2 years when she, too had to close her practise. Her second child was born nearly 3 months prematurely last March & was still in the NICU in July, when she learned that her child would be sent home on a ventilator, still being fed through an NG tube. I fully supported Dr. B's decision to go home & take care of her baby & told her so, but it left us with a major dilemma. The practise was not adding another doctor, but a nurse practitioner to "place hold" for a year, in hope that Dr. B will return to her practise. This did not sit at all well with C (a physician himself), & I had to agree that I think B's needs require someone with a deeper knowledge that nurse practitioner would have. So we asked B's psychologist, Dr. M for suggestions. The most highly-regarded person on the list, Dr. W, came with the caveat "but his practise is closed, so you won't be able to get in..." (so was B's first psychiatrist's, but Dr. M pulled some strings). We called B's pediatrician for suggestions as well, & she immediately mentioned Dr. W, & also that his practise was closed. She said that she'd try contacting him, but not to get our hopes up, & in the mean time C made some calls to other recommended doctors. About a week after my call to the pediatrician, she called me back all excited. Dr. W had returned her email (he'd never returned any of her calls before) & he had agreed to talk to us. This happened the day I had my migraine, last July, & I worked very hard before calling to leave a message with Dr. W, to make sure I sounded coherent. He called me back about a week later & after getting a sense of B's needs, agreed to take B as a patient. Once again the village came through...

So, our first appointment with Dr. W was today. C cleared his morning schedule so he could go with us, & we picked him up at work on the way. I was so grateful- I have terrible anxiety when I meet people for the first time, & meeting my kid's new psychiatrist just makes it worse (you'd think I'd be getting used to it by now, wouldn't you?). B had Rufus tucked in his right armpit & one of the Knight's Kingdom guys clutched in his hand. He & C played a brief game of checkers in the waiting room. Dr. W greeted us warmly & led us to his office. We chatted a bit about our luck with child psychiatrists & he assured us he's very hardy (& plans to be around for a while :). He handed C & I a patient info form to fill out & then turned & spoke directly to B about what sorts of things he likes. B was forthcoming about the things he likes, introduced Rufus & the lego guy, talked about his computers, explained his 3 "disorders" (I decided that B needs a new word... " neurological differences" maybe?). C & I occasionally added something, but tried to shut up & let the kid talk as much as possible. Then we were asked about ourselves. After that we told him about B's present meds regimen. Eventually, when he had a good picture of us as a family & where B was at, we talked about our wishes for B meds-wise. We told him that we'd really like to take him off the seroquel, but every time we try his anxiety becomes overwhelming. Dr. W said that the klonapin working well to help B cope with anxiety when falling asleep could work to our advantage in getting him off the seroquel. His main concern about B's present meds, other than the seroquel's side-effects, was that B is not on nearly enough of the zoloft to be of real help. He explained it to B as "you can't just tiptoe around the OCD, you've gotta hit it hard". He thinks that increasing the klonapin to 2x daily (up from one dose at dinner time) & slowly getting the zoloft up to 200 mg/day (B is currently on 100 mg/day) will allow us to finally get rid of the seroquel. He agrees that depending on an "atypical" neuroleptic for anxiety control was probably not the way to go, but understood how we'd gotten there. We agreed that B will begin the increased regimen of klonapin immediately, but with school starting next week it would be better ot wait a month before starting to slowly increase the zoloft & decrease the seroquel, in case B doesn't respond well. I feel that we are finally getting a ray of hope, meds-wise. I'm really glad that we've found someone that we all feel comfortable with & who is respectful of B (& us). And I'm really glad to finally have a psychiatrist for my kid. These past couple of months have felt like free-fall, with B on medicine & no-one to consult.

B is still in major anxiety mode, although his sense of humour is still in evidence. He is on the 6th or 7th of the Young Jedi Knights series but a character illustrated on the cover on this book triggered him big-time. He explained that this character, who looks like a wolfman, actually ate someone because they had lost a game to him (B told me it was meant to show what a terrible person he was, so I guess he understands why such a character was included in the story...). He requested that we put some tape or something over the character's face. I dug out some stickers & suggested B choose the silliest one he could find, which he took some time doing. Then we covered the face with it. B & I both cracked up when we saw the result :) The first thing B wanted to show dad when he came home from work was the cover of the book & the clever way we coped with the bad picture. I'm really relieved that B feels comfortable holding & reading the book... I told C tonight that I feel very much like I'm back in the days when B was an infant & I was nursing him. In between nursing times B would sleep & I had "stations" around the house where I sat & read, or sat & watched tv, or had something to eat. Each place had to be specially arranged because I couldn't put B down, so my reading station was sitting on the bed propped by pillows with my legs out straight & B laying in the channel between my legs... you get the picture. These past few days at home have felt similarly because B's anxiety requires so much management. He can do things without me, but I am constantly listening to make sure he's doing ok, & if I hear the tics escalate then I have to call to him to see if he wants intervention. Usually he does, so then I put down my book or the computer & go & extricate him from what he's doing (help him finish the computer game, find the lego piece, etc.) & then suggest the next activity. He seems to be floating through the day with little reference to time. He tried to tell C that a PBS show had started at 7:23 this morning... they plan to look it up in the programme guide to be sure. He's doing pretty well when we're out of the house for short times, but is very relieved to come home. I'm trying to get us out for walks as much as possible in the hope that the exercise will help relieve the anxiety. I'm hoping that getting back into the routine of school will help B get his life back. C reminded me that I need to start thinking about what I'm going to do when he goes back... he strongly urged me to make plans to go to lunch with a friend next Thursday because I'm always a basket-case the first day of school. Right now, I don't think I'd know my sewing maching if it bit me. I'm going to have to do some serious thinking & remembering- what projects were put on hold when school got out? What would I like to do? I haven't asked myself these questions in a long time... time to get thinking!

Yikes! I've been tagged...

I was reading Shh...Mum is Thinking & discovered that I have been tagged for the book meme (thanks Mum! :). I am pleasantly startled to have been tagged but will have to wikipedia "meme" to see what the heck it means... Anyway, here goes:

Karen by Marie Killilea. I read this book, by a mother with a child with Cerebral Palsy, when I was twelve. I immediately found the local chapter of the UCPA in the phone book & applied to be a counselor at their summer camp (but I was too young that year). I spent my summers from age 13-22 volunteering &, eventually, working for pay at CP Day Camp. Working with developmentally "disabled" kids saved my life by making me feel useful & loved. It also prepared me for my years in a wheelchair & for raising a child with autism.

The Lord of the Rings trilogy. I was one of those people who read it every year from the time I was 14 until I was in my mid-twenties (& yes, I set some of the songs to music). I still have my heavily annotated paperbacks...

A single-volume copy of the LotR trilogy (of course!) plus The Dharma of Star Wars by Matthew Bortolin (who studied to be a Buddhist monk under Thich Nhat Han) because if I'm going to be stuck on a desert island I'm going to need this book!

Any of PG Wodehouse's Jeeves & Wooster books. They make me laugh until I cry (not good read-aloud books :).

Sherri Tepper's books usually get me going at some point (one book even made me cry when I read the blurb on the back cover- so I didn't read that one). Her science-fiction/fantasy take on moral & societal issues are amazing.

A History of Hogwarts

It's not so much a book but a genre that I wish would never be written, & that's any book written with the intent to frighten the reader into doing (or not doing) something. They so often rely on pseudo-science & prey on people's predjudices & are just plain nasty.

Old Kyoto by Diane Durston, a travel book lent to me by my neighbour. I am learning so much about Japanese language & customs reading this book!

Another Country- Navigating the Emotional Terrain of our Elders by Mary Pipher. Her Reviving Ophelia was a fantastic resource for teaching senior high Sunday School & I expect the same from this book. C & I are in the life stage where this book is relevant...

I feel rather presumptuous tagging these folks, but what the hey...
MOM-NOS (you've probably already been tagged :)
ridgeback (heh, heh)
Roo... but you can do it by phone if you want :)

Wednesday, August 30, 2006

Ruminations on life & death...

Becoming a member of the Autism Hub has opened my world quite a bit. Previously I had found a small group of like-minded autism-related blogs that I visited regularly. Over the past few weeks I have been working my way through this much bigger group & it's a sometimes eye-opening experience. What strikes me most is the passion. There is a lot of anger in the occasional incursions of the curbie/biomed-types into the discussion & I feel the frustration of those attempting to respond respectfully (or not) but with equal passion that putting one's child's life & health at risk is not the way to deal with autism... Personally, I tend to shrink from overt confrontation (unless really pissed off), but I am seriously repelled by the almost religious fervor of those seeking a "cure" for their children with autism. What strikes me in the gut is their pathological denial of their children's personhood & lack of respect for who these kids are. What seems to matter most to them is how things appear, that their "dream child" will never be. I have never had a cherished image of who B will be- that is for him to develop for himself.

Estee's wonderful video is a breath of fresh air in the midst of this struggle. It's a less-strident but still-passionate message that autism does not mean a life ended or wasted.

I was talking with my therapist this afternoon, reflecting on my son B's life so far as compared with my own early years. The reason for the reflection was having gotten word today that my father is dying. In this early blog entry I talk about the effects of being an incest Survivor on my present life with a child with autism. My father has never met my 10-year-old child, not out of spite or anger, but because an essential part of my healing & becoming a person with self-respect was to cut off relations with my father entirely. My husband, C, has supported this completely- as he would, since I did not experience the main & most horrifically painful part of my recovery until after we were married (but, thankfully, well before B was born). I was fortunate to have married a man with the fortitude to go through my recovery alongside me & I attribute this "trial by fire" to being able to successfully & happily manage our very exciting life with B. It was empowering to compare my childhood years to B's life so far. B has learned the self-respect & has a level of comfort with himself at the age of 10 that I did not find until I was in my 40's. Sometimes I wonder why I don't doubt myself more in my child-rearing methods & style. Why do I feel pretty darn sure that what C & I are doing with & for B is right? Well. partly it's that we have the best "village" around & seek their expert advice regularly. Parly it's because there are 2 of us doing this, so we can constantly check our perceptions & tag-team when necessary. But mainly it's because my abusive upbringing made me a student of child-rearing. I have been noticing how other parents treat their children since I was very young, & as I got older I consciously bonded with & modeled myself after the people I thought were doing things well. The main common thread between all of these people I observed, & missing in my own life, was being respectful to the child. Even "love' was not allowed to overshadow respect. In my 10 years of being B's mom I have tried very hard to see him as an individual worthy of dignity & respect at all times. When I have fallen-down on the job I have apologised to him. B knows that I was raised by parents who did not behave respecfully to me. He knows that I have a birth-father that he has never met because he was a "bad daddy" to me. I have tried to explain the abuse simply to B, & only when he gets curious & asks. I was very fortunate to have found a "real" father in my step-father, who passed away 4 years ago, & to B he was the only grampie he will know. My mother & I have been able to salvage a good relationship over the years & she is a very involved grammie. My life feels whole right now, with no empty spaces, really.

As I think about my father dying, I feel as though I went through the worst when my step-father died, & that the death of my birth-father will bring mostly a final release from a small but lingering fear leftover from childhood. When I look at what I have been able to do- not only break the cycle of abuse in my branch of my family but raise a child who feels good about himself- I feel a sense of peace. I hope that my father will finally find peace, too. I have no regrets. I have the best the life I could have wished for.

This year's garden...

After our grocery shopping expedition this morning (which went quite well) B reminded me that I had wanted to get photos of this year's morning glories, which are purple instead of the usual blue. So I wandered around the garden with the camera for a bit, recording the harvest-time progress. The morning glories are growing on the fence that surrounds the raised garden (formerly the sandbox) where the carrots & daikon radish are growing. We have learned to keep our hands out of there (except to weed) until at least September for best results, so we are still waiting to see how everyone did :)

The tomatoes are growing in self-watering planters on the back deck, which is pretty much all the deck is qualified for, in my opinion. It was built with a step that runs diagonally the whole width of the deck, so you can't put a table on it & 2 chairs barely fit, so it's not place for leisurely breakfasts or hanging out. Each one of us has taken a fall on this deck as well, thanks to the weirdness of the design, & I even managed to fall off the diagonal step while carry our rabbit in his cage a few years ago, but at least bun survived the fall unscathed... We are looking forward to tearing the deck off someday, but until then it is good for planters & for staging tie-dyeing & indigo vats :)

The edamame soy beans are doing very well this year & we've already had a meal with them. The taste so much fresher than the frozen ones & are just as easy to grow as regular beans.

This is the poor, lonely shiso plant that grew from the row of seeds I planted. It's a japanese herb, used for pickling (makes them a lovely magenta colour) & I hope to figure out how to do some japanese pickling this fall (there's the daikon radish to deal with, for one thing...).

Perhaps our biggest crop this year will be the fennel seeds that grew from plants reseeded over the past few years from B's original herb garden. Fennel is great for gassy tummies, so it's no wonder we have some in the garden. I started B on fennel tea for colic when he was a baby...

The cool thing about the garden is that B has been right in there with us since we turned the garden over to him 2 summers ago for his herbs (which led to us starting our own tea company, "Mint Invasion" :). He likes digging in the dirt & will weed right alongside us if wearing gardening gloves (we gave him mine, since I never seem to use them). He learned a great deal about herbs that summer, but was happy to go back to veggies this year (last summer we kind-of treaded water, garden-wise, although I did purchase the tomato planters last summer & discovered that they work really well on the back porch). We started the tomatoes & peppers from seed last February- then discovered that the timing was a bit early :) We planted all the seeds together this past June, B, C, & I. When you consider that our back yard is the size & shape of a postage stamp (& the garden takes up most of it), our city garden is doing pretty well. The calendula patch is yielding flowers for drying, from which I'll make infused oil for salve. The sunflowers are about to bloom. The zucchini seems to be the only dud this year, with 4 plants only putting out male flowers so far (I do wonder about that...). B keeps a watchful eye on everything & reminds me to check for more edamame. We are all looking forward to pulling the first carrots & daikon :)

Tuesday, August 29, 2006

What mode are we in...?

I'm beginning to wonder if B is in post-vacation mode, pre-school mode, or something entirely different. He's had a difficult time today with intrusive thoughts & tics, so much so that it derailed a lot of our scheduled activities. We were going to take apart the old printer today, but he requested that we not do it, reason unspecified. We tried drawing using the new Pokemon manga-drawing book, but frustration set in almost immediately (although I did cheer him up a bit by drawing Rufus with "manga eyes" & accidentally adding eyebrows as long as his whiskers, which ended-up looking like a wispy Mohawk... :). The thoughts had him in tears at times, & only once was he able to articulate what was triggering them- "hands, feet, bodies, everything!" Seeing how much distress he was in I allowed him to move from tv, to computer games, to online computer games throughout the day. Dad had a church meeting right after work & would not be home for dinner, so we went out to lunch at our favourite Japanese restaurant as a treat. B handled this pretty well, although the tics became more obvious the longer we were out. We had fun making up new sentences in Japanese & declared the food "oishii" (delicious :). B almost got "stuck" in the thoughts a few times during the day, but I avoided meltdown by poking him & saying funny things in Japanese (like I did last night). Humour is our biggest ally these days. Before dinner we took a walk around the block, in the hope that the physical activity would help him to sleep tonight, & I also had him help me collapse a few old boxes on the back porch, which he did calmly, even though there was a tiny spider on one of the boxes. B had rice all 3 meals today :) He had miso soup & edamame with lunch, too, & milk with the other meals. There's something about rice that conforts & centres both of us. I posted the onigiri recipe on Jedi Workshop this afternoon & celebrated by having more onigiri for dinner.

C came home & managed to get B in his jammies, then they played a game. By 9:00 B was exhausted, but wanted me to read some more "Dragonsinger" to him as he fell asleep. He lasted about 5 minutes, but at least didn't have the trouble falling asleep he had last night. I think the thoughts just wore him out today...

Since B developed the Tourette's last summer he has seemed less likely to exhibit the perseverative behaviours that he's had since at least kindergarten (the tics seem to have taken their place). He was whacking himself on the head last Spring, for which we used ball-therapy successfully, but that's been about it... until now. I noticed over vacation that B had been carrying things around a lot, & chalked it up to being in an unfamiliar place & needing some consistency. But he's been doing it at home, too, & I'm thinking that it's going to be with us for a while. B has filled the tv room with legos, which he holds or manipulates while watching tv (it's a really tiny room, too, so walking through has become very hazardous...). He constantly has a lego guy or small toy in his hand & tried to put on his socks today with something in his hand, which was predictably frustrating, especially as B has never been much good at putting on his socks. He did inform me, amid the grumbling (I had already suggested he put the toy in his hand down), that the woolie socks that I knit him are the easiest to go on & he can't wait till it's the right season for them. I was gratified, but realised that I had better get knitting because his feet have grown over the summer. Hs feet are as big as mine now & I only have 4 pairs of socks of mine to give him that are suitably non-pink or girly. Not that he would notice, but I don't believe it would be good for him to be any more of a target than he already is to other kids... Anyway, I realised today that I had better make sure that school is prepared for B's newest perseverative behavour. They are very responsive & accepting, but it always helps to clue them in when I actually figure something out about what B is doing & the role it plays in his life. C & I, in concert with B's psychologist, had already decided that it would be good for B to try & leave Rufus home this year. He did if for camp this summer & got by just fine, plus Rufus always stays home when B rides his bike or goes sailing. He worries so much about Rufe & school is so distracting that I worry that something might happen to Rufus & B would never forgive himself. Also, he'll be with 5th-8th graders this year (all on the same floor of his small school) who might give him trouble about hauling a stuffed animal around with him. This new behaviour of holding things might allow B to substitute something smaller & less precious to hold on to at school, too. We'll see...

Tomorrow we'll go food shopping in the morning (fingers crossed) & then C hopes that he & B will be able to sail in the afternoon. The weather should be nice & they'd like to get in a practise run in before the race on Labour Day, around the bay, that they plan to do for the first time. Hopefully humour & distraction will help B get through the day & have some fun.

Monday, August 28, 2006

Vacation recovery mode...

We are still in vacation recovery mode, at least B & I are. C had to go back to work today, although he spent some hours over the weekend at the office catching up (otherwise he would not have gotten much done today...). B & I had a slow start & didn't even get to filling out our weekly schedule until lunchtime. I made sure to make rice for lunch, which is comfort food for both of us & soemthing we haven't had since before vacation. B usually just has it with shoyu (soy sauce) & eats his with hashi (chopsticks). I often have temaki handrolled sushi, but today I didn't feel like making sumeshi (sushi rice) so I made myself 2 onigiri (rice balls) with umebishi plums & goma shio furikake, with some home-grown tomatoes on the side... yum! I finally found umeboshi that I can handle. They are usually soooo sour that I can't eat them, but I found some "honey" umeboshi & they are mild enough that they are more like pickle & less like torture :) B won't touch japanese pickles of any sort. I think he'd like the goma shio (salt & black sesame seeds) because it's so salty, but it looks too weird to him so he won't try. He is getting a bit more adventurous, food-wise, though, thanks to becoming vegetarian. C has a beanloaf recipe that he's made for years, with kidney beans & cheese & bredcrumbs & eggs & onions baked together. We added green pepper to the mix some years back to spruce it up, palate-wise, & it's quite nice with ketchup (for C) or salsa (for me). B has never touched it, or any casserole for that matter, but when C made it for dinner yesterday, B surprised us & asked for some. He had it with ketchup & asked for seconds... It's very nice to have another meal that we can enjoy as a family!

This afternoon, after quiet reading time, we played a Star Wars Trivial Pursuit DVD game lent to us by my chiropracter. She had noticed B reading the "Young Jedi Knights" book at one of my appointments & told him she would bring the game for him to try. She said her daughters loved it. B had taken a stab at it before vacation, but had not read the instructions & ended up watching some of the questions & not understanding how the game worked. So we set it up & figured out how to play, but even though he was beating me big-time, he kept getting frustrated when he'd miss a question & kind of pissy. I do not tolerate this sort of behaviour when we're playing games, so I gave him a couple warnings. He complained that he was at a disadvantage because he hadn't seen the last 2 movies, but I reminded him that he'd read not only the Scholastic novelisations, but the comics, too... & besides, he was winning! Eventually, he began ticcing because of Jabba the Hut (who sometimes scares B), so we decided to declare him the winner & put the game away. I let him watch the "PR's" (Power Rangers, but he's requested that I not say the name) to get his mind off Jabba, & after snack he played on the computer. Tomorrow we will do more "stuff", I promised myself...

Getting B to bed this evening took an hour & both C & myself, tag-teaming. B was restless, not comfy on the body pillow, not comfy off it, flipping his pillow over because of thoughts... When I came up to take my turn C was telling B a funny story about his encounter with a skunk this morning on the way to work (both parties survived, I'm hapy to say). I lay down on the bed, on the other side of the body pillow, & tried to get B to settle. When the thoughts would make him moan I'd poke him gently until he giggled. I made comments about his & Rufus' butts in japanese (we're learning to use adjectives in sentences), which also helped to distract him. After what seemed like an eternity of wriggling, B drifited off. Since we've been home we've been listening to 1/2 hour of HP & the Half Blood Prince on tape, then going up to bed, but I told C that I think I'll go back to reading him to sleep. It's a lot less tedious for me & B seems less wriggly as he listens to me read... C also mentioned that they had planned, while chatting during C's shift at bedtime, to watch some of a HP movie before bed tomorrow night, so I could take over after they finish with the movie. We also decided that B needs to get back into some physical activity, so maybe we'll take a walk around the block tomorrow, too. Hopefully this will help him relax & settle to sleep better.

Sunday, August 27, 2006

Vacation pt. 4...

Wednesday started early for C & B. C was awakened around 2:30 am by B calling for him because not only had he kicked off his sleeping bag, but it had fallen off the top bunk & onto the floor. B finally fell back to sleep, but C had trouble doing the same & didn’t drift off for another hour. I missed the drama, but heard B get up around 7:00 (late for him) & pop a disc into the laptop. B was really good all week about using the headphones & not making a lot of noise as he either played the HP computer game or games on the HP movie discs, letting us sleep in a bit. The first night at the cabin C had given B his watch & I leant him a flashlight so that he would know when it was 6:00 am, which was when we allowed him to get up & play on the computer. Before then he could read a book with his flashlight. He slept past 6:45 most mornings, which didn’t suprise me at all with all of the outdoor activity.

We started the morning, after cereal & doughnuts at the cabin, at the club’s waterfront. B wanted to sail his little boat off the point (down from the beach), although I did convice him to put his bathing suit on in case he wanted to go to the beach as well. C went with him to the point, but somehow B slipped into the lake & landed on some nasty rocks. He was soaked & his right knee & shin were lacerated & bleeding. B was frightened from the suddenness of his fall, too. I mopped up the blood with a kleenex & decided that we should go back to the cabin to wash it & apply healing salve & maybe bandages. My in-laws were getting ready to go out for a sail, so we 3 headed back to the cabin. The wounds were more scrapes than lacerations, with a lot of nasty, red scratches, so I cleaned them well & just put salve on the whole area. I gave B some tylenol for the pain, got him into dry clothes (he had to borrow a t-short from dad because he had been soaked so many times this trip he’d gone through all of his extras) & suggested we watch his new pokemon movie together. C’s parents were going to meet us at the cabin at some point (before lunch) because the afternoon’s plan was a bit different than usual. Our financial planner is in Pittsburgh, part of a company that my father-in-law had worked for as office manager (his retirement job) before he finally retired completely. Since the lake is just an hour or so from Pittsburgh, we’d had our planner meet us here when we were up 2 years ago & thought it worked pretty well for our annual meeting (we meet by phone in the alternate years, when we don’t come to the lake). This year my father-in-law thought it would be fun to invite our planner’s wife & 2 little boys along, to play on the beach & maybe go for a sail, & we thought it was a fine idea too. Co-ordinating our meeting place & then getting to lunch at a reasonable time took some planning, but we pulled it off & found ourselves at a nice lunch place (that my mother-in-law & I had scoped-out the previous Saturday before the rain hit) at about 12:35. B was a bit nervous with a new environment & the little kids around, but he kept it together & even helped me make origami birds to entertain them. He decided to order a salad with garbanzo beans & sunflower seeds on top (hold the onions, feta cheese, & dressing :) & seemed to really enjoy it. C & I made a note to ourselves to remember garbanzo beans when looking for alternative protein sources for our new veggie-boy. He was done eating before everyone else, though, & really wanted to go, but did hang in there until everyone was ready to leave. I knew that having the little boys around might be difficult for B so I had packed a secret weapon :) I had purchased some HP Prisoner Of Azkaban legos a couple years ago for B to earn, but he had lost interest before earning all of them (the bionicles must have been cooler then :), so I had a couple left over. I had brought the “Lupins’ Classroom” set just in case we needed a distraction. B couldn’t believe that he didn’t have to earn the set & was delighted to get it. We set him up in the clubhouse on a table near the one where we were meeting with our financial planner. If there hadn’t been so many flies in the room B would have been in heaven, but he was very annoyed by them (they weren’t fun, but we grownups coped). When he was done with the lego I suggested he go to the beach & see what was happening. He didn’t come back for quite a while & later he informed me he had been helping by teaching the boys (ages 2 & 4) how to build a sand castle. He came in for a snack & we sent him out with a box of freezie-pops for everyone. Eventually, though, he had had it & wanted to leave. We were done with our business, luckily, & so I took B back to the cabin. As we walked to the car he let loose with some major tics that he’d been holding in (one of the boys had a Sponge Bob water toy & B detests SB so much it makes him tic). I told him I was so proud of him for helping with the kids & showing them how nice big kids can be. He reminded me that not all big kids are nice, but I told him that he’d done a good job of keeping himself together in spite of being triggered & had been very kind to them. We came back to the cabin, had tea & a snack, & watched the rest of our pokemon movie. Then B went outside & played with his whittled stick. When C came back (our planner & family dropped him off at the cabin) he & B built the evening’s fire & we got ready for another dinner with grandparents. C & I had decided, based on B’s reaction to the idea of going out to yet another restaurant (negative) that we would forego the usual final day’s breakfast out with grandparents & invite them over to say goodbye after we had eaten & packed in the morning (tomorrow). After his parents arrived, C explained that we had so much food left over we had decided not to go out. He left B completely out of the explanation, which I think was a good idea. I had gotten the feeling that they were feeling hemmed-in by B’s needs & we didn’t need to give them any more bad news at his expense. They were surprised & decided that they’d say goodbye this evening & not come over in the morning. I was somewhat takend aback by this, but since everybody was behaving themselves I decided to just let it be. The fire, which B lit, was the best yet & after we ate the last of the marshmallows & s’mores we torched the sticks as well. B fell asleep very quickly (I’ve been reading him Anne McCaffrey’s “Dragonsong” at bedtime) with very few comments on the story. C & I chatted a bit then, sorting through the day’s events, trying to find patterns to what made B melt down & what allowed him to cope.

We’d been given a copy of Dawn Prince-Hughes book “Songs of the Gorilla Nation- My Journey Through Autism” & had both started reading it while on vacation. Her story has led me to re-assess my attitude & approach to B’s OCD & I wanted to talk to C about what I was thinking. Since B began having serious OCD symptoms, just around his eighth birthday, we have been operating under the impression that B’s OCD is a separate, & more pathological, entity from the AS, but Prince-Hughes’ description of her childhood experiences make me wonder if that’s just plain wrong. She seems to have developed OCD-type symptoms to cope with the anxiety associated with having (undiagnosed) AS. We have noticed over the past couple of years that B’s sensitivity to smells has become more & more intense, & this makes me wonder if the OCD is also another AS-type behaviour that has had same sort of intensification as the odour sensitivity. C said that he had been thinking along the same lines, after reading the book. We decided that maybe we should speak of the OCD as something that B will have better control of as he gets older, rather than something he’ll get rid of. It makes me think of a recent conversation B & I had, about finding good in things. He challenged me to find good in the OCD, & I reminded him that, during a meltdown a few weeks ago, we had left him alone at his request, but that I had returned to him when I had heard him ticcing, to find him over the intense feelings & complaining of a “thought”. I asked him if the thought had distracted him from the meltdown feelings & he said that it had. So I told B that I never would have thought that OCD would come in handy, but that it had done a good job of getting through & dissipating the the meltdown feelings, & he agreed that that was true. I’ll comment more on Prince-Hughes book as I continue reading it.

Tomorrow we’ll pack it up & go home. B says emphatically that he’s ready :) I am ready to be in my own, comfortable bed & in charge of my own life & daily schedule (as much as I ever am :). Having to accomodate so many needs has been really tough, but has made me realise that we’re doing pretty well when we are in charge of what we do, & what & when we eat. B enjoyed learning to whittle &to light fires, talking to kids he doesn’t know, making boats with granddad, sailing, & playing on the beach. These are things we just can’t do from home, so with the unsettledness of being away has come new experiences & accomplishments. I’m going to try to remember this when we go to Japan next year! But mostly, I’m glad to get a new perspective on our life as a family, & I’m glad to be going home!!

Saturday, August 26, 2006

Vacation part 3...

Tuesday we decided to start out with a supplemental shopping trip, so my in-laws met us at the cabin around 10:00 & we went back to the “big” market for more cheese, yoghurt, & bottled water. When we got back to the trailer we discovered that my mother-in-law had invited someone from the club to lunch, & so lunch preparations began in earnest... sort of. The trailer’s kitchen is barely big enough for 2 people, so only C’s parents were involved in the prep. B was getting antsy, so C started a parcheesi game with him. While my father-n-law was madly preparing lunch food my mother-in-law decided that the flowers needed fresh water. They started sniping at each other while doing various things & then my mother-in-law decided that C should take the flowers out to the picnic table & that B should retrieve the lawn chairs from underneath the trailer...! B is not only terrified of spiders & webs, but hadn’t the first clue of where to look for the chairs under the trailer, so C just said he’d get them, much to her apparent dissatisfaction. I chatted with B & kept knitting to keep my mind off the chaos. B was grumbling that there was a strange person invited to lunch, so I assured him that he didn’t have to join us outside for lunch. C seconded this, because B was getting the upset look on his face that heralds a meltdown, & this seemed to calm him. By this time it was 12:30 & B was really hungry, so we let him start eating. Fortunately, we had allowed him to get a “lunchables” (meatess, of course :) at the grocery store (something he’s never had, & would never be allowed for lunches at home, but we thought it would be ok to try for vacation), so he opened it & started in. My mother-in-law said something about him eating, but we told her that he was hungry... The friend arrived then & the adults sat on lawn chairs & chatted with snacks (they opened a bottle of wine, too, but C & I abstained, since we didn’t want to fall asleep in the afternoon) for a bit before eating lunch, so I was soooo glad we’d let B eat earlier. He sat in the trailer & read his Jedi book for a while, then he & C finished their parcheesi game while we finished up with lunch. The friend turned out to be a retired kindergarten teacher, so it was interesting to talk to her about how special needs kids were integrated into the school she had worked in. She was very interested in B’s school & how they & our school district handle special ed. I really enjoyed talking to her.

The wind was blowing nicely for a sail, so the friend joined C, B, & granddad for a sail. C’s mom took a nap & I went back to the cabin & watched a couple of episodes of Inuyasha which I had brought as a treat for myself :) C had requested that I bring an afternoon snack back with me, so I met them at 4:00 on the beach with juice & chocolate-chip cookies that B & I had made at home before we left. They had had a nice sail & B had even taken the tiller for a bit. Now they were back sailing the little boat off the beach (my father-in-law had attached kite string to the boat so they could “fly” it outside the swimming area). My mother-in-law joined us for a while, then we went back to get dinner ready. C had been drying wood in the sun all day & he & B built a very nice fire for afrer dinner. We got “eating & drinking time” set up & B & C did some more whittling, making a beautiful, smooth stick that B decided was not to be used for marshmallows but would be preserved. He was using it as part wand/part fencing foil & having a great time making swishing noises with it :) My in-laws arrived & we finally got dinner going. My mother-in-law had mentioned once before that C was drinking wine by the time he was B’s age, & we explained that B is allowed the occasional sip, but that he is on medications that make it unwise for him to have any more than that. Unfortunately, this did not register because she went and offered B some gin as I was getting dinner on the table. C, his dad, & I all yelled simultaneously, to the effect that this was not appropriate & she subsided sullenly. I was pretty upset, since I felt that this was not only disregarding our wishes but B’s health. Drinking has always been very inportant to C’s parents, & even allowing for the cultural contexts of their age & economic status, it has always felt to me that they are too fond of their alcohol. C, perhaps intuiting this, had made a rule for himself in med school that he would drink no more than every-other day, since he thought it would be too easy to come home every day from a hard day at the hospital & pop open a beer. I’ve never been much of a drinker & haven’t touched “hard” liquour since B was born, mostly because I don’t tolerate it well & don’t enjoy being drunk. I think that somehow I became associated with C’s rule about alcohol, although we didn’t even start going out until he’d been in med school for a year, & so it’s been seen as my “fault” that C doesn’t share his parents’ value for liquour. It’s a constant undercurrent, though, & I feel like C’s mother’s disregard of our feelings about B & alcohol are part of this whole, unspoken issue. Big sigh. I think that the main problem was that wine was served with lunch & by the time dinner rolled around, gin had been added to the mix, so my mother-in-law in particular was not behaving her best- sniping at my father-in-law & unpleasantly muddled. We managed to get through dinner, although it wasn’t as good-humoured as the others that week, but B didn’t really seem to notice any of the unpleasant behaviour. He was really focused on the camp fire after dinner, & he was not disappointed either. Granddad taught him how to light a wooden match & B himself lit the campfire. He was delighted :) We toasted more marshmallows & ate more s’mores & the fire was so much better with the lovely wood C had set out in the sun.

Friday, August 25, 2006

...real life interrupts...

We seem to have hit the ground running, now that we're back, so I'm interrupting my vacation journal briefly. We had 4 phone messages when we got home yesterday (we must've done a particularly good job of letting everyone know we were going away :). The last message was from our school district, informing us of a meeting about B's IEP that had been called for... the next morning at 9:00 am! It was an indistinct message with no real info. The call had come-in just about an hour before we got home. I quickly called the number that had been left & got a machine. I then called the special ed. co-ordinator for our school (a neighbour, as it happens) & she gave me another name & number (calling this I got another machine), & told us she had not been informed about the meeting. I was pretty upset, since we are supposed to be informed of any meetings about B's programme well in advance, & I was convinced that this meeting was not legal. Besides, we had no real idea why they had called the meeting. In the midst of unpacking & doing 3 loads of laundry, my gut clenched at the unknown & unwanted intrusion.

C decided that the only thing to do was for one of us to show up... so he got up early this morning. We had looked up the printout on parents' rights &, indeed, they were supposed to have given us 5 days notice by mail before calling this meeting. C decided to bring a tape recorder, since we had none of our support team from school with us for this meeting, & I was staying home with B. C also brought our copy of B's current IEP & the rights printout. Although the meeting was not down in the official meeting book at the school district offices, C managed to find it, plus the person I had called yesterday at the recommendation of our special ed. co-ordinator, who happened to be the head of special services for the district. She had not originally been part of the meeting, but she sat in, which was to our advantage. When C brought up the short notice for the meeting, he was informed that they expected him to sign a waiver- to which he replied "really?". They never brought it up again. When he requested to tape the meeting, they said he could, if they could, but no-one found a tape recorder... fortunately, it became quickly obvious to them that he was not going to agree to any changes to B's IEP without a full committee meeting. Apparently, the question to be discussed was about how B's school, which is a private school, was applying B's IEP, who was giving him the consultant teacher hours required by his IEP, & who was paying them. They wanted C to agree to change the IEP, but since no-one from school was present, & we did not know the implications of the change, he would not agree. The director of special services was very helpful to C & essentially told them that they would have to reconvene at a later date, with proper notice & the full team in attendance. C had gotten a sense that complying with state regulations had driven the whole thing, but it was pretty dumb to waste everybody's time by calling the meeting without having the necessary information & people in attendance (not to mention doing it illegally). C called our friend from school to let her know what had happened & warn her to look out for the notice of the "real" meeting.

We had a nicer afternoon... Since we are still technically on holiday, we decided to go to the science museum for lunch & take a wander around the exhibits. The place was mobbed- they were having a robot day, much to B's delight. He spotted the most recent Lego Mindstorms model & his exclamation was overheard by one of the exhibitors, who seemed quite pleased by B's knowledge. He asked B how he knew about the new legos & they discussed specs for a while. B was quite comfortable talking lego "shop" & it seemed to help him tune-out the hubbub fo the mobbed exhibit. We were given info about starting a lego robot club at school, too, which we'll look into.

We had a relaxing afternoon. B is back into Power Rangers, which is interesting. Just 6 months ago he was so self-conscious about them you couldn't say either word (we called them the "PR's" instead) without causing him to tic... He watched old episodes for a bit, then legoed like mad, before dinner. Grammie came over for our regular Friday night dinner & we had a hilarious game of Uno after. Now we are listening to Harry Potter & the Half Blood Prince on tape (begun on the way to Washinton in June, then continued on this car trip to Penn.). B's back into Harry Potter, so it's fun to share our ideas about HBP again.

Vacation part 2...

Actually, there is a little bit to tack on to the evening of our first full day at the cabin, forgotten in all the excitement... When we got back to the cabin after leaving the crowded corn roast, there was no electricity :( B had been really looking forward to watching a video to get himself calmed down, but there were no lights, let alone power for the laptop (we always forget that there’s a battery, but I’m not sure it would have lasted long enough anyway...). B was pretty unhappy as we sat in the darkish cabin & brainstormed things to do. It was too wet & mosquitoey to go outside where there was more light. C suggested playing Harry Potter Uno by flashlight, but B was not in the mood. As B’s mood became stormier & stormier, I pulled out some kazoos packed on a whim & handed them out. C & I started to play anything that came into our heads & B soon joined in. In between exploring the kinds of weird noises B could make on his kazoo, we played camp songs, rounds, hymns from church, & even the themes from the first 2 Treks & Staw Wars (what we could remember). We ended-up with a “guess the Beatles’ tune” game. It was 45 minutes of pure silly fun & we were all in a great mood afterward. B was ready for the Uno game by flashlight, & mid-game we were interrupted by a friendly park ranger checking how we were doing. She said that the park had lost a lot of trees in the storm & they’d had to shut down the power to deal with downed lines, but that it should be back within 2 hours. About 10 minutes after she left, I noticed the clock on the microwave was flashing, so we tried the lights & they were back. An eventful end to an eventful day!!

Sunday was cloudy & the weather didn’t look much more promising for sailing. We got up & ate cereal & doughnuts for breakfast, then went over to the club. I was worried that C’s mother would say something about our precipitous departure the night before, but not a word was said. B, C, & his parents played board games during the morning while we waiting to see what the weather would do. After lunch, they went down to get the boat ready, since it seemed as though the racing would actually happen. C was crewing with his father, along with another person from the club. The wind kept picking up & B would not have been able to go out with them, even had there been room. There were whitecaps on the lake & people were putting foul weather gear on as they readied their boats for the race. B & I got settled at the little beach in front of the club. Every year they truck in beautiful sand that slopes right down to the water, where the waterfront is roped-off for swimming. B had changed into his suit & was busily making a dam & reservoir before the boats even started out into the lake. The wind was whipping along, but B didn’t seem to notice, he was so engrossed in his projects. My mother-in-law was taking a nap, so I sat alone & knitted & listened to the play-by-play of the races (the Thistles & Lighnings race together, with staggered starts) from the people with binoculars on the club porch. The wind was so unpredictable that boats kept rolling over. I got nervous when they mentioned a yellow-hulled boat going over (my father-in-law’s boat is yellow), but it turned out to be a Thistle. The club nurse went running over to the rescue boat at one point, to receive someone who had started having an asthma attack when her boat rolled over. It was very exciting. B was oblivious to the excitement & the temperature. I eventually put his beach towel on as a shawl, but he said he was fine when I asked him if he was cold. Occasionally kids would wander down to play or swim during the race, but the only time B interacted with them was when a group of 4 boys came down to swim, picked up some of his beach toys & started to use them as weapons against each other. The decided one of them was “the kraken” & they were “shocking” the kraken to kill it. I wondered how B would take this game. He got in on the fringes of it, asking who was a “crewman” & who was the “kraken”, but did no more than squirt his shark-shaped squirter at the designated enemy. When 3 of the boys started picking on the 4th, chanting & ridiculing him, B backed off. I called him to me quietly & recommended that he saty clear until the whole thing was settled. He had already decided to do just that. Later on I took B aside & explained that they had been playing the new “Pirates of the Carribean” movie. B had 2 questions about their play: why had it been so violent, & why had their parents let them see the movie...? After about 2 hours at the beach the race ended & we went over to see dad & granddad after their boat came in. I could tell they had done well because they had come in pretty early after the race. They came in 3rd & C’s dad was very happy. We decided to head back to the cabin then, since B was tired after so long on the beach & we all needed a snack. C had blisters on his hands (despite his sailing gloves) from handling the main sheet in the heavy wind, & they needed to be salved & bandaged. We got back to the cabin & ate something, but B’s exhaustion was overwhelming him & he was soon in rage/meltdown mode. We did everything we could to help him calm down, but after 1/2 hour he was kneeling on the floor of his room rocking & screaming. C was sitting with him & I was trying to get dinner started because my in-laws were due to come over for dinner soon. I finally decided that B needed an intervention, went into the room, & picked him up off the floor onto the bed. I explained that I was worried about his inability to calm down & that I was afraid that he would get hurt if I left him on the floor. I sat with him & rocked him & eventually he bagan to “come down”. As usual, he apologised & cried a bit, & the 3 of us deconstructed things to see if he could figure out how to stop the rage before it took over & if there was anything we could do. C’s parents arrived before we came to any useful conclusions, but dinner we pretty well & B went to bed without any difficulty.

Monday B had wanted to go for a sail, but the wind seemed to have blown itself out & the lake was dead calm. B, C, & his parents got a Monopoly game going, & C & granddad finished the little sailboat they had been building by making the sails & rigging them onto the boat. B started getting restless so we took a walk down to see the water & check the wind. On the way back to the trailer for lunch, B became very snotty & angry (we were talking about alternative “swear” words- a constant endeavour these days) & by the time we got back to the trailer he was heading for a full-blown meltdown. We couldn’t talk him down & he wouldn’t pick an alternative (go back to the cabin, go for another walk, go to the bedroom in the trailer for some privacy). In the midst of it all my mother-in-law announced that when C’s brother had behaved this way she just sent him to his room to calm down. My father-in-law advised her to let us handle things (bless him). We finally decided to go back to the cabin, so we each took an arm & walked him to the car. The very act of moving him seemed to unstick him, & by the time we were on the road he was ok. I was wracking my brain to see if there had been environmental factors in the recent meltdowns. Lunch was not on time & he hadn’t had a mid-morning snack, but when we offered him food back at the trailer he refused it. During our lunch at the cabin we talked about how to manage things when he got so angry. B called the feelings “like sparks” & said that they overwhelmed him, so we asked if we could ask him if he was “sparking” & then he could tell us what we could do to help him. He said that saying funny things & having Rufus “fart” in his face would help if he was sparking. It was very comforting to be able to discuss the meltdowns with B & get his input into what happens to him. After lunch we went back to the trailer. We had explained to B that his grandmother might have advice or comments about his meltdown before lunch, & that she may have interpreted it as a tantrum, but that he could tell her to ask dad if she had any questions about it or unwelcome opinions. When we got there B was very pro-active, telling both of his grandparents that what he’d had was not a tantrum but an OCD-related difficulty. C & I stayed out of these explanations & after B was done there were no questions or opinions offered. I felt really proud of B’s willingness to bridge the gap of understanding between himself & his grandparents.

This is probably a good point to mention my in-laws’ attitudes toward B & autism. Since we do not live in the same town as they do, they are not as aware of day-to-day life with B, but we have always kept them up-to-date as to his diagnoses & particularly how they affect interacting with him. My father-in-law’s attitude seems to be to follow our lead & let us deal with B when he’s not sure what’s going on. My mother-in-law likes to give advice, but she is not terribly interested in the information we give her about AS, & whenever we mention the OCD she acts as though she’s only just heard of it... The main thing that grates on me is that she loves to compare B to C’s elder brother, who we believe to be paranoid schizophrenic. He lives about as far from his family as he can manage & was homeless before he managed to get on SSI. I wish I could have more compassion for him, but he’s one of the most arrogant, self-centered, & manipulative people I’ve ever met. After a disastrous visit with him when B was 5 (we all met at my in-laws for Thanksgiving that year) C & I decided that we would never see him again unless absolutely necessary. So it’s very hard to hear my mother-in-law breezily comparing B to C’s brother. C believes that perhaps, had the social environment been different in the 60’s & his brother had had the benefit of appropriate interventions, maybe his story would be different. In order to make visits with C’s parents easier, C preps them by phone a few days before the visit. For example, they have never dealt well with my being vegetarian & so we knew B’s new veggie-ness might cause difficulty, so C explained & told them that B & I would bring our own food for lunches (we did lunch at my in-laws trailer & then dinners were provided by us at the cabin). Trying to explain anything other than specific behaviours (like the tics B’s developed last summer) usually doesn’t register with my in-laws, so we do as much prep ahead of time as we can. That’s one reason we have dinners at the cabin, since that’s B’s most difficult time of day. When they are in charge of dinners, we often don’t eat before 7:00 or 7:30, because “eating & drinking time” (as B calls their cocktail hour) is very important to them. When we are in charge, we can push things earlier & make sure B isn’t freaked-out from hunger before dinner can arrive. B also has more alternatives for diversion when we are at the cabin. When visiting with my in-laws the main difficulty has always trying to accomodate B’s needs, which do not always intersect well with my mother-in-laws. Sigh.

Back to Monday afternoon, B had wanted to go sailing, but the wind was still absent, so he & granddad went to sail the little sailboat they had made, down at the beach instead. His grandmother decided to take a nap & C was helping someone at the club who had just bought a Snipe to tune & rig it. B had declared himself through with sand & beaches the day before, after taking another shower (2 in 2 days!) to get the sand off his body & complaining loudly about how uncomfortable the sand was the whole time he showered. However, he lost interest in the boat after a little bit so was back at making holes in the sand & diligently pouring water in them. I sat at the beach & knitted & chatted with granddad. In the late afternoon we went back to the cabin to get dinner ready. B was at loose ends, so C decided to teach him how to whittle, since they were going to make marshmallow sticks for the eagerly-awaited campfire planned for after dinner. (We’d tried a campfire the previous evening but the wood was too wet from all the rain.) B really enjoyed the whittling & made all sorts of smoothish pieces of wood from larger pieces :) B also made friends with some kids in the cabin across the road while we were getting dinner ready. He had been scoping them out for a couple days & finally got the courage to talk to them. C & I were really pleased because when B came back to report, he knew the names of the kids he’d been playing with, which is very uncommon for B. We talked about them a bit over dinner & he was able to give more bits of information- the boys were friends, not brothers, which, again, was an amazing accomplishment for B, who rarely can remember what other kids look like, let alone know their names & other details. Dinner went well, but the highlight was the first campfire of the trip- a bit wimpy due to still-damp wood, but enough for toasted marshamallows & s’mores. After B was asleep, C & I watched “Spirited Away” on the laptop. We were exhausted from managing meltdowns 2 days running & really enjoyed escaping into such a beautiful movie...

Again, to be continued...

Thursday, August 24, 2006

Vacation part 1...

“You said it would be a corn roast, not a million people would be there, too!”

This about summed-up B’s experience with the big social event of the weekend at the yacht club (sigh). He had been looking forward to the corn roast, too, because he loves corn.

Our car trip to Pennsylvania last Friday was uneventful, although I did have to work so hard to get the last-minute organising & packing done (I really have to re-define what’s “last-minute”) that I was in a mini-panic by the time we left. I even managed to lock my purse in the house, but of course, C had his keys & let me back in. It took me a while to calm down, but the rhythm of driving a well-known route took over, & I was pleasantly distracted by B’s exploration of his travel-bag once we hit the “open road”. I always pack some treats for the trip & he really looks forward to them. This time I put in a supplemental pack of pokemon cards, some japanese candy & snacks (including one with a japanese pokemon card enclosed), & a Calvin & Hobbes anthology :) C & I got the giggles when B requested I translate the kana on the pokemon card while driving on rte. 90 toward Buffalo... mom can do anything!

We checked into the state park around 3:00 pm & had the car unpacked & beds made by 3:30. C was worried about the local grocery stores closing times, so we stopped unpacking the kitchen & went over to his parents’ yacht club, where they stay in a trailer (as all the club members do) when they come to race their sailboat (they have been members for more than 30 years).

They were glad to see us & we decided to go to the larger (& slightly farther away) of the local stores, since they would be more likely to have everything we needed. Shopping with 5 people is a serious cat-hearding experience, & that doesn’t even include trying to keep B away from the meat aisles. Luckily, the store was small enough that you couldn’t lose anyone for very long :) We found what was on the list I’d made before we left home (even the veggie refried beans, after some searching), then dropped my in-laws back at the club & returned to the cabin to put it all away. They had offered to make the first evening’s dinner, so they arrived with a lentil stew & rice cakes to serve it over (a new experience for us) & newly-veggie B even tried some of the stew, to our great delight. During dinner they discussed the next day’s racing, & granddad said that B was welcome to crew with him (along with dad) if he wanted to , since he hadn’t found a “middle” crew (unlike our smaller Snipe class boat, Lightnings require a 2 crew plus skipper to sail them well). B jumped at the chance to crew in his first race. The weather wasn’t looking promising, with rain forecast, but at this club (generally), if there’s wind, they sail... I felt a bit apprehensive, but I knew C would keep B together no matter what happened.

Saturday was a weird mix of rain, clouds, & slight blue sky peeping out occasionally. The rain had begun after midnight, but was intermittent, so it appeared that the day’s racing was on. The corn roast would be the dinner-time event, after the race was finished. While the guys raced in the afternoon, my mother-in-law had plans for the 2 of us to go exploring, to look for a new place to eat she’d heard of in the little town nearby. We planned to stop at the smaller grocery store, too, since I’d forgotten to get water, which we needed because of the sulfur in the local water supply. Granddad had brought a couple of model boat kits to work on with B (he checked this out with us beforehand & we thought B was ready for the challenge), so they spent the morning getting one of them started. My father-in-law has been building boats since he was in his teens, went to MIT in the 50’s to get his degree in Naval Architecture, & spent most of his life managing a shipyard in Pittsburgh. Retired for some years, he loves to build half-models & full ship models. C has a gorgeous model of a Snipe that his dad built & gave to him for his birthday. B & granddad have tried woodworking projects before, but they ended in frustration for all parties involved. This time, when we asked B if he’d like to build a model with granddad & he said yes, so we gave the go-ahead. Both the models C’s dad brought were seaworthy ones. He primed all of the pieces before he came, so they would be ready to go in the water as soon as they were made. B asked about them when we arrived, & was clearly wanting to do it. His granddad got him started by having him read the instructions & make sure all the pieces were there. They talked about what kind of “rig” the boat was (how the sails are configured), & before I knew it whey were happily glueing & hammering. I kind of giggled to hear my father-in-law saying “hit the nail, not my fingers” because I was saying essentially the same thing when B & I were putting the hammer-on snaps on his body pillow. B does love to hammer...

After lunch the guys got ready to sail. They went down to get the boat ready & we followed them down to get pictures (my baby’s first race!!) & chat with people. Granddad was clearly very happy to have both his son & grandson on the boat with him, even though conditions were not optimum, sailing-wise. The sky was full of fast-moving, puffy grey clouds & it would spit rain occasionally. Foul-weather gear was stowed in the boat & B’s life-jacket securely on him. He was quietly psyched to be going out. There were a lot of unfamiliar people around & B was polite, but subdued, but also quite comfortable, from what I could see. He needed alot of help getting on board the boat once it was launched, but that was partly due to having to avoid the goose poop on the dock while having to get his feet in the right places to get on board. Then they were off...

My mother-in-law & I went off exploring, but it wasn’t long before we were overtaken by rain. We found everything we wanted, rather damply, & headed back to the club to see if the race had been called. On the way back the thunder & lightning began in earnest & I nearly had to pull over, it was raining so hard. I was pretty concerned about what was going on with my husband & kid out in a boat, but also trusted the good sense of my father-in-law & husband when it came to weather. Just walking from the car to the trailer soaked us to the skin, where the rainjackets didn’t cover, but my mother-in-law insisted that we had to walk down to the club to see what was happening... It was surreal. The graveled paths (just big enough to let one car pass) past the trailers were now rivers, running very fast. My rainjacket was soaked through & I could hardly see in front of me. When we finally got to the clubhouse, the whole world seemed to be on the front porch. We found our sailors, as soaked as we were. As it turned out, the race was never officially called because the rain & storm came up too quickly. My father-in-law heard thunder & started back before anyone else, but he is well-known for his weather sense & other boats started following him in. The rain hit, which killed the wind, so C started paddling toward the club. When it started pouring, his father turned the tiller over to B & joined in the paddling. B navigated them into the dock, quite unperturbed by all the fuss. When I think about it, he probably had the best eyes for the job, since he doesn’t wear glasses, & dad has taught him very well how to steer for a point on land. We decided to head straight for the car & get back to the cabin. The rain had stopped by the time we got back to the trailer, but we still had to put our wet butts on the car seats & drive back. B headed straight for a hot shower, which he thoroughly enjoyed (hooray! we’ve been trying to get him to shower for ages...) & C followed him in. I managed to towel myself off & change to dry clothes, but where to hang all the dripping clothing? (even after 3 days we still had clothing festooned about the cabin, drying).

We headed back to the club & the corn roast when we were dry. C’s parents’ Lightning fleet was sponsoring the corn roast & their contribution every year is to take the money as people arrive & then stamp everyone’s hands. So they were busy for most of the time we were there. The weather was still rather iffy, with rain spitting occasionally, so there was quite a crowd on the covered portion of the porch of the clubhouse. C connected with people he’s known since he was a kid & introduced me to anyone I didn’t know (I’ve been coming here with him for about 20 years). B was diverted by the soft drinks for a short time, but the crowd of strangers was making him nervous. Luckily, the corn was brought up before B decided he had to leave. There were hot dogs as well, but neither B nor I eat meat, so dinner was basically corn... C’s parents never did finish taking in the money before we needed to leave. B held on as long as he could, but by the time we left he was screaming with frustration. My mother-in-law tried to protest our leaving before they could “see” us, but we were out of there. We got B back to the cabin & into bed without mishap, thankfully. it had been a very full & exhausting day!

To be continued...

Thursday, August 17, 2006

Off to the wilds...

...of western Pennsylvania tomorrow. Strangely enough, I am not frantic. I am tired, because we worked really hard today, baking & packing & organising. But I feel pretty good about it, which is pretty unusual for me. I do not travel well. As much as I enjoy seeing other places & sharing them with my family, I hate being uprooted from the familiar. Maybe I'm not terribly worried about the final push to get on the road tomorrow because we've been to this cabin in the state park (or one just like it) 3 times before. I know what to expect, down to how many bunks are in each room. Or maybe it's because we're not in any particular rush to get on the road since it's just 4 hours-ish away & we can't check-in until 3:00 pm. B seems to be sharing my calmness about this trip. Like me, he prefers familiarity, & this cabin in the park stuff is old hat for him. He picked out the dvds, stuffies, legos, & games to take with him. The pokemon card decks & paraphenalia are ready to go. We found his travel book, with the fun games & songs. We have an adaptor for the laptop so, if all fails, he can watch "Jirachi Wishmaker", his newest pokemon movie, in the car. I haven't seen all of it yet, so I'm looking forward to watching it with B while we're away. There's also 2 Harry Potter movies packed (playing the Sorcerer's Stone computer game has gotten him back into HP- even the HP legos have been unearthed), plus more pokemon dvds. I have packed the next 3 books in the "Young Jedi Knights" book series he's reading & the next book in the series I'm reading to him at night, to fall asleep to. He convinced dad that he really wants to take the body pillow with him on vacation, although dad can't quite figure out how B & the pillow will fit on the bunk... :) The main thing is to have plenty of distracting/comforting things with us so that if B gets uncomfortable or overwhelmed, we can redirect him. He's looking forward to a corn roast over the weekend at his grandparents' yacht club (visiting them is the reason for the trip, & the reason we have the cabin in the state park thing down to a science), & to having s'mores when we have a campfire some evening. We will also go sailing as much as possible, & B has decided to ask grandad to fly the spinnaker when we sail on the Lightning, since B has never experienced this (our Snipe is too small to have a spinnaker). Perhaps the reason I'm so calm right now is that I know we have as many bases covered as possible & that B is looking forward to this trip. So, it's no big... :)

Today while grocery shopping, B made a couple of revelations that startled & delighted me. At one point he kind of hesitated as he was walking along & I asked if he was ok (I thought he had stubbed his toe or something). He informed me that he was ticcing, & that he had figured out a new sort of tic because the old one was no longer working to reduce the OCD stress. The old tic was a shoulder jerk followed by a loud exploding noise. The new tic is a quiet grimace, so rigid that he practically shakes, but not really very noticeable. I was blown away by: the matter-of-factness of his bringing it up, the fact that he had realised that the old tic was making things worse (he said the OCD made him do 8 more, once he had done one of them), that he had figured out a new & usable tic (stress-reducer) on his own, & that he found a tic that was practically unnoticeable (since he has been worried about calling attention to himself). Talk about presuming competence... (...& it will be there)! I recovered my breath & told him that I was very impressed by his taking charge of the situation & of the OCD. Inside I was jumping up & down in delight (but didn't want to embarass him by making too much of it). A bit later, as I was picking out some mixed hard candies for the car trip, B enthusiastically recommended the ones wrapped in wrappers printed to look like fruit. He told me that he loves the soft insides & that he thought I should try them. I was surprised that he even knew about them, since he's only been able to safely eat hard candies for the past 3 or 4 years & so doesn't have much experience with them (he prefers gum). Before then, his oral-motor differences caused him to automatically swallow hard candies, which could be very scary for all of us... I asked him where he had had the fruit candies & he said that he & his psychologist share them at their appointments sometimes. I knew that Dr. M has been using candies to help B learn about making decisions & sharing in social situations- sometimes B even brought me a butterscotch from his meetings with Dr. M. It was fun to hear B wax enthusiastic about these candies & want me to try them, & fun to learn something about my own kid that I had not previously known.

During the day today B & I baked shortbread & chocolate chip cookies for vacation (I posted the recipe today over in Jedi Workshop). B was a great help, doing most of the mixing while I threw ingredients into the bowls of dough. We listened to his new fave cd "Weird Al Yankovich's Greatest Hits" while cooking. Weird Al was, of course, the logical next step from Dr. Demento, even though B has never heard the original songs that he's parodying. C & I just crack up, especially when we hear "Like a Surgeon" & "Living with a Hernia" (gotta love that medical humour). Oddly enough, B's absolute fave is "Fat" which is a parody of Michael Jackson's "Bad". We've had the cd for 2 days now & B has most of the song memorised. At first thought, it's an odd choice for a kid who's self-conscious about his weight, but C & I have decided that maybe this song, by poking fun at being fat (with a tinge of pride about it) diffuses B's worries somewhat. To be honest, B's been off music for a while, so I'm just enjoying hearing him singing around the house again :) This evening I brought up B's new tic strategy at the dinner table, so C would be aware of the change. B showed us what the tic looks like & C commented that the look on B's face made him think of someone with constipation (!), which B just loved... hooray for bathroom humour :)

Well, the last load of laundry is dry, so I should bring it up & go to bed. We're nearly as ready as we can be. Off to the woods! We'll be back on Thursday the 24th, so bye till then :)

Wednesday, August 16, 2006

Encouraging words...

Today was another busy, get-ready-to-go-on-holiday day. C very kindly & wisely scheduled the whole day off, instead of working 1/2 the day as usual, which made things so much easier. I had to do some major shopping (school & vacation prep) & it was nice for both B & me that he could stay home with dad :) While shopping I reflected on our dinner last evening with good friend Paula & her son, Ck (to distinguish him from dad C), who is headed for college next week. In yesterday's entry I mentioned B's difficulty making a going-away card for Ck, who like B has Aspergers, & is B's mentor, buddy, & main kid-sitter. B managed to compose a chatty card, including his address so that Ck can write to him, but felt it wasn't enough. I suggested that maybe B should put together a unique lego minifigure just for Ck that he can take to school for him, to remind him that B is thinking of him. B jumped at the idea & carefully constructed the figure, blond like B, with a backpack (plus an antenna) & carrying a letter from one of the Harry Potter sets, to remind Ck to write. Ck seemed very pleased with the card & minifigure & he brought B a going-away gift of some Pokemon cards :) Paula & I chatted a bit before we went out to dinner, & she mentioned that they had cancelled a camping trip planned for the week before, which surprised me. She said that the closer the time came to get ready for the trip, the more agitated Ck had become, until he finally broke down & told her that he didn't want to go. They had been travelling quite a bit that summer, including a trip cross-country to his new school to get him registered, & when they weren't travelling Paula was busy getting ready for taking on a new position at school (she's on the faculty at B's school). Ck was worried about the fact that she'd put a deposit on the camp site & would lose it if they didn't go, but he just didn't want to zoom around any more this summer. Her response was "it's only money..." & assured him that his sanity was more important than the deposit. They stayed home & had a nice, relaxing time. Paula's words made me think of the mental games I've played with myself in the past over money issues. I have felt at times that my twice-monthly appointments with my therapist were too expensive for our budget, particularly with B's need for adaptive devices, therapies that are not covered by insurance, or the large co-pays for some of his specialists. I've had myself convinced at times that I was too expensive for my family to afford... That seems pretty silly, though, when I think of how important my mental health is to the functioning of my family. Paula's "it's only money" seems a very nice phrase to remember when I get squirrelly about taking care of my own needs.

It was natural to be thinking about therapy today, since I had a regular appointment with my therapist (aka "my high-maintenance girlfriend") this afternoon, which was right after C & I had an appointment with B's psychologist. We meet with B's psychologist, Dr. M, about once every 2 months (B sees him monthly) to check in on B's progress & to get advice about specific issues that come up in daily life with B. I had taken B to see him just this past Monday, & had briefly mentioned the newest meltdown behaviours to him before their session. Dr. M said that, unlike most of their meetings where B is pretty active & they kind of chat around all of the activities B likes to do in his office, B had sat in a chair & just talked with him for most of Monday's meeting. They discussed school & OCD & Aspergers & Tourettes & black holes & how Stephen Hawking manages to speak through a computer interface, among other things. Dr. M had been very impressed by B's focus on their conversation & also by his willingness to talk about his "conditions" (B's word for the AS, OCD, & Tourettes). He said that he feels B is developing a positive identity as a person with autism, & that B clearly feels that the autism is part of him & that he has no interest in getting rid of it. Dr. M was very pleased by this & said that it's pretty uncommon, in his experience, because so many families are ashamed of their child's diagnosis(ses). He believes that a positive self-image is key to B's learning the skills that will allow him to weather the difficult adolescent years. C & I were very encouraged by these words. We have seen evidence of B's comfort with himself all summer- sharing his Tourettes diagnosis with his summer camp couselors so they'd understand his tics, doing the same with the kids next door when they asked him about his tics & then explaining the AS for good measure- but it just plain felt good to hear confirmation from a professional :) We also discussed that B really is beginning to move into pre-adolescence, which is all about developing a separate identity from us & figuring out who he is & will be. We talked about how difficult this stage can be when he needs us so much to help him self-regulate when challenged by the OCD, or frustration, or sensory overload. The discussion of this separation carried-over into my session with my own therapist. I recalled my difficulty coping with B's inexplicable behaviour when the OCD first hit & how overwhelmed I was for so long. I realised that I have developed a sense of compassion for B over these past 2 1/2 years, not pity or sympathy based on fear for my child, but compassion for a person going through a difficult experience. It's an amazing difference, this feeling. I still do feel fear sometimes, fear that B will hurt himself, fear that he'll have to be hospitalised because he's hurting himself... but as we weather each meltdown & OCD freak-out I get a better feel for watching & waiting for B's cues as to what he needs. He gets better at telling us what he needs, too. I feel less like I have to control what's happening & more trust that he'll come out of it ok with just my attention & compassion. My therapist & I also talked about the ultimate result of B's growing-up into a separate person, & I realised that the goal is for him to become an adult member of the family. It doesn't mean he's leaving me by growing up, just that our relationship will change as he needs me less for self-regulation. It also means that I don't have to have an image of the adult B in my mind in order for him to become an adult. He has already taught me that he'll become the person he will become, not the person I envision. He will get as far as he will get, & we will still be family. These were very comforting thoughts.

I guess this is a good place to be, emotionally, a couple days before taking off on vacation :) Changing location is always stressful for B, & therefore for us, but it's good for us to go anyway. We are going to a place we've been 3 times before, which makes it alot easier for B to make the transition. Tomorrow we will grocery shop, bake, & pack. Friday morning we will go!

PS: I am proudly flying a new banner, having just been added to the Autism Hub! Many thanks to Kevin for accepting my blog into the Hub. I am looking forward to being part of this group :)

Tuesday, August 15, 2006

Getting our act together...

...and getting it on the road. Or at least, preparing to. This Friday we leave for 6 days in the wilds of Pennsylvania (literally "Penn's Woods"). C's parents have belonged to a yacht club in western Pennsylvania since the 60's & C grew up there. So every other summer we reserve a cabin in the nearby state park & spend the week sailing & visiting. The cabins are really comfortable, with a kitchen, full bath, 2 bedrooms, & a living room/dining area. We have to bring everything, though, from bedding to pots & pans (not to mention food...), & diversions. This week is, therefore, dedicated to cooking, baking, sorting, organising, & packing. My mind has been very full of what B will need to "survive" our time away from home. Will he want the ball blanket or the body pillow, or both? Which books to bring? Will the HP game (see below) "fit" on my laptop's hard drive? (it did) What will we do for meals, which we eat with B's grandparents, since he's now a confirmed veggie (& they are not)? On top of all this, because it's the week before we go away, the week is also full of appointments, adding some stress to the whole thing. While going through my camping kitchen, I discovered that the non-stick finish is coming off the pots & pans (I had a vague memory of the finish flaking off into the food 2 years ago, so I'm glad I checked), so I think B & I will be heading out tomorrow to get a new one, & maybe do his school supplies shopping as well, since that's not far behind.

Over the weekend B & I finished the blanket we were weaving. It turned out really nicely- so soft & warm. Initially B had been having trouble mastering the rhythm of weaving on the big loom, switching treadles & not mixing up which hand to throw the shuttle with, which frustrated him. I lured him back to the loom with the promise of reading Artemis Fowl to him while he wove & that did the trick :) After a while he got the hang of it, as I knew he would, & now that we've finished he's ready to weave another blanket with me. I am very pleased! He needs all the practise he can get with overcoming his initial frustration with new skills.

One constant "learning experience" for B has been the Harry Potter computer game. I got it when he was little (it's the first one, that came out the same time as the first movie) & he discovered it some months ago. It's very difficult & I am simply too faint-hearted to enjoy it much, so I didn't get very far with it. B's first attempts were so frustrating that we had to make him take a break from it (we said he could try again when he was 10). He has matured enough to successfully complete various parts of the game, but he keeps running into the frustration of the tasks getting harder & harder as the game unfolds. So his elation as completing one part of the game is almost immediately followed by fury at failing at the next. Because he is so keen to play anyway, C & I have decided that forbidding him to play is not the answer. He needs to learn to cope with frustration. So we have found various strategies for helping him play. First, we limit the amount of time he can play. Then, we sit with him when things get hairy, encouraging him to slow down, observe the surroundings, look for cues & clues that he may have missed. Starting a new game & playing the currently difficult parts repeatedly also helps. Occasionally he's had such difficulty that he's completely melted-down. He practically goes into a fetal position of rage, shaking & face contorted, & doesn't want anyone to touch him & doesn't even want to hold Rufus, usually clamped under his right armpit. At these times, we've tried to talk him down, help him figure out what would help him to feel better, try to keep him present (rather than lost in his fury & distress). I usually find myself holding Rufus (since B doesn't want to), cradling him as though he were a baby. It's comforting. When we follow B's lead, & give him time, he eventually recovers, usually ending-up in tears. We take some time to recover & then talk/brainstorm with him about ways to avoid his getting to meltdown point. There have been only 2 meltdowns so far, & they have made it hard to allow him to keep going with the game, but I think that he's learning from the whole experience, so we let him continue... Over the past few days he's progressed quite a bit & I think he's beginning to get more enjoyment than frustration from it. Life-lessons from computer games- go fig.

A nice thing about all the busyness of getting ready for the trip is that B can really help. We made pizza dough this morning, to freeze & take with us, & B measured the flour for it. He then measured & mixed the ingredients for vanilla ice cream so we could use-up the cream we had on hand before going away. We wrote a note to the friends who visited last week, too. Now he's trying to compose a good-bye card for his favourite sitter, C, who's off to college next week. It's going slowly, but I think it's because he's really realised that his buddy will be gone for a while. I've encouraged him to include his address so that they can write to each other. And onward we go...!

Thursday, August 10, 2006

Still reading...

I'm still getting used to the change in our lives since B found he can immerse himself in a book to overcome the OCD thoughts (most of the time). He has been working steadily through the "Young Jedi Knights" series, occasionally updating me as he goes along, which is great because I read these books when he was a baby & have forgotten a lot of the story. Because of the reading, B hasn't had a melt-down since Monday & I feel almost a vacuum from the lack of these intense incidents that usually pepper our days. When he's not reading B has been preferring to work on his legos & the stories he dreams up to go with them. He hasn't played on the computer for a couple of days & the only tv he's watching is in the morning before I get up. It's all very different, but it feels good & healthy for him.

B's aversion to meat is becoming more a part of daily life as well. He's been choosing good protein alternatives (a concern because he's sensitive to certain textures, tastes, & smells & rejects a lot of what he's offered). He's been taking a multivitamin with iron for a few years now, so living on beans, dairy (with lactaid tablets), & tofu should be ok (he eats fresh fruit every day & likes veggies like edamame soybeans, peas, carrots, & will eat a salad without cucumber :). B told me today while grocery shopping that the thing that sets off meltdowns at the store is going by the meat section, so we came up with a compromise. We had gotten some corn & they had a station where you could shuck the corn bfore taking it home. So I left him shucking corn while I quickly got the items that were near the meat section (cheese & bagels). It worked like a charm & he hardly ticced at all until we were almost done & checked out. Another victory! It was lovely not to be scrambling for diversions while trying to get everything on the list :)

Yesterday we had a visit from dear friends who live in Buffalo. Ros, a folk singer & composer, composed a song for us & sang it for our wedding nearly 18 years ago & her husband Tom is a brilliant former geologist who can converse on just about any topic. They are like an extra set of grandparents for B & behave accordingly, always remembering his birthday & bringing a little present when they come to visit, or have something for him when we vist them. I have known Ros for 24 years. We met when she came up to the summer camp I worked at in the early 80's to do one of the weekly programmes for the campers. A shared love of music was what started our friendship, & we always do something musical when we get together, like have a jam session with rhythm instruments or hear a newly composed song. We also love to share our local ethnic restaurants with each other, so yesterday we went for Thai. B loved the fried tofu with his rice & the mango juice. He & I folded origami balloons while we waited for the food, as we all chatted. C had decided that Tom would be a good person for B to challenge to a game of go & it turned out that he had played go many years ago but was rusty on the rules, so he & C ended up challenging B to 2 games, the first of which they won, but then B came back to win the second (!). Ros & I just caught up on things. After lunch we took home-made ice cream down to the bay & ate it with a lovely breeze coming off the water. It was so civilised. B had a nice time visiting, too, between playing go & telling Ros about school.

Today B gets to spend the afternoon with his best buddy, E. So, off to lunch & a fun afternoon!

Tuesday, August 08, 2006

We are tired...

B & I are both rather tired these days. Tired of our routine, too... at least, our precisely scheduled days seem to be getting looser & looser. The flexibility has been partly necessary & partly due to my being tired, I think. B has been having a LOT of trouble with thoughts the past few days. The pattern has changed & the thoughts are bothering him more during the day than at bedtime. Bedtimes have been relatively peaceful, although B decided he's tired of the Arthur Ransome books, so I decided to start reading Anne McCaffrey's "Dragonsinger" to him last night. I have loved this book for nearly 30 years & I think it'll be great for him now. The past couple of days, though, we've had to deal with thought-related meltdowns during the day when C is not around to help, which has been very stressful. The thoughts continue to be about Rufus getting hurt or eaten & nothing I say seems to do any good, so I try to make sure B is safe (someplace cushioned) & we just ride them out together. Yesterday I felt the need to explain to B that there is the potential of me or dad getting hurt when he melts down (he flails around a lot in his distress, & bangs his head to rid himself of the thoughts). I knew it would upset him, but I know he'd be even more upset if it happened unexpectedly. I also know that B can pull shreds of control together when he has to, & I'm hoping that maybe he call on these reserves to help control himself if he was really hurting himself or us. I feel that letting him know about these possibilites is a way of respecting him, & I told him so. He was initially upset when I mentioned it, but he also acknowledged that he felt it was respectful of me to clue him in. I tried to soften the news by telling him about when he was little & how we'd just pick him up & hold him until he was calm. We talked about how big his body is getting (he can fit in my shoes, for heaven's sake!) & how we can't do things the way we did when he was 2, & this seemed to help (he liked hearing about when he was little). So, now he knows...

One thing that I was hoping to happen over the summer has- B is using books to distract himself from the OCD thoughts. Mostly, it just took finding the right books. I suggested he might like a series I bought & read when he was a baby, about the Star Wars post-empire "Young Jedi Knights", by Kevin Anderson & Rebecca Moesta, & they've really kept his attention. So, as the thoughts have become more intrusive over the past few days, B has been reading more & more without being prompted. Occasionally a thought will break through his concentration & he'll need to tell me about it or do things (he's been popping little plastic, air-filled bags that came as packing material) to make the thoughts settle down. Playing too long on the computer tends to make melt-downs worse (or precipitate them) so I have been liniting the computer time & the books have helped give him an alternative activity.

Coping with B's meltdowns have been what's making me tired, I think. I just feel wrung-out afterward. On top of it, I've been trying to cope with replacing a broken computer printer & getting ready to leave town next week for a week in a cabin in Pennsylvania. Today B & I went to 2 computer stores (plus 2 more stores looking for a Pokemon dvd, & to JoAnn's to get some yarn so I can knit christmas gifts while we're on holiday) to find the printer recommended by Consumer Reports. We found it, brought it home, I unpacked it & attached it to the computer, looked online for the drivers for that model that work with a mac... &, one email to epson later, discovered that this model is not & will never be compatible with a mac :( After lunch we returned it. In the process of hunting for the drivers I found that another model (that I almost got at store # 1, but it was out of stock) does have mac-compatible drivers that I can download. So I will do that at some point, then go back to store # 1 when the model comes in & buy that printer. B actually did very well while we were out & handled the disappointment of not finding his pokemon dvd very well. I have ordered it from Amazon & it should be here before we go away.

We did do one thing (other than look for a printer) that was on our schedule, & that's make gourmet chocolate ice cream :) My friend Roo gave me the Ben & Jerry's ice cream book a while back, but I was daunted by their use of uncooked eggs in their recipes. B & I decided to try to make frozen custard yesterday (the next level of ice cream making :) which required cooking the milk, eggs, & sugar (without curdling the eggs). It turned out pretty well, so B & I thought we'd try the recipe for Jerry's chocolate ice cream, modified by adding the egg/sugar mixture to the double-boiler with the melted baking chocolate & milk/cream combo & cooking it a bit, rather than doing it the other way around. It was messy, but worked well & we both decided, after licking the paddle & bowl from the freezer, that we liked the results (B was really impressed by how yummy it turned out :).

Tomorrow we have dear friends visiting from Buffalo for the day (C has the entire day off- yay!), which will be a nice break from our routine with the bonus of going out for lunch. We have asked b to think of someplace he's like to go & we may just end-up going for thai, which he likes :) Thursday B gets to play with his best buddy in the afternoon & I'll go along to visit with his parents, so we'll both feel like we got some play-time :)