Life & creativity...

...I just had to share another flower picture from our beautiful Spring :)

It's amazing how a week's break can really break things up. Old patterns & habits can die pretty quickly (in our house, at least). There are just about 6 more weeks of school & B seems to be entering endurance mode- although he's tolerating it much better than the past couple of years. There's something about this transitioning to the summer that makes life seem impossible to him & the past 2 Mays B has managed to try to "zap" himself in a fit of distress at school. "Zap" meaning trying to electrocute himself by putting something in a wall socket. It feels rather odd to just be typing this as though it's business as usual (I'm really hoping this year he breaks this trend... ), since it's a pretty horrible experience, coping with a kid who doesn't want to exist. The first year, after getting the call from school (from a very traumatised teacher), & ascertaining that he wasn't hurt, I got him in to see his psychologist so fast it made everyone's heads spin... It was a good thing to do- Dr. M was able to explain to us that these sorts of "suicide" attempts in young kids (B was 8 the first time) do not represent the same thing as in an older kid or adult. In essence, B was in a moment of distress & was trying to escape it. He had no deeper thoughts than that. He did not really want to leave us or life- it was an impulse thing. He did a lot of impulsive things that first Spring with the OCD, like cut the cords to all of the computer mice in the media centre. We still don't understand why, except that there was a pair of scissors lying nearby... In any case, my main concern, after visiting Dr. M with B, was how to keep this kid planted in this life until he developed to the point that he could resist such impulses, or at least think about the implications. We all succeeded pretty well, thanks to behavioural & medicinal interventions, until the following Spring, last year, when B stuck a paper clip into a socket in the aftermath of another impulsive act (touching a drying clay figure made by another child, & in the process, wrecking it :( ). This time all he managed to do was knock out the computer network- he escaped injury again, although poor Cherie kept checking his hand to make sure he really wasn't burned... I was better able to handle the situation this time, & could comfort Cherie & explain what Dr. M had explained to us. I was also prepared to make a deal with B to prevent it happening again (for that year). At the time, I thought I must be crazy (you'll see why) to make this deal with him... but I needed to find the proper incentive to keep B safe. One of my hobbies is amateur electronics, & I had just finished teaching a mini-class at school about electricity. He had been very envious of my electronics toolkit & made it clear that he wanted one, too... but I told him I wanted to be sure he was old enough to use something like that safely. So, my deal with him was that if he could prove he was old enough to tell us when he was upset, rather than doing something impulsive, then I would give him his own electronics kit. And he did... he was sooo good for the rest of the year, so I followed through & gave him his own kit. We started the summer by making little projects, "poofing" LED's (giggle), & my showing him how to strip wires (& discovering that his wire-stripper is much better than mine... how did I manage that?). He's had an enormous amount of safe fun with it ever since, & I finally got ovet the feeling that I must be nuts to give a kid with a propensity for "zapping" himself an electronics kit... (shakes head). This year, I am not quite as worried about the "zapping" thing, actually. B entered a new developmental stage over the winter, & one of the new behaviours resulting is a new concern about death & mortality. I think this is what we've been waiting for... & although it does feed-into the OCD a bit, it also makes me feel more secure that B will get through this end-of-schoolyear without trying to hurt himself. Thank goodness!!

One of the break-week activities I was involved in was teaching a shawl-knitting workshop for our local knitting guild. I had been quite involved with the guild when B was little (read "pre-diagnosis") but had had to pull out when B stared school & was needing a lot more support. It was nice to get back into teaching- & the bonus was that I started my first shawl in over a year the afternoon after teaching the workshop. I have been knitting less & less since last Fall & thought it must be because of the energy I put into helping B keep it together- & discovered that it's more likely due to the arthritis flare-up I've been having since mid-Winter... I did a lot of knitting to prepare for the workshop &, wow, does it make my hands sore! I am presevering, though, & am working on the inflammation from a bunch of different directions- herbal, diet, exercises- recommended by my new chiropracter. (I mentioned in an earlier entry, I think, that I can't take any of the anti-inflammatory medicines currently on the market.) This realisation also put me in a different head-place when looking at the energy I spend on/with B & the energy I need for my creative activities. Knitting this new shawl, no matter how much it makes my hands ache, is feeding my need to be creative, to make things... which is making me feel very good on a deep level. Involving B in some of these creative activities can also be deeply satisfying, so I proposed to teach him how to use the "big" loom, now that his legs are long enough to reach thte treadles, & we can weave his end-of-year gifts for his teachers. He was excited- he loves my things that are machines & he's been dying to learn to use the big floor loom since I got it- 4 years or so, ago. Perhaps this will turn out to be a good transitioning tool for B, a positive focus on the school year ending. It will certainly get me weaving again! (now how's that for an ulterior motive :) :)

Being the "enemy"...

We are having an unusually specatacular Spring this year, probably due to the mild winter we had in the Northeast. We don't usually get such a show, so I thought I'd share some sakura from a nearby park :)

Today is transition-back-to-school day. The break was so much fun that, for the first time since B started school, I'm especially looking forward to summer vacation. We started brainstorming ideas for summer projects over breakfast this morning- we decided to collaborate on a manga series featuring Rufus, that bounces off some of Diane Duane's ideas (specifically her Transcendant Pig & a dog character that can visit & create alternate universes). We are thinking it would be fun to have Rufus visit some of the other characters B has created, bionicle & Pokeman, & chronicle his adventures manga-style. Stay tuned.... :)

Of course, the transition back to regular routine couldn't be smooth... last evening, while I was watching Globetrekker & the guys were having a Pokeman game, C wandered into the tv room with the news that he thought B's fish was dead... urf! B & I had each gotten Bettas 3 summers ago (B bought his with his own money). I had wanted one since childhood &, admiring them in the pet store while buying bunny food, broke down & bought one, plus accoutrements. B's arrived a week later, after some negotiation. It was originally thought that B would learn to clean his fish's bowl... but this dream evapourated after his fish jumped right out of the bowl the first time we cleaned it, requiring quick reflexes on my part (I can still hear B screaming...) as I scooped fishy up with my bare hand & plopped him back in the water. This action earned me major points for quite some time (I still can't believe I did it, since I'm pretty squeamish... the things we do for our kids...), but the volatility of his fish not only earned it the name "Frisco the Frisky Fish", but made it clear that B was never going to have the courage to deal with scooping it out of the water (with a net, of course) himself. He did feed fishy every day & was quite attached to it... Last night, when the local fish expert (me) took a look at it, I found it was indeed dead (why, oh why don't Betta's float?). C took the bowl downstairs while I comforted B & then read him to sleep, then I got the job of rescuing the body from the bottom of the bowl & putting it in a jewelry box so that it could be frozen for a later funeral...

This morning, before we could get to the job of processing fishy's demise, we faced another crisis... last night, in a pre-bedtime foggy state, I decided to use a very perfumy hand lotion that had been given to me, instead of my usual essential-oil-based lotion (I get almost all of our/my soaps & lotions & perfumes from Indigo Wild, since they use essential-oil based formulas & none of them, no matter how strongly scented, bother B). When I went into the tv room to get B this morning (he watches videos from 6:00 am to 7:00 usually) he reacted immediately, clutching Rufus to his nose & gagging. Sigh... I realised the problem immediately, mentally kicked myself, herded him into his room to get dressed, then scrubbed off the smell with our normal soap until I couldn't smell it anymore, although I'm sure there was some residue that B could pick up on... When we were both dressed, I went in to his room to open his curtains & he immediately started gagging. I explained to him that I had washed as much off as I could, but the damage was done...

The reaction to strong, flowery perfumes was one of B's first OCD manifestations, way back in 2nd grade, & seems to be tied-to an aide that began working in B's class right at the same time the OCD kicked-in. She was a lovely person, but her tall, dark, & very no-nonsense demeanor caused B to find her somewhat formidable. She tried to soften her image somewhat with him, being aware that he was intimidated by her. She remained with B's class through all of 3rd grade as well, and although B was able to to understand that I liked her as a friend, & he could say that she was a lovely, caring person, he never got over his OCD reaction to having her nearby. Her ability to cope with this was amazing- when it became clear that B was reacting to her perfume, she accomodated his need for no scent. She was always gentle & friendly to him. I always felt badly about his reaction to her, but she breezily said that she understood & never held it against B personally. To this day, though, whenever B smells strong perfumes, he begins ticcing, grunting, & gagging, goes into a fetal position & whimpers...

So, you can imagine how I felt when my kid was doing this to me this morning... After he dressed, B ran downstairs (no mention of fishy- this was the first morning B didn't feed him as part of the morning routine) & collapsed half-on & half-off the sofa, gagging. I let him be for a bit- calming myself & trying to decide exactly what was happening. I had washed my hands before even getting my clothes out, so there was no lingering scent on my clothes... B's reaction felt very much as though he'd superimposed the OCD reaction to someone else right on top of me. Something that B's psychologist keeps telling us floated into my mind at that point- desensitisation. Up until now, B has been helpless when confronted with smells & images that remind him of this aide- many of his school triggers are related to this person who has not been around for nearly a year, & it's been very frustrating. It's like he just can't get rid of his old baggage- & as a Survivor, I know baggage. So I've had empathy for his predicament, but I'm also aware that this reaction is holding him back, keeping him enslaved to thoughts & feelings he's been stuck in since he was 8 years old... So, although it didn't feel good to bear the brunt of his gagging, defensive reaction, it hit me that transferring this reaction to me might help B start to finally "get over it". I went into the living room, found him on the floor, & insisted that he at least get on the sofa where he was safe. He screamed when I touched him, & I reminded him who I was... that I hadn't changed. I apologised for using the perfumy stuff, told him it wouldn't happen again, & assured him that I had scrubbed it off. It really did not seem that he was smelling me or the scent any more, but he was locked in the OCD reaction to it. I reminded him again that I was his mom, not anyone else, & he screamed that he knew, asked if I was trying to kill him (this is a common stress reaction for B, & my sense is that he's reacting to a sense of being "killed" by the intensity of the thoughts/feelings). I observed that I probably couldn't "kill" him any more than I had by exposing him to the smell... & he began to calm down. I let him sit at the kitchen table for a little bit, then asked what he wanted for breakfast. He requested toast, & at some point he apologised for screaming at me. I told him that I understood, apologised again for using the smelly stuff, & gave him his breakfast. Within a few minutes we were discussing Pokeman & planning summer projects.

Although I apologised to him, & I certainly would not go out of my way to provoke this sort of incident again... I'm wondering if maybe this experience provided a chink of light into a very dark place for B. To have me superimposed on a very powerfully scary thought may just have taken some of the power out of it... we'll just have to wait & see.

Relaxing week (so far)...

I can't believe it's Thursday already. As noted in my previous entry, this break week has been full of plans, but it's managed to be a wonderfully relaxing week, too. I realised this on Tuesday when B & I were sitting in his psychiatrist's office for our monthly check- & weigh-in. Usually we go right after school & even though B has had a snack on the way, he's always in a low-energy-yet-wired state when we see her. On Tuesday, he was charming, funny, & mostly appropriate in his behaviour (within the standards I expect of a 10-year-old :). I found myself thinking, "how nice Dr. B can see him this way for a change." Usually I'm thinking, "oh, I'm glad he's doing that here, now she'll see what I'm talking about"... What a nice change! One of the bonuses of our visit was that, at the weigh-in, B appears to have lost 12 lbs!!! We're not sure if it's getting back into biking with dad or what, but we are very relieved... & have put-off discussion of changing B's meds for the moment.

Another sign that B's feeling relaxed this week is that he coped with not one, but two birthday parties Tuesday afternoon & evening (this after the doctor's appointment) without melting down. The first party was especially stressful, since it was a sports-oriented one with all of the neighbourhood boys, held next-door (our next-door neighbour's son is 4 days younger than B, but they held-off on his party until the break). We know that B was teased some by the other kids for his clumsiness because he told us afterward... we had prepared him for this possibility & let him know he could come home any time- but he didn't. He just ran around all afternoon & seemed to have the best time possible under the circumstances. The evening party was lower-key, for his best buddy E, with cake & prezzies & playing with E. B was amazingly self-possessed, considering the energy he'd expended all afternoon. He told a joke that had us all in hysterics (E in particular, it being typical 10-year-old humour...). When it was time to leave B held it together. It was like having a whole new kid...

Yesterday C & I visited B's psychologist as we do every month or 6 weeks, to put out heads together & discuss strategies for coping with B & helping him cope... B's consultant teacher Cherie sat for him & I was also glad for her to see him so relaxed. In the car on the way, I mentioned B's relaxed state this week to C & wondered at the contrast- he's been so much fun to be with & yet, just last week I was struggling to cope with him. We brought this to Dr. M, & our consensus was that the social stresses of school are what is most likely to have him so burnt-out by the end of the day. The forced socialisation of school, constant exposure to OCD triggers, & bombardment with unexpected situations demand a great deal from B. Although these are the hallmarks of "real life" & are what we hope B will someday be able to take in stride, it occurred to me to question our baseline assumptions, too. Reading the blogs of autistic adults has been illuminating- & I have particularly appreciated Zilari's contributions in the comments section of my blog. Being aware of what Zilari has said about how she best functions in the work place & in other social situations, I wondered out loud if we were not being unfair to B to expect him to learn to cope as well as a NT person might... this was the first time I'd ever said anything like this to any of B's doctors & it felt weird... but if I can't advocate for my kid, who can? Dr. M did not react negatively to what I was saying- he mentioned that we can have aspirations for B, but definitely keep in mind that his coping in social situations may always be different. I certainly do not want to expect less than the best from my kid... but I also do not want to be the source of unreasonable expectations either. To expect B to behave or "be" NT is disrespectful, in my opinion. To discover what he can do is appropriate... but seeing my kid free of the stress of school has been an eye-opener. I don't recall there being such a difference during the winter break, but there have been many changes, too- in meds dosages, in growth & development. Our discussion with Dr. M then turned to looking at ways to decrease the stress at school, particularly for developing strategies for B's transition to 5th grade. One of the things we talked about was helping B to learn to judge his emotional state better, so that he could catch himself while still in a moderately stressed state & give himself a time-out before things became uncontrollable. This is pretty sophisticated stuff- but Dr. M believes that B is nearly ready, developmentally, to do so & will revisit strategies for learning this with him in their sessions. As an adjunct issue, we talked about how "lost in space (& time)" B tends to be, which prevents him from feeling in control of his life. This is something I've noticed a lot as B's been getting bigger. Although he can tell time on a digital clock (he has no concept of analog time...), he doesn't ever look at a clock or watch to discover the time, he always asks someone. He also has very little sense of the sequence of time during the day, other that knowing that there will be mealtimes. He just kind of floats through life... sometimes this can be very nice, because he's not a clock-watcher like some kids we know, insisting on certain things happening at certain times. But I've begun feeling a bit guilty about how easily we can take advantage of this- I can say I'll be ready to do something in 10 minutes, & even if 30 minutes pass (inadvertantly) he never notices... We discussed strategies for helping B learn linear time- perhaps putting our summer schedule on a time-line, rather than the way I usually do it, with blocks of time on a weekly calendar. (I should mention here that during the summer break we do a weekly schedule, usually on Sunday, including the activities planned for that week. We have lists of projects brainstormed ahead of time, & make sure we put in a balance of "up" & "down" -time activities. We've been doing this, at Dr. M's suggestion, for about 3 summers & it works beautifully. Plus- we get an amazing amout of stuff done, from writing projects to science experiments, all summer long!) We talked about ways to carry-over these ideas at school, too. For the first time in along time I left one of our meetings with Dr. M energised, rather than just patched-up.

This morning B sailed-through his second-ever fasting blood test (he needs these every 6 months because the seroquel can predispose him to diabetes). We got to the lab early & were 5th in line, & the worst part was when the heavily-perfumed woman came into the waiting room before it was his turn to have his blood taken- the smell was overpowering to him & he breathed noisily through Rufus's belly, while contorting himself as far away from the lady as possible. I felt bad for him... but it did make going into the room to have the blood draw even more of a relief :) B was fully self-possessed & charming through it all. I gave him a bag breakfast on the way to grocery shopping, so we were home from all of our errands by 9:30. This afternoon Tomoko is coming over to watch "Howl's Moving Castle" with us in japanese, then then we'll cook yummy japanese food for dinner together (I am hoping to master tamagoyaki with Tomoko's help- mine always falls apart). B is hoping to use the onigiri mould by himself...

I'm glad I found the time to record these break-week observations- I will use them as reference when things heat-up again, & also as a hopeful reminder that living with B is not always difficult. It has been such a joy to be with him this week- it's made me look forward to the summer vacation as much as he does!!

...and now it's Spring Break...

It's hard to believe Easter weekend is over. We were mega-busy- C & I sing in our church choir, so we had a big rehearsal for the Easter service on Saturday afternoon, which seemed to be almost directly followed by the Sunday morning service. We had arranged for B's favourite sitter to come during the rehearsal, but things did not work out as we'd planned & we had to drag B with us at the last minute (and I do mean drag...). He was in the middle of making a new bionicle & I literally picked up the bins of parts he was working with & brought them with us, plus my laptop so he could play games if he wanted. Even so, he was really upset about the change in plans- not surprisingly, since transitions are not his strong point. I felt rotten, really, especially when I discovered that he was still distraught after the 2 hours of practise... he felt so let-down by the absence of his sitter & it's really hard to explain that it really wasn't anybody's fault, just reality intersecting with what we wanted to happen. Sigh. I was exhausted from all the singing & standing, but it wasn't hard to be patient with him, since I felt his distess so keenly. C & I took turns just being with him on the way home in the car & for the rest of the evening. We let him play computer games ad lib before dinner & he finally calmed down. My biggest worry was that he'd refuse to go to church the next morning, remembering how miserable he'd been the day before, but happily, he snapped into Sunday mode, made even sweeter by his Easter basket :) He had requested eggs for breakfast Easter Sunday morning, although he doesn't actually like eggs... but C complied, & B tried some, decided he still didn't like them, so C & I shared his, too. Such a funny boy... He read & drew during choir practise before the service & during the first part of the service, as usual. There was a scary moment when all the kids went up to Sunday school- B likes to take an alternate route to the Sunday school wing- up the stairs to the choir loft & through the loft to his classroom, & most Sundays that's ok (we don't usually sing from the loft these days), but on Easter there was a brass trio, 2 timpani, & assorted other impediments in the way of B's egress... I waited in my pew for the crashing sounds, but nothing happened. I checked later with the trumpeter & he said that B skipped right over them without a problem (except that they thought the rest of the kids would be on his heels :). Knowing that B was happy & safely in Sunday school made it much easier to concentrate on the demanding Easter music... & it all went very well, I'm glad to say.

After church B, C & I scooted home (along with our friend Cody, who is in his senior year at the music conservatory in town, C's fellow bass in the choir, one of my co-Sunday school teachers, & a great euphonium player, & who has been joining us for Easter dinner for the last few years) to eat lunch & prepare Easter dinner for 9. To me, a holiday just doesn't feel like a holiday unless we share it with friends, so C very sweetly tolerates my need to invite a bunch of people over... although he does try to keep me from inviting more than 10 people. We were very glad to have Cody's help, since it took a bit longer than we remembered to prepare spanakopita, plus stuffed articholes, & focaccia bread for 8 (adults). We had decided to have Belgian lambic beers, in different flavours, instead of wine this year & they were a big hit. Yum... Along with Cody, Kimberly our music director from church, was there, plus our friends Nancy & Donna (sisters), my mom, & our Japanese teacher Tomoko. It was a nifty group & we laughed a lot together (that seems to be my standard for a "good time had by all"). B was happy to lego or play computer games most of the time, so didn't interact too much with everybody, but he was really appropriate when he did interact- speaking to each person in a personal manner, commenting on things he's shared with each person- so I felt that he was comfortable. He decided that we should have a fireworks display at the end of the day & picked out some of the incendiary birthday presents given to him by Paula & her son, C. Although we didn't get to them until everybody but grammie had left, we still had a good time lighting some of the flower spinners & sparklers.

Today has been a recovery (& laundry) day, for me at least. Easter was a lot of work, but it was worth it. B & I went out for Japanese lunch then watched the second volume of the Fruits Basket dvds (in Japanese, with me reading most of the subtitles to B, since he wasn't reading them fast enough to understand what was happening :). C has an office meeting this evening so B & I will have a quiet dinner & gear up for a busier day tomorrow. B's got a doctor's appointment then a birthday party in the afternoon, & I'm hoping to use the party time to get ready for a knitting workshop I'm doing for the local knitting guild this Saturday. Wednesday is even busier, & then we get to spend the afternoon on Thursday with Tomoko, doing some more Japanese cooking & watching "Howl's Moving Castle" with her (in Japanese, of course). C is off on Friday, so we'll have some family fun & maybe even go out with friends in the evening... & that's our spring break week. Hopefully I'll have some time to blog before the weekend, but if not- you'll know what we're up to :) Ah- I forgot to mention that the forums I moderate in (New Clues to Harry Potter Book 6- see the links list) returned from a 4-month hiatus over the weekend, so I'm getting back in the swing of things over there again, too. If you happen to check them out, package #5 of the April Fools forums were dedicated to B, aka The Crookshanks, so check them out! :) (I'll tell that story soon, promise!)

Using the tools we've got...

Spring seems to have truly sprung here in the northeast- finally! The forsythia, crocus, & scylla are blooming & daffodils are on their way. B told me this morning that he's glad it's finally warm out because "... I can play outside & not have all those heavy clothes..." :) Seeing his delight to go outside is wonderful, since he has the couch-potato tendencies that can be a part of spectrum kids. His desire to go outside has a lot to do with recent birthday presents, which included two kinds of rockets (stomp & pump) & various small fireworks like poppers & snappers, that don't need to be lit (just supervised- which we do, believe me). He's also eager to ride his bike with dad when it's so nice. Thinking about all of these natural, kid activities, I can't help but reflect on how having a child with autism colours how I see these activities. I feel a deep gratitude to see him wanting to go out & play with the kids next door, or go across the street to share his rockets in the little park with other neighbourhood kids- these have not always been activities that B would seek out, & C & I often find outselves deconstructing these encounters, particularly the impromptu ones, to see what worked & why & how we can coach B so that they become even more satisfying for him.

Over the weekend B & I started reading another of his birthday gifts, the latest Bionicle book by Greg Farshtey (one of B's favourite authors after Diane Duane & JK Rowling). If you're not up to speed on bionicles, they're legos- but not made out of the little bricks that people imagine when they think "lego". They are sleek & high-tech looking, with lots of add-ons like masks &, of course, weapons... They also have a heavily-scripted back-story including history, mythology, & a code-like alphabet, plus a whole series of chapter books detailing their stories. B has been fascinated by bionicles ever since he was introduced to them in kindergarten- by some of the more aggressive of his classmates. It began as a love-hate sort of thing, since B was repelled by the violent play, but fascinated by the toys. When he asked for bionicles, we were faced with a quandary...

I understand that aggression & physical activity are an important part of who boys are & how they operate, but I have never felt that it's ok for this aggression to be directed at other people. This philosophy is something I've thought about a lot. Having spent most of my life engaged with kids & also having observed the ways parents I have known have dealt with this issue, what I have seen is what appears to be a disconnect between stated values & resulting behaviours. I have had friends who, otherwise sensible (in my opinion...) who would say the "boys will be boys" thing when their sons would pick up a stick, point it at someone, & say "bang!". Having a husband who registered as a CO (Consciencious Objector) when required to register for the draft 25 years ago, has only reinforced my/our resolution to raise our son with consistent values. Our focus with B has been to help him understand that it's not ok to hurt another person, even when it's pretend. This may seem extreme, but I firmly believe that our society will continue to mindlessly go to war until we have educated out children that it's not right to hurt anyone else, for any reason. So, yes, I'm trying to change the world in my small way, starting with my own kid. B seems to understand waht we're saying. We've talked to B about war, about the military, about soldiers as these topics have naturally come up, & explained why we disagree with fighting as a solution to any problem. We do not dress him in camoflage anything & the only weapon toys he has (outside of the teeny lego ones that are inevitable...) are from the Halloweens he was a Jedi (lightsabre) & when he was Matthias from Redwall (wooden sword), & he understands that they may be used pretend-wise, but not to hurt anyone. (As a side-note, I was amazed to watch B, when he got his lightsabre, doing the Jedi "moves" he'd seen in "Star Wars" with a grace & fluidity he'd never shown in any other physical activity. I wish to heck we could get him to agree to take martial arts lessons- but that's another topic, *sigh*.) He also has found ways to let out the natural kid-aggression that do not involve pretend killing. What he loves are explosions- crashing his lego creations together & making fabulous exploding noises appears to satisfy & support his need to let the aggression out.

When it came to 5-year-old B & bionicles, we were concerned that he would mimic the violent, injury/killing oriented play the other boys were doing at school but were also aware that B really wanted to have some... We had also just begun behavioural charting as a way for B to learn to monitor & modify his own behaviours, & were looking for motivating things to "earn". After talking about it with B, we decided to start with only the models that did not carry obvious weapons. Ironically, it turned out to be only the "bad" guys at the time who fell into this category. But B was really happy to be earning bionicles! Over time, as he became able to script his own play rather than following the sometimes violent storylines provided by the manufacturer, we decided that B could earn any of them. When B started reading, the bionicle books became another motivator, & to be honest, I was impressed by the stories Greg Farshtey was penning for the bionicles. They seemed a bit above the usual fare, with thoughtful & interesting stories that were not a chore to read & discuss with B. Last summer we took things to the next level when our main summer project was a photo-picture book featuring bionicle creatures that B created himself, called tunrats. We story-boarded the whole thing scene-by-scene, then made lists of the models he'd need to make. I took care of back-drops, using fabrics from my stash & pictures scanned from various books or downloaded from the net. I turned a box into a "stage" that could be configured different ways. B & I set up the scenes & photographed them, then B typed the story, which features action, humour, & friendship, under each picture on the computer. It took all summer, but we ended-up with a 25 page picture book that is one of the most enjoyable collaborative projects I've ever worked on. Both B & I were very pleased with it. We made copies for 2 of his other bionicle-obsessed friends & shared it with his class at the beginning of the school year, but since it's essentially copyrighted material (by the lego folks) we have kept it to personal use only. To me, this is the essence of what a kid can do when s/he breaks out of the culture- & media-driven mould & uses their own creativity.

The latest bionicles, called Piraka, seem to be the product of the inevitable escalation of action to violence, though. They are not so elegant as past models, where even bad guys have a polished, high-tech look. These guys (all guys, I might note, where usually the bionicles have one colour- blue- given to the female of the "species") are just plain ugly, with rictus-like grins, glow-in-the-dark teeth, & eyes that light-up red. I was glad to note that the spikes that stick out all over their bodies are rubbery, rather than rigid plastic, so they at least won't injure anyone... However, I was fine with B earning these, too, since he's so good at writing his own scripts for them, plus he got a couple for his birthday as well. Then came the books- B read the first of this series, featuring the Piraka, on his own. He was disturbed by some of the scenes & told us about them. These scenes were the first featuring gratuitous violence that I'd ever seen in a bionicle book, which was disturbing. Last Saturday B & I started reading the second book, but stopped when one of the characters was stunned & shamed into removing his mask (making himself vulnerable) for a villian. This level of psychological violence had not been apparent in the books before, either. B felt angry & betrayed that one of his favourite authors would write this sort of thing in a kids' book. We talked about our other favourite authors, Diane Duane & JKR, & how they use & resolve sadness/despair/fear in their stories & decided that they always left a ray of hope, which was how we could read them & still feel uplifted. This bionicle book had nothing uplifting about it.

B was pretty down, in the aftermath. I have been encouraging him to write to Greg Farshtey & let him know how he feels, so maybe he will... B really likes the Piraka, though, but was having trouble getting the book's script out of his head & finding one he could use to play with them. He spent his tv time with them nearby, but didn't play with them. On Sunday B had a tough time with "thoughts" & tics. As part of B's cognitive/behavioural therapy to help him overcome the OCD, his psychologist had made it clear that one very useful tool would/could be B's natural boy-aggression. He had been suggesting that B imagine the Power Rangers or superheroes of his choice as helping him fight the OCD. B was having trouble wrapping his head around this, though. I want B to be able to use any tool he can to fight the OCD, since it makes his life utterly miserable. I was worried that our philosophy of raising B to channel his aggression differently might be getting in the way of his using it as a tool. I have talked to B about the idea of "fighting" the OCD, because it's not a person, it's not him really, in order to try to help him to see the thoughts as a separate entity & therefore something that can be eradicated (which is what Dr. M has counseled us to do). Sunday evening I had a brainstorm... I asked B if he might imagine using the Piraka against the OCD thoughts, adding that I didn't think that the thoughts would stand a chance against this nasty crew... and B got a thoughtful look on his face. He agreed that there probably wasn't anything that could stand up to a Piraka. Monday morning we went to see Dr. M & took a Piraka with us. Dr. M was delighted. B & I explained the idea to him at the beginning of the appointment, & then I left them to it... B came out of his office full of ideas for using them to fight the thoughts. That afternoon after school, B brought them all downstairs & had them practise fighting the thoughts. He scribbled a "thought" on a piece of scrap paper, then had each one of them attack the thought, ripping the paper. The whole thing had a ritual feel to it (to me), and when he was done, B was more relaxed than I'd seen him for a while. Instead of going up to watch tv afterward, he dug-out a challenging computer game (the rather complicated "Dr. Brain" game that I've had trouble with in the past) & went at it for the first time since before Christmas...

After B went to bed, C & I talked about the new "tools" in the kit. We were both really pleased, & decided that even if B rejected the whole thing after a couple of days, it was a success because it's the first time he's actively agreed to any strategy of this sort. B says he wants to write new Piraka stories, too, maybe this summer after we finish the runrat (see the Chibi post) bionicle story we began as a sequel to the tunrat one. In truth, I think B has already begun the best bionicle story possible. As discouraging as things may get sometimes, when I've ridden-out thoughts with him & faced the blasts of anger & defiance that are normal for a growing child, it really is encouraging to see B doing such positive work for himself. C & I decided that B's becoming pretty amazing in the self-knowledge area, way ahead of his peers, way ahead of ouselves at his age.

Coping with triggers...

As I mentioned in my last post, B has been having more & more trouble with OCD triggers this week. The thoughts that are triggered cause him a range of difficulties, from mild discomfort to near-complete shut-down. The main triggers occur on the way to & from school, which is fortunate from one point of view, since once we get him calmed-down at school he's been doing very well. His focus has been wonderful & he's enjoying not only the work but interacting with the other kids while he does it. Home must not be nearly as diverting, though, because for the past couple of afternoons the triggers on the way home from school have been causing major melt-downs. Part of the problem is that one of his important after-school routines, homework, has gotten a bit of a shake-up. For most of the year B's homework has come from a book of reading-comprehension exercises because he does not tolerate anything that requires much more energy than reading a passage & answering a few multiple-choice questions. The importance of doing homework at all has come into question repeatedly & school has said that it's not really necessary for him to be doing it, but his psychologist seems to think it's important so we're following-through. When the rest of B's class has anything more complicated than math problems for homework, B gets the reading comprehension exercises instead. Or did until a few days ago, when he finished every exercise in the book. Cherie found another book, a bit more advanced, & B is not happy with it... sigh. They'll sort it out, I'm sure, & anyway It's really more of a symptom, with his distress from the OCD being the biggest irritant for him.

When he's exposed to a trigger, B usually starts to tic (physical jerks & vocal "exploding" & hissing sounds) , which is sometimes all that happens. I can tell if he's going into crisis because all of a sudden he'll start rejecting options (say, being offered an orange for snack...) & saying "uh" & "um" in a very distressed voice when I ask him what he wants to eat/do... He starts to clench his fists & gets a grimace on his face, which is my signal to get him somewhere safe, like a bed or the sofa, because he often goes into a fetal-like position next & I don't want him to fall off the chair. I try to hug him if he wants, & give him some compression (which he will often reject- it's as if he doesn't want any comfort at this point). Then I will ask him if he can imagine the thought that's bothering him as separate from himself... if he can imagine squashing it or sending it into a black hole to be crushed... although he does not actively do this (yet), B's psychologist has suggested this strategy as part of the cognitive/behavioural therapy for the OCD, so I at least put the idea out there for consideration. It's hard, at this point in B's distress, to know what he's seeing/hearing/feeling. What I have been doing for the past couple of days when this happens is to broach these ideas, then sit quietly beside him, sometimes holding his hand or hugging him, if he'll let me. Eventually (5-10 minutes?) B's face relaxes... which is my signal to grab Rufus & pounce. Rufus does the rest- foofing B, tickling him, saying funny things. When B's face relaxes it means that he's "back" & ready for some distraction. Anything we try to do before then is rejected. When Rufus & I get B giggling, he's really ready for major distraction- usually a video. If snack was missed then I bring something up to him while he's watching. Then I collapse in a heap- this is so emotionally exhausting.

Yesterday this whole process happened twice after school, once right after we got home & once after dinner. It was good to have C home & observing this new way of getting B back to earth after an OCD meltdown. He had been trying to get B ready for his bath when B started melting-down again, pretty suddenly, so I did what we'd done earlier in the day- got him to our bed, sat with him, etc. Once B was out the other side & ready for distraction, he still wasn't convinced about a bath, but we were (nice, warm soothing water- usually he loves it) so Rufus decided to facilitate (with dad's help) by "pantsing" B (leaving him in his boxers, of course :), to much hilarity. I left them to their tubby & went downstairs to wilt for a while...

After B was successfully in bed & asleep (yay!) C & I talked about it all. He thought this new way of helping B cope worked well (for now... I have no illusions). I am trying so hard to be respectful in my approach & also be aware that I may not really understand what he's experiencing- although he's clearly in emotional pain (asking us to kill him to put him out of his misery is not the sigh of a happy person...). It seems that the combination of being actively present for him & "riding it out" does the trick, for now. Up until now I have been frightened that his melt-downs would progress to the point where he hurts himself (since that's what's happened in the past) but this doesn't seem to be the case right now, so I feel much more comfortable with "riding it out" rather than trying to intervene/distract earlier in the whole process (which clearly doesn't work anyway).

This morning I thought about the triggers to & from school & decided to alter the route I take. B noticed that we were going a different way, but that was all he said... C had mentioned keeping B chatting about Pokemons as a distraction, so I did that too. We arrived at school with no tics or triggers & he was in fine spirits when I left him... so, I guess we have a new route to & from school, which can be altered yet again if necessary (we're lucky there's so many ways to get there!).

Deja vu...

Birthday glow is wearing off. There was something about the birthday excitement that kept the demons at bay for a few days, but yesterday morning they were back... even as we pulled into the school parking lot B was reminded of an old "thought" & started twitching like mad. He made a beeline into the special ed. resource room, aka: safe space, once I got him into the building, & banged his head on the table a few times when we got there, although he let me put my hand down so his head hit that instead of the table, which he usually doesn't allow. I was also pleasantly surprised by how easily he was diverted from the thought when Cherie started suggesting games to play before the morning work began, & I left him happily playing Apples to Apples with she & a couple other kids just a few minutes later. It takes me longer to recover from B's ups & downs than it does him, sometimes, which is another good reason to go down to Paula's classroom & hang out for a while to recover. There's always the need for more hands, listening ears, or crowd control down there... or maybe a friend wants to start knitting a pair of socks & needs some advice (as was the case yesterday). I left school feeling more together & ready to write yesterday's blog entry...

I am definitely caught in the middle right now. This seems to be a chronic state these days, temporarily relieved by the birthday party effort (I have no illusions that it was all done for B's sake :). When faced with a few hours during the day not needed for housework or blogging I find myself too tired to start anything. I found myself trying to explain it to C (once again) today over lunch... I know that if I choose to do anything that takes a lot of concentration, & then if B interrupts (or it's time to go get him from school, or I get a a phone call from school to come & see/get him during the day) the breaking of my concentration makes me irritable & unready to be present for him. So, I have to choose my projects carefully... I don't exactly mind this, since B is my first priority & I'm ok with him being my first priority, but the feeling of being at loose ends/unproductive is somewhat depressing. One of the good things I've noticed recently is that feeling down/depressed no longer brings up feelings of inadequacy or guilt. I spent a lot of my life telling myself that the kind of person I ultimately want to be doesn't get depressed, which morphed over time into "real Jedi don't get depressed". I have finally come to understand that this simply isn't true. Real people, who have real lives & real feelings, do get depressed sometimes. It's nice to finally be free of the extra guilt-trip burden... the bonus being that I tend to recover from feeling down much more quickly than I used to. Plus, I have learned to appreciate the daily housework because I can use it to give myself an energy boost when I need it- it seems that doing just about anything with a purpose helps my spirits, even if it isn't specifically "creative".

When I picked B up from school yesterday I found him almost exactly where I'd left him (not the best of signs...) in the resource room with Cherie. I guess they played a game in gym that was really hard for B & it upset him. The first words out of his mouth to me were to ask if I thought a thief would ever want to steal Rufus. I responded that, although Rufus is precious to us, no thief would want him. Cherie nodded her agreement. We were able to get his stuff together to leave then, but B still seemed very low energy & twitchy, too. After snack he wanted some computer time, so I had him set the timer for the usual 25 minutes. I was surprised when he quit when the timer went off (he usually asks for more time)... he came into the kitchen & asked me about Batman. B has always had a terrible love/hate relationship with superheroes. He adores the Power Rangers dearly, but there are time when just saying the word "power" to him will set off full-body tics. A few weeks ago he had mentioned that some of the kids at school had been talking about Batman (there are a few families which, unfortunately, allow their kids to view all the latest superhero films, no matter how violent, & B ends up not being able to participate in discussing them since we refuse to do the same) & was scornful at first, but I gently stood behind the guy with the cape, having been a Batman fan myself for many years :) B seemed to have worked himself around to wanting to know more about Batman. I had taped some of the Warner Brothers animated Batman series back in the early 90's, so I asked B if he wanted to try some of them. He agreed & I unearthed the tapes. While we watched, I asked him occasionally how he was doing... if they were too scary & the like. After 4 episodes we quit & he seemed relieved. He said that these shows were too "dark" & the villains made him sad, & we talked about the difference between the Power Rangers' monsters, which were more funny than sad or scary, & these villains which all had stories about what had made them go "bad". I told him that we could wait until he was older before we watched any more Batman (or, what I really need to do is get some classic 60's-era recordings of the show I adored as a kid, which set the standard for shows like the Power Rangers). In either case, we were both left feeling bad after the Batman experiment- he feeling disturbed & sad that he didn't like the shows & me feeling bad that maybe I jumped the gun by showing them to him in the first place, in an attempt to get him au courant with the other kids. Sigh.

B watched some PR's before dinner as an antidote to Batman, then dad played Pokemon with him after dinner. I could hear B ticcing more & more frequently, though, as the evening progressed. When I went up for story time he was barely able to get himself into bed, the thoughts & tics were so distracting. We had finished Terry Pratchett's "Bromeliad Trilogy" the night before, so it was a tough night to be beginning a new story. After rejecting three books, & B getting more & more agitated, I finally asked him what he wanted to do. I told him I was worried that he wasn't able to calm himself & really wanted to know what he thought would help. B has never been able to respond to such a request before- by the time we need to ask, he's far too agitated to think... but this evening he was able to say "how about a quick minute?". So I turned off the light & lay down beside him. He was still twitching, so I lay my arm over him to help him calm down. It reminded me vividly of B as an infant, when we had to put him to bed with us because he couldn't soothe himself to sleep. We put a pillow right between ours & lay him on the pillow, on his tummy (he wouldn't tolerate laying on his back, ever). He would still wriggle & fuss so I would lay my arm across him, feeling weird because it felt like I was restraining him, but inevitably he would fall asleep within minutes with my arm across his back, & when I didn't put my arm over him he would fuss & wriggle forever... Last night, B was asleep within 15 minutes, with my arm across his back. I was struck by a strong feeling of deja vu (not to mention relief...). No matter that he's 10 years old now, B's neurological needs seem to be very consistant over time. Although he has his weighted ball-blanket to help sooth him to sleep, mom's arm still has the same comfort it always had.

It's good to remember this, really... that B is, essentially, the same person I gave birth to 10 years ago. He's definitely growing up... As C pointed out this morning to me, B's ability to respond to my request for input/feedback when he was agitated last night was a new & welcome development. But it's good to remember that he may never out-grow his need for strong physical feedback as a soothing method, & that's fine. We just have to remember not to throw out any of the old techniques that still work for him in the wake of his growing & changing. Maybe I'll make an extra ball blanket for school...

Birthday party debrief... :)

Mmmm... still recovering from the time change, hence the lateness of this post (sorry Zilari :) For more info as to the picture... it's explained near the end of the post.

B's 10th birthday party was a great success! The idea to loosen things up a bit & let the kids choose which activities to participate in turned out to be a good one. B did his part as spy "Chief" wonderfully- he could be heard to declare "who wants to go on a mission? every so often, with a resulting scramble of feet as his operatives sprang to alert, ready to be sent to retrieve hidden spy gear. Some of the kids were happier just decoding- C stayed up with them & facilitated this part. Some liked action, looking all over the house for caches of gear & info... they all seemed to like the idea of disguises very much, which was a hoot. We had a basket of old clothes (everything from lab coats to choir robes to suit jackets), weird hats, sunglasses, & plenty of fake mustaches :) & the kids made some wild combos... I just followed them around with the camera. We had invited our friends Paula & her son C, B's teenaged mentor with AS, & C showed-up dressed as a secret service agent- black suit, black tie, with dark shades- & facilitated the decoding by transcribing the messages on B's computer as the kids called out the decoded letters. We also invited our Japanese teacher, Tomoko, who seemed to have a great time watching the kids' antics. The part where B excused himself to go to the bathroom & "disappeared" went without a hitch- everyone knows about his hair-trigger bladder, I guess :) & they were so absorbed with the remote-control operation (using a spybot to retrieve a message in a bottle from a baby-gated room- this so they couldn't go in) that they didn't miss him until it was time to decode the message. When a delegation went downstairs to the bathroom & tentatively knocked on the door, with no response, one of the kids said "what'd he do, flush himself down the toilet?" to much hilarity. What they found was Rufus clutching a note from B explaining that he'd been captured & asking them to find him (signed "sincerely, Chief"). Their message in a bottle explained which spy gear they needed to find him, & after they'd thoroughly searched the house I handed them a somewhat cryptic map to where he was (at the neighbours' house). C said he'd never seen a group of kids put on their shoes so quickly... They found B without any trouble, with the map & spy bug receiver, & it was a joyous reunion. Over cake & ice cream, they asked B who had captured him which sent him on a flight of fancy (it was either a robot & someone wearing a robot suit...!) only matched by the stories of the dangers faced by his rescuers (ninjas & spitting flowers :). This creativity was an unexpected bonus... After prezzies were opened, they all ran outside with boxes of poppers that Paula & C gave him & had a great time with those, then opened up the stomp & pump rockets B'd also received & did their best to get them stuck in trees (succeded in losing one in the neighbours' gutter :). We were lucky that the rain held back for the afternoon & it wasn't too cold to be outside. These kids needed to blow off some steam...

After everybody went home B really wanted some lego time- he'd not only gotten a "big" ExoForce set from us but his best buddy E had found a new ExoForce we hadn't seen & he was mad to put it together... even so, while legoing away B called dad & I into his room. Without looking up, he told us that this was the best birthday party ever & thanked us. I got teary... he's never directly thanked us like this after a party, being still so caught up in the excitement. C & I had been very impressed by how well he held it together through it all. B had gotten snarky once while playing outside with the rockets & when I asked him to calm down I could see him pulling himself together, followed by a blithe "sorry mom" & he was back in the swing of things. He was careful to thank everyone for the presents they gave him & was gracious throughout the whole party... he was really at his best, or maybe this party that we'd planned together brought out the best in him. Both C & I are grateful that we read B's signals a few weeks ago & increased his zoloft dosage because we're sure that's another reason he coped so well. He's gone nearly a week without hitting his head on anything, which tells us that not only is the anxiety less acute, but that he's being able to think about coping with the anxiety & modify his responses to it, rather than having a knee-jerk reaction to it.

Yesterday was B's birthday meeting at school (we bring a treat to share with the two 3-4th grade classes, the kids all sing happy birthday & then they either get to guess the bday kid's age or bday kid makes a math problem for them to solve that tells their age). B & I made candy sushi again this year (rice krispies treats made into sushi using fruit roll-ups, & twizzlers for the middle- see photo at top :) because it was such a hit last year. One of his school friends, who came to B's party, & who has been baking at school, asked to make cookies that morning, too, so with Cherie's help he was able to add a big plate of cookies to B's birthday meeting treat. A very sweet thing to do! During the "happy birthday" part of the meeting, B requested that instead of singing "cha cha cha" in between lines (it's a Cobblestone thing...) they sing "fart fart fart" (a B thing...), which was sung with much gusto & giggling. His math problem to discover his age was "what is 1000-990?" which impressed the heck out of me... was I thinking of such big numbers when I was in 4th grade?

Life is creeping back to "normal". We're catching up on our rest- we really needed that extra hour Saturday night!! B is falling back into a rhythm after school, & after dinner he & C have been playing with the Pokeman starter decks we gave B for his birthday- he was so psyched :) I'm trying to find a rhythm to my life, too... should I try weaving again? A bigger knitting project? Sewing? It's like we've achieved the summit of a mountain, getting through the birthday events, & now I'm figuring out what's on the other side...