Wednesday, February 28, 2007

Being the change...

The first two mornings this week went like this: I get up & roust Brendan out of the tv room (right next to his room) where he's been quietly watching tv before the alarm goes off for the day to begin. He & I go ino his room & he chooses his clothes for the day. I leave his room, closing the door behind me & admonishing, "Please, only get dressed, ok?" & he replies, "Ok". I go & wash my face, then pick out my clothes for the day & dress. (For me the process takes from 10 to 15 minutes.) When I am dressed, I go back into the bathroom to get my glasses, calling out "How are you doing?" And both mornings Brendan replied, "Uhhh, getting underpanted..." Which means that he's spent the past 10-15 minutes not getting dressed. Blood pressure soars (mine) & I do my best to hold my temper while I brush my hair & think what to do...

It had been pretty much the same the week before break as well, & the break might not even have happened, so far as breaking undesirable patterns goes...

Yesterday I had had enough. I went in when he was getting his shirt on, took a deep breath, & explained to him exactly what would happen if we didn't find a way to change his dressing-time behaviour. I explained that having to chivvy him along every morning was very unpleasant for me & that when he replies "Ok" to my "Please, only get dressed." (in other words, don't do anything but get dressed) I feel as though he's making me a promise, which he then preceeds to break, which is very upsetting. And, if we can't find a way to change things, what I will do is leave him to do whatever he thinks is more worthwhile than getting dressed & then when it's time to go, I will collect him in whatever state of dress or partial dress, he is in & we will get in the car & go. If he hasn't eaten breakfast, then he doesn't get breakfast. As I am speaking, he is listening sullenly, sitting on the bed with a shirt half-over his head. It is an established fact that he can't listen & dress at the same time, & I understand this. So by choosing to unleash it all while he's dressing is somewhat counter-productive, but I decide that it has to be said, for my sanity's sake, & damn the consequences...

Then, I told him why I had not resorted to this solution (also known as "natural consequences") before. I explained that hauling him off to school in his jammies, with no breakfast, feels disrespectful to me. I don't want him to be either hungry or embarassed. But I need him to understand the importance of co-operating with the morning schedule. The thing is, Brendan runs hot & cold when it comes to getting dressed, so I've been brought to the edge of frustration time & again. The OCD has caused some bumps along the way, which led to his starting to pick out his clothes to wear last fall, since some of his shirts & undies sometimes triggered anxiety due to their reminding him of other things. The biggest problems are his being sparked by a lego design that he just has to try out just then, & his sitting & thinking during dressing time. As for giving him more time- I just don't think it would help. What Brendan really seems to need is better structure, since he seems to float through time without taking much notice of it unless it inconveniences him. When he was taking too much time eating breakfast a while back, & I got tired of chivviying him along through that part of the morning, I gave him the responsibility for checking the clock & making sure that he was done by 7:45, so he'd have time to brush his teeth & get ready to go. Any extra time was free time, so that was the incentive for eating quickly. This has worked really well, & all I have to say now is "Look at the clock." & he gets his act together. Up till now there's been sufficient variety between slow dressing days & quick dressing days that I have only contemplated following through with the consequences thing. And... I recently realised that there's another reason that I hesitate to do this...

Nearly 40 years ago my family moved to the city where I've lived ever since (except for nearly a year living in Ottawa when I was in my early 20's). I was entering 4th grade & it was the 3rd move & school since I'd started kindergarten. It was a really bad year... The school district we lived in then (we rented an apartment for a year before moving into a house) reorganised mid-year & I ended up in yet another school with new teacher, new kids... I was miserable. I had terrible stomachaches, stayed home a lot, & felt really guilty about it. I would have screaming tantrums sometimes- I remember feeling as though life was absolutely unendurable & would melt-down when I just couldn't take any more. (I should add here that I was also being sexually abused by my father, which didn't come to light until I was an adult, so I know that the overwhelmed feelings were due to this as well.) My parents' reaction, when I would melt down, was to throw cold water on me. I have no idea where this idea came from, but it did, eventually, work... but at great cost. It made me feel as though I were an uncontrollable animal when they did this. It embarassed me terribly & I'm sure that's why I eventually stopped. I never did get any sense of empathy from my parents, no support, just the sense that I was horrible & bad & worthless.

So the idea of embarassing my kid in order to get his co-operation is completely out of the question. As I write this, I realise that I could never take him to school in his pajamas (even though he told me that it would be worse to miss breakfast... :). I explained the consequences thing to him with the full intention of following through on it, but the effect was to let him know that I was at the end of my coping with the situation, I think, & to stimulate his thinking about solutions. And that's just what happened...

After we had both simmered down yesterday morning, & he was dressed & eating breakfast, I declared a break from the topic by initiating a discussion of his up-coming birthday party so that I could start laying-in supplies (always a pleasanter topic, birthday parties...). Then when we were both in a better mood I re-opened the discussion of dressing time. One thing I learned was that Brendan seemed to think that he could get "just one lego" done as well as get dressed on time, so we had a chat about the value of self-talk. I told him that sometimes I really don't want to fold the laundry, but if I don't things really get out of hand, so I tell myself "Now it's time to fold laundry." & usually I do. I explained that he has to remind himself that he has to get dressed first- that there's no time for legos first. We also decided that setting a timer would keep him anchored time-wise, so it wouldn't slip away from him. I have a kitchen timer that beeps at 10 & 5 minutes before going off, so that's a great way to keep him on track. I also told him that he might want to consider writing some of his lego ideas down, so he won't forget them & can make them after school.

By the time we left for school we were both feeling fine. We had a plan. School went really well. They were able to go outside & play in the snow & Brendan got his fondest wish- to be buried in the snow :) They were doing academic assessments, too, & Brendan told me that not only did the math assessment go well, but he really enjoyed it.

This morning the timer was in place & just as I was going in to his room to get him going, he ran past me into the bathroom. Diarrhea. Sigh. We set the timer anyway when he was done (& feeling better) & I got into the bathroom to wash my face. As I came out, I heard legos rattling & steeled myself... "How's it going?" "I'm dressed!" "Oh!" I went in & he was fully dressed by the lego bin. He told me that he figured he had some time left because the timer hadn't gone off yet (it had taken him barely 5 minutes to dress :). I gently explained that, because he'd spent a lot of time in the bathroom, he really needed to go eat breakfast, & then thanked him for getting dressed so beautifully. This made me realise that by setting a timer, I have basically given him this time to use as he wishes- as long as he gets dressed first. I'm going to have to remember to be respectful of this... He bopped downstairs in pretty good form & ate some toast. Charlie came home to get him (Wednesday he gives me a break from school driving) & Brendan ran for the bathroom again. I was ready to keep him home, but dad the doctor said "Get the Kaopectate..." Well, he's not running a fever & is in very good spirits, & Charlie said he'd alert Cherie that I'd come & get Brendan if he had any more trouble. And they packed spare boxers in his backpack (much to Brendan's amusement).

Over & over I am struck by how much my own childhood experiences are shaping Brendan's. I am also aware that the abuse I experienced as a child has made me much more empathetic toward my son's autism. When he melts down- for different reasons than I did- I want to support him, to hold him if he can tolerate it, & to stay with him & not let him suffer alone. It is healing to treat him the way I wished I'd been treated... I am aware, of course, that he is not me, & that his needs may be different than mine, so I try to keep this in mind as well. Brendan has responded well to empathy, though. And sometimes when he perceives that I am sad or upset, he hugs me & speaks kindly to me. :)

Labels: , ,

Monday, February 26, 2007

It's not "all about us"...

The last 2 days of the school break were a bit busier than the week itself, with friends visiting both days, but a nice end nonetheless. Brendan had another school friend over (for the first time) on Saturday afternoon & they had a very nice time. They went outside with Charlie twice, once sledding & once to the snow fort down the road. The inside time was spent playing with legos & watching excerpts from "It's a Mad, Mad, Mad, Mad World" accompanied by much giggling. Sunday we had grown-up friends from church over to lunch & Brendan spent some of the time watching the new Pokemon dvd that he'd (finally) earned with his behavioural chart & playing his new Advernture Quest game, Dragon Fable, while we visited- so it was a win-win :) He was also quite friendly over lunch & talked about our upcoming trip to Japan with our friends. I was happy to see him so relaxed in the afternoon because he'd had major tic trouble at church that morning. There was a special lunch being prepared (we hadn't know about it when we made other lunch plans, but it turned out for the best...) that day & Brendan found his Sunday morning session of Adventure Quest at church (while Charlie & I were in choir practise) horribly disrupted by the smell of meat cooking. Sigh. By them time the service started he was very upset & at first he wouldn't even read the book I keep in my church tote bag, which is what he usually does until we all leave for Sunday School (the kids & RE teachers are in the first part of the service). I finally conviced him to read & that distracted him very nicely, but when he got to Sunday School he didn't want to stop reading & go into his classroom. I didn't rrealise what was going on until my class came out in the hall to put some stuff on the bulletin board & I found one of his teachers hovering between him, sitting in a chair & reading on the landing leading to the RE wing, & his classroom down the hall. I asked Brendan what was up & he said that every time he put the book down he remembered the meat cooking, so I told his teacher that he'd come with my class (I teach Sr. High) & my kids were fine with that, so he sat & read the rest of the time. He smelled the meat as soon as we got downstairs, so we had to hustle a gagging child out of the side door, to a few puzzled stares (new folks who don't know us :). He was very angry on the way to the car, about how people killed those animals & were going to eat them, but calmed down once we headed for home, asking if we could go to the asian restaurant that we've been visiting the past few Sundays for lunch (at his repeated request). We explained again that friends were coming over, but held open the possibility of going out to dinner. And then we got home, & friends came over, & Brendan was fine.

I wasn't really fine, unfortunately, having woken-up with some sort of sinus thing that had my nose running like a faucet. By the time our friends left my head felt as though it was going to explode, so I took more tylenol & laid down on the sofa, while the guys withdrew to the second floor to play legos & watch some videos. After about an hour & a half I felt well enough to sit up & even eat some dinner (Brendan very sweetly didn't even mention going out...), which was a real blessing. After Brendan had a bath we all watched 3 episodes of Pee Wee's playhouse (he'd wanted to watch 3 before bedtime, so we calculated together when we'd have to start, & by extensionn when he'd have to have his bath, so we'd be done by bedtime). He was a bit grumbly about going back to school in the morning, but Pee Wee cheered him up :) He fell to sleep very well- so far there's been no noticeable effect of the reduced seroquel dosage on his falling asleep...

This morning I did wonder if he wasn't feeling the effects, though. He was predictably grumbly, moany, bad-tempered before breakfast, but half-way through breakfast he had a terrible tic that had him red-faced & gasping for breath. I felt really awful for him. He ran for the sofa & as I sat with him he was able to relax & tell me that the tic was related to the ones yesterday about people cooking & eating meat. He said that the tic made him feel that he shouldn't be alive... but he did tell me that it was ok to eat plants (whew!). I reminded him of how the american indians used to thank the spirits of the plants & animals they ate, & were acutely aware that they were part of a cycle of life & that they needed to respect it. We talked about how we've started to say "ittadakimasu" (what the japanese say) as a grace before eating & how that way we give thanks everything that goes into the growing & making of the food. When he seemed recovered from the tic I asked him if he wanted his breakfast & he asked if he could eat on the sofa. I told him he could if he was careful, & brought it out to him. The rest of the morning was fine & we got off to school nearly on time (although the laundry had to wait until I got home). He was in a good mood when we got to school & was sitting at his desk doing morning work when I left. He did ask if he could call me if he needed me & I told him he could, then explained that I had one appontment where I'd be on the cell phone (just for emergencies), so that he wouldn't worry if he called & I wasn't home. So far, no call...

Over the weekend I witnessed & participated in a discussion of sorts in Kristina's Autism Vox site. At last count there were 54 comments on this particular entry, that was about Amanda Baggs being interviewed on CNN. One "participant" (I must loosely define participant here, since he really wasn't doing much taking-in of what others were saying, in my opinion) turned things to a back-&-forth, us-vs-them exchange about "curing" autism, essentially telling folks that if they weren't in the curebie camp they were "in the way". I found myself increasingly disturbed by the tone of this parent's comments & even made a second comment to the effect of "who told you a cure exists?". Rochelle made a heroic attempt to bring him into line, explaining that it's common courtesy to discover the general outlook of the site at which you are commenting before disrupting the flow with ignorant remarks, but he didn't get it :( At one point I found myself hugging Charlie in the kitchen, while describing it all, really put-off by the obnoxious sense of entitlement that emanates from some of these hard-core cure types. Charlie just nodded agreement.

Up till now I have felt very wary of taking on this sort of thing in the blog. I cannot know or understand how another person feels & I'm acutely aware of it, so I try to be careful of others' feelings & perspectives about autism in my life & in my writing. But reading what that one person seemed to think was unflagging devotion to their cause made me feel as though a line had been crossed & I had to say something. And that something is this:

"It's not all about us!"

In other words, autism is not about the parents, & unflagging devotion, when it is disrespectful & thoughtless, is just plain wrong. I am the parent of an autistic child, who will someday be an autistic adult, & I do have have feelings about the process of raising an autistic person in a society that has a long way to go in terms of accomodation & acceptance. It's natural... I'm a person who is learning & growing & trying my best. I haven't always done a very good job of managing my feelings about the process... But the whole process is not about me or my feelings. It's about my son. His feeling are really important. His feeling competent & good about himself is essential. If I feel bad about him, how can he feel good about himself? This is my basic problem with those who feel they can "hate autism" but love their child. I just don't see how this is possible... Kids are smart & verbal ability doesn't determine anyone's intelligence (or, as an aside, one's worth as a human being), so I believe deeply that the child of someone who hates something about this child runs a terrible risk of picking up on that hate. What a sad & awful thing...

And as for a cure, who ever promised anyone a cure for autism? Who ever said such a thing was possible? It is not defeatist to accept something & move onward with it, learn to live with it, let the struggle make us better people for it... Perhaps my perspective is the result of spending many years working with & befriending developmentally disabled children & their families, beginning back in the early 1970's. I knew many, many families with disabled children. I was on the babysitting list at the local UCP centre, so got to know many families very well. I became close friends with a girl my age with CP, too. I saw the struggles, I saw the sadness, I saw despair... I also saw joy, pride, & love. I learned that the ability to cope successfully with the raising of a disabled child was not limited to certain income levels or education levels. It seemed to have a lot to do with overcoming grief & getting on with life. The families that were stuck in grief never seemed to be able to fully accept their child, & this was very damaging. Those who were able to move past raised children with higher self-esteem, & like my friend with CP, are now successful adults (she became a special ed. teacher :). I never ran into a family of a child with CP or Spina Bifida, or Muscular Dystrophy (telethons irregardless...) who felt they were entitled to a "cure" for their child, either. There was fundraising for research, the hope for prevention or better treatment, but no-one talked about a "cure". I can't help but wonder if this is a sign of the times, before micro-chips & sophisticated genetic testing was available. Now we have prenatal screening for many things & tests on the horizon for many more. All of this promises a "better" world (at least for those who have access to them), but I don't buy it. Many others have spoken more eloquently to the issues of eugenics & decreasing our human diversity, so suffice to say that I share those concerns. But another concern I have is when did our society get this sense of entitlement? When did the overwhelming sense that parents have the right to blame or sue or expect restitution for giving birth to a child with significant differences occur? When did we decide as a society that all people have the inalieable right to being "perfect" at birth? And, for that matter, who decided what "perfect" was? Perhaps it's that I have been surrounded by "the disabled" (& actually been disabled myself) for most of my life, but I never expected that my child would be "perfect" when he was born. I hoped he would be ok, sure, but my main concern & joy was bringing him to life!

At first, of course, having a baby is about "us". Charlie & I really wanted a child because we felt it would enrich us a individuals & as a couple, although we never expected it to be easy. This has turned out to be true in every way. A big part of that enrichment has been the discovery & nurturing of another human being, with his own individuality. I'm not in charge of just how individual he gets to be- that's up to his genetics & the indefinable "Brendan-ness" of Brendan. I think that we've been aware of this from the very beginning, & why I am aware that I really need to get out of his way sometimes, so Brendan can be Brendan. As his mother, I feel I have the right & responsibility to help him become a functioning person in our society, to teach him & encourage him to be his best. This teaching covers everything from education to manners to a sense of his belonging to the human race, with all that this means. I also have the right & responsibility to call society on the carpet when it's definiton of functional is toxic & unrealistic. That's where the advocacy comes in... & by doing our doing this for him, Brendan learns how to do it himself. In no way do I believe that "Autism Advocacy" requires that my kid's autism be changed ("cured"). Having sensed in my gut, back when I was in my teens, that the families that moved forward with their lives, loving & adapting as necessary to their disabled children, were the ones who succeeded in all the ways that I count success (happiness, satisfaction, production of functional people) I have decided that's the way we'll do it, too. No amount of railing, weeping, or anger at his difference will help my son or my family. In fact, by not taking a cure stance, we are moving forward as a family. Our positive attitude ripples around us & affects those we know in positive ways, too. As much as I weep sometimes because of Brendan's pain (from tics, from OCD anxiety), it's just a fraction of the time we have together. Keeping this in perspective helps, as has also the successful weathering of past emotional storms. There was a wonderful post by abfh recently that explored the very appropriate place of suffering in life, & the buddhist perspective that "Life is Suffering". It's no wonder that I've found buddhist thought very helpful in my journey as a parent...

For me, the bottom line is that life is what we make of it. When I chose to bring new life into the world, I knew I'd have to stretch myself. That's one of the reasons I wanted to become a parent. But I can't stop stretching... every day I stretch, sometimes it's really painful. Sometimes I fail, & sometimes that's even ok- how will Brendan learn to accomodate others or empathise with them if I'm a saint? I follow my internal sense of fairness (something Brendan seems to have already well in place, too :) to determine when I'm stretching too much, or when I'm not & being selfish. I can listen to my kid, too (thanks to his sense of fairness) & at least take him seriously, of not actually acceding to his wishes. I can listen to my husband, too. I read, I learn, I talk to others, & I hope to do my part to make the world a better place. Not a perfect place. An accepting place... a good place to be alive in.

Labels: , , , ,

Friday, February 23, 2007

Relaxation works... :)

Wednesday was a busy day, but satisfying. Charlie took Brendan to see his psychiatrist first thing. It's been working out pretty well to have Charlie do the psychiatrist visits, with this "new" one (our 3rd in as many years) at least. One thing they discussed was the next phase in our continuing attempt to get Brendan off the seroquel. I've been reading good things online about the use of melatonin to help with sleep. Brendan's evening dose of seroquel is pretty much only necessary because the zoloft wires him up too much to fall asleep, so Charlie discussed the possibility of eventually substituting melatonin for the seroquel, & the doctor gave us the green light to try. So, we've halved his evening dose (from 50 mg. to 25 mg.) & have purchased 3 mg. melatonin capsules (vegetarian ones) to use if necessary. The past couple of nights Brendan has fallen asleep just fine (maybe taking 5 minutes longer than usual) to our nightly dose of Rachel Carson's "The Sea Around Us". We explained the melatonin to Brendan advance, & he's on board with the project- he said they learned about it at school, & anything that he sees as "natural" seems ok by him. Another cool thing that happened at the psychiatrist... Brendan had been refusing to even consider summer camp for this summer, mostly because of anxiety about meeting new people (for Mindstorms camp) & some already-established OCD triggers at the computer camp he's attended for the past 2 years. When Charlie mentioned this to the psychiatrist, Brendan said that he'd figured-out a way to go back to computer camp, in other words, ways to overcome the triggers. Wow! Not only were the psychiatrist, Charlie, & I amazed (& parental units relieved), but Brendan's psychologist, whom we saw later in the day, was impressed as well.

After the doctor visit, they went off for a haircut, since the long-ish, unruly hair Brendan had been cultivating for his mad scientist role in the class play were no longer necesary :) There is an ice cream parlour attached to the salon, so the main incentive for haircuts is to bring home some ice cream, which they did. What was I doing while they were off & about, you may ask...? I have been desperate to make a duvet cover for our new comforter that has been obnoxiously shedding sheep guard hairs (the coarser hairs in the coats of sheep that are not bred for yarn-quality wool) for the past few months. I had planned-out the project a few weeks ago by raiding my fabric stash & came up with enough fabric to do the job tastefully (hooray for stashes!). Wednesday is bedclothes-washing day, so it was a natural to try to get the duvet made, since all the bedding would be clean & free of hairs... I had designed it all & the fabrics were in a heap on the floor, so I had to cut them out (measuring twice first, of course, since this is true for sewing as well as woodworking :) & then patchwork the 2 sides. I had found enough asian-type fabrics for one side & batik fabrics for the other, so reversing it makes gives a totally different "look". I was able to get the patchwork sewn before lunch- hooray!

Brendan requested that we go to the local diner for lunch. Hmmm... it was a bit puzzling because the last time we went he barely ate anything (well, except for the fries...). Brendan has a disconnect (not unique to him, I have it too) when it comes to how he thinks something will be & how it actually turns out. He loves fries & particularly the ones at the diner. He prefers to go there & get them, rather than do take-out. Unfortunately, when he gets to the diner he starts feeling surrounded by "dead animals" (meat) & freaks out. Just about everything veggie on the menu could have meat added to it, & the very proximity of the word "chicken" was enough to make him veer away from that food choice. Sigh. He wouldn't order just fries & a milkshake because that wasn't a "healthy meal" (although we practically begged him to). So, he settled for nachos, too, but was in tears by the time we'd ordered, so just after fishing a lactaid tablet out of my purse (for his milkshake) I pointedly asked him questions about one of the characters in his new, AQ-based story. That worked beautifully, & he pulled his head out of Charlie's armpit & enthusiastically told us about this baddie- an interesting combo of Vader & Naraku. As advertised, he barely touched the nachos, but Charlie & I ate them along with our grilled-cheese sandwiches & we all enjoyed our meal. Afterward we gently talked to him about what was so difficult about the diner that day, & he told us about being surrounded by dead animals... & we talked about choosing different place to eat where he wouldn't be so bothered... (but what about the fries!?!).

I was able to work on the duvet cover some more after lunch, until Cherie arrived to stay with Brendan while we went to visit his psychologist. He was so psyched to see her & she was happy to see him, too :) On the way to the appointment Charlie & I went over what we wanted to talk about. My main issues were Brendan's difficulty at the end of the schoolday, screaming obscenities in the stairwell & banging his head on walls, lockers, & windows, & my other main concern was the increasing incidences of Brendan pushing my buttons to the point where I lose my temper. Charlie wanted to check out some techniques for helping desensitise Brendan to some of his OCD triggers that had been mentioned to him by a friend who is a retired child psychologist. One of the best parts of visiting Dr. M, aside from the great advice, is that we almost always come out with a sense that we're doing our best for Brendan, that our creativity is appreciated & doing good things, even when it seems as though we go backward sometimes. One of the messages we got at this appointment is that, as Brendan gets older, he's not going to respond as well to our efforts to help him behaviourally, but will respond to other adults & peers. I guess it's a developmental thing... (& also part of the button-pushing issue). Dr. M has been very impressed with Brendan's response to his OT's work with him to help with relaxation & ways to respond to anxiety, so he suggested asking her to help Brendan come up with strategies for dealing with the end of the day at school. He thought that some of the things we've been doing, like taking a different route & trying to divert his head-bangs into me instead of the wall, were good, but was also interested to know if Brendan behaves the same way when Charlie gets him (on Wednesdays) as he does every other day with me. Since the past few Wednesdays have been snow days we couldn't tell him, but he said that if he does behave differently, it's a good way to help him see that there are alternatives to his end-of day de-stressing behaviour & choose to do things differently. As usual, we came out of the appointment with new ideas & a sense that Dr. M is not only a skilled child psychologist, but genuinely likes our kid (that really helps, too :).

Brendan & Cherie had had a great time while we were gone. She told us how much fun it is to spend time with him when he's relaxed at home, since she sees a different side of him at school. I was able to work on the divet cover right up to dinner & after, & actually managed to finish it before bedtime!!

Here's the "asian" side:

Here's the batik side:

And here are the fun buttons (also from the stash) that close it at the bottom:

Yesterday we started out at the grocery store, which is not one of Brendan's favourite places because of the noise, confusion, & OCD triggers (such as meat). Sometimes we speak japanese though the whole trip, which distracts him, & he always is on the lookout for one special thing he can get, which also helps with anxiety. This time, he decided to cope by pulling his watch cap down over his eyes, hanging on tightly to the cart or me, & pretending he was blind. It was a hoot. He chattered about what he was "sensing" without his eyes & enjoyed the dizzy feeling of turning corners without looking. He did very well & it was one of our best shopping trips to date :) While we were there he mentioned that he's been feeling really good about life lately, & when I asked him why that was so, he said that being home from school & able to relax & do what he wants was helping. And also that he was glad that dad & I are alive... I mentioned his comments at dinner so Charlie could hear them, too. It was very heartening, & consistent with the Brendan I've been with all week. He is relaxed & much less ticcy, with things only getting uncomfortable for him late in the day, as it has been since he was a toddler...

The rest of the day was really relaxed. He played AQ, we read from "Eldest" to each other, we watched some Pee Wee. Very nice & mellow. I had been internally reflecting on our visit with Dr. M & over lunch proposed to Brendan that we start a new charting system just to cover the language issue... Brendan has been swearing a lot lately, & all attempts to make him aware of it & to take some control have not been very successful. He's been having a terrible time earning numbers for his regular behavioural charting because of it & it's been kind of demoralising to all of us, since Brendan's not feeling successful, & he's also not getting positive feedback for the other things he's doing well, So we agreed upon a new system where he earns something else (some Pokemon supplemental packs) if he gets stickers for 5 days (his idea) without swearing, & then language won't affect his regular charting. Charlie liked this idea, when we told him about it, so we're set to go... & no, he didn't get his sticker yesterday, but he didi get his number :)

Labels: , , , , ,

Tuesday, February 20, 2007

Pokemon & music...

I began the day with a hot flash, which would have been a drag, but it woke me up in time to let our friend, who cleans the house very other week, in the door without his having to bang on it & cause a ruckus (the front doorbell is on the fritz). One of the hazards of break week is the intersection of things that occur regularly with a more relaxed, "don't bother to set the alarm" mindset. It all worked out ok, though, with Brendan & me enjoying a leisurely breakfast & then having fun exploring the most recent update of the "Pokemon Daisuke Karabu" ("I Love Pokemon Club") online newsletter. Tomoko found this Pokemon club for us last summer & we've been having fun with it ever since. They have bi-monthly calendar pages that you can print out featuring Pokemon characters (colouring pages, too, but Brendan doesn't colour...), updates on the "kaa-do ge-mu" (card game) releases & also the latest on the movies. We watched the trailer for the next Pokemon movie, the 10th to be released, & found a poster advertising the IMAX release of the movie that featured Pikachu & friends wearing 3-D glasses. We just roared with laughter at the picture... It occurred to both of us that we might be able to catch the movie when we go to Japan (since it won't be released here on dvd for probably a year). Charlie's comment, when we mentioned this at dinner, was to ask wearily if it would be subtitled... (no way! :) I was pleased by how much of the information from the site I was able to get with my still pretty limited understanding of japanese- reading the katakana really helps, since words written in katakana are likely to be english words translated to japanese, & Brendan's getting really good at figuring out the translations so we make a good team.

After he finished a 45-minute stint on Adventure Quest, I asked Brendan to help me with a special project. Our neighbour had shared a treasure with us last fall- a set of 12, 20-year-old cassette tapes called "101 Favourite Songs Taught to Japanese Schoolchildren". The set had been given to him by a friend & our neighbour thought we might be interested in it as well. There's a songbook & list of all the songs as well, & it all seems to have been produced by the Japanese Ministry of Education. I started listening to the first tape a while back, which began promisingly with "Sakura, Sakura" (the famous song about cherry blossoms) & a few other old & well-known tunes that we've even heard in episodes of InuYasha, but then it veers into very weird territory... For one thing, the arrangements of the songs are 80's pop-esque, with a mix of traditional-sounding instruments & obviously synthesised instrumentals. For another, some are actually western tunes, such as "Auld Lang Syne", with japanese lyrics not related to the western tune at all, which comes off as truly surreal. The A sides of the tapes are all in japanese & the B sides are the exact same songs as A, but in english. I had decided that the only way to make use of all this music was to record the songs that seemed authentically japanese on my laptop (in QuickVoice) & turn them into mp3 files so they could be put on cd. That way I could burn a disc for our neighbour & have one to listen to in the car, to enhance our learning of japanese. The only hitch in the plan was that I hadn't done much with the QuickVoice software, but recording the sound effects for Brendan's class play had taught me what I needed to know, so it was just a matter of finding the time & help... I wasn't sure if I'd be able to jump from tape-player to laptop quickly enough to record each individual track, so I asked Brendan to help me get set up & work the tape player. He was a real trooper through the first few songs, but boredom set in, as well as the giggles, & then he started dropping things while we were recording, so I decided that I could manage & let him go back to AQ (with the sound off, bless him...).

On & off for the rest of the day I alternately worked on recording (winnowing out the really cheesy stuff) & doing stuff with Brendan. We had planned to go to his best friend's house this afternoon, but E's mom has the flu & so we couldn't go :( We did read to each other from "Eldest" after lunch, & then Brendan finished weaving a scarf (that his class had been making in school so they could raffle it off to benefit the Heifer Project) while I read more "Eldest" to him. In the late afternoon, just after finishing an AQ stint, the tics started getting to him & he was having trouble being on his own, so I closed-up the makeshift recording studio (I had just begun the 5th of 9 tapes-hooray!) & we watched some old episodes of "Rough Science" that we'd taped probably 5 or 6 years ago for him. Brendan was a bit teary because of the tics & told me he was glad I was alive, & I replied in kind. Eventually the tics went away, & it was nice to relax with him before dinner.

As we were finishing dinner Brendan began telling Charlie & me about some of his made-up Pokemon characters, called "Rabitor":

Although he hasn't drawn them yet, he was describing the habits of the evolved forms, called "RabbitRats", & at one point said, "...and they have a staff...". This struck me as funny & I said, "What, you mean like they have secretaries & stuff?" Brendan gave me a "very funny" smirk & said that, no, they had sticks... A couple of minutes later he was on to a detailed description of how these critters choose their leaders, "... and the one that wins becomes the new leader...", to which I replied, "...and the rest become the staff! You, take a memo... you, make some coffee!" Brendan graciously laughed at my persistent silliness & told me it was a "good one, mom"... and proceded onto another aspect of Rabitor-society life. I'm lucky my kid has such a good sense of humour because my attempts to add levity to his perseveration (as self-preservation) would not be nearly so successful if he didn't...

Tomorrow Brendan & Charlie will spend the morning visiting his psychiatrist, having a haircut, & buying ice cream. I am going to try to start making the duvet cover for our comforter that's been shedding wool since we got it, since it's driving me crazy. In the afternoon Charlie & I go see Brendan's psychologist & Cherie will stay with Brendan, which he's really looking forward to (how many kids look forward to seeing one of their teacher's during a school break ? :). The mitten wool I made over the weekend is dry & wound into a ball, so I can start swatching (to know what size needles to use to knit them). So far we're having a relaxing & pleasant break week- what more could we ask for? :)

Labels: , , ,

Monday, February 19, 2007

Winter break is here...

I was sitting at the kitchen table the other day & was struck by the juxtaposition of items stuck to the fridge :)

We muddled through the end of last week fairly unscathed. I caught the upper-respiratory bug that Brendan had going into the class play, so things were a bit hairier than expected, but I'm feeling really proud of myself because I managed my energies well enough that Brendan & I didn't butt heads as we usually do when I'm low-energy. So far, so good... :)

Friday was going to be a tough day, though- I had agreed to do a spinning demo at Brendan's best friend's school in the late morning & would have been looking forward to it except that I was really under the weather. Plus, Tomoko's out of town for 2 of our Saturday lessons because she's interviewing for doctoral programmes all over the place, so we'd decided to have her join us for my usual Friday afternoon japanese lesson with Brendan at school. She has applied to do some substitute teaching at school, since she's done with her master's work & is waiting for graduation & then a stint back in Japan before coming back to the US to begin her doctorate, & would like to work (she's waitressing, too). Everybody at school is excited about the prospect of having Tomoko subbing there (especially Brendan), so we thought we'd follow up our lesson with a tour of the school & various introductions.

Sooo... by Thursday afternoon I decided that I wasn't sick enough to email the teacher I was doing the spinning demo for & tell her I couldn't come, & had started getting excited about doing it (as I often do- I really love demonstrating handspinning to kids :). I gathered up all of my various things to show (garments made from handspun, fibres from a variety of animals, tools) & baskets to carry them it, & was looking for the bag that I sometimes carry my wheel in (it collapses to an easier carrying shape, although it's still really heavy) when I found some really gorgeous wool I'd purchased a couple of years ago. Something clicked in my mind, so I hauled the wool out, too, along with the carry bag.

Getting Brendan out of bed on Friday morning went easier than usual because it was the last day before break & because Tomoko was coming to school in the afternoon. It was such a relief to have him in a good mood, & a blessing because I wasn't frazzled before we even got in the car & so had the energy to cope with the rather horrid driving conditions- 2 days after the snow storm! (I think it was more people on the road that made things really bad, compared to Thursday...) After doing my door greeting & getting Brendan settled, I zoomed home to iron my 1870's dress & apron for the demo, got dressed, put up my hair, loaded up the car, & was off to the demo. They were having colonial days (the 4th grade at this school does this unit at the same time every year) so many of the kids were dressed-up as well. I joked with the teacher that, if she plans to have me demo every year I'll have to make a colonial costume (this was my second time demonstrating for colonial days). There were 40 kids gathered around, including a friend of Brendan's from Sunday School (a nice surprise), & they were great. Attentive, with a lot of questions & also kind to the samples that I passed around for them to see & feel up close. After about 50 mintues I packed it all up, zoomed home, changed clothes & wolfed down a piece of pizza, & 15 minutes later Tomoko was at the door (!).

We hopped in my car & drove to school (the roads had finally been cleared & the drive was almost pleasant...). Brendan greeted us by shouting Tomoko's name & then excitedly introducing her to everyone in sight :) Paula, our friend & director of the school, kindly let us have our lesson in her office while she worked (space is at a premium & so people get used to sharing). We played some games to help us to remember adjectives & then it was time to show Tomoko around school. When we left school we took Brendan with us, & when we got home we hugged Tomoko goodbye & wished her well with her interviews. Brendan & I went in & had snack & then I collapsed on the sofa while he played Adventure Quest &, after his timer went off, he went upstairs to play. I was pretty exhausted but managed to put some dinner together for us (Grammie was still too sick to come over) & then Charlie pretty much took over. We watched a couple of episodes of "Pee Wee's Playhouse" from the dvd set I'd given Charlie for Christmas before bed & Rachel Carson had Brendan asleep within 10 minutes :)

Charlie & Brendan had decided to make it an early morning on Saturday & go work on the snow fort some before breakfast (allowing me to sleep-in undisturbed- those angels!). The snow fort is a neighbourhood project- there is a small, triangular park in the middle of our road, where it splits into a "Y", & the snow plows deposit snow at the tip of the "Y" that makes a very good base for digging & tunneling. Brendan & the other neighbourhood boys of around the same age discovered this a couple of winters ago, but last winter there wasn't any snow to speak of, causing great disappointment. So this winter the snow fort has been a continuing group project, particularly since the snow keeps falling & filling-in the tunnels so they need to be re-made. My guys had wanted to get back out there because Brendan had a school friend coming over later in the morning & they wanted to have some of the tunnels re-started so it would be more fun to play in. They were out from about 7:00 to 8:30, then came back for breakfast just about the time I was up & getting ready to eat.

After getting home from the demo yesterday, I had set my wheel back up & got out the coulourful wool I'd found. When I weighed the wool I decided I probably had enough to make yarn for new mittens, which I really need. So after breakfast on Saturday I got to work. One of the things I really love about demos or teaching workshops is that they really spark me to get to work on my own projects. Last April I taught a shawl workshop for the knitting guild & I have produced probably 15-20 shawls since then... When I did that demo at Brendan's school a few weeks ago, after the llama visit, I realised how much I'd been missing spinning on the wheel, so I left it out in the living room where I could get at it more easily. The coloured wool spun beautifully with minimal pre-drafting & the colours were so beautiful as they slipped through my fingers. Here's the bobbin part-way filled, with some of the loose roving beside it:

Brendan's school buddy & his mom arrived around 10:30, so she & I chatted while Charlie & the boys took off for the snow fort. It was a nice opportunity for his mom & me to catch up. Both our boys have been at Cobblestone since first grade, although not always in the same class. They both have AS & so we, as families, have a lot in common, plus we live within a mile of each other! However, it's never been an easy thing to get these guys together, since their "strong" interests have never really dovetailed & this has prevented them from having much to say to each other over the years. Brendan had actually figured out that this kid also had AS & it's been a comfort to him, I think, knowing there's another kid in his class that is dealing with similar things. They both had lead roles int he class play, so Charlie thought it would be fun to get them together to play, then go to a community theatre production of "Oliver!" in the afternoon. So, after a lunch of ramen (something both boys really love these days), they all went off to the play & I stayed home & went to bed for a few hours, still feeling pretty under the weather.

Charlie & Brendan came home with mixed reviews of the play- both Brendan & his friend had been appalled by the treatment of the orphans in the play, so they hadn't gotten caught-up in the fun or the music as much as other kids might have. Charlie thought it was a great performance, with lots of really good local talent. (Brendan's opinion has mellowed over the past couple of days, actually, as he remembers particularly fun scenes & songs.) After a snack, Brendan really wanted to go back to the snow fort, so Charlie ordered pizza for dinner, left the money by the door for me to pay the delivery person, then they went back out. I happily spun my pretty wool & popped a "Fruits Basket" dvd in the laptop, japanese with no subtitles, to see how much I could get by ear... The pizza finally arrived & I thought the guys should have seen the delivery car, but they didn't come in. I waited by the front window, wondering if I should go out, when I finally say them walking up the sidewalk. When they came in, Brendan was crying... He'd had a nasty scare. He went feet-first into one of the tunnels, but for some reason (we suspect motor-planning stuff) he bent his knees rather than going straight in & got really stuck. Charlie had to get help from a neighbour to dig him out & he was stuck for about 10 minutes. Poor kid! He kept saying that he thought he was going to die, & had me in tears when he said he was afraid he'd die before he saw Rufus again... We assured him that this was the reason he never goes alone to the snow fort & that dad would never have allowed him to die... He was one huggy kid for the rest of the evening. Some more "Pee Wee" before bed finally got him smiling again.

Sunday morning was a blur... I didn't really want to go to church -I'd started coughing overnight & felt kind of rotten- but both of my Sunday School class kids were going to be there & Charlie had a meeting after church, so I would have to bring Brendan home. And there was choir practise & we were singing a neat song (the South African national anthem, in Zulu!), so I got myself together & held it together through church, lunchtime, & early afternoon until Charlie came home. Brendan had a good time in Sunday School & was happily plugged into AQ after lunch, so it wasn't hard to do. I got to sleep some more in the afternoon & felt well enough after dinner to ply the bobbin of colourful wool (it all fit on one bobbin) & skein & wash it. Here's the finished skein:

Whee! Mittens ho!

And a good start to break week... We got a lazy start this morning & plan to re-watch the 4th InuYasha movie this afternoon. Tomorrow Brendan gets to spend the afternoon with his best friend (& I get to visit with his mom :). Wednesday Charlie's home & Cherie, Brendan's consultant teacher, is coming over to stay with Brendan in the afternoon while we parental units go to see Brendan's psychologist, so he's really psyched about that. It's shaping up for a good balance of activities & relaxation!

Labels: , , ,

Thursday, February 15, 2007

Rufus resting...

Anyone who's been following my blog for a while will know that Rufus is Brendan's super-best-buddy/transitional object. I blogged about Rufus back on February 9th, 2006 (the new blogger won't let me link to the post right now, though :( ) & explained the huge role he has had in our family's life since he arrived Christmas 2004. He even had an important role in Brendan's birthday party last April, & was featured on the thank-you cards we made post-party :)

Brendan carried Rufe to school every day for about a year & a half, from February of 3rd grade & all through 4th, & having Rufus there really helped Brendan manage throughout the schoolday. He helped Brendan make friends, too, since the other kids were often intrigued by him, & Brendan was always happy to speak up (in Rufus' voice, sometimes) when they asked about him. Rufus had a role in the 3rd grade play (he played a chicken, wrapped in a feather boa- how many parents have been asked to find a chicken costume for a plush naked mole rat, I wonder?) & also did a solo during the all-school concert that same year, singing the first verse of "Gary Indiana" (Brendan did an amazing job of hitting all the right notes in Rufus' funny, mole rat voice). Rufus was also Watson to Brendan's Holmes for Halloween 2 years ago, with a knitted vest that matched Brendan's caped coat...

When Brendan moved up to the "big kids' floor" this year, & into 5th grade, we all (including Brendan) came to the conclusion that Rufus should stay home from school. It was partly because of the "big kid" thing & partly because Rufus was starting to show the wear & tear of life with Brendan. I have been called upon for emergency mole rat sutures on more than one occasion, causing great anguish for Brendan, & poor Rufe has some permanent stains from everything from being mouthed by a distressed boy to being used as an impromptu football... At first it was hard for Brendan to remember to take Rufe out from his right armpit & find a safe place for him at home. Sometimes he was behind a sofa pillow, sometimes (disconcertingly) under the sofa cushion I usually sit on as I work on the laptop. These days we've been tucking him into Brendan's bed after Brendan gets dressed, surrounded by friends...

It's bittersweet, having Rufus less involved in our lives. I can't tell how many times he's saved us during meltdowns by doing something silly or endearing & distracting Brendan from his misery. Brendan told me recently that Rufus doesn't help as much as he used to, when things get out of hand, but I think that this is as much a part of Brendan growing-up as Rufus spending less time in his armpit. He still gets out & about- yesterday's snow day had Rufus back in his usual place for the day, & he was hugged mightily at bedtime when OCD distress was giving Brendan a great deal of pain. But it is bittersweet... I miss having Rufus' manic, goofy smile peeking from under Brendan's arm. I miss Brendan talking in Rufus' voice to cheer us up. Happily, though, Rufus is safe & warm & gets a lot of sleep these days (we imagine him as being a night owl now :).

And for anyone wondering what things look like at our house, with all the new snow:


Wednesday, February 14, 2007

A snowy Valentines Day...

This is yesterday's photo of the day... Brendan reading before school. The half-on, half-off the bed, feet in the air, holding a sword while reading took some talent, I think... :)

We were expecting a storm overnight &, lo! it materialised. Pretty shocking, actually. I've come to think of predicted storms as a sure sign that they'll pass us by. Brendan, of course, was ecstatic- not just a snow day, but one where there was actually snow falling. Last week's 2 days off were due to extreme cold & he couldn't go out to play. He made up for it today by going outside twice, once with the kids next door & once with Charlie after he came home from workng this morning.

Our morning was spent playing Adventure Quest in 2, 45 minute sessions (Brendan) & making new placemats for me & Charlie (me with Brendan's assistance during AQ breaks). I needed a new placemat because I had a cocoa disaster yesterday that ruined not only my placemat, but 2 post-it note pads & Charlie's japanese notes (kept tucked under his placemat & used to bone up on his japanese during breakfast). The 8 oz. left in the cup of cocoa also hosed two walls of the kitchen, the table, floor, refridgerator, chairs, my clothes (including a sweater, mittens, & slippers), & my new swiss army pen (arrgh!) which I was able to rescue & clean off. The clean-up took quite some time, & was hindered by a swollen right knee... Needless to say, it was no fun. However, the destruction of my placemat did inspire me to finally replace both mine & Charlie's (I asked him if he wanted a new one, too). I'd made them both at the same time, back when Brendan was a toddler & they were both close to being tossed-out anyway. I went through a placemat-making phase back then (for us & for gifts), using my new ability to print photos out on our computer printer, & would collage the photos with pretty papers & stickers, then sandwich them between sticky sheets of plastic (the most difficult part of the process). This time Brendan could help out, too, & having just put away the valentine-making supplies, we were still in the mood to create :) Brendan picked out a photo of he & dad sailing for the base photo of Charlie's placemat. I used a piece of drawing paper as the base & we picked out nice pieces of scrap paper leftover from bookbinding projects to surround the photo. Then I turned Brendan lose with the stickers, the only request being that he not cover up any faces in his frenzy. He did a very tasteful job of placing fish around them in the water of the photo & skunks on the bridge in the background (plus a bunny- bunnies are a must for the placemats :). I chose some pictures of flowers & fall leaves taken over the past few years for mine, surrounded by pretty origami paper & my favourite stickers, for an all-seasons feeling. It was fun to have a project to do together on this unexpected day away from school...

Brendan also enjoyed valentine-making this year- I think partly because we collabourated on the ones for his teachers (to be given out tomorrow, I hope!) with me making origami trays filled with chockies & wrapped in lace & Brendan doing the tags. The cards he made for Grammie, Tomoko, & dad all featured foamie-hearts piled up like snowmen on the front of folded-over cardstock, with wiggle-eyes of various sizes stuck on the hearts & a hand-written message inside. Very original & well-received :) I made Brendan one with a rabbit made of foamie-hearts & a couple for Charlie, too (no rabbits). We gave each other chockies, too, of course :)

We hand-delivered Grammie's valentines & gift (& birthday gifts, too) yesterday after school. Grammie has had bronchitis & wasn't up to celebrating her birthday with us on Monday, & with a snow storm on the way I wanted to make sure she got not only prezzies but the food (birthday cake & rice pudding- our favourite comfort food) we had for her. Grammie lives about 15 minutes away but we don't visit there terribly often, mostly because she has 3 cats & I'm allergic :( She does come over for dinner most every Friday, though, which allows us to keep up to date with her. Brendan enjoys trying to play with the cats at Grammie's (they are never quite so enthusiastic) so he was very focused on that, while she opened presents & cards (she intercepted him to ooh & ahh over his handmade birthday & valentines cards with him :). It was just nice to bring her a ray of sunshine, since being sick & stuck at home is nobody's idea of fun.

Brendan has had a couple of difficult school days, trying to find the old (or a new) school routine, post-play. As he himself told me, "If it's too structured, mom, I don't like it... & if there's not enough structure I don't like it either!" The timing for getting back into a routine is not optimum either, since next week is Winter Break week. Somehow, missing a day or 2 of school this week (who knows what tomorrow will bring...) doesn't seem to matter very much, especially with him getting more & more interested in spending time reading a book, instead of just playing computer games. Getting ready for next week will take some planning, to make sure we actually do something, but we've got a book to write (we've already picked-up where the beginning, written for Charlie's birthday, left off), a woven scarf to finish, japanese to bone-up on, & there's plenty of snow to play in :)

Labels: , ,

Sunday, February 11, 2007

A Ghastly experience... :)

Here he is... Dr. Ghastly himself :) The class play was yesterday & Brendan did his usual amazing job.

First of all- he never gets nervous going into a play. His enjoyment of acting is utterly pure & he focuses on the job at hand & the fun to be had. His most memorable line (" was one right, big chicken...), quoted back to us by person after person after the play, turned out to have been ad-libbed... His role was that of a mad scientist who accidentally creates a 10-foot "right big chicken" which goes on a rampage & eats a couple of people, who are attending a party at "Ghastly Manor" (& coughs one back up, to much hilarity). Everything gets sorted out at the end & a timely antidote shrinks the never-actually-seen (but heard- Brendan did the chicken noises, too) chicken back to a baby chick. All of the kids did their best & were fun to watch, but Brendan practically chewed the scenery in his enthusiasm &, as one parent noted, lit the stage up every time he charged on to it. :)

It was amazing to observe it all, on many levels... First, there was watching my totally calm kid (he wasn't even wired pre-show) go into action. Then there was his putting up with having his hair gelled twice (it's so thick it just went back to normal) for the role, something which he wouldn't usually tolerate, for smell & texture reasons. Then there was the teamwork- my kid, who normally doesn't pay much attention to what the other kids around him are doing, focusing on others for his cues, helping them when lines didn't come... Of course, there was the utter joy with which he inhabited the part. And then there was basking in the glow afterwards, the nice things said about our kid, his happy face, his proud teachers...

What struck me the most was how fluidly Brendan moved through the day. From breakfast, to japanese lesson in the morning, to lunch, to getting ready for the play there was rarely a tic or sign of distress. For once he was living ever so slightly in the future, my very in-the-present kid, focused on the play to come with happy anticipation. It was a rare joy. A time for him to shine- & he did!

Labels: ,

Wednesday, February 07, 2007

Birthday musings...

Yesterday was Charlie's birthday & the photo above is one of his presents :) We moved into this house 13 1/2 years ago & he has wanted curtains in the dining room since then... There were curtains that came with the house, but they weren't very nice & we took them down soon after we moved in (I think I have since used them to strain plant dye liquid- waste not, want not...). It's a western exposure & I have loved the light coming through these windows in the afternoons for all these years, but Charlie has felt that, with the neighbour's house just yards from those same windows (this is the city...), it would be nice to have some privacy. For quite a few years he waited patiently for me to weave curtains for the windows, the extended wait being due to my deciding to hand-spin the cotton for the curtains' weft... on handspindles, of course (rather than the faster method of using a wheel). I even drew up the weaving draft for the curtains, so I could calculate the amount of thread I needed to spin. But as I got closer to finishing the spinningn part of the project & it became more real, I started thinking about how curtains would affect the light coming from the windows. Over the past few months I decided to scrap the curtains (& weave a whole mess of dishtowels someday from the handspun cotton instead) in favour of ...something ...not requiring new hardware to be installed into the 80-year-old gumwood, or covering up that very same gumwood, & that would let light in & yet give us privacy. Charlie was agreable with just about anything that would give us privacy. Last fall I found myself wrestling with trying to hang a beautiful piece of handmade paper in my 3rd-floor sewing room window & hit upon a system that has worked beautifully. Just a few weeks ago I was messing about with handmade mulberry paper & happened to hold it up to the dining room windows... & the solution was obvious. I gathered everything I would need (mulberry paper, paper cutter, cardstock for a template, double-stick squares) & decided to surprise Charlie on his birthday with the new "window treatment". He really likes it, especially now that he's seen it in the daytime as well as evening, with the sunlight making the coloured papers glow. I find that the room seems warmer & is more interesting visually, but in a subtle way. Either way... I finally did it!

The window project was interspersed with activities with Brendan, as he was off again on Tuesday due to the weather being so cold. We mainly worked our butts off on the story Brendan was writing (with dabs of help from me, plus me typing it) for dad's birthday & we finished a whole chapter more than we'd have done if he was at school. We also went through & "illustrated" the story by changing fonts for certain words, to emphasise them. It's really striking & was a lot of fun to do. The whole process was very intense & makes me look forward to having voice-recognition software so that he can do more without needing me to type it all. We ended-up with 15 pages of text, which I put in a portfolio with a clear cover & had Brendan sign before wrapping it. Charlie really liked it & read it out loud to us off & on throughout the evening & before bedtime. Brendan & I kept getting the giggles anticipating the funny bits- there's a lot of noses getting swelled & shrunk & bitten by supposedly inanimate objects (the story is about wizards at school, sort of HP but using Adventure Quest characters & Brendan's fertile imagination). One of the characters is blind & also, after providing loads of information at one point, mentions that his mom refers to his mode of giving such information as "listing"- definitely an aspie :) It is really interesting to see the things that Brendan finds interesting & important enough to incorporate into his storytelling.

While I worked on the windows Brendan played Adventure Quest, which has been pretty easy to cope with for the past few weeks now... but he did hit a wall yesterday & had a spectacular meltdown after things didn't go the way he wanted them to. I was taken by surprise & for a while wasn't sure how to help him move to a better place, emotionally. I finally settled on a combination of hovering/comforting & leaving him alone but staying close by in case he needed me, & he was able to accept the offer of a snack & movie after about 15 minutes of crying, raging frustration. We watched the 3rd InuYasha movie again, which is our favourite & that took up practically up to dinner time. Charlie came home & we had dinner, birthday cake, & present-opening. By bedtime we realised that Brendan's sniffles during the day had become a full-blown cold/virus of some sort. I really hoped it wasn't anything serious because not only had he been off school for 2 days, but the class play is this Saturday & he needs to be in school to rehearse.

I woke up about 3:00 this morning to hear voices from Brendan's room. He'd woken up because of his runny nose & sneezing & couldn't get back to sleep, so Charlie gave him some sudafed & tylenol & let him read for a while, to see if he could fall asleep again. I fell back to sleep & found out much later that Charlie had gone back in around 4:00 & stayed with him for nearly an hour until he fell asleep... The first thing I did when I went in to get him for school was check for a fever, but he felt fine, so we got up & at 'em. School was open & Brendan actually seemed glad to be going back. We decided we'd pick him up after lunch, since the rest of the afternoon would be phys. ed. & he didn't need to be running around with a cold, but when Charlie came home from taking him to school he said that that Brendan's class was spending the day at the theatre where the play will be, so phys. ed. was cancelled & Brendan had begged Charlie not to pick him up early (perhaps a first in his school career :).

Before Brendan & Charlie left for school they gave me birthday cards because today was my day- 49 years old :) Brendan had picked one out that had lots of rabbits & the punch line had to do with "grey hares" proliferating, tee hee. I asked him how he understood the significance of the "grey hares" thing (not something I was particularly aware of as a 10-year-old) & he told me that he must be a "sophisticated 10-year-old". I laughed & responded that this may be true, but sometimes he acted like a "sophisticated 2-year-old", which made him fall on the floor in mock surprise, giggling.

Charlie had the whole day off (he works half the day approx. 2 or more Wednesdays a month) & so we did a couple errands & went out for japanese for lunch. It was still too cold to be out for very long. He & Brendan stopped at the library on the way home from school & got a few movies, including "Duck Soup" & "Arsenic & Old Lace", which they had watched part of at school as a preparation for working on the class play. After we had a snack & I opened my birthday prezzies (Brendan gave me a box of fudge- yum!- & one present from Charlie was a swiss army pen- with a light, nail file & even scissors! It's something I've wanted for years but never thought to get for myself :). Then they watched "Arsenic & Old Lace", which was a good thing because Brendan was kind of hyper from his exciting day at school, lack of sleep. I drifted in & out of the tv room, sometimes watching & knitting & sometimes doing chores. Carey Grant is a hoot in that film, but the crazy hoodlum brother spooked me, so I left them to the movie & worked on coming up with valentine present ideas for Brendan's teachers. I settled-on making little origami baskets to hold chocolates (to be purchased tomorrow, I hope). Brendan can help me with the tags & putting it all together.

He held it together pretty well during dinner, but the day really started to catch up with him afterward, so he convinced dad to forego bathtime & he hopped into bed about an hour early & was asleep in about 5 minutes. Charlie has informed me that he won't be up late either, since he was up quite a bit last night, too. We chatted for a bit before he went up to bed & he had me laughing so hard I was crying, describing the brief bit of play rehearsal he'd seen this afternoon. It is going to be a hoot, whether or not they intend it ot be :)

This morning while we were doing errands I mentioned to Charlie that I think we need to get an appointment for us to see Brendan's psychologist again soon. I was reading an excellent post by Zilari that really helped me understand why I've been butting heads so much with Brendan lately. In her post, Zilari talks about her childhood difficulties with spoken communication & the expectations put upon her for communication, & also the assumptions made about her by the adults in her life because of her variable communication skills. While reading this post I had the odd experience of not only seeing myself in those with the unreasonable expectations, but also seeing myself as the child of whom too much was being expected... it was very unsettling & made me feel as though a new layer of "gunk" had been uncovered from my past. I have often found that where my past, abuse-realted stuff intesects with the present, I often have blind spots where I can't figure out how to cope well. I have spent a lot of my adult life recovering from the childhood abuse & intentionally learning new, healthier ways of thinking & behaving. I have spent a lot of time really looking at how parents behave with their children in order to be find other ways of behaving than the ones that were modeled for me by my parents. With Charlie's help I think I've put together a lot of positive ways to respond to Brendan, but Zilari's post has made me realise that I've found an new area of interaction with Brendan where I don't have any good models to follow. So, I plan to call Dr. M tomorrow to get an appointment so I can get some ideas from him. And, I'll bring it up next week when I see my therapist, since I don't need to have my "stuff" interfering with my relationship with my kid. No way...

Onward, then, into my 50th year... :) (hooray!)

Monday, February 05, 2007

Snow day=happy kid!

:) I was just about to get up & to the business of hauling Brendan out of bed this morning when the phone rang... I knew exactly what it meant, too. Charlie listens to the radio on his brief ride to work in the morning & so he gets the first news about school closings. He greeted me with, "You'll have one happy boy today!" :) I wished him a good day & tiptoed into Brendan's room to turn off the alarm, on the odd chance he was still asleep, & as I left a voice came from out of the covers- "Today's a free day."
Huh? "How'd you know that?"
"You told me last night."
"Honey, dad just called with the news, so there's no way I could have told you last night..." Honestly, I think the kid must be psychic.

The beauty of it all is that it's a snow day without snow :) I looked at the weather map online & Upstate NY is purple, something you rarely see. It's about 4 degrees above zero right now, but the wind chill is suppsed to be -20 or less today, hence the school closings. I don't think Brendan has had a snow day in 2 or 3 years (even some of the teachers at his school have been hoping for one this year, just to shake things up :). It's actually a gorgeous day, although no way is he going outside... He & Charlie were out for about an hour on Saturday & that was all they could handle in 15-degree weather.

Saturday just whizzed by- Charlie was out of the office, so he & Brendan were able to play both outside & inside Saturday morning. I was very excited because the radio show that I was interviewed for finally aired, after having been bumped from the schedule last Saturday. I was kind of nervous, not having heard the finished show, but I just knew if would be well done. I went to tape the show for Charlie to listen to later, on our 11-year-old boom box (purchased specifically to take to the hospital so I could have music in the birthing centre while having Brendan). It had worked just fine when I taped the show that was aired in place of mine... but when I pushed "record" this time, tape spewed out of the cassette. I fumbled with the spindle that controls uptake & it came sproinging out in my hand. Arrgh!!! Thirty seconds or so before the show began & sprinted downstairs to our even-more-ancient tape deck/receiver, but couldn't figure out how to switch bands from fm to am... I gave it up & got back upstairs to find I'd just missed the intro, & settled-in to listen. It was wonderful. I was alternately laughing & crying as I heard my own words come out of the boom box. My friend, Santosha, who had interviewed me & then edited the show (paring 1 1/2 hours of conversation down to 20 minutes!) did a great job of bringing out the points I'd really wanted to make- that it's possible to be a happy autism family. The show will be up as a poscast- someday. The person responsible for posting the podcasts hasn't been keeping up with it (I am trying to decide whether or not I should send some friendly harrassment his way :), so I will post the link as soon as it happens. After listening to the show I emailed Santosha to tell her how much I loved it & that I feel as though my voice has just gotten bigger :) When I told her about the taping disaster (yesterday, at church, after giving her a big hug) she promised to get a cd of the show for Charlie to hear.

The rest of Saturday sped by... Brendan & I took my laptop up to the third floor sewing/studio space & worked more on the story we're writing for dad's birthday. We came down an hour or so later in fits of giggles, which I'm sure made Charlie look forward to it even more- but he has to wait till tomorrow! (his birthday :) We had arranged for our goddaughter to sit for Brendan while we had dinner at a friend's house, but she called in sick, so I quickly called grammie &, behold!, she was free to come over. She & Brendan have a great time together, so it was pretty much a win-win situation. We had a lovely time over dinner & while we were there it snowed 3 inches!! We left just after it stopped & the world was beautiful...

We had planned to stay for lunch at church yesterday, particularly since Brendan had had a good time in Sunday School (they learned about Thich Nhat Hanh- he has been very interested in learning about peacemakers lately, like Gandhi & MLK, Jr.) but the crowd in the lounge really spooked him, so he proposed that we go to an asian restaurant instead, insisting that we wouldn't have to wait as long for our food there as we would in the lunch line at church... :) We fell for it anyway & piled out into the cold for a lovely lunch together. Back home, I sacked-out on the sofa for about an hour (choir practise really takes it out of me these days...) & then we got together for another family activity. Brendan & I had promised Cherie, his consultant teacher, that we would record some more sound effects for the class play, since she was going absolutely nuts trying to find them on cds & the internet. So, we had to record a key turning in a lock, the wind blowing, a body being dragged across the floor (!), extended giant chicken squawking, & a fog horn. We fired-up Quick Voice on my laptop again & got to work. The lock was a cinch (we have an old-fashioned front door) & Charlie was voted best wind-reproducer. Then we loaded a cardboard box with stuff & dragged it over the carpet, after discussing whether an extended drag or a series of short drags sounded better (series of short won). Brendan provided the giant chicken squawks (of course) & did a pretty good fog horn as well. I burned them all on cd & so, hopefully, Cherie will have all she needs... It was an awful lot of fun to work on together & think we have a collective future as Foley artists :)

Brendan got ticcier & ticcier as the evening wore on, & I was pretty tired, too, but Charlie was up to the task of distracting him & all potential meltdowns were avoided (hooray!). Brendan had finished on his own the Droon book I'd been reading to him at bedtime (the whole point of getting the book was for him to read it, so I was pleased) so after dinner I went on a hunt for the next book to read. I really wanted something not terribly exciting, since the exciting ones don't put him to sleep. Charlie suggested Rachel Carson's "The Sea Around Us", so we started it last night. It is perfect- just interesting enough that he doesn't protest, but not so exciting that it keeps him up. He was asleep within 10 minutes.

So- today, we have plenty to do on this "snow day". A card to make for dad, a story to work on, birthday card for Grammie (this weekend), interspersed with AQ... I'm looking forward to a fun day :)

Friday, February 02, 2007

Response to some thoughtful questions...

It's been a busy couple of days. I received a very thoughtful response to my last post, so I thought I'd respond to some of their thoughts (the response was anonymous, so I don't have a name to attatch to it) in this post, as well as share the latest here in the New Republic...

Anonymous wrote:
"I love to read your blog, and try to make time for it at least every other day. This particular one speaks volumes to me, as a special educator. I am left a little perplexed at some of the issues you guys are having to deal with. I thought the other day, when the box went to school, that this might cause problems. Certainly, your son is an enviornment that I am not used to teaching in. But his disablility and some of the things you describe him going through aren't unknown to me or my classroom. I could envision the box being a negative thing because of these very reasons you've talked about. On the other hand, you bring to light a very good way of looking at it, with the whole "invisible disability" thing. That makes a lot of sense to me, and I am also left wondering which it is, based on the information you have given. I think that his teachers have been way more accommodating with having a big box like that brought in and new rules to establish than most teachers I interact would have been. It is totally uncalled for when another professional enters the situation and second guesses what the first professional has decided, in front of the child and by doing it in a way that causes this big of a deal. She could have just gone away or interacted with him in a different than planned way instead of trying to "make" him come out of the box when he thought he was ok in it. Later, she could have addressed her concerns. So, I'll have to give it to the classroom teacher for not becoming very ill with her. "

We are very fortunate to have found an alternative school that believes strongly in individualised education for all of the kids, & is great about including kids with IEPs in as much of the programme as possible. This is about the only school environment that we can imagine Brendan in, since his needs are pretty specific & changeable. His teachers are very accomodating & I must confess that I sometimes wonder when we'll reach their breaking point, but so far so good :) Our involvement, in lots of different ways, at school has helped keep the good will flowing, too. The main problem last Tuesday, as I see it, was that the therapist who came in to work with Brendan wasn't aware of the new box rules, so didn't realise that Brendan felt that he was "supposed" to be in the box then... &, of course, as I mentioned in that post, the whole idea of establishing times when he could & couldn't be in it was counter-productive to the purpose of the box as safe space. As of Wednesday, the box has been re-establised as a place for him only when he's feeling overwhelmed or unsafe, & he has a card in the box to show anyone who wants him to leave it (if he doesn't want to at the moment) that has statements explaining why he's in there. My understanding is that he's hardly needed it at all these past couple of days, which is great. What we often find is that, once he has a safe place to retreat to, Brendan usually doesn't actually have to use it.

Anonymous wrote:
"This is my problem with the box. Will he have this box as a "safe place" every where he goes? What happens when all the other children in the classroom decide they need boxes for whatever reason? What happens in case of an emergency when he won't come out? As a teacher, this would be my thoughts on having a box brought in and used as a safe place. So those are things that you might want to consider when thinking of "safe" alternatives. On the other hand, which is the whole point of my post, you have left lots of thought provoking things running through my mind. Have I ever discouraged something that would have been right for the child just because of an "invisible disablity" or how many behaviors could I have decreased by simply accepting an idea like this and incorporating it's use, but didn't just because I thought the student to be too brillant to be getting in a card board box?"

We are utilising the box as safe space for Brendan at this moment in his life because it's what he needs. I don't expect that he'll need it forever :) We've seen him move through various methods for keeping himself togetherover the years (having his beloved Rufus plushie with him all the time, keeping one of his little pokemon in his pocket..), so this feels like another method that he will use for a while & then move on. One of the biggest difficulties with his learning this year at school has been that he hasn't found anyplace where he feels safe. Last year, on a different floor, there was a great "cosy corner" in the special ed. resource room where he could go if he was feeling overwhelmed. His new floor this year, where the 5-8th graders are, doesn't have the space for such a place, so he's been very uncomfortable all year so far. When Brendan's stressed, he just can't settle down to school work, so until recently he's been taught one-on-one by his consultant teacher in a quiet place away from his class. His classroom teacher has been trying very hard to integrate Brendan into the class, & the institution of a daily schedule with incentives for spending blocks of time in the classroom plus the box have been working well to help him stay in the room. In terms of safety, there's no question in my mind that, in case of a fire, fire drill, or other emergency, Brendan would come out of the box & leave the school with his class. He's always very conscientious about this sort of thing, even though he doesn't like the fuss & confusion. In terms of the other kids, they are actually pretty blase about the box. Thanks to Brendan's self-advocacy the kids in his class never tease him about his sometimes odd or explosive behaviours, & my sense is that they are understanding his need for the box as just another Brendan thing, like his having OT & Speech. There are other special needs kids in his class, but none of them has the need for safe space that he does, so I don't see anybody else clamoring for a box :) I really resonate to your last statement- it's very difficult not to have overly high expectations with a kid with such uneven abilities as Brendan has. It can be discouraging, but I prefer to think of it as the way he is, especially as he does very well when we accomodate his needs.

Anonymous said:
"Then I think things like the kid coming out in the hallway when he was trying to get his things from his locker. My initial thoughts on this is to think that each boy has just as much right to be in the hallway as the other one does. And that one needs to be able to deal with the other being there some other way than by one not being allowed in the hallway. But then I think back to all the posts I've read and all the distress that is caused simply by not removing one of the children (whichever one) from the situation. And I think again, have I ever thought this before in a situation and caused way more damage than good? I can probably answer that question myself."

I have tried ever so hard to stay out of the interactions Brendan has with his tic-trigger people. There are just the 2 kids on the floor & I am friendly with both of them, but the one kid in particular makes it difficult, since he seems magnetised to Brendan when Brendan is having a difficult time. I suspect that it's the fireworks display that makes him so compelling :) But I also feel badly because this kid doesn't seem to get it that Brendan needs to be away from other people when this is happening. Sigh. You could say that this kid has just as much right to be in the hall, but is it really respectful to add to the distress of another person if there's a way to alleviate it? Bottom line is that, when Brendan is in OCD mode, he can't bring himself down & expecting him to do so is not helpful at all. I am very proud that Brendan is a good friend with this kid when he's not in distress & being triggered. I have never before asked him to leave Brendan be, but in this instance I just wanted to get my kid out of the building in one piece- meaning, without having head-banged a locker or a window on the way out, as he's done before.

Anonymous finished their comments with some very nice words about the blog & our parental involvement with Brendan & school, & I appreciate these very much, as well as the thoughtful comments above. It really did make me aware once again how fortunate we are to have such a great school for Brendan in our community (10 minutes from our house!).

Today was the first time I went to school to have a japanese lesson with Brendan. I had hit upon this idea last week when I tried to do some work on japanese with him last Friday when he was off school & it became apparent that he was in "home mode" & wanted nothing to do with anything schoolish. He agreed to try working on japanese at school, & so I arranged to go in on Fridays at 12:30, when the rest of his class is having Spanish (Brendan is exempt from Spanish this year because 1) due to some reorganisation they are repeating what he learned in 3rd grade & he was very frustrated by this, & 2) he's taking japanese). This morning, in the brief moments that I was at home (between taking him to school & a doctor's appointment for me) I put together some flashcards with adjectives & generated some sentences to plug them into, gathered some phrases from previous lessons with Tomoko that he's going to need when we go to Japan (like "let's play!" & "I have to ask my mom." :), & found the big card listing all the pokemon names in japanese (from a McDonald's in Japan, sent to Brendan by his penpal Seiji) so he could practise reading the katakana alphabet. I also packed a baggie of japanese candy. Brendan's class was still outside playing when I got to school & Brendan was all by himself, digging a hole in the big pile of snow pushed up by the plow at the edge of the parking lot. He was having a great time, but didn't drag his feet too much when it was time to go in. We had the special ed. room to ourselves, & 45 minutes until the next activity. I told Brendan that we had 3 things to accomplish & that we'd share some of the sweets after we'd done each one (he commented on the cleverness of my incentives :). I asked him which one he wanted to start with & he wanted to work on katakana, so started picking out pokemon from the card that were associated with different teams (on the show) & sounding out their names. The entire 45 minutes passed very quickly & he was focused & interested in the lessons, mentioning that he liked working on japanese at school. Success!

The next activity was supposed to be a rehearsal of a scene from the class play & Brendan was really looking forward to having me see it. With 1 1/2 weeks before the performace there had been a major change in roles & Brendan is now playing the lead character. It seems that the kid who was going to do it was getting really nervous about it & was really relieved when Brendan agreed to switch roles... Brendan already had most of the lines memorised (in previous years he's memorised all of the play so he can help with prompting) & is having a riot with the part- that of a mad scientist :) Unfortunately, just as they had set-up the scenery for the rehearsal, word got out that the 7-8th graders were going to perform their class play for the younger kids & it might be the only opportunity for his group to see their play as well, so the rest of his class opted to go see it.. He was pretty upset & Cherie (His consultant teacher) & I had just gotten him settled down with the promise of helping her do the sound-effects for a rehearsal of the other 5-6th grade class's play when they decided to go downstairs to watch the older kids as well. Brendan freaked. It was just a bit too much transition for him. Cherie & I stayed with him, acknowledging his distress & all the last-minute chaos. (I got a really nice, apologetic email from his classroom teacher, too.) We finally helped him calm down by talking about how we can help Cherie come up with a last few sound effects needed for their play (the sound of a key turning in a lock... a body being dragged across the floor... ?) by recording various things at home. He got interested in figuring it all out & we left school to go pick up some more blank cd's.

This afternoon we watched some InuYasha & Brendan played outside for quite a while. The snow persists nicely & maybe he & dad will be able to go sledding this weekend...