Wednesday, January 16, 2008

Conscious living...

Yesterday, while driving home from an afterschool visit to Starbucks (a weekly treat for Brendan & myself) I had to hit the breaks because a driver in front of me was doing something funky. Brendan commented that he wished the driver would practise conscious driving... we skipped a beat & then burst out laughing. Brendan, giggling madly, asked me why what he'd said was so funny, so I asked him what the opposite of "conscious" is. We both had taken the mental leap to the idea that the driver had been driving "unconsciously" (therefore, asleep). (In restrospect, I think he meant "conscientious".) So, we came up with the slogan:

Conscious driving: it's not just a good idea, it's the law!!

Being a conscious parent (most of the time) as well as driver, I have noticed that we seem to be achieving a sense of equilibrium in the new year, at least where it concerns Brendan's new, heightened level of anxiety. We've been tracking his anxiety using a "tic log" & I just began a new one yesterday (I've been making little books out of a stack of computer paper cut in half & bound with crochet thread :), which caused me to reflect a bit on how he's been doing. The homework re-organisation has gone very well, & we're all less anxious because we know what to expect. Monday night was math, which meant that it was Charlie's night to coach & Brendan & I didn't have to rush right into homework after we got home (from a quick visit to the pediatrician to look at a rash & then a longer visit to the grocery store to fill a prescription & our tummies with sushi while we waited :). Last night he had language arts homework- my area of expertise- so I scribed his spanish homework for him, which made him very happy (& kept the anxiety level very low).

The anxiety lately has taken the form of an increase in "fleas" interfering with everything from dressing to homework to what activities he can do (when not on the computer). Although he's not been specific, the clothing issues seem to change from day to day, & sometimes it's colour that's the problem & sometimes it's the order in which they've been placed in the drawer. Some mornings he continually puts things back in the drawer & hauls others out. Others he needs me to put the shirt over his head because the "flea" is preventing him from finishing the job. I have learned that challenging him at these times does not improve things or lessen the anxiety, so I do what seems necessary- or what he asks me to do. Any time he can be pro-active & tell me what he needs is great, in my opinion, even if he needs me to dress him. (Note: being a self-conscious preteen, he always gets his undies on unsupervised & in private!) One of the biggest cognitive leaps we've noticed in Brendan is his growing ability to analyse what's going on & tell us what he needs. I am going to encourage this behaviour where ever I see it! Another way that we've been encouraging him to be pro-active is when he needs to yell or scream... he's been pretty good about warning us. We've been discouraging long screaming episodes, since they hurt his throat, & problem-solving other ways to get the feelings out. He's been pretty good about telling us when's about to get loud (particularly appreciated when I'm setting the laptop down or carrying food...) so that we aren't startled... We've also been trying to be aware of how sensory strategies can help him- everything from burning incense or spraying lavender scent to deep pressure can help, if we can just remember to offer (or he to ask...).

The hardest line to walk with Brendan's anxiety is to know how much to accomodate it & how much to challenge it. What I'm learning is that sometimes we need to go with his flow, to keep the anxiety from increasing, to keep things moving (in the morning before school in particular). When his anxiety is lower, then we can revisit things, brainstorm alternatives, point out ways he can be pro-active, look for what's causing the anxiety... The risk is that he'll become anxious discussing these things, but he also responds well to being consulted & treated like the intelligent person that he is. An interesting fallout of recent dances with anxiety is that he's been able to go back to playing some computer games that were a bit too challenging & frustrating for him when he first got them last month. We made a deal with him that he could play them if he self-monitored for increased frustration, or if he would listen to us if we pointed out that he seemed to be getting upset. I had to do just that last night & I was so pleased when he realised what he was feeling & de-escalated things on his own. Whew!! Hooray!!!

Brendan & I are also in the early planning stages of a new & exciting project. I took my precious savings & bought a new macbook a few weeks ago, mainly because my nearly 3-year-old laptop's hard drive was maxxed-out & really slow, & with the help of a friend (thanks Lee!) got it all set up very quickly. This new laptop came with the newest version of Garageband, which means that Brendan & I can now create our own podcasts :) The idea hit me a couple of nights ago, in the shower (of course), & when I proposed it to Brendan yesterday morning he just lit up... because, as he puts it, his greatest talent is talking... :) We have another friend, Santosha, on board to help us figure out how to actually create podcasts (this is the friend who interviewed me a year ago for the UU radio show). Then I'll need to figure out how to get the podcasts on the internet... but anyway, we are on our way to creating a venue for Brendan to talk about himself & autism (& OCD, & Tourettes... :) and how he thinks & feels about lots of things. We are really psyched. He wants to read some of his stories & sing his parody songs, too (the latest is called "Lucy in the Sky with Daggers"...). I am pretty excited about finally finding a way to get my kid's own perspective onto the 'net. It'll probably take us a month or so to get it up & working, so stay tuned... :)

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Wednesday, January 09, 2008

Belated Happy New Year!

Wellllll.... I guess "blog bytes" didn't work as well as I'd hoped. There's no way of getting around being too busy to think, I guess, no matter how many tricks I try...

In retrospect, I think we did more than just survive the holidays, this year, which is a very good thing! We went into the season (beginning early in December with Hanukkah) knowing that there was a lot on our plates: mummers play at church, Brendan's annual holiday gift project, the usual preparations (wrapping, decorating, cooking), gifts for teachers, getting ready for New Years, spending time with friends & family, & a particularly busy patch with the minister search I'm involved in at church... and we did it all & had fun, too! We have evolved, over the years, ways to help minimise Brendan's anxiety at holiday time (for example, he gets to choose which big lego set he gets for Christmas) & it was particularly helpful this year because he had a precipitous rise in anxiety a couple of weeks before Christmas (not related to anything that anyone can identify). It was one of those (rare) occasions when his fears become so intense that he hurts himself & we wonder if we're going to be able to keep him safe. We had taken him off clonapin last October because he was doing so well, anxiety-wise, but we still had some in the house, & Brendan was sufficiently aware of himself that he agreed readily to take one when we suggested it might help, & it did help. He ended-up with just some broken capillaries in his eye (just...) & we were fortunate to be able to see his psychiatrist the next day. He suggested that we continue with the clonapin through the holidays, to take the edge off & help Brendan weather this new, higher level of anxiety, & then we could re-evaluate in January. I had started a "tic-log" at Brendan's psychologist's recommendation, since we'd noticed that anxiety-related tics had been getting more frequent, & we're hoping that we'll see some sort of pattern to guide us... The biggest concerns are whether this is a "blip" or a sign that Brendan's pre-adolescent body changes are making the medications work differently. Brendan & Charlie & I have discussed these possibilities a few times in the past few weeks, laying groundwork for any changes that we may need to make as he gets older. One of the most amazing things about where Brendan is at developmentally is that he can now tell us what's going on internally when he has severe anxiety, & identify what helps & what doesn't. He's made us aware that giving deep pressure can help when he's particularly anxious & has actually been requesting deep pressure (usually by pressing down firmly on his shoulders when he's standing or sitting) when he's feeling increased anxiety. It's made us aware that his sensory needs seem to be increasing as he gets older, so we've been talking to "the team" (psychologist, OT...) about what we can do. One night last week he seemed headed for meltdown again at bed time & Charlie hauled the foof chair (like a beanbag chair) into his room & plopped it on him, which not only made him laugh (the thing is really big... like his old ball blanket on steroids :) but relaxed him almost immediately. (We took it off after he fell asleep...) We really are in a new phase- Brendan as an individual & us as a family. He's even more a member of his team, & we are deeply glad to have his insights into himself to guide us.

Highlights of the holidays:

The mummers play at church- although the main rehearsal was cancelled due to a snow storm- went very well. Brendan played a shooting star :) He was wonderful. He managed to make the shooting star funny & touching without saying a word.

His holiday gift project (which I talk about in this post in Jedi Workshop ) was a big hit with his recipients & with him. He made his own style of "omamori", which are Japanese-style good-luck charms. Brendan chose the beads & made them almost entirely himself. He found the activity calming & satisfying. He would sit with the finished "omamori" in his hand, thinking good thoughts about who it was intended for, & it really grounded him.

Christmas was a lot of fun. Brendan prepared Rufus' stocking on Christmas Eve & had a great time sharing it with Rufe the next morning :) He thoughtfully put a banana, an orange, & some grapes into it (good for mole rats :) We had our annual Christmas tea & happily depended on others to bring or provide (a few of Charlie's patients always give us cookies) a lot of the food. We had a fun cookie-baking day right after Brendan was out of school & invited our friend, Alden (music director at our church & college student), to bake with us, so we did have some of the necessary traditional family delicacies on hand. There were 10 of us for tea, although Brendan did his usual parallel-play version, happily roaring around in the kitchen with his Christmas lego (its 1000-plus pieces already put-together by our lego-maniac) while we had tea in the next room.

The picture at the top is of this year's "osechi ryouri" which is New Year's Food, Japanese-style. We celebrated Japanese New Year last year, too, so we upped the ante by cooking more food & actually filling all 3 layers of the "jubako" box (unlike last year, where we only were able to fill 2...). Our first Japanese teacher, Tomoko, who is now in graduate school in Minnesota, was here for the holidays & mentored me through the cooking process as she did last year. Her mom, Nobukosan, whom we stayed with for a week last summer during our visit to Japan, sent us a box of the important things you can only get in Japan :) We called her by internet phone on New Year's Eve, too (it was already tomorrow for her), which was so exciting that most of my Japanese went right out of my head & I could only keep repeating "akemashite omedetou!" (Happy New Year!). Brendan did much better, speaking in full sentences, much to everyone's delight (& my envy...). I had such a great time cooking & chatting with Tomoko- it felt like I was absorbing her presence as much as I could because I've missed her so much! We have been so lucky to find a wonderful teacher to take over for Tomoko, Shizuka, & it was great fun to share the New Year's celebration with she & her husband, too. Grammie joined us as well & we played all sorts of games after eating the "osechi", "ozoni" (traditional soup), & obligatory "mochi" (sticky rice paste). Brendan enjoyed the games & friends, but decided that his "osechi" this year would be ramen... :)

So... now we're navigating post-holiday, back-to-school, back to regular life. Brendan's anxiety has risen again & we're presently sorting out how to help him manage increased homework demands which are making home life rather miserable these days. He's stuck between feeling like he has to do it (what will people think if he can't? what does that mean about him?) & needing the downtime at home to recover from just being at school. We've been taking the tack of reminding him that his needs as a person on the spectrum don't necessarily change just because the demands of school are changing, & then repeating this message clearly at school. Sigh. We are lucky to have a gem of a school for Brendan, but things do fall between the cracks sometimes... It's clear that Brendan is struggling with wanting to be independent & yet needing our help & input still. We are trying to figure out how to help him without taking away his independence- this is no doubt the tip of the iceberg when it comes to dealing with the adolescent Brendan that is appearing before our eyes. I am caught between amazement & awe at the person I see unfolding before me, & utter frustration as half or more of what I say to him is misunderstood... We both decided yesterday that we're not easy people to live with & are not sure how dad/Charlie manages to live with us. Probably because he loves us :)

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