MedWorm.com provides a medical RSS filtering service. Over 5000 RSS medical sources are combined and output via different filters. This feed contains the latest items from the 'Life in the New Republic' source. Sat, 16 Aug 2008 14:44:34 +0100 http://lisa-jedi.blogspot.com/2008/05/thoth-returns.html Today was Ancient Egypt day for Brendan's class- the culmination of all of their research & creative efforts. They presented their work by inviting the rest of the school to a "wax museum" of gods & goddesses (all of them dressed-up, wearing the masks they'd made). They all had drawn buttons to push for info on paper, then sat in costume beside their statues, ready to talk to anyone who pushed their button about their god or goddess. At some mutually-agreed-upon time, the groups of kids decided to take off their masks & represent regular ancient Egyptians, & were ready to talk about their every-day lives as well. So, here's Brendan as Thoth & as a regular, ancient Egyptian scribe. And Brendan posing with his Thoth statue.I left before the presentations (stayed to help Brendan get costumed-up & take a bunch of pictures of the kids :), so I can't wait to hear how it went!! (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1478037 Thu, 29 May 2008 16:49:00 +0100 1478037 http://lisa-jedi.blogspot.com/2008/05/meet-thoth.html For the past few weeks Brendan's class at school has been studying ancient Egypt. They've been working in groups to make model pyramids, learning about what is believed to be the everyday life of ancient Egyptians, & also were asked to choose a god or goddess to do a research project on (he chose Thoth, the god of wisdom, scribes, & magic). Brendan has enjoyed this unit & was able to bring some resources from home for his research- one of my cousins married a man from Egypt & has sent Brendan books on Egypt & also pictures of her family in front of the pyramids- pretty cool! A couple of weekends ago Brendan found himself challenged by the homework, though... well, the fact that they had homework over the weekend (not a usual phenomenon :) was the first challenge to wrap his head around. He has very specific ideas of when & where homework should occur, & we are generally supportive of these ideas, since he needs his down-time at home very much. This is the first year since homework became part of life (in 3rd grade) that he (now in 6th grade) has been able to cope with consistently doing homework- big sigh of relief! So Brendan met the weekend homework assignment with mixed feelings, particularly since it was a craft project... Brendan is one of the many on the spectrum who really dislikes getting his hands messy or gooey. His fine-motor co-ordination has come along very nicely & although he doesn't much like cutting with scissors or glueing things together, he will do it if someone sticks by him. I was really proud & amazed when he went along with the mask-making project at school- using plaster of paris strips on a form to make a mask of his chosen Egyptian god. He had drawn & cut out facial features, & then worked with a couple of his teachers to do the messy parts. I was there when they did it & watched him do it! He was just about maxxed-out by the gooiness of the plaster by the time he finished, & ran straight for the sink to rinse his hands afterward, but he did it :) The painting of the dry mask went better & he happily told me about the cool colours he choose for it after school one day. Again, hooray! The weekend project was to make a statue, at least 12 inches high, of their chosen god. Brendan's first reaction was to opt out. It was an option, since his teachers are very reasonable about not pushing him too hard when it comes to homework (or allowing him to do it at school, rather than at home). Charlie told Brendan that he thought it could be fun & why don't they try doing it together? Brendan cautiously agreed... And so began an interesting weekend for all of us :) They discussed options & decided to do a mixed-media project. They found a mailing tube that was already more than 12" tall, & then Charlie discovered that an old medicine bottle fit perfectly into the top... which led them to decided to make "Thoth as Pez dispenser :) They decided to make the head from sculpey, so I gave them total access to my sculpey stash, plus made them look at the Klutz sculpey book before going ahead. This helped them decide to make a tin foil armature first, since it would make the head lighter. They used a straightened-out paper clip for the beak (Thoth has the head of an ibis). Charlie cut a circle out of waxed paper the same size as the top of the bottle to use as a template, so it would be the right size. They worked for over an hour on the sculpture, & then drilled holes in the lid & bottle (to wire the top in so it could be flipped off like a Pez dispenser) while it baked. I really enjoyed watching them work on it together, heads bent over various bits & pieces, discussion of how to fit things together, how best to smooth the sculpey, what colour to make the eyes :) By the end of day 1, the head was made & epoxyed to the lid & Brendan had discovered that he likes the feeling of working with sculpey. Hooray!On day 2 it was my turn to get involved, since we needed to dress Thoth in the latest ancient Egyptian style. I brought down odds & ends of fabric & Brendan & I looked a pictures to decide how he wanted it to look. I draped & he critiqued, & finally we finished it off with a ribbon belt & a torque made from a string of glass beads Brendan had made. He was really pleased. So were we... on many levels. First, he hadn't opted out of a challenging assignment. Then... he had fun doing it! So did we :) And, mostly, I am always looking for ways to share the wonderful feeling I feel when I make stuff, with Brendan. This is not something that comes as naturally to him as it does to me, but the feeling of accomplishment is something that just makes me want to keep doing it, making things, experimenting with ideas & techniques & media. It was so lovely to see him enjoying himself so much while doing this. And... it was a great hit at school (especially the Pez... :). As I think of the summer ahead, I think we'll be doing more with sculpey- maybe this year he'll make beads to use for his holiday gifts! (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1469749 Tue, 27 May 2008 14:21:00 +0100 1469749 http://lisa-jedi.blogspot.com/2008/05/returning-to-fray.html Time certainly passes quickly, doesn't it? Thanks to a timely sermon this morning at church (on the topic of Jonah, the call to make the world a better place, all the reasons we try to avoid this call, & why we should answer it anyway) I realised that I've been away from blogging for far too long, & need to jump back into this community. I've come to understand that part of the reason I took time away from writing & sharing was my participation in the search for a new minister for my church. Not only was it very intense & time-consuming, but so much of the process was confidential & I worried about inadvertantly letting something slip while blogging. But the search is over, we successfully called our new minister last month, & it time to get back to the discipline of writing. One thing that I did discover during my break was that I felt a bit of a relief to be out from under the magnifying glass of looking at (& writing about) my family & my life on an almost daily basis, so I'm going to try to keep that in mind as I find a new rhythm for writing.So... last night Charlie & I hosted a meeting of parents from our school who have kids with IEPs & who are concerned about how the IDEA law has finally filtered down to our local level & will be making perhaps significant changes to our school next year. Brendan's school is a private alternative school with a well-earned reputation for doing a great job of educating kids with IEPs. About 20% of the kids at school (of around 100 total students) have IEPs & they are all integrated into regular classrooms. Of the 13 parents who met last evening, about half have kids in Brendan's class, & many of us have found this school to be our last resort for educating our kids, having either had bad experiences with our public school districts, or having been advised that the public schools couldn't provide the appropriate environments for our kids. The beauty of our school is that it's able to provide the "least restrictive environment" while also providing the (sometimes intense) support that our guys need, all in an alternative education setting, which means no standardised testing, the use of multiple & creative ways of getting the information across, hands-on learning with lots of field trips, plenty of outside time... I could go on & on :) Up until now, our school has been able to hire & train their own consultant teachers by contracting with the school districts to provide these services to kids with IEPs from those districts. Paying our school to hire their own teachers actually saves the districts money, for various reasons, so everyone's had their needs met. Kids needing OT, speech, PT, etc. were served by providers sent to the school from the districts in which each kid lived, which meant a lot of people in & out of the building, but it basically worked. This past year, New York State's appeal of the IDEA law failed, & now it is illegal for private schools to use public funds to hire their teachers... Our school is too small to hire these staff without using funds provided by the school districts. Also, instead of having the district in which the chid resides provide funds & services, it's the district in which the school is located that administers all of this. On one level, this has worked well this year, since just one OT, speech therapist, & PT providing services for all of the kids in the school makes it much easier to communicate & co-ordinate space. Unfortunately, our school is located in the poorest & most disorganised school district in the area... it's the district that we actually live in & although the service providers have been top-notch, the administration is a whole other matter. Sigh. According to the law, as the State is interpreting, the district is required to allow parents & non-public schools to have a say in who will be placed in their facilities, but the reality has been anything but encouraging, with shell-games being played with who the actual district contact person is, calls unanswered, funds withheld (the school finally hired an attorney to work on this). What we are anticipating for next year is that our present consultant teachers will be gone. Brendan's teacher, Cherie, has been with him since 3rd grade & knows almost instinctively what to do when he's having a tough time with tics or OCD moments, so that most of the time he misses little or no class time when they pop up. We shudder to think what will happen to him with someone brand new, no matter how well-meaning, has to take the time to learn how to help him along. Also, right now Cherie is able to float between Brendan & her other kids, using her time efficiently & effectively, keeping things moving along throughout the day. We have no idea how the consultant teachers sent by the district will be assimilated into the classroom. Will they send a different one for each child with an IEP that requires consultant teacher hours? Will they send one to work with all of them? How many hours will they actually be in the building? If Brendan's IEP says he gets 5 hours daily, what will happen to him when they're not in the building...? We do know that the district is not allowing any time on IEPs for the consultant teachers to actually consult with the classroom teachers. What's up with that? The other issue is that not only will they be sending their own teachers into an alternative school with a very specific education philosophy, but they will not be assigned until the day before school starts. How on earth is our school to maintain it's educational philosophy if a portion of the teachers either don't buy-into it or don't have time to even learn what it is? Extra added excitement is that our school will not be supervising any of these teachers, so there's no recourse if the new teachers don't get or like the way we do things... Hence our concerns & our meeting last night. It was interesting to meet face-to-face in a group with people, many of whom we've known on an individual level (or not- being the door lady I know a lot of the parents at school that Charlie doesn't). Some of the parents we know because their kids are Brendan's closest friends, but this was the first time we've worked together on any kind of advocacy. It was good to hear what the parents of younger kids at school are thinking, too, & to understand their concerns. Our school's director, Paula (who's also the parent of a college-age kid who went through the school system with an IEP), was there to update us on the "shape of things to come" & field questions & suggestions for responses. It probably goes without saying that people came with radically different concerns, from "how do we change this stupid law?" to "how do we get the district to listen to us?" to "how do we make sure our kid functions in school next year?" (that was our particular concern). It was comforting to share our stories, about our kids, struggles with the school systems, about why we've chosen this school for our children. Charlie & I shared our frustration with Brendan's recent IEP meeting, in which we were told (after 45 minutes of what we thought was a normal annual review meeting) that they were "not authorised to approve his IEP as written" (which is almost identical to his current level of services) because his needs were too high... The CSE chair suggested moving his 3-year re-evaluation from next fall to, essentially, right now in order to prove that he needs what we're asking for. (When the permission for testing form arrived last Friday, I had it signed, copied, & back to the mailman before he left the neighbourhood. They'll get it back tomorrow... this is how serious I am about my kid's services, thank you!) Our family has been slogging through the special ed system for 7 years now, so we're not so much worried as wary... We we glad to hear, too, from other parents that their kids' annual reviews had gone better than Brendan's. In the end, we decided to work on the situation from a few different directions. One of the parents agreed to draft a letter requesting that the district comply with state law by allowing the school & parents to be active participants in the selection of the teachers to be placed in our school next year. We'll all sign this & a packet of the letters will be sent not only to the district contact person but the school board president & the superintendent of schools. Charlie & I said we'd head up the group looking into helping the school fund a part-time consultant teacher hired by the school, to co-ordinate the new staff & particularly to work with the oldest kids (Brendan included). We talked about strategies for upping the ante, if the district decides to blow us off :) I'm left feeling guardedly hopeful about next year. I am still frustrated that a federal law can work against the best interests of my child's educational needs. I feel angry that so many uncaring people have the power to make things difficult for him, to affect whether or not he'll make it to high school or college, for goodness sake! It's just idiotic. I am glad to be part of a group of people of good will who want to work together to make things right. It's a very good start... (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1451868 Sun, 18 May 2008 19:31:00 +0100 1451868 http://lisa-jedi.blogspot.com/2008/04/happy-belated-birthday-brendan.html Yesterday was not only April Fool's Day, but also Brendan's 12th birthday! It was a school day, but he wasok with the wait for the end of the school day for birthday fun :) He had requested fruit trays with dip for the school celebration & they were a big hit (the teachers said that the kids appreciated the fruit more than cake or cookies :). When asked how old he was, Brendan chose to make up a math problem to tell them (a school tradition) & even used negative numbers in the equation! (The latest subject in 6th grade math... :) Since Charlie wouldn't be home from work until dinner time he had suggested that Brendan open one gift after school, so I had him open the japanese-language version of the newest Pokemon movie (it hasn't been released in english yet) that I'd found online &, as I'd hoped, he wanted to watch it right away. So I made popcorn & we headed upstairs, where we have Brendan's computer set for region 2 dvds, & had a great time watching it. It's just as visually gorgeous as the other recent Pokemon movies, & there was a great anti-war message, too. We did our usual shout-out of words & phrases we understood, & it really wasn't terribly hard to follow the plot or dialogue at all. After the movie I showed Brendan the thank-you card I'd printed on the computer, a picture from one of his fencing lessons, specifically for the gift from his fencing teacher of a hand-built foil just for Brendan! He gave it to him on Monday after having him try it our for his lesson. Brendan was pretty floored, to be given a fencing foil of his own, & really excited when he recovered from the surprise :) His teacher told him that he found Brendan's enthusiasm for fencing, at such a young age, very inspiring, & wanted him to have a foil of his own to really get used to. Lucky kid! (Really proud mom, too :)Another birthday surprise, that arrived in the mail, was a card, sent overnight mail, from Tomoko in Minnesota! She'd had some car misfortune & wasn't able to get a card out in time, so she sent it overnight so it would get here on his birthday (which I found very touching!). Grammie joined us for dinner, too, so she could be in on the birthday fun. As mentioned in previous posts, Brendan's anxiety has been running higher for the past few months, & he was definitely on higher-anxiety mode anticipating his birthday. Since we really didn't want him to be miserable about his birthday, we asked him to make a list of some legos he really wanted (nothing too expensive!) & told him that he'd definitely get these sets for his birthday. He's been really into the Star Wars legos & has been working hard to earn & save allowance money to buy sets bit by bit, so he was really excited by this plan. That nipped the anxiety right in the bud, too- whew! Just to make things more interesting, I hid the legos & gave him clues for finding them (they were much too easy- next year he's going to have to work harder! :) He even translated my hiragana handwriting (which is notoriously bad...) & understood the clue I'd written in japanese. We told him that he would not be able to make all of the sets before bedtime (he had homework to do, too) & he was ok with just making one... go Brendan!! As you can see by the above photo, legos weren't the only Star Wars items he got... Charlie got Brendan a lightsabre of his own at the same time that he'd gotten mine, so now Brendan & I have matching sabres! He was soooo excited. So, my sabre is now safe (he's been playing with it a lot...) although the living room furniture won't be until the weather warms up & he can practise outside... :) And, just a year to go before he's a teenager... amazing...In honour of his birthday, here's a Brendan story that I've been wanting to share for a while:A couple of weeks ago we visited the anime store to pick up some new manga. They had some new pokemon plushies, some with light-up cheeks (kawaii!) & Brendan managed to talk me into getting one (not terribly hard- I'm a cute freak, too :). I love how he treats all of them as though they were real friends... Well, when we got out to the car, he pulled the tab from the battery &... the cheeks didn't light up. I sighed & prepared to go back into the store to try & exchange it, but Brendan told me that he didn't want to give it up. "It's ok, Mom, I like this one the way he is. I don't want to take him back." I was a little surprised, & a little relieved... In the car on the way home I mentioned to Brendan that not many kids would be satisfied with a plushie that didn't do what was advertised. He said that he was worried about what would happen to it if he took it back, that no-one would love it. I told him that maybe he's better at loving things no matter how well they work because he knows what it's like to be different. He smiled... (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1346175 Wed, 02 Apr 2008 18:21:00 +0100 1346175 http://lisa-jedi.blogspot.com/2008/03/to-fight-or-not-to-fight.html Way back in early December Brendan's psychologist asked me to keep a "tic log", essentially a record of Brendan's anxiety moments. The purpose for this was data-collecting, to see if we could get a sense of the patterns of Brendan's OCD anxiety. I have been doing this faithfully, along with recording our responses to his anxiety on the odd chance that we learn anything from that, too, & getting Brendan's input on his time spent at school (everything has been done with his knowledge & co-operation, of course) ever since, filling 2 little hand-bound books with these observances... until just this past week. I'm not sure why I've stopped, but somehow it began to feel more & more like micro-managing, like looking at things too closely. So, without too much struggle (or guilt), I stopped. My researcher past tells me that we probably have plenty of data by now (3 months' worth) & my mom instinct tells me to follow my gut :) Brendan's psychologist is a wonderful, understanding person, so I know he'll understand, whatever the reason. One of the good things about doing this sort of thing is that it's not hard to spot changes over time (since I'm writing everything down, I can't help but notice what phrases I write over & over again...). A few trends that have been pretty obvious are his anxiety before going to school (particularly Monday mornings) & also the extreme pain that the OCD anxiety has been causing him. One of the things that has changed noticeably in the past 3 months has been Brendan's ability to ask for help when faced with anxiety- he's gotten much more proactive about this & we are actively grateful, making sure that we give him feedback when he's done well with communicating. His school teachers have been noticing this, too. It is a wonderful, wonderful thing to see him starting to use the strategies he's been learning to cope with the anxiety. It's also wonderful to be able to give him the feedback that he is using the strategies. He's not always aware of what he does & one of the main things we've been trying to help him learn ever since the anxiety became a "big player" (almost exactly 4 years ago, just before his 8th birthday) is how to choose the most effective & positive ways to deal with it. These days Brendan seems most vulnerable to the "fleas" (his word to describe/personify the OCD anxiety) on Monday mornings, & we have had some doozies the past couple of weeks... The first time Monday Morning-itis hit I was not prepared & it was a disaster. He was so immobilised by the "fleas" that he couldn't get dressed. I waffled between explaining that he would be going to school in his jammies if he couldn't get dressed, trying my best to enable the dressing somehow, and then trying my best to deal with the full-body tics that erupted whenever he tried to touch his clothes... There was something bad about the colour green that morning (related to something he'd seen on a show) & he couldn't even look at it. Although his clothes did not have green on them, he was surrounded by green things. Colour difficulties are a pretty common manifestation of the OCD anxiety, but they'd never been quite so intense. Finally, he was able to struggle into his boxers & pants on his own (his is nearly 12 & no way am I going to embarrass him & try to do the nether regions) & I dressed him the rest of the way. He was too upset to eat breakfast & sat in the kitchen & sobbed & hated the "fleas" & raged at the OCD & said he wished he'd never been born until it occurred to me to offer him a book, which distracted him enough to eat a banana & take his morning meds (bless you, Terry Pratchett!). By the time we got to school he was doing pretty well seemed not to have any more trouble than usual. I was a wreck for the rest of the day, though. I felt like a particular failure as a mother & it felt bad. Sigh. That wore off in time, though, & in talking to Charlie, he certainly was able to find bits where I hadn't totally blown it... I think the worst was feeling so helpless & ineffectual in the face of his pain.Over the following week I thought about what had happened, mostly in the back of my mind as we did our daily thing. One of the things that has really been coming into focus over the past few months is Brendan's pain & resentment of the OCD. I've gone through a few revolutions of thinking since Brendan was diagnosed as being on the autism spectrum & one of the main ones has concerned whether or not to "fight" his conditions. I have written before about the use of "fighting words" when it concerns my kid or his differences, & my ultimate conclusion is that is does not add positively to the world when we fight it... but how could I talk about this with Brendan while still acknowledging his pain & his own feelings on the matter? This week has provided a couple of occasions to work on this... :) This past Monday was definitely a continuation of the previous Monday, with the added excitement of Brendan still being "jet-lagged" from the time change. I was prepared, though, so I stuck with him verbally, from the other side of his bedroom door, as he got his pants on & then took over the rest of the dressing. Green was no longer an issue (the bigger the blow-up the shorter the duration of the "flea", I've discovered) but there is a particular shade of blue that causes problems... we got past that & he was crying on the way downstairs & plopped on the kitchen floor when we got there, so I just handed him his book & he requested an apple to eat & things were pretty ok. While I was eating my breakfast & he took a break from his book, I made an attempt to talk about the anxiety. I told Brendan that it seemed to me that his anxiety about going to school is actually pretty reasonable for a kid with Aspergers, with all of the social difficulties that go along with it. And it seemed to me that the OCD was taking reasonable anxieties & blowing them out of proportion, which is one reason it's so tough to deal with. We started calling OCD "anxiety on steroids" which made him kind of grin. It was a start...This morning, even though he was off school for teacher conferences, I suspected that he might have some trouble getting dressed because we were due at school at 9:00 for his conference (yesterday he was off, but no conference). I was right- he dithered & "flea-ed" & then asked me to finish putting his shirt & socks on, which I did, & then observed that it was really helpful for him to ask for help. He went downstairs yelling & moaning, so we talked again about the "anxiety on steroids" & he said that he hated anxiety & started crying. So I told him that one thing I've observed is that he has a lot of trouble on schooldays, which did not mean that he doesn't like school or trying to get out of anything (this is a recurring argument- that he feels he's being accused of using the OCD to try to get out of things). I reminded him that this school anxiety is not unreasonable for him, but that the OCD ramps it to unbearable levels. Then I gently suggested that he wasn't alone in dealing with something painful like this, that there are other people around that I've known who were born with difficulties that sometimes cause them pain- like my friends from my wheelchair basketball days who were paralysed or had lost legs in war or accidents, & how they had to get used to being different & being perceived as being different, & used to getting around in a different way, which could be really difficult. I told him that I'd observed that those who found positive ways to look at their pain, who didn't fight it but accepted it as part of them, were happier people. We talked about people we've known who are refugees from war, & how anger & wanting revenge does not make someone peaceful. We even talked about the difference between being a "fighter" in the sense of learning to fence & how that's different from fighting something. Brendan reflected that fencing requires a lot of thought, but when he's angry & fighting the OCD, he's not really thinking, just reacting. Our discussion bounced around a bit, but as we talked Brendan became calmer, more peaceful himself. I mentioned all the ways that I've already seen him using good strategies to cope with the OCD, & how he's gotten so much better at dealing with some parts of it. That it's ok to be angry & sad about how hard it is to deal with life with OCD, but it's what he does with his anger & sadness that's important. He was perfectly calm & able to sit & eat (no book :) after that. We both felt calm & peaceful. We talked about it all again during his conference, as he reflected on how well he's managing the anxiety at school, pinpointed the difficult times of day & how he & his teachers could cope with them. It was all very positive & I felt such a glow of pride for my son. Ultimately, I think what I really need is a big sign somewhere that says "the intense times are the times when we learn the most". It's so hard to cope with those intense times, when we're all falling apart & no-one knows what to do... but I look at what Brendan & I have learned from our frightful Mondays & I can feel (almost) grateful. We are turning our minds to every important considerations. How we think is how we live, & Brendan is growing into a very thoughtful person indeed... :) (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1298765 Wed, 12 Mar 2008 20:10:00 +0100 1298765 http://lisa-jedi.blogspot.com/2008/02/too-open-about-it.html I wonder how many of us have heard this, from well-meaning people... I heard it yesterday & I'm still trying to process my feelings. I was talking to a friend about a recently-met other person, and my feeling that this person seemed to have difficulty, at times, finding things to say to me. My friend's response was that perhaps I'm too open about having an autistic child- implying that it puts people off. That this is what would make it hard for someone to find things to say to me.I have gone round & round in my head- & out loud to Charlie- for a long time, about how to speak of autism & how it affects me & my family. I certainly don't want to be obnoxious, single-mindedly harping on the topic night & day- that just turns people off. I do my best to speak positively & respectfully about my son & my whole family, to retain our human dignity. Having been disabled in the past, I know that people prefer not to hear about difficult things. They are uncomfortable, they don't want to to have uncomfortable things brought to their attention. It's so much easier if we just stay invisible... I have tried being invisible- which is easier on some levels, but feels very much like pretending, like faking. I have tried saying as little as possible- waiting, say, until Brendan does something obviously "different" in public, & then being open to answering questions (as if anyone's brave enough to ask...). These approaches meet the needs of our society, to some extent, but they certainly don't meet the needs of my kid or my family! It just feeds the dominant paradigm of ignorance & cruelty by acting as if there's nothing different about my child or my family. It doesn't prepare society to meet us or accept us. So, I talk openly about my autistic son & about being an autism family. I'm as proud of him & his accomplishments as any mom, & I don't see any of it as being "in spite of" his autism- sometimes, what makes me proud of him is a result of his autism, a result of who he uniquely is. Our family is different than many, too, & I think it's important to let others know about our journey. If I don't talk about us, how will anyone know that they know a family that lives with autism? How will they know that it's not just something that happens to other people? How will they learn our truth about autism- that it's possible to live with it & love someone with it & be proud of that person- & understand that there isn't just one way to think or feel about autism? How can we change the world if we hide? I believe that we are doing nothing less than changing the world, by being who we are, loving each other for who we are, & telling the world about it. I know that I risk seeming like a "Johnny one-note" when it comes to autism, but it feels terribly important to me to prepare the way for the rest of Brendan's life by talking about difficult things now. As an autism parent, I feel like I'm on the front lines of a desperately important issue- how society is going to make room for my son as he grows up. So, in the face of feedback that perhaps I'm too open about having a child with autism, the whole of my being says, NO WAY! This is as much a part of me as my need to create- to knit & weave & dye beautiful colours. (I wonder if I'd ever be told I'm too open about these things...) My child & my family are at the centre, the heart of my life. I speak often & lovingly of them. To a select few I also speak of the more difficult things, because I need support, as any parent does. As Charlie has pointed out, we had friends evapourate in the aftermath of Brendan's diagnosis, people who couldn't wrap their heads & hearts around us as an autism family. But we have many more friends who have stuck with us, & who are living proof that our openness about how autism affects our lives does not have to be a turn-off. I'm wondering how other families deal with this sort of feedback when they hear it. What do you say? How do you feel? Let me know, please! It would be a help & a comfort to know how you're facing this, too. Thanks, friends!! (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1233276 Fri, 15 Feb 2008 01:02:00 +0100 1233276 http://lisa-jedi.blogspot.com/2008/02/lightsabre-pics.html ... of Brendan, of course :) Anyone who knows us knows who's most interested in actually playing around with the lightsabre (although he always asks me first :). I am having fun with it, too, but just having it gives me such a thrill... Brendan was the one to figure out how to evoke the "clashing" sound from it- I just get the swooping noises- because he wasn't too afraid of breaking it to bash it (gently) against the floor. Maybe the following picture will help explain why he's such a natural at this:Brendan's had his first few fencing matches against his teacher (putting what he's been learning into practise) & after the first one he practically flew home in the car, he was so excited. :) They put on the jackets & go through the rituals of a real match (saluting, etc) & Brendan just loves it. Notice his best "Inigo Montoya" posture, with left arm behind his back. He checked this out with his teacher, who said it was fine (he's a "Princess Bride" fan, too :). Brendan's slowly on the mend from the flu. Charlie's let it slip that he thinks there was a touch of pneumonia in there, too. Oy... no wonder he's still so peaky. We had a japanese lesson yesterday, but that was the only thing very demanding that he did. Today we stayed home from church but they're at the pool now, since Brendan was really psyched to go swimming. The toughest part of his recovery, other than the slowness, is that he's been having a lot of trouble with the OCD. The whole time he was sick he barely ticced, & there were no troublesome OCD thoughts at all. Now that he's partway well he's much more vulnerable than before- it seems as though he doesn't have the energy to keep them at bay. The most difficult time is during transitions- getting off the computer, leaving a room, finishing a meal. We stick right by him at those times & do our best to help him calm down quickly when the OCD hits. Hearing him scream with his already hoarse throat is awful... We've been giving him deep pressure, gently steering him physically from where he gets stuck, hugging him, & reading aloud to help. We are planning to send him back to school tomorrow (although it will probably be just for a half day), but I'm a bit worried that he won't have the energy to withstand tic triggers. The visit to the pool should let us know how that's going, though. And we'll just let his teachers know that I can pick him up any time. It sure is good to have him getting well again, though. We've actually had a very nice time together while he's been home- he was really good company even when he was feeling his worst, & we watched a lot of fun movies together. But it's time for life to get back to what passes for normal at our house... :) (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1220863 Sun, 10 Feb 2008 19:41:00 +0100 1220863 http://lisa-jedi.blogspot.com/2008/02/fifty-is-fun.html Yep, it is... I know because today was my 50th birthday. :)It's been a surreal couple of weeks, starting 2 Saturdays ago when I was preparing for our regularly scheduled japanese lesson & a strange guy turned up in the kitchen. Charlie introduced him as the caterer & informed me that the regularly scheduled japanese lesson wouldn't be happening (although our teacher & her husband would be over later). Instead, we were going to have my surprise 50th birthday party! Poor Charlie had been trying to figure out a good date for a party in the face of uncertainty about when the minister search would take me away for nearly a full weekend at least twice in February, so he settled instead on the end of January as being a safe time. He kept the party small- about 20 people- so we could have it at home. He was very fortunate in his choice of date because the weather was gorgeous, for late January in the northeast US. He had invited friends from a nearby town & relatives from Canada to the party & they had not difficulty traveling at all. Amazing...I spent the next hour, on surprise party day, in a state of disequilibrium, as all sorts of food, & then people, arrived at our house. Brendan's best friend & parents arrived, & he & E happily scampered upstairs to play. When the first of the out-of-towners arrived I cried- I just couldn't believe they were here! Then more arrived- my best friend Roo- & finally a cousin & my aunt from Ottawa, & I completely lost it at that point. I had thought my aunt, who has Alzheimers, would never visit us again (she was here last July) because she hadn't been doing very well, but she'd been on a new medicine for a few months & was not only well enough to travel, but recognised people & really seemed to be enjoying herself. It felt like a miracle. Charlie had the same caterers as when we were married (just over 19 years ago) & the food was just as good as I remembered :) There was champagne & sparkling juice for toasting, then we all munched, then had birthday cake, & I wandered around visiting with everyone. I was a little foggy, partly from crying & partly because I was coming down with bronchitis, but it was just lovely to see everyone! Charlie had asked that any gifts be tea-themed, & it was so much fun opening teacups & teapots, a tea ceremony set from our japanese teacher, fun teas... but the best part was just being with everyone. My husband sure knows what's important to me, & sure knows how to surprise me! (More on this later...)The following week I never quite succumbed to bronchitis, thanks to a well-timed regular visit to my doctor, who put me on antibiotics & increased my asthma meds. Last weekend I was mostly away on church business, & when I got home Sunday afternoon I discovered that Brendan had visited the pediatrician that morning, rather than going to Sunday school... He'd complained of chills while Charlie was in choir practise & looked kind of ill, & when they got home he was running a fever. The way he was coughing (& by the appearance of what he was coughing up), it seemed as though he'd caught my bronchitis, so we started him on a z-pak (the antibiotic I take) Sunday afternoon. By Monday it was clear that he wasn't going to school, although the bronchitis was responding well to the antibiotic. By Monday afternoon Brendan's fever was way up (102.4!) & he was vomiting :( By Tuesday morning he didn't have bronchitis any more, he had the flu :( :( We kept him hydrated by sucking ice cubes & peppermint tea sweetened with agave nectar, & his cough responded well to Riccola herb & honey lozenges, just as mine had. We also supplemented the tylenol every 4 hours with linden & elder tincture I'd made a few years ago to use for fevers, & not only did he not object to taking it (the flavour's pretty mild) but we think it did help keep the fever under control. The computer in Brendan's room is set to play Japan's region dvd's, so we just cycled through all the Pokemon dvd's we bought last summer, which certainly added to the surreality of the day by providing a japanese dialogue to Brendan's being sick in bed. We were both pleased to discover that we understand even more now than we did last summer, & we'd happily repeat the bits of dialogue we understood to each other (when he wasn't sleeping, I'd sit & knit & watch with him). Brendan still had a high fever on Wednesday, & a really sore throat, too. That day was Charlie's 45th birthday & he took the day off work (he sometimes works half days on Wednesdays, which is technically his day off), which was great because somebody had to pick up the birthday cake I'd ordered for him! He also bought some essentials like kleenex, riccolas, & peppermint tea at the grocery store. I had already given him his main birthday present- a new flat screen monitor for his home computer- but I'd also managed to make him a spare pair of gloves out of some hand-dyed silk & wool blend yarn & he liked them very much :) Brendan got up for a little while & even ate some birthday cake, but he spent most of the day in bed. I managed to take a nap in the afternoon, which made things much more cheerful- we'd been up really early (between 4 & 5 am) most mornings because Brendan woke up coughing & couldn't get back to sleep. I also had the bright idea to set my old laptop up in his room so he could watch dvd's other than the japanese ones & listen to music as well. Charlie & I also took turns reading "Hoot" out loud to him & he loved that. Brendan had even more energy today & his fever finally went down below 99, which was a relief! There was a lovely box of chocolates that Brendan had picked out for me for my birthday sitting at my place at the table when we got downstairs for breakfast. After breakfast I got out stickers & cardstock & Brendan made birthday cards for Charlie (belated :) & Grammie (her birthday is next week). He had a lot of fun carefully choosing animal stickers & funny caption stickers to go with them, & writing out his birthday messages with sticker letters. Our dear friend Ros called to sing a happy birthday song (she called Charlie yesterday:). Brendan nearly fell asleep on the sofa before lunch, so I suggested he snuggle back into bed after lunch while I read to him (this time from the Newberry award book "Thief"). I was hoping he'd nap, because he'd been up at 2:30 am & never really went back to sleep :( He enjoyed the story, but didn't sleep. Grammie came by to see us (on her way back from the doctor- she's sick, too!), to bring Charlie a birthday pie, a gift for me, a new video for Brendan, & a copy of the newspaper with the cute ad she'd placed wishing me happy birthday (featuring a picture of me at age 3... :). Brendan watched a japanese dvd until mid-afternoon, when he was energetic enough to come downstairs & have a session playing on the computer. We agreed that afterwards we'd have popcorn & watch "Howl's Moving Castle" in japanese on the laptop, upstairs on his bed. It was pretty relaxing, although we had a visitor- a friend from school who stopped by for some of the tinctures I'd used for Brendan's fever because her son also has the flu. She told me that Brendan appears to have been one of the earliest cases of a flu outbreak at school, & that they have closed the school tomorrow because so many staff & students are sick!! Charlie & I are so glad to have gotten our flu shots (he because he sees so many sick people & me because of the asthma)... & we're going to make sure Brendan gets one next year, too! I also had a lovely phone call from Tomoko in Minnesota. Wonderful Charlie picked up japanese take-out for dinner tonight & we had some champagne left over from my surprise party. I was not expecting any more presents- the party had been such a wonderful gift & I had Brendan's chocolates, but he announced that there were fun presents for after dinner. We waited until Brendan had one more computer session (he's really missed playing while he's been sick) to open them. Brendan's eyes were drooping (he'd been up for over 17 hours by this time) but he perked up when I opened my last prezzie from Charlie- I simply resumed crying when I realised what it was... my amazing & wonderful husband got me a lightsabre for my 50th birthday! It's a replica of Obi-Wan's from the most recent movies, & not only does it light up, but it makes the coolest noises that respond to the motions you make with the sabre. It is utterly awesome & I just can't believe it. I finally have a lightsabre!! See- 50 really is fun!Tomorrow my neighbour is coming over so I can go grocery shopping- what a doll! I have not driven a car since last Saturday, I have not been out of the house since last Sunday. I am having trouble remembering what day of the week it is... but Brendan is on the mend & I can actually see him going back to school on Monday (we are hopeful that enough teachers will be well enough that they'll have school...). These past couple of weeks have made this a memorable (to put it mildly) birthday season. Charlie will take a picture of me with my lightsabre soon, so I'll post that as soon as I can :) (I'm trying to decide if I should wear my red hat in the picture, too- I'm entitled to now!) Before he got sick, Brendan & I had finished half of our first podcast, so we hope to have it finished & up pretty soon. Stay tuned!! (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1216527 Fri, 08 Feb 2008 02:26:00 +0100 1216527 http://lisa-jedi.blogspot.com/2008/01/conscious-living.html 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... :) (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1155926 Wed, 16 Jan 2008 14:04:00 +0100 1155926 http://lisa-jedi.blogspot.com/2008/01/belated-happy-new-year.html 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 :) (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1139839 Wed, 09 Jan 2008 13:39:00 +0100 1139839 http://lisa-jedi.blogspot.com/2007/11/blog-byte-1.html Thanks so much to you patient souls who have continuted to read & comment in this blog! I have had so little time & energy for writing lately, but have been slowly finding the inclination (&, really, the need) to continue to write & update. So I've decided to think of updating as "blog bytes" rather than blog entries, in order to fool myself into thinking that it won't take as much time as it usually does... it's all in how we think, isn't it? Here's hoping my mental chicanery works!I really appreciated the comments on Brendan's poem :) One thing I wanted to note is that the kids wrote their poems based on a template (a format & questions to respond to) that their teacher provided, which is why there are refrain-ish bits. The choice as to the refrain was Brendan's, of course. His teacher explained that the template helps the kids to organise their thoughts & also brought out some really deep ideas from all of the kids... I thought it was much more effective than saying "write a poem about "blah blah". Life is still moving a bit faster than I can keep up with, but I'm managing to enjoy it (most of the time) anyhow :) This was our year to go visit Charlie's parents for Thanksgiving (about 5 hours by car) but in light of the not-so-cordial relations between me & them these days we decided to stay here for the holiday & have Charlie & Brendan take a "road trip" Friday afternoon to Sunday to see them. So we had a smallish (for us) 10 friends & family for Tgiving dinner. This year we decided to have everything but the turkey, which really worked well! (Brendan cannot bear having meat in the house- he calls it "desecration"- or being around meat being cooked or eaten because it's harmful to the animals.) I made roasted vegetables as a main course, plus a quorn (veggie) roast (not Charlie's fave, but I love it & it was well-received by some) & Brendan's favourite- mashed potatoes. Brendan had seen "Rattatouille" courtesy of Grammie right before Tgiving & was very excited about helping us cook- yay! He & Charlie peeled & chopped most of the veggies for roasting & mashing, which was a huge help. Everyone else brought side dishes & pies for the meal, & we all had that overly-full sensation you're supposed to have after Thanksgiving, even without the turkey (& even though I forgot the cranberry sauce...). My brother came with his 2 oldest sons, so Brendan even had cousins to hang with, which he really enjoyed. Afterward we sat around & played (or watched- I was pretty tired by that time) games & it was just a lot of fun. Charlie worked Friday morning & then he & Brendan took off in the car for their trip. Brendan finally twigged (on Wednesday) to the fact that I wasn't going with them & asked why. Charlie & I gave a brief explanation (that his grandparents were having some trouble getting along with me these days) & we kept it light, & Brendan accepted it. He loves spending "guy time" with Charlie, & he also loves being in the car. When I asked him why, he said that he likes riding & listening to tapes & eating snacks :) Charlie & I also think that it's a safe, secure, & predictable environment, which also makes it very comfortable for him. I was having some anxiety before they left, which Charlie very sweetly acknowledged with lots of hugs. Last time they were away I ended-up talking Brendan down from an anxiety attack by phone & it was really upsetting not to be able to be with him & hug him... We weren't quite so concerned this time, since this trip wasn't quite as intense as driving for 3 days to pick up the new boat (their previous road trip, in September), but I was still worried. I knew that Charlie was up to the task of single-parenting Brendan, but couldn't avoid feeling a bit guilty leaving him to do it on his own. Fortunately, I had planned some big projects for the weekend, so I got to work as soon as they left & it really left little time for worrying. I had decided to run some more dye pots- an extension of my summer experiments with shibori-style resist dyeing of yarn using natural dyes- plus do some more tie-dyeing for holiday presents. So other than a church meeting/dinner Friday evening & japanese lesson Saturday morning (& church on Sunday) I spent nearly all of my time prepping, tieing, dyeing, untieing, rinsing... you get the idea. Tie-dyeing takes 3 days, so it was perfect for my 3 days on my own. The colours are such a gift- there is nothing like untieing brightly dyed cloths or skeins of yarn. I also was smart & brought my laptop upstairs in the evenings, so that I could sit in bed & watch anime & stuff until I was tired. It really helped me to avoid the night-time heebie-jeebies this time...They got home just fine on Sunday afternoon, having had a nice trip. Brendan was very happy to be home, to his computer & his legos (& to me, he was very clear about that :). We had a honeymoon few hours & then the transition anxiety set in. By bed time he was hoarse from screaming at "fleas" (what he calls his OCD thoughts these days) & we were exhausted from trying to get him calm & comfortable enough to sleep. He finally was able to concentrate on listening to the Harry Potter book on tape they'd begun in the car (HBP- Stephen Fry version), but didn't fall asleep until nearly an hour past his usual bed time. It was one of those nights that leaves me feeling like an inadequate parent, for sure... But it also made me realise that so much of our relationship with Brendan these days is changing. He's fully into pre-adolescence, which means that he's developmentally, appropriately beginning to start doing some of the things we've been doing for him- but he's not nearly ready to fully take the ball & run with it. It leaves lots of gaps, lots of frustration for all, lots of feelings of inadequacy for all... it's also a real opportunity to meet & greet the emerging, neo-adult Brendan. I really like this unfolding person! He's got a great sense of humour, & when he's not feeling overwhelmed by life he's witty, thoughtful, creative... I just need to remember these things when he's in the midst of a crisis :) Monday morning the "fleas" started in at 6:30 am & kept up all day, making school difficult. He could barely get things into his locker, he was feeling so attacked by the "fleas", & he kept either screaming or freezing up, unable to move. He told me that he was just too tired to try focusing on something other than the upsetting thoughts, which made me sad, but I also reminded him that practicing is absolutely key to learning how to focus, & that we need to start daily practising. I spoke to his teachers that morning & they were prepared to give him loads of space, which really helped. When he wearily got in the car after school he asked if we could go somewhere for coffee, & I said sure, as long as he thought the "fleas" were sufficiently under control (& wouldn't bother him too much while in a new, unfamiliar place) & he said yes, so we went to Starbucks & had lattes & shared a goodie. It was so much fun :) We talked anime & spoke japanese to each other. I could tell Brendan felt very grown-up doing this & he was really at his best- because he was feeling grown-up. It was a nice way to finish a trying school day & he had little trouble with "fleas" until nearly bed time. Charlie decided that if Brendan needed to yell them out, then that's what they'd do, so they called down the stairs to me to "plug your ears, mom" & Brendan just yelled until the fleas flew... He took a bit longer to fall asleep again, but not nearly as long as the night before... & he even managed to his homework beforehand!This morning Brendan told me that maybe we should practise together at least 5 minutes a day, to help him learn to intensely focus on something other than the OCD thoughts. I agreed with this plan, & also recommended we do some more "ki" work, so that he can use his "ki" to protect himself. This was something his OT suggested, & she showed me a tai chi technique to use with him to help him do this. We tried it this morning when when he got stuck by a "flea" in his room & it really helped. He seemed a lot less vulnerable this morning, too, & more businesslike about the OCD thoughts. During brreakfast he was actually telling them off- saying that they weren't worth his energy! I heartily agreed... :) He seemed much more together & powerful when we got to school this morning, which was a delight.Soooo- so much for "blog lite" huh? There is so much more to tell of our very full lives these days, but I've got to get going. I'll be back as soon as I can. Thanks again, friends, for your support!! (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=1054858 Tue, 27 Nov 2007 16:30:00 +0100 1054858 http://lisa-jedi.blogspot.com/2007/10/poem-by-brendan.html This is what Brendan wrote for this year's curriculum night (open house) at school. We were blown-away when we read it... Our kid digs so deeply when he writes! I am so, so glad that we have made every attempt to make writing easy for him, by not trying to force him to rely on any one way to communicate, or insisting that his handwriting be legible, or trying to teach him cursive writing when all the other kids were doing it. Brendan has been typing, using scribes, & now vioce-activated software, since he was in 3rd grade. The result is a kid who has found his writer's "voice" already (at the age of 11!) and who responds positively to the writing challenges presented by his 6th-grade teacher. Lately they've been concentrating on "pursuasive writing" & last evening's homework assignment was to imagine you're a pumpkin & try to pursuade someone not to buy you for Halloween. Brendan has been preferring to do homework with Charlie recently, with Charlie as scribe or with them taking turns writing. The giggling that drifted down the stairs yesterday afternoon was infectious. The kids were asked to use "juicy" words in this assignment, & Brendan's were, quite literally, juicy :) His description of his pumpkin insides were so disgusting that I was definitely pursuaded (not to buy!). How lovely to have a kid who loves language & writing so much! The bonuses of not having pushed any particular form of writing on him have been that not only does he find hand-writing coming more fluently these days, but that he pushes himself to do better without relying on anyone else to push him. All in all, I learned an awful lot about my kid from reading this poem... and it's very good to see him from his point of view for a change! (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=979224 Thu, 25 Oct 2007 15:39:00 +0100 979224 http://lisa-jedi.blogspot.com/2007/10/moving-back-into-groove.html Hi All...Sorry for such a long hiatus! We really are doing well, & I'll elabourate further in a moment... Things just became busier than they've been in a long, long time, hence the blogging break. Right before we left for Japan (last June) I agreed to be on the search team at my church that is going through the process of finding a new minister, ours having left in May to become an army chaplain. The way we Unitarian Universalists do things is to find & call ministers ourselves, the process being facilitated by the denomination with guidelines & an online matching service. I've been a member of my church for nearly 30 years & have observed this process 3 times before, but never been in a life stage where I could participate actively, so I'm really psyched to finally be part of it. It's intense, though. Like having a part-time job... I'm actually anticipating an imminent OS upgrade (like, this evening, I hope...) so that I can use iworks (which I plan to purchase tomorrow) to create & publish the packet we'll be sending to prospective ministers- that's my main responsibility right now (nothing big- ha, ha, ha)... outside of my other church & school activities &, of course, being Jedi mom to Brendan :)Ahhhh, Brendan! He grew 1 1/2 inches over the summer!!! He's also grown internally in so many ways that are not visible, but are truly wonderful. The school year's gotten off to a great start. He's now one of the 6th graders in his mixed 5th & 6th grade class, & is taking his responsibilty for being one of the "big kids" very seriously. The anxiety management that he learned while in Japan & over the summer have led to a much calmer Brendan, & when the "fleas" do "attack" he can explain them clearly & often requires no intervention in handling them- not even a kekkai (ki) barrier. It's amazing to see him doing it on his own... We've been able to talk through many of his long-time tic-triggers & he's finding creative ways of managing them, such a using imagery, burning incense (we light it for him) to "smudge" the thoughts away, or just burying himself in a book for a while. He's been reading voraciously we've been enjoying discussing the books with him so much! He's worked his way through all of the Charlie Bone books published to date (6 so far) & is on the second of Rick Riordan's series about demi-god kids (it starts with "The Lightning Thief"). I've been pre-reading them so I can really discuss them with him, & enjoying them all very much myself. I also decided to allow him to start reading the manga "Naruto", which was a bit borderline in terms of violence (but no worse than anything you'd see in the LoTR movies- which Brendan has not seen- or even in InuYasha) but is a manga I've been enjoying for a while. I'm so glad I decided to allow him to read Naruto! The basic story is about kids who are training to be ninjas, the protectors of their village & country, & the main character, Naruto, has a very powerful demon sealed within him- a good metaphor for adolescence if there ever was one :) One of the things I like about the story is that the values- looking out for others, finding family in unlikely places, doing your best no matter what- are consistent with my own, & through the manga Brendan is getting these values from yet another source. Also, we've had some interesting discussions about lots of things brought up in the manga, about stereotypes & how they play around with them in Naruto (one of the most powerful ninjas around looks rather like a bimbo...), about how people in the manga feel about fighting (there's quite a lot of ambivalence), about how you can tell how they're feeling by looking at their faces... which is one reason we've been concentrating on reading the manga rather than watching the anime, since the illustrations are static & more easily interpreted by my aspie boy :) One of our more interesting conversations occurred because he was consistantly referring to male characters with long hair as "she"... turns out that he didn't know where to look in order to figure out the gender of the characters, so we talked about the general physical differences between men & women, & how they usually show up in illustrations. A great "teaching moment" :) It probably goes without saying that Brendan will be a ninja for Halloween- he chose the fabric & approved the pattern, so I just have to make it (this week, I fervently hope...). The bottom line these days is that I have a wholly different kid on my hands! He's clearly moving into adolescence, & doing a fairly graceful job of it (at the moment, at least :). He & Charlie have been spending more & more time together, too, doing dad & son stuff... Brendan re-discovered his interest in sailing about mid-August & took over crewing for Charlie for Sunday racing, even helping him go on to win the summer series. He was dad's only crew for the fall series & they won that one, too :) For the first few weeks of sailing I was having to go down to the club about the time they'd be coming into shore to help "catch" the boat & hold it while Charlie took down the sails & stuff. Brendan just wasn't strong enough to do it... but after about 3 weeks Charlie decided that Brendan could do it- & he did! His hand & arm strength has increased quite a bit & even though he's gotten banged-up a few times (which is just what happens when you race a sailboat, I can testify!) he's hung-in there with it & really enjoys not only the sailing but chatting with the other sailors before & after races. Pretty neat...I hope to start posting more often, now that we've settled into a routine & I'm getting used to the stress of having the church work on top of the mom work (& figuring out where the Jedi work fits into it all... :). I have started meditating again regularly, which has been a huge help... Mostly it's Brendan's moving to "the next level" that's making life so much fun these days, in spite of the stress. We are getting such a kick out of his insights & his excitement with his accomplishments. Life is very full- I look forward to continuing to share it! (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=956138 Tue, 16 Oct 2007 19:23:00 +0100 956138 http://lisa-jedi.blogspot.com/2007/08/brain-freeze.html If you're Kim Possible's Rufus the Naked Mole Rat (seen above with a real NMR at the National Zoo), brain freeze is due to chugging super-large colas on the fly. Although I have been known to accomplish the same thing with fresh-from-the-fridge soy milk, my current brain freeze is due to multiple factors. The result is that I haven't felt much like writing for a couple weeks... :(Brain freeze cause #1 was transitioning from Japan back to home. I never before realised that speaking (imperfectly at best) a different language for 3 weeks actually reconditions the brain (or, at least, my 49-year-old brain), so that it took over a week for me to remember to speak english to people outside my family, & then caused my brain's language-central to kind of shut down for a while. I'm better now :) Brendan didn't seem to have this difficulty, but he wasn't trying to talk as much as I was, & he's 11, for goodness sake (flexible brain). We've started japanese lessons again with our new teacher, Shizuka, & it's going really well. For the first couple of lessons I was still in brain freeze, but Shizuka was very patient & slowly she got an idea of what we knew & where we wanted to go. The part of the lesson with Brendan is mainly playing games (in japanese, of course) & reading some of the kids' books we bought in Japan, which he's enjoying. She's witnessed one meltdown (one of only 2 since we got home from Japan, & not at all related to our lesson) & it didn't faze her a bit. Hooray! :) It's really good to get back to it & also to chat about things we saw & learned in Japan, getting more understanding & insight into Japanese culture. I'm going to ask her to help me write an email to Nobuko-san soon, too (Tomoko's mom, whom we stayed with for part of our trip) since I'd love to see how she's doing & thank her again for all she did for us.Brain freeze cause number 2 is more personal, & the main reason (I think) that I haven't been able to write. Some long-time misunderstandings between myself & Charlie's family have come to a critical point in the past few months & I've been doing a great deal of "work" on this stuff with my therapist. Sigh. There's no real win-win in the situation I'm in, so I've really been stretching myself to figure out how to make things livable, & to minimise the effects on my husband & kid. Charlie's been supportive & patient, & is the main reason I'm still sane. Dealing with this has sapped a lot of my energy & so Brendan's borne the brunt of a lot of this in the form of lack of patience & understanding, but things are getting back to normal & we all seem to be intact. Whew. Brain freeze causation #3 is more elusive, but appears to be a lack of creative direction that has had me pretty miserable. Before we left for Japan I finished up a lot of projects- left few things unfinished, few threads hanging. Not good. There wasn't anything to just dive into when I got home, to rev-up the creative juices. To be honest, for the first few weeks I was just too tired & disoriented to do much, which always makes me very uncomfortable. I am never comfortable when I don't have lots of projects to do, lots of pots boiling, so to speak. On top of this, with my low-energy state of being, it's been really easy to let go of the usual summer projects that Brendan & I do together. He's been having a blast with "Camp Ck" on Tuesdays & Thursdays, & the other days of the week have been full of appointments & other busy stuff. We've talked about doing some things, but I just haven't had the energy to push it. Finally, though, I seem to be finding direction. At the indigo workshop we visited in Kyoto I found inspiration to try some new things with natural dyes, & for the past week or so I've been starting the process of exploring some of that inspiration. I got my natural dye book out & discovered some dye plants I never tried to use before that grow in my own yard (birch leaves & bark! coreopsis! elder leaves!) so I've widened my scope & now the house is full of yarn (& silk scarves!) in various stages of the dyeing process & the freezer is full of dye plants waiting for the pot. My next-door neighbour has been sharing plants from her yard, too, & it's been really fun to share my ideas with her. It's really nice to have the creative spark back. It's also given me the energy to begin the yearly project of knitting 6 pairs of socks for Brendan- woolies for the winter. Last year we reached the milestone of Brendan's socks being the same size as mine (& I didn't have to knit all 6 pairs, since I could give him a couple of mine, too :). This year his feet are between my & Charlie's sizes- it boggles my mind. I'm nearly done with 3 pair, & hope to finish the job before it becomes a "job", if you know what I mean :)One of the reasons I'm happiest to be recovering from brain freeze is that I'm getting my energy back for Brendan. His work on the OCD anxiety has been so dynamic this summer that I need to be on my toes & ready for the times he needs some facilitation. It's awesome to observe & participate in this work of his. (Yeah, it's sometimes annoying too- like when he yells "fleas" in a panic, from another room, & I think he's yelling "please!" & have no clue what he's talking about/asking for... sigh.) We've started talking about the return to school & how to manage things that were at the top of his anxiety list at the end of 5th grade. He's now much more receptive to thinking about his human "fleas" (what he calls the OCD thoughts these days) as human beings with feelings, & let his own feelings of compassion balance the "fleas" he has about them. We've been talking about different ways to set "ki" barriers & the different ways he can protect himself from anxiety attacks, like carrying "omamori" (Japanese-style good luck charms), burning incense to purify "flea"-infested things, & shoring-up his energies so that he's not as vulnerable. We've talked about making our own omamori by sewing little pouches & putting crystals & herbs in them. I'm finding a strong sensory component in many of the things that are helping him- smell & touch helps him feel more secure, so we've been talking about that, too. His ability to analyse his anxiety is amazing these days. It's a lot more fun/interesting for me to be a partner in this enterprise, rather than the one seeking & providing what help I can. The flip side to the new maturity is that we're getting some "teen attitude", too. He can be really touchy if I appear skeptical of things he says, or doubt his judgement. We've always sorted things out afterwards, but I know this is just the tip of the adolescent iceberg. I've explained to him that questioning his judgement is just plain going to happen, given that he's still growing & learning what he needs to make good judgements. I have shared some indelible childhood moments of my own where bad judgement wreaked havoc, but have also explained to him that it's a natural part of his growing to resent my trying to intervene/protect him. I hope as long as we can maintain respect for each other we'll be able to get past the resentments to come... So... that's where we are right now. Not quite ready for school (I don't even know what day he starts- we've got a few more weeks!), but definitely in end-of-summer mode. We've been enjoying japanese food (home-cooked & at our fave restaurant) & have found we can practise what we learned in Japan with some of the waitresses :) & getting to know our new japanese teacher. I finally found a positive way to encourage Brendan to practice the Dragon voice-activated software this summer, by allowing him to earn bionicles for time spent Dragoning... so he's been emailing grandparents & writing poems & stories, & 6 Toa Mahri later is defiinitely more proficient with the software (yay!). He was also psyched when I mentioned that the school district will be giving him a laptop with Dragon on it to use at school this year, which encouraged the practising, too :) We've been walking around the block every morning & after he finished "Deathly Hallows" he developed an interest in collecting wood from different trees to make wands, so we got out the tree identifier (& our neighbour very kindly gave him a lovely tree book) & found twigs from 8 different varieties of tree on just one circle around the block! He's in the process of stripping, sanding, & tung-oiling the wands. Brendan got the chance to spend time with his best buddy yesterday, too, (& just as importantly, I got to spend chat-time with his mom & dad :) & that was just lovely. Tomorrow I hope we'll begin the omamori-making. Should be interesting... :) (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=799281 Tue, 14 Aug 2007 16:57:00 +0100 799281 http://lisa-jedi.blogspot.com/2007/07/nuff-said.html (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=751732 Mon, 23 Jul 2007 18:53:00 +0100 751732 http://lisa-jedi.blogspot.com/2007/07/hp-b-how-harry-potter-changed-our-lives.html Thanks to Joey's Mom it occurred to me that today is a great day for this post- it's been cooking for a long time, but just hadn't happened. When I say "changed our lives" I mean it in a tangible, literal way- not just metaphorically. Our family would not have been the family it is without HP... & Brendan wouldn't have his IRA either :) I discovered Harry when Brendan was a baby. I have been a kid-lit afficianado since- well, since I was a kid, so when a long-forgotten friend (thank-you, whoever you are!) recommended "Sorcerer's Stone" I was happy to try it. I picked up the next 2 in the series the next day, that's how hooked I was :) I remember that my next 2 dilemmas were: how old does Brendan have to be before I can read it to him, & when was book 4 coming out? Book 4 came out before Brendan was old enough to share the books with him (summer of 2000), but a little over a year later, when he was 5 1/2, Charlie & I decided to take the plunge. Brendan was in kindergarten & had a sophisticated conversational ability, so we were sure he could let us know if the book got too scary for him. We began reading it aloud in the car on the way to Pittsburgh for a Thanskgiving holiday with Charlie's family, made memorable by sufficient dysfunction that I spent a lot of time in a hotel room reading HP to Brendan. Bittersweet, for sure. It was a great distraction, though. I read the very last line of the book as we turned into our street on the way home. Brendan had loved it & was eager for more...That very same fall was Brendan's first as an identified "special needs" kid, with an indeterminate diagnosis (some thought he had CP, due to his severe developmental delays) & a very busy schedule of OT, PT, & visual-perceptual therapy. It was our first year "in the system", learning to advocate for our kid, dealing with IEP's & service providers & school districts. Our bewilderment was akin to Harry's first year at Hogwarts, as were our challenges. It was also the fall of 9/11 & all of the world-changes that brought. Somehow, Harry helped us cope. In fact, the very first book Brendan wanted to read, with his newly-forming binocular skills, was "Sorcerer's Stone", although he gave it up eventually, since he really didn't yet have the ability to focus or track words on a page. But it was so heartening to see him finally want to read...The second book, "Chamber of Secrets", ramps up the action & scariness, but we decided to go for it anyway, with the precaution that it we could read it any time but before-bedtime :) I remember experiencing the basilisk chapters with Brendan held tightly on my lap with Charlie reading to us, because Brendan was scared but he really wanted to know what happened... I also learned the value of a bit of quick editing as I read (particularly when we got to book 3 & the Dementors), to tone-down the intensity a bit for nearly-6-year-old Brendan. Eventually I got all of the books on tape & Brendan would listen intently to them (this was a few years on, when we weren't afraid of his getting too freaked out by the scary bits) for hours on end. Fast-forward to 2003- Brendan was 7 years old, & "Harry Potter & the Order of the Phoenix" was released that summer. After dithering a lot 3 years earlier when book 4 was released, not wanting to stand in lines at midnight (Potter-mania had finally hit), thinking I was a "big girl" & could wait a day or 2 before getting it, then finding all the local bookstores sold out for days after (I found my copy in a "Linens & Things" store, of all places), I did the Amazon pre-order thing & had the book delivered by mail (which is what we've done ever since). Brendan & Charlie kindly entertained his parents, who were in town visiting, while I snuck away & read as much as I could. I finally finished it at some un-godly hour of the morning, & then Charlie had his turn- we decided that the book was a bit intense for Brendan at that point, so asked him to wait another year to read it. By that time I had discovered Mugglenet & was happily experiencing all of the Potter-excitement online as well. I had never before participated in any online discussions of the books, although I was intrigued by the idea, when I read notice of a new, Mugglenet-supported discussion site called "New Clues to Harry Potter Book 5", based on a book of the same name by Galadriel Waters. The forums started-up in mid-November & I found them interesting (I loved people's sign-in names- so creative!), but I lurked exclusively for quite a while, it being too close to the holidays for me to have the time to participate. In early January of 2004 I took the plunge, although the most difficult part was figuring out my own sign-in name! I finally settled on the name Brendan had given me for Halloween that year, when he was Qui Gon (as a padawan learner) & I dressed-up as his Jedi master: Jedi Elgee (my initials are "LG"). I really enjoyed participating in the forums, particularly the insight & intelligence of some of the other regular posters. I found myself really thinking about the books & themes in them, & shared these thoughts with Charlie & Brendan, who helped me find even more ideas & insights. Nearly 2 months into my participation in the "New Clues" forums I was utterly amazed to be contacted by a site administrator (known to all as "elf") & asked to be a moderator. Yikes!! It required 2 OS upgrades for my mac to actually do it, since I needed MSN instant messaging to communicate with the other mods & admins. Mugglenet web-wizard Damon vetted me through all this (in one long night- I was downloading the upgrades via dial-up! It took hours!!) & I officially became a mod on February 29th, 2004 (the day that doesn't exist... :). (Also, the same day as one of my future mod-friends, ridgeback, became a member of the forums- hi rb!!). I was one of the second wave of mods for the forums & at times if felt as though I was riding the ebb tide of retiring mods, pulling me backwards, because it was hard at first to know who to contact if I was having difficulty as some didn't want to give me the time of day, but I persevered & found an amazing core group of hard-working, brilliant online friends. I do mean brilliant- these folks were thinkers, & on slow modding nights we'd share our own theories & discuss them (I got really good at coping with real-time, multi-person typed conversations, too :). Other than being brilliant (& a bit obsessed), the other amazing things about my fellow mods was that they were predominantly female (I was expecting just the opposite) &, drumroll please, they were predominantly in their 30's & 40's, a bunch of them being in their mid-40's like me. Such a revelation... Those creative sign-in names were hiding a lot :) One of my fellow-mods was a double PhD in physics & chemistry (& a mid-40's mom with 2 kids :). Others were writers, students, retired folks, new parents :) We were also an amazingly international bunch, with mods from the Netherlands, India, Canada, & South America. I learned a great deal about the world just sitting at my computer :) Brendan would sit with me while I chatted online with a friend in the Netherlands who was studying physics at university & have conversations with her about string theory... Oh, & the dial-up finally gave way to dsl when Charlie realised that I couldn't mod during the day (for fear of missing a call from school about Brendan) & encouraged me to look into something faster & more convenient. Many of the online forums discussions became dinner-time discussions at our house. Brendan was incredibly proud of my being asked to be a mod (he now wears the Mugglenet t-shirt, sent to me when I became a mod) & couldn't wait to hear about the latest forums hijinks. In March of 2005 JK Rowling did an online chat on World Book Day & we had a forum discussing the answers to questions that were sent to her that day. One of the questions was "What is Snape's Patronus?", to which she replied that she couldn't answer that, since it was important to the future story (& we will likely find out today, after reading book7!). This question caught Brendan's interest, & he decided that Snape's Patronus must be a Dementor. I posted his idea in the forum, & the site admins loved this idea so much that they made Brendan an official mascot of the forums, naming him "The Crookshank" & sending him a certificate entitling him to participate in the forums whenever he wanted (as long as I was with him, there being an age-limit of 13 for participation in Mugglenet sites). He was soooo happy to have this recognition of his idea (& we were pretty tickled, too :). The spring of 2004 was also when Brendan began to develop the OCD, with increasing anxiety & dysfunction. He'd had his autism diagnosis for nearly 2 years & it never occurred to us that he'd ever have more than that, or that he'd add a few more diagnoses to the mix... As I became more & more worried & stressed-out about Brendan, the forums provided a welcome distraction, & my online friends provided much-needed support. As I shared, slowly, tentatively, that Brendan was autistic & had developed severe OCD, I heard about their children born with chronic heart problems, relatives & personal experiences with anxiety. It was comforting & empowering. People I had never seen (&, to this date, we've only ever met one of our online friends face-to-face, although we've exchanged presents & holiday cards) were like friends holding my hand. They were a big part of how I managed to survive those first few months of helping us understand Brendan's newest diagnosis. Perhaps the biggest encouragement, though, was an unassuming email that we received in June... Galadriel had put out a notice a few weeks before, asking for participants in a new book project, to be published by her company, Wizarding World Press. They wanted to put together a book of fan essays devoted to the mysteries of HP, so were asking people to send them proposals for these essays. The deadline passed before I could even summon the energy to think about doing one myself, since my kid was barely functioning at this point. Then, we got an email from elf asking if Brendan would like to participate in the project. He would be the youngest essayist, at age 8, & he could write on anything he liked, although they'd love to hear more about Snape's Patronus... Brendan thought about it & decided that he would like to participate, so he dictated a reply email to that effect (I learned later that one of the Wizarding World Press folks thought, based on Brendan's email, that he was in his teens rather than 8 years old :). This was an amazing thing for Brendan to do at this point in time. He was hampered by sometimes crippling anxiety, wasn't typing or even reading fluently yet (since he'd only had binocular convergence for 6 months or so, & his visual tracking skills were just as new). The last 3 months of 2nd grade he'd spent in a virtual (& sometimes actual) fetal position & none of us really understood yet what his prognosis was, OCD-wise. But away he went on his essay, with me along to help. He couldn't skim through the books himself, to find the info that he needed to prove his thesis about Snape's Patronus, so he told me what he was looking for & I found & bookmarked the places, which he then read for himself. He made lists, verbally, which I typed up for him. He developed a series of questions that he felt he needed to answer in order to make a good case for Snape's Patronus being a Dementor, then wrote expository paragraphs that answered his questions, & which he eventually put together as his essay. He had 2 weeks to do it (he had to finish early because the deadline was while we were on summer vacation), & he finished on time. He even added an intro section that explained how he'd been introduced to HP, which the WWP folks liked so much they asked all of the authors to do as well. After sending in his essay, life returned to "normal" (mostly learning what Brendan needed in order to live with the OCD anxiety). Brendan also finally read "Order of the Phoenix" that summer, having read excerpts to do his essay & not finding it too scary. We didn't think much about the essay until October 2004, when we found out that "The Plot Thickens... Harry Potter Investigated by Fans for Fans" would be published (appropriately) on Halloween. We got copies of the typeset essay for proofing & that just whetted our appetites. And then the box with our complimentary copies arrived :) We decided to ask Brendan's school to put out a press release, so that they would get the publicity, & all 3 local tv stations covered it, 2 sending cameral crews to school to film Brendan reading some of his essay & answering questions. He was a bit nervous about being on tv, so we role-played it the evening before (with dad as a deranged cameraman, coming in for closeups with his cardboard-box camera :), first with Brendan interviewing me, & then me asking him the same questions. It was great publicity for school & the book, too, & Brendan came through with flying colours :) We were very excited to see the book prominently displayed at our local bookstores, & it was out favourite holiday gift for friends & family (autographed, of course). We also learned that they planned to have a discussion forum for all of the essays in the book, & the authors would moderate their own essay's forums. Brendan was allowed to do this under his own name (he decided to keep "The Crookshank" as his sign-in), with the understanding that I would be with him while he was online. He had filled out all sorts of fun questionnaires for the book site & was really looking forward to modding his own forum. Many of my online mod friends were also authors of essays in TPT (there were more than 50 authors from over 10 countries, ranging in age from 8 to over 60...), & everyone very kindly included Brendan in online chats (& even sent him birthday greetings by throwing a virtual party) once the new forums were up. As it turned out, Brendan's forum didn't go up until about 2 weeks before "Half Blood Prince" was released, so there was alot of online excitement about the new book at that point (& the possibility of some of the mysteries being solved!). By this time Brendan was typing on his own & he typed all of his responses to comments & questions in his forum. We brainstormed discussion threads to put up, some serious & some silly, & figured out how to post polls on various topics. It was really fun :) The only concession to his age was a warning that I put in, explaining that the author was 9 years old & asking everyone to behave themselves- they did :)"Half Blood Prince" was the first HP book that we all read together (ok, so I read ahead) when it was released 2 summers ago. It took us about 2 weeks to get through it, & Charlie & I had to keep passing it back & forth when we got to the part where Dumbledore died because we were both in tears. The "New Clues to Book 6" forums started up in September, which I participated in as a mod again, & that extended our enjoyment of the book for quite some time. Eventually, though, people moved on to different projects, including the sponsors. I found my involvement in blogging & participating in the online autism community took more of my time, too, & drifted away from the online HP world (although Mugglenet is still my home page :). I know that many of my HP friends still keep up with us through my blog & I hear from them occasionally by email. I miss you all! You folks are the reason I survived that tough summer with Brendan to become a blogger & still-sane mom to my kid. Many thanks!!Oh, & Brendan's IRA...? Well, he managed to earn enough through his royalties from TPT that we could start one for him. (We basically matched the money & let him blow some of it on bionicles, too- kid's got to have some tangible reward for his hard work :) I can just imagine Brendan at retirement age, thinking back on his HP days... So that's how HP & JK Rowling changed the life of this family. I know that JKR has a copy of Brendan's book, since Emerson (the founder of Mugglenet) gave her a copy when he visited her for HBP's release. It's an autographed copy, actually. They asked all of the authors to autograph a pile of first-pages of their essays to be bound in special editions, for JKR & for each author. There were about 200 pages, I think, & I panicked a bit, since no way could Brendan sign that many pages... It was the first time that the editors of TPT realised that Brendan is autistic & was not just a super-bright kid :) We brainstormed a bit by email & elf suggested having a rubber stamp made of Brendan's signature (they even offered to pay for it, but it wasn't necessary). So that's what we did, & rubber-stamped "Brendan the Crookshank" on all those pages. And JKR has one of them... Sometimes I imagine that she might have come across the essay written by 8-year-old Brendan. It's a pretty amazing thought (makes me a bit teary). Throughout this whole experience, what has shone through for us & for Brendan are his capabilities. He wrote the essay at one of the most difficult times of his life to date & gained the joy & confidence of being a published author, a whole new online community of friends, & some cool legos out of it :) He found his writer's "voice" & it still shines through in whatever he writes. We have shared in this joy & are so grateful to JKR, GW, elf, & our many friends along the way. (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=749055 Sat, 21 Jul 2007 15:05:00 +0100 749055 http://lisa-jedi.blogspot.com/2007/07/just-ducky-days.html Here are a couple of pictures of the Pythagoras Switch-inspired, Rube Goldberg-type contraption that Brendan & Ck made last week.I was particularly inpressed by the row of dominoes that climbed a block staircase in order to push a Thomas-train down the track & launch the lego projectile-thrower through a hoop :)"Just ducky" is a pretty good description of how things are going lately. We've had 3 "Camp Ck" days so far & the guys are having a great time. Today they visited the science museum in the morning & took apart the old printer in the afternoon (I have yet to look at Brendan's room, but they did do the take-apart on newspaper, at my request, so hopefully there will be no maternal screaming when I do go up & look :). Over the weekend Brendan & Charlie spent a lot of time together. Charlie is borrowing a boat from a fleet member who can't sail this summer (having sold his right before we left for Japan & not found a replacement yet), so he went to get it on Saturday morning, to take it to the club & rig it & get used to it. Brendan originally wasn't interested in going with Charlie, but when the idea was offered of fishing down at the club while dad worked on the boat, Brendan went for it. He hasn't been fishing since we got home from Japan & was ready to get out there (the fish are trembling :). He had a pretty good time, according to Charlie, even though the fish weren't biting. Of course, there was a side-trip for fries & a shake, which always sweetens the deal :) Later, when Charlie detailed the day to me, he mentioned that Brendan did spend a fair amount of time sitting in the car, which surprised me a bit. Basically, when the situation turned social (while picking up the boat, etc.) Brendan opted to sit in the car. Charlie said he seemed perfectly happy in there, & his anxiety when out of the car wasn't very difficult to manage, so I suspect that letting Brendan choose when & how to be social (as much as we'd love him to increase social contacts) is teaching him more about self-regulation than just upping the social expectations would ever do. They had so much fun on Saturday that Charlie proposed a fishing trip in the boat for Sunday morning. This was no small undertaking, seeing as we're talking about a 15-foot sailboat (not a motor boat) that's built for racing, not for leg room :) Charlie managed to stow not only Brendan's tackle, but lunches, snacks, & an anchor- pretty darned good. They had a nice sail & then anchored in a cove for fishing. The only problem was that Brendan is accustomed to casting while standing up, & Charlie wasn't quite sure he'd manage to do it standing up without falling out of the boat... He did (manage it). He was also wearing his life jacket, & is a deep-end, Y-certified swimmer to boot, so the potential for disaster was minimal. Brendan was happy to catch 2 little perch before they sailed back to the club. I am finally caught-up enough with coming-home stuff that I actually found myself at loose ends on Sunday morning. I was too tired to go to church & had a nice veg instead (Charlie pointed-out later that I'm allowed the occasional veg... :). It felt weird, & it made me realised that I'm a bit at loose ends. Before we left for Japan I managed to finish a lot of projects, which leaves me facing a creative void right now. It's not a comfortable feeling at all. I've been playing around with the origami books I got in Japan & also making lavender bottles- an old-timey craft in which you take an uneven number of fresh lavender sprigs (with long stems), tie them together right under the flowers, bend the stems down over the flower-portions, & then weave ribbon around the stems to capture the flowers inside. They end-up as lavender sachets when dried. I had given my last ones away in Japan & wanted to make some more but over the past few days, every time I decided I had a few minutes & went to collect some lavender stems, it would start to rain. Really, it became pretty funny. On Friday I finally got to do it, although it did sprinkle on me as I collected the first bunch for weaving. I continued bit by bit on Saturday & Sunday & have a bunch drying now, ready to be gifts in the future :) It's really hard for me, though, when I don't have a project in the works. I've realised over the years that I get the most pleasure out of life when I make things (particularly gifts), so I need to get my act together & start planning.Sunday afternoon Ck came over so Charlie & I could go to our sailing fleet picnic & it was fun to share pictures from Japan & chat with folks. Charlie & I arrived in our yukata (cotton kimonos) from Kyoto which was pretty funny. Brendan & Ck went out for pizza among other activities & Brendan, of course, had a great time. When Brendan is with Ck, we've noticed that his anxiety is much lower & much better controlled than when he's just at home with us. Charlie & I have been discussing this (& Brendan & I saw his psychologist last week, too, & discussed this phenomenon with him) & we feel as though this is a break-through sign. Brendan is definitely better able to handle anxiety since we've been home from Japan. Perhaps it's because we brainstormed so many new & different ways to deal with it while we were there, & now he has an even bigger repertoire of coping strategies than ever before. Maybe it's just that we were out of our rut & could see the world (including anxiety) in a different way. Brendan definitely still suffers from the anxiety, but it's a lot more predictable. He has trouble leaving the house without a context or specific motivation. If we plan to walk in the morning, or walk to a restaurant for lunch, he can do it. If we decide on the spur of the moment to take a walk after dinner, he can't. he says he needs advance notice, so we're working with him & trying to do just that. At home, he's most susceptible to "fleas" (OCD thoughts) in the morning when he wakes up & in the afternoon, between 4-6:00 (always the "witching hours" for him). Sometimes we can set a ki barrier & he's fine & sometimes he's paralysed by anxiety & literally needs a push (gently :) to get moving or do something distracting. Yesterday he couldn't get rid of them until he was eating dinner & then they were gone like magic. That said, after waking me up a couple mornings ago because of "fleas" (needing my help to cope with them) & then apologising afterward for waking me up, the next morning he told me that he'd had fleas again that morning, but he was able to take care of them himself. This is the biggest change we've seen yet, in dealing with the OCD. He's been able to find strategies to deal with them, with our help, & then much more quickly than ever before, learn to use them on his own. It feels huge. I feel like I'm holding my breath, too, hoping that things will continue in this way. Pretty amazing- & another good reason to go out & see the world :)Yesterday morning we had our walk after breakfast (it's still been pretty cool here, after last week's horrid hot days) & then had a tough time working on our weekly schedule. Neither of us was motivated... We decided to read together one of the Kamen Rider/GekiRanger magazines that we picked up in Japan & call it japanese practise :) We also decided that it would be a good day to go out for japanese for lunch, since we have both been missing the great food in Japan. We walked to our fave restaurant, just about 10 minutes away on foot, & had a lovely lunch. On the way back home I noticed that it was getting cloudy... by the time we were a block from home it was sprinkling, & we sprinted that last few houses, Brendan giggling like mad because he's faster, & me yelling "choto mate!" ("wait up!" in japanese :). We'd left the japanese magazine on the dining room table & so we decided to spend the afternoon doing one of the projects that came with the magazine- construct the Kamen Rider "Climax Form" belt & cell-phone-shaped activator. Many manga & kid-oriented magazines in Japan come loaded with "omake", free gifts. These are sometimes actual toys & stuff, but also have cleverly designed cardboard pop-outs to construct into working toys. They come with everything but glue or tape- this one came with the bits of velcro, rubber bands, & other odds & ends needed to make the toys. We had a great time working together & the belt can actually be worn (there's a cardboard buckle that attached to the rubber bands on the belt). Brendan, who usually doesn't like craft projects, was very motivated to participate in this one, so it was a lot of fun. We chatted while we worked, on a project we'd started thinking of that morning- making a wall hanging out of the dragon pictures we took in Japan. He likes the idea of printing the photos on inkjet fabric & then piecing them together (choosing a co-ordinating fabric) into a hanging for his room. I got a walking foot for my sewing maching a few months ago & have been wanting to learn to use it. Looks like a good creative project to get me back on track :) Brendan has been wanting to sew again, & since it's all straight seams he can do a lot of it. We'll let you know how we progress :) (Source: Life in the New Republic) Life in the New Republic blogs http://www.medworm.com/rss/comments.php?id=740500 Tue, 17 Jul 2007 20:17:00 +0100 740500 http://lisa-jedi.blogspot.com/2007/07/rediscovering-our-rhythms.html Well, we seem to be more than halfway through our jet-lag adjustment, although it still hits at unexpected moments (with sudden exhaustion or ravenous appetite attacks). Brendan, I think, has done the best job of readjusting, with Charlie coming in a close second- but then, he had 2 days to get his act together before going back to work last week, so it was kind of necessary, poor guy. Unfortunately, about the time we all felt like getting out & getting some exercise this past weekend, it started to rain, then the heat kicked-in. I thought that southern Japan would have gotten us acclimated to summer heat, but that wore off pretty quickly. The past 2 days it's been close to 90 degrees (or over) outside, so we've only been venturing out for necessary trips in the car :( A good thing was that Charlie convinced Brendan to go swimming Sunday afternoon, so at least they've gotten some exercise. (Brendan has become somewhat agoraphobic since coming home from Japan, so this was a big deal.) My brand-new bathing suit is on the slow boat from Mizumaki to our town (jettisoned as unnecessary baggage after our trip to the onsen), but I've promised the guys I'll go swimming with them when it arrives. The other fun thing that happened Sunday afternoon was that our college-age friend Ck came over to dinner so that we could plan "Camp Ck" together...Most summers we have "Camp Mom" interspersed with 2-3 weeks of summer camps for Brendan- computer camp or the programme at the science museum. For various reasons, all of them seeming quite reasonable to us, Brendan didn't want to do any of the summer camps, but this left us with the dilemma of finding mom-time throughout the summer. After we brainstormed ideas, we decided to ask Ck, who has been a favourite sitter of Brendan's since Ck's freshman year of high school (& whom Brendan missed very much this past year, Ck's first at college) to do "Camp Ck" 2 days a week. He had been looking for summer work & decided that this would be a good start :) so this week saw the beginning of both "Camp Mom" & Camp Ck". When we discussed the summer plans with Brendan before leaving for Japan, he became decidedly "moofy" at the thought of yet another summer with a daily schedule of activities. He, of course, would be perfectly happy to play Adventure Quest & Dragon Fable all day, interspersed with movies & lego-ing. We started the daily summer schedule thing 4 or 5 summers ago, at the recommendation of Brendan's psychologist, to help him learn to self-regulate & to give us both a sense of accomplishment over the summer. It's ended-up being summer homeschooling, really, & I have felt very good about doing it. He's always retured to school in the fall with little loss of skills & the transition to a school schedule has never been a problem since we've kept to one over the summer. In fact, Brendan basically learned to read over the summer he was 8, since that's when his visual abilities really kicked-in, & thankfully we were ready to jump in & facilitate. We've done so many fun projects over these past summers, too, which has made the time really memorable. Two summers ago I taught Brendan to weave on the small loom & he wove scarves for his dad & grandparents as Christmas presents. Last summer I taught him to use the big loom & we wove a blanket! Needless to say, I'm convinced that continuing with this summer scheduling is a good thing, but Brendan... took some convincing. It wasn't hard to get him to agree to reading every day (especially when he realised that he was behind on his manga reading :). And, when we came to actually plugging things into our weekly schedule on Sunday evening, I acknowledged that he's older now & can handle more free time. So we put in more free time, such as half an hour before lunch & from 4:00 to dinnertime, & that seemed to satisfy him very much (I think that the acknowledgement did more than the actual extra time :). While Ck was over to dinner on Sunday we brainstormed a list of things they could do together (including field trips, since Ck drives). In the evening I typed everything to post on the fridge & Brendan & I set our schedule for Monday, Wednesday, & Friday of our first week. It probably helped that we had appointments first thing Monday morning & at the end of the day as well (been away 3 weeks, you know!). Brendan participated in the scheduling with little sign of "moofiness" about it all. So yesterday, after a bit of misunderstanding about what each of us thought the words "come down now & eat breakfast" meant (I could hear obvious sounds of playing upstairs...), we were both on track for my first-thing (& much-needed) appointment with the chiropracter. Brendan does really well when we visit her office & we brought one of our japanese magazines (featuring the Kamen Rider & Geki characters) to read to each other in the waiting room. It was fun to tell her about our trip, too :) Then, since we were out, I planned to do something we've never done before... take Brendan shopping for shoes. (Did I ever mention that we left Brendan's sneakers in Tokyo after our first week in Japan? We didn't even notice until we were packing for Kyoto, & he was outgrowing the sneaks, anyway, but it's left him without anything but sandals to wear...) It didn't hit me until afterwards that Brendan had never been shoe-shopping before. Until recently I could just buy them through Land's End & it was a pretty good chance that they'd fit. But he's now at the very end of the youth shoe sizing & has a wide foot as well, so I didn't think we were going to get away with the long-distance thing any more. The main hazards I envisioned for shoe-shopping were the strong smell shoe stores often have, crowds, & his being t