Thursday, February 14, 2008

"Too open" about it...

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!!

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Sunday, February 10, 2008

Lightsabre pics...

... 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... :)

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Thursday, February 07, 2008

Fifty is fun...

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!!

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