Tuesday, November 07, 2006

Achieving balance...

The concept of keeping life in balance came up yesterday for both B & me. Just after updating the blog yesterday I went to see the rheumatologist who's been looking into some joint pain & swelling that I've been intermittently having for the past couple of years. As I mentioned yesterday, I had discovered that this doctor had said in his report to my internist of his initial appointment with me in September, that my relationship with B was "difficult" & recommended anti-depressants. This had left me feeling not only angry that he'd completely misunderstood why I'd brought B into the discussion (to illustrate why I really need to maintain an optimum level of functioning- duh!) but also angry that he seemed to view me as a "depressed housewife". In the time between my appointments with him he's heard not only from my internist (who let him have it, as far as I can tell :), but from C (who was concerned by his lack of communication with me as well as his obvious misunderstanding of some of what I'd said). We had also spoken by phone, in an attempt to clarify some of what he'd said in the note to my internist. So I was feeling a bit better about going to see this doctor again, but also looking for an opportunity to set him straight about my relationship with B without seeming too confrontational. The opportunity arose in a discussion of how I was managing life, to make sure I wasn't stressing myself too much. I told him that "The great thing about my son is that he's taught me the importance of maintaining balance in my life." I went on to explain that having a kid with special needs has been the inspiration for really looking at how I use my time & how I live my life. I can honestly say that I am functioning at the best & happiest level of my whole life right now, in spite of or maybe because of the challenges of raising a child with autism. The doctor got a funny look on his face at that point. Not disbelieving, really. A surprised look, as though I'd said something he'd never contemplated before. I felt that I might just have got through to him. The upshot of yesterday's appointment is that, on top of degenerative osteoarthritis, I have fibromyalgia. The only real treatment for this is exercise, which is difficult because of the osteoarthritis. So I have some decisions to make- how far do I want to pursue treatment? Can I envision myself with a personal trainer (which would be the only way to safely do the exercise...)? There's no pressure at the moment to make decisions (the swelling responded to the herbal tinctures I made last summer, so I'm pretty comfortable for the moment). Some other factors that we didn't really address are how much is the peri-menopause affecting all of this, since both C & I are convinced that the hormonal changes must be playing a part.

The bottom line for me, in the aftermath of facing these issues affecting my health, is that I need have energy to deal with the ups & downs of life with B. When I focus too much on my physical stuff, I lose my focus with what's happening with B & that's not good. I'm not saying that I want to/should ignore my physical health (that would be really dumb), but that I'm finding it very draining to dwell too much on my stuff. So I'm trying to keep it on the middle burner (to twist a phrase) while keeping my focus on day to day life. Which is essential, since I literally never know when B's going to be ok or when he's going to need a lot of putting back together.

Yesterday, just before I left to pick B up from school, I got a call from Cherie, his consultant teacher. She began the conversation by assuring me that B was ok, & then told me that B's psychologist, Dr. M had come to school to visit that afternoon. She was a bit apologetic, since she hadn't told us he was going to be there (in case I wanted to be there, too), but said that the visit had gone really well & that they'd set up a follow-up team meeting for the end of the month on a day she'd thought would work for us (it does). She said B was delighted to show Dr. M around the school & that Dr. M seemed to enjoy seeing B's school. She also said that B'd had a great day in general & that the main purpose of her call was to iron-out some details of the new daily schedule they'd worked out for B. The main goal of the schedule is to identify the times in the day when they would like B to be in the classroom participating with his class, & the times when he has choices about what he can do. There are boxes that get checked off when he succeeds in staying in class, & Cherie was wondering what might be an appropriate reward for the days when he gets all his boxes checked. I immediately thought of B's current effort to earn $20 so he can buy a membership at Adventure Quest (which will allow him to progress to higher levels). So I proposed that he earn 50 cents every day that he gets all the boxes checked. I thought it would be a good incentive because he has other ways of earning money towards this, like using his allowance, which could take the sting out of the days when he doesn't get all his checks, & Cherie said this sounded perfect. When I got to school to get him he was looking kind of stormy, but wasn't ticcing or anything. I asked him how he was & said "tics". He asked me on the way out to the car about the incentive system, & while we were driving home I explained what Cherie & I had agreed on. B flipped out. He moaned that this idea left him feeling like there was a "heavy weight on his chest". I told him that this wasn't the only way that he could earn money for his membership, which we'd hoped would take the weight off him instead of adding it. He became angry & sarcastic, & said he didn't want to earn anything. I was at a loss... but I said he didn't have to earn anything at all. I told him I didn't understand why he was having such a negative reaction & he said something about having too many tics that day. So I told him that Cherie had told me he'd had a great day, that his visit with Dr. M had been really good & there'd been a lot of nice things that day. He said that having a few minutes of tics ruins the day for him. All of a sudden I felt really overwhelmed & sad & even a bit angry. This pattern has been occurring over & over since school started. Cherie tells me he had a great day, but he dumps all sorts of negative stuff all the way home. How do you help a 10-year-old get a sense of perspective on his life?

By the time we got home we were both in tears. We decided to sit on the sofa & talk. B just looked depressed to me. I told him that everyone has good parts of the day & bad parts, but that it's really important to look at all of the events that happen in a day to help get a sense of how it really went. I asked him to think of it as putting the things that happen on a balance, & then see how the balance tips. Then he can know if his day was a good one, or an unpleasant one. I told him that having negative feelings when the day has pretty much gone well is not an emotionally healthy way to live... To my surprise, B began verbally sorting through the events of the day. He said "morning work- that was ok, lunchtime- yeah that was fun..." and so on through the day. Then, he moaned & fell over on the sofa saying "I'm an idiot!" Although I was glad that he'd realised that the balance of the day really was weighted toward the positive, I was sad that he felt like an idiot. I told him that everybody is growing & learning & changing all the time. That having a positive attitude toward life is something we can learn, that we can train our minds & thoughts (I distinguished this from OCD thoughts) so that we have a broader perspective on life. I told him that my grandmother, whose maiden name is his middle name, always said "where there's life, there's hope". This made both of us cry a bit, in a good, sharing sort of way. Then we both blew our noses messily, repeatedly, & both grossed-out over the mess. It was like a cloud lifted, & then we were goofing on each other's messy kleenexes, & he was trying to give me his yucchy kleenex & we were giggling. He ran & got his InuYasha hat & asked me to say "osowari!", so I obliged. And the next thing I knew we were eating snack & watching some more InuYasha (I had decided that the first movie would be ok for him).

The rest of the evening was pleasantly uneventful. This morning B slept right to the alarm again (C & I have decided that we're going to cut back on his seroquel again, in the hope that he'll regain the early morning time to himself that he loves so much), but he was in a good mood & got dressed without any hitches. He put the InuYahsa hat on for breakfast & was great fun to be with. It feels as though we've talked through something important & now the air is cleared. B had a fine day at school & I not only managed to fit voting in between appointments & school, but my best friend from Buffalo, Roo, came to visit for the day. We went had a high tea-type lunch (complete with little sandwiches & scones) & visited a favourite shop before picking B up from school. B got all of his checkmarks on his schedule today & told me that he wants to earn the 50 cents as we'd discussed yesterday, so I marked it on the tally we keep on the fridge. He showed Roo some Weird Al videos before she had to drive home, & then we watched the 2nd InuYasha movie (the 3rd is too intense right now, & he accepted this with good grace).

Life feels as though it has regained balance. If we can continue to help B get a broad perspective on life I think it will be a powerful tool for helping him cope with adolescence, as well as continuing to deal with the OCD. Life really feels good when there is balance...

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