Wednesday, August 16, 2006

Encouraging words...

Today was another busy, get-ready-to-go-on-holiday day. C very kindly & wisely scheduled the whole day off, instead of working 1/2 the day as usual, which made things so much easier. I had to do some major shopping (school & vacation prep) & it was nice for both B & me that he could stay home with dad :) While shopping I reflected on our dinner last evening with good friend Paula & her son, Ck (to distinguish him from dad C), who is headed for college next week. In yesterday's entry I mentioned B's difficulty making a going-away card for Ck, who like B has Aspergers, & is B's mentor, buddy, & main kid-sitter. B managed to compose a chatty card, including his address so that Ck can write to him, but felt it wasn't enough. I suggested that maybe B should put together a unique lego minifigure just for Ck that he can take to school for him, to remind him that B is thinking of him. B jumped at the idea & carefully constructed the figure, blond like B, with a backpack (plus an antenna) & carrying a letter from one of the Harry Potter sets, to remind Ck to write. Ck seemed very pleased with the card & minifigure & he brought B a going-away gift of some Pokemon cards :) Paula & I chatted a bit before we went out to dinner, & she mentioned that they had cancelled a camping trip planned for the week before, which surprised me. She said that the closer the time came to get ready for the trip, the more agitated Ck had become, until he finally broke down & told her that he didn't want to go. They had been travelling quite a bit that summer, including a trip cross-country to his new school to get him registered, & when they weren't travelling Paula was busy getting ready for taking on a new position at school (she's on the faculty at B's school). Ck was worried about the fact that she'd put a deposit on the camp site & would lose it if they didn't go, but he just didn't want to zoom around any more this summer. Her response was "it's only money..." & assured him that his sanity was more important than the deposit. They stayed home & had a nice, relaxing time. Paula's words made me think of the mental games I've played with myself in the past over money issues. I have felt at times that my twice-monthly appointments with my therapist were too expensive for our budget, particularly with B's need for adaptive devices, therapies that are not covered by insurance, or the large co-pays for some of his specialists. I've had myself convinced at times that I was too expensive for my family to afford... That seems pretty silly, though, when I think of how important my mental health is to the functioning of my family. Paula's "it's only money" seems a very nice phrase to remember when I get squirrelly about taking care of my own needs.

It was natural to be thinking about therapy today, since I had a regular appointment with my therapist (aka "my high-maintenance girlfriend") this afternoon, which was right after C & I had an appointment with B's psychologist. We meet with B's psychologist, Dr. M, about once every 2 months (B sees him monthly) to check in on B's progress & to get advice about specific issues that come up in daily life with B. I had taken B to see him just this past Monday, & had briefly mentioned the newest meltdown behaviours to him before their session. Dr. M said that, unlike most of their meetings where B is pretty active & they kind of chat around all of the activities B likes to do in his office, B had sat in a chair & just talked with him for most of Monday's meeting. They discussed school & OCD & Aspergers & Tourettes & black holes & how Stephen Hawking manages to speak through a computer interface, among other things. Dr. M had been very impressed by B's focus on their conversation & also by his willingness to talk about his "conditions" (B's word for the AS, OCD, & Tourettes). He said that he feels B is developing a positive identity as a person with autism, & that B clearly feels that the autism is part of him & that he has no interest in getting rid of it. Dr. M was very pleased by this & said that it's pretty uncommon, in his experience, because so many families are ashamed of their child's diagnosis(ses). He believes that a positive self-image is key to B's learning the skills that will allow him to weather the difficult adolescent years. C & I were very encouraged by these words. We have seen evidence of B's comfort with himself all summer- sharing his Tourettes diagnosis with his summer camp couselors so they'd understand his tics, doing the same with the kids next door when they asked him about his tics & then explaining the AS for good measure- but it just plain felt good to hear confirmation from a professional :) We also discussed that B really is beginning to move into pre-adolescence, which is all about developing a separate identity from us & figuring out who he is & will be. We talked about how difficult this stage can be when he needs us so much to help him self-regulate when challenged by the OCD, or frustration, or sensory overload. The discussion of this separation carried-over into my session with my own therapist. I recalled my difficulty coping with B's inexplicable behaviour when the OCD first hit & how overwhelmed I was for so long. I realised that I have developed a sense of compassion for B over these past 2 1/2 years, not pity or sympathy based on fear for my child, but compassion for a person going through a difficult experience. It's an amazing difference, this feeling. I still do feel fear sometimes, fear that B will hurt himself, fear that he'll have to be hospitalised because he's hurting himself... but as we weather each meltdown & OCD freak-out I get a better feel for watching & waiting for B's cues as to what he needs. He gets better at telling us what he needs, too. I feel less like I have to control what's happening & more trust that he'll come out of it ok with just my attention & compassion. My therapist & I also talked about the ultimate result of B's growing-up into a separate person, & I realised that the goal is for him to become an adult member of the family. It doesn't mean he's leaving me by growing up, just that our relationship will change as he needs me less for self-regulation. It also means that I don't have to have an image of the adult B in my mind in order for him to become an adult. He has already taught me that he'll become the person he will become, not the person I envision. He will get as far as he will get, & we will still be family. These were very comforting thoughts.

I guess this is a good place to be, emotionally, a couple days before taking off on vacation :) Changing location is always stressful for B, & therefore for us, but it's good for us to go anyway. We are going to a place we've been 3 times before, which makes it alot easier for B to make the transition. Tomorrow we will grocery shop, bake, & pack. Friday morning we will go!

PS: I am proudly flying a new banner, having just been added to the Autism Hub! Many thanks to Kevin for accepting my blog into the Hub. I am looking forward to being part of this group :)


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