Talking & thinking about my kid...

Well... two days & counting with no melt-downs. A subtle behavioural difference I've noticed over the past couple of days is that Brendan is more verbal than usual (which is saying a lot), so it's possible that he's talking-out his feelings rather than letting them simmer & then erupt. He's also had a slight/accelerated version of the virus that's been going through school, with stuffy nose & what sounded like a spectacular cough yesterday morning, but subsided after one dose of Robitussin... The closest he's come to meltdown since Tuesday was after a wonderful visit from friend/mentor Ck, who had jaw surgery to correct a serious underbite a week before. Ck is 19, a veteran of spinal-fusion surgery, & young enough to bounce-back quickly, but his recovery has seemed really spectacular this time. He & his mom, Paula, came over after school, partly because they knew that Brendan had been worried, & although Ck seemed quieter than usual, he perked-up quickly when he saw the trains set up in the living room. Trains were one of Ck's earliest perserverative interests & I can remember him at age 4, decked-out in full engineer's kit day after day. His grandfather gave loads of trains, all sorts of gauges, that he still has today & he & Brendan made a date for this summer to get his trains out & have a blast :) After they left Brendan was pretty depressed, particularly at the prospect of not seeing Ck again until March, which is his next school break (he's in Iowa for college). He snuggled on the sofa right next to me & processed for the next hour, sometimes sad & sometimes angry, coming just about to meltdown pitch & then backing off. I spoke gently to him, validating his feelings & talking about ways he can stay in contact with Ck & remember him while he's gone. It's just not the same, though, as being with a friend. After that hour he was ready to go upstairs & play ExoForce with dad, & had a pretty good evening after that. I can't help but feel proud of the work my kid is doing, sorting through & managing his feelings.

Yesterday I finally did something I'd been hoping/wanting to do since I gave my autism sermon last November. Our church co-sponsors a weekly radio programme with the other Unitarian Universalist Church in town called Life Now Radio & yesterday I was interviewed about being an autism mom for a show to be aired on January 20th. I was interviewed by a friend whose daughter is in Charlie's Sunday School class, so it was really very much a chat, rather than a formal interview. There were questions, which I hadn't seen ahead of time, but they were questions informed by our friendship, & to be honest, I had been thinking so much about what I wanted to say that I was able to bring a great deal of my "posautive" message to the discussion without any leading questions. It will be interesting to see how the edited version of our chat comes out- I never really gave an overview of our life or of Brendan's specific manifestation of autism. It really was a slice of "life now" perspective. On the other hand, there was a nice element of the interviewer knowing Brendan & bringing her positive view of him to the chat, which made it feel very comfortable & almost more respectful of him that just me talking about life with him, at least in retrospect. I'll post the link when the cast goes up... fingers crossed!!

Two days prior to the interview I had a very interesting experience that gave a new dimension to the message I’ve been wanting to get out to the world. I had my first up-close-&-personal exchange with a seriously biomed autism parent. It feels a bit odd to confess that I've never had such a dialogue before, but so far the only autism parents we have met (& gotten close to) are those who share our perspective of working with, rather than against, out children's autism. For quite some time I'd been wanting to touch base with a mom at school whom I greet at the door daily, whose son's receives physical therapy at school. It reminded me very much of Brendan getting PT in kindergarten & I wondered if her son was also autistic. Wanting to network, I had been trying to think of a way to engage her in conversation & Tuesday morning I had my chance, since she was hanging around to accompany her son's class on a field trip. After working my 5th-grade-son's autism into the conversation & perceiving that her interest was piqued, I went on to talk about how we've been working to give him a positive perspective on his autism. Her response brought me up sharp- she told me that she hates her son's autism & would do anything to get rid of it... Thinking quickly, I asked her what led to this feeling & she described a typically developing child who became very ill at age 2 & stopped talking. Taking him to a GI specialist at a major research hospital, he was diagnosed with a GI disorder that required surgery & involved the removal of polyps- which she was told were "full of live MMR virus"... which they attributed to her son's development of autism. When discussing this with Charlie later, he was sceptical that any doctor would have found or told a parent something like this. I don't know what I think. I did tell her about our journey, & that it had been clear to us from day 1 that Brendan was different, that he'd never experienced any regression & that his learning patterns at this moment are remarkably similar to those he had while learning to walk at 13 months. When I mentioned Brendan's Tourettes she immediately asked me if we were trying Omega3 (?) & something else... I explained that we read pretty much all of the scientifically-based papers on treatment options as they come out, but are pretty conservative when it comes to biomed interventions because we haven't seen much in the literature that makes us want to try them. As we talked, we conceded that there may be different things causing autism, resulting in our radically different experiences with our children. I was left with a lot to think about. I definitely believe that this mother wants the best for her son. I am worried, however, because I believe that children have an uncanny knack for picking up on adults’ feelings about things & projecting them on themselves, & I worry that "hating" your child's autism, no matter how much you love your child & behave as though you love them, may give subtle, negative messages that the child may internalise. This is one of the concerns that has turned my thinking around concerning Brendan's autism, & one reason we do not use "fighting words" when it comes to discussing any of his diagnoses. In either case, it was a very eye-opening encounter. It put a human face on "biomed" (for me), for one thing. For another, it has helped me to understand that my own particular, positive perspective has come not only from my experiences with Brendan, but from my own spititual journey to live consistently & positively. This is why, as whimsical (to put it mildly) as it may seem to refer to myself as "Lisa/Jedi" & to have a Star Wars theme to the blog, it it also a serious & life-affirming way for me to frame my way of thinking about life & my kid. So far, it works...