Mixed Emotions

photo-Buddy Boy on a zip line


Tonight we went to a gymnastics event. It was a fundraiser for Autism Speaks (indirectly). The fundraiser was sponsored by Buddy Boy's school, who sponsors a team annually for the Autism Walk in our town each year.

The walk used to raise money for NAAR (National Alliance for Autism Research). NAAR is one of the organizations that Autism Speaks has merged with/absorbed. Thousands walk each fall in the annual Autism Walk, and it's a big deal. Teams walk and raise money thru pledges and other events, such as the one we attended tonight. Now that NAAR has been absorbed into Autism Speaks, the money goes to them to sponsor research.

Like many, I don't feel that "Autism Speaks" for me. They propagate a message that portrays autistics (my son included) as a damaged, hideous individual, who should have been prevented if possible. There are certainly some within Autism Speaks who do not feel this way, but their videos are denigrating to autistics, to say the least.

The event tonight was sponsored, like I mentioned, by Buddy Boy's school. Buddy Boy is in a special ed class (with a minimal amount of "push in" time into a regular class) at a regular public school. The school as a whole sponsors a team for the Autism Walk each year. I'm sure that the majority of the people that are on the team are good, well meaning people. And if all the money raised goes to legitimate research, I wouldn't have much problem with it (though I do think more money needs to be spent on education, and less on research).

Most of the people I know locally in the "autism community" are nice people. Sure, some of them are into biomedical treatments (I don't know of any chelators or HBO users), and many still feel (from reading a local listserve) that thimerasol/mercury is the primary cause of autism. But most are very similar to the majority of parents I know thru this blog, working every day to take care of and educate their kids, and fighting the same battles with the school system as we do.

So it's with mixed emotions that I go to events like tonight's. It cost us only $10 a person for each kid (parents were free). The gymnastics center donated their space, time, and personnel to assist in the event. The kids have both taken classes at this facility, and I knew that they'd have a good time (they actually both had a great time). And it's a nice way to socialize with some of the other families in our community (like many, socializing of any sort is rare for us). Just being able to get out and talk to others in similar situations to oneself is somewhat cathartic (it's almost as good as blogging :] ).

But everywhere I look during this "Autism awareness" month of April (here in the states) it seems that the predominant image I see is that of Autism Speaks. The majority of events that are fundraisers seem to be raising money for them. And their message is not the one that I'd like to see be the predominant one when it comes to how autism is represented to the community.

Perhaps as Autism Speaks matures they will come to have a more inclusive and positive message. But until then I have to decide if I will walk in the Autism Walk this year. I'm thinking that I probably will (to show solidarity with local families), but if I do I'll then have to decide what t-shirt to wear for the occasion. Depending on my mood, I could go for either one advertising autism-hub, or if I'm feeling more radical, make up a custom one with "Exclusion=Extinction" stenciled on it (as suggested by Zaecus Celestis in a comment to this post)

A Sunny Day

Although it's a bit cold in the middle of the US right now, the last few days have been sunny.

If left to his own devices, Buddy Boy would spend the majority of his time in his room building things. He just loves to build. Towers, water treatment plants, houses for animals to live in, garbage dumps. He builds with blocks, magnet sets, K'nex, and Tinkertoys. He is most prolific (and creative) when using paper and tape. He's made space suits and sea scapes from just white paper and tape.

We love that he loves to build, and we encourage it (as well as play with him and encourage him to play with his younger sister, Sweet Pea). Bu we also like to get him out doing more active things, for physical exercise and coordination (which he has some issues with), as well as for the whole socialization aspect of it (working with a group, taking directions, interacting with peers). As his school thus far has not seen fit to provide him with any inclusion, we think it's even more important that we provide some.

Buddy Boy has historically not been really happy partaking in group activities, or even individual sports type activities. Oh, he'll go on a bike ride with me with some cajoling, and sometimes even willingly, but it's far from a preferred activity. Swimming lessons and gymnastics are even tougher. Presently he's only in a Saturday morning swim class, and no gymnastics at the moment (due to no current class fitting his schedule). Once we get him going with these activities, he's usually OK (partaking for significant portions of the class, only occasionally having to sit out portions of the class in order to regroup). But the first time he goes to one of these activities is usually frought with moderate to major resistance on Buddy Boy's part. Reaction on his part usually involves such comments as "What were you thinking? How could you do something like this to me? You're so mean to me". Of course, once the class is over he's usually OK with having gone to it. And sometimes even admits it was fun.

Experience has taught us that the best way to introduce an activity like this is not to start talking about it days ahead of time, but instead to just introduce the idea 30-45 minutes ahead of time. So Liz signed up Buddy Boy for a class at a local "kiddie gym". This place is run by an OT who runs several classes throughout the week. Many kids on the spectrum take these classes, but there are also several NT kids in her classes.

Well, Liz picked up Buddy Boy from school yesterday, and gave firm instructions to Sweet Pea beforehand not to announce it to Buddy Boy (as she would have almost certainly said something in a sing song voice like "You're going to the kiddie gym, and you're not going to like it"). So Liz announces to Buddy Boy, "I've got a surprise for you! You're going to the kiddie gym today for a class!". And Buddy Boy said...

"OK".

And he went, didn't have big problems with separation, and participated in the majority of the class without a problem.

Sometimes the littlest of things can make your day sunny.