Autism is an Unexpected Party
For some reason, I've been reading a lot of negative and depressing posts about autism lately. I'm guessing this may be because Extreme Makeover Home Edition is coming to my hometown, and since Jenny McCarthy is coming to Knoxville
as part of that project, the word on the street is that the initiative will be helping a local family that's affected by autism. This has reignited the local branch of the "vaccers vs. anti-vaccers" debate, which has been part of negativity, and has also brought attention to some very real problems that many people in the community are currently dealing with, such as a single mom being evicted from her apartment because of her autistic son's noise disturbances
Don't get me wrong -- it's good that such a big media event is bringing attention to these issues, and it's good to have these debates and conversations in a public forum. The minister of my church, Rev. Chris Buice, said something in his sermon last Sunday that I feel would be especially applicable to these discussions:
"So much of what passes as dialog in our culture is really about defeating an opponent, humiliating an enemy, destroying an adversary, winning an argument, instead of winning new understanding, winning new awareness, winning new friends."
And there's the meat and potatoes of the issue for me. I live in Knoxville, Tennessee, and I try to be as involved with the local autism community as possible. However, I have very strong ideas about vaccination that I've discussed elsewhere
, and I also tend to see autism in a very positive light. Sometimes, this puts me a little at odds with others in my community. I can't help that there's a part of me that becomes extremely unnerved with the "message" of the media and mainstream opinion tends to focus "the tragedy of autism" without giving equal voice to the joys, triumphs, and celebrations that are also a significant part of this diverse and intricate autism spectrum.
So, in the interest of "winning new understanding" and "winning new awareness," I thought I would take a moment to celebrate three things that I am extremely grateful for -- things that are often complained about in public forums, things that are often seen as problematic for autistic people. I have no idea how much of my daughter and I's experiences have to do with keeping a positive, cooperative attitude, and how much it's all just "dumb luck," but I do want to preface that I know my experiences aren't necessarily the norm -- which is precisely why they need to be shared.I am grateful for my daughter's school system.
Ever since we moved to Knoxville, I have really had very few complaints about the Knox County School System, the accommodations they have made for A., and the way they've made sure she's received her services. The few complaints I have had dealt more with the general bureaucracy of education in general than the way this specific school system has handled things (I mean, even the teachers aren't generally happy about the focus on standardized testing.) We've been in and out of CDC classrooms, in and out of different schools all over the county, from Cedar Bluff to Farragut to Shannondale to Powell, and everywhere we went, teachers and caseworkers have gone above and beyond what I expected of them, caring for, helping, expressing concern for, and otherwise assisting A., as she managed to succeed and flourish in the school system. We've gone through all sorts of teaching styles and all sorts of IEP meetings, and there have been occasional roadblocks and wrinkles to iron out, but I have always felt as if the Knox County School System as a whole had my daughter's back and was ready and willing to advocate for her needs and help her succeed.
I am grateful for the peers my daughter attends school with.
There will always be the few kids who tease, make fun of, and otherwise bully others, so I don't want to suggest that A. never has to deal with this. But what I have seen, first-hand, more than once, is a sort of collective care-taking that seems to happen at A.'s peer-level. This started becoming extremely apparent when she was put in the CDC classroom full-time for behavior reasons. I was afraid she'd be made fun of, or shunned, or kids would think she was weird. Instead, the opposite seemed to happen. Kids would recognize her as being part of "Ms. B.'s class," and would stop and say hello to her. The group of close girlfriends she has right now became direct advocates for her, helping her through difficult times, even trying to change chaotic environments to help calm her down, etc. And while some kids still asked me a lot of questions about her: "Why doesn't she like boys?" "Why does she freak out at the song Thriller?" the majority of her peers seemed to "get it." They befriended her, and, honestly, I think they taught her how to be a friend, herself. They modeled a lot of amazing behaviors for her, and now she's doing those same things for other friends of hers when they have similar issues. It's such an amazing cycle of love and compassion, and so refreshing when there are so many stories of bullying and hate in the news. Of course, this all may change the older she gets, but for now, she has a lot of very nurturing peers. These kids give me real hope for a future of shared understanding and acceptance when it comes to autism. I am grateful that A. isn't preoccupied with what other people think.
I guess this is an autistic trait, right? It's definitely a family trait, and it's definitely a trait that A. has. It does mean we have to coach her on the appropriateness of shouting quotations to Monty Python and the Holy Grail loudly in the middle of McDonald's, yes, but it also means that my daughter can get caught up in the music and just dance like crazy in the middle of a bowling alley or while standing in the pick-up line at school, completely confident and absolutely oblivious to anyone who might be looking at her weird. It means that we can have crazy discussions and quote things to each other while zipping through the grocery store. In some ways, A.'s autism has helped free me from my preoccupation with Wanting To Make Sure I Was Doing Everything Right To Make The World Happy All Of The Time. The more I've come to understand and celebrate autism (and also the more confident I've become as a parent), the less I care about what people think when we go out in public. While there are many public social behaviors that I coach her through (general politeness, not throwing tantrums, trying to help her be aware of her body in proximity to other people, etc.) there are some things that I feel should just generally be accepted. If we're in a big area and want to laugh loudly and dance around, why shouldn't we do that? What does it hurt, to break out in a dance or song at random? I think the world at large would benefit from more random dancing in their lives. I know that I have.
Those are just three things, but there are so many, many more. There is a lot of hardship and heartache in parenting autistics -- and in parenting, in general! -- and I'm sure there will be many examples of these struggles in my ongoing From The Archives series, where I post recovered entries from my old online journal to demonstrate how much progress we've both made over the years. But there is so much joy, so much celebration, so much to be grateful for, and to be happy about. Autism is not a tragedy for every parent. For me, autism has been more like an Unexpected Party -- sure, dishes were broken, plates were cracked, and my life never was the same, but I got to set out on the Greatest Adventure of all. And I wouldn't change that for the world.
Yes, that was a blatant Hobbit reference, there, thus cementing my proud geek reputation. :-)