"Temple Grandin" the movie, it rocks, and so does the person

Well, I already technically blew it for NaBloPoMo since we had some computer issues today, but hopefully you all (all one of you) will forgive me missing November 2nd, since it's after midnight. Just watched "Temple Grandin" for the first time, courtesy of a DVD just received for my birthday from my dear parents. Lots of very familiar moments and anxiety causing scenes.

For anyone not familiar, Temple Grandin is a famous person in the autism community for, well, having autism, to a pretty significant degree, and managing to be very financially successful and independent in the world, and for being a very vocal advocate for persons with a disability (especially autism).

Temple holds a special place in our hearts, because she also represents hope. Hope is critical to getting through the journey. One day, I hope that won't be so. Hopefully at some point, children will all be assessed for their particular education needs, and an appropriate curriculum will be applied without parents have to battle to the death for it, and without our children having to be so despondent from being forced into an ill fitting cookie mold that the school finally concedes they need specially designed instruction, and without making them endure ridiculous measures under the banner of "special education." Hopefully, someday, the federal government won't just require FAPE from local schools, but will fund it. Hopefully, someday, teachers won't have to worry about their jobs being threatened if they dare suggest that a one size fits all teaching method doesn't work for specific child. Hopefully, we will get rid of money wasted on NCLB, and switch to finding effective practices for all kids, making tests redundant, not taught to. When your child comes home miserable everyday from school, that's intolerable.

But until that day, we have hope. Hope that our significantly delayed, non verbal child WILL learn to speak eventually. Hope that they will develop functional empathy, and be able to navigate around and with other people in the world on their own. Hope that there is some method by which our kids can cope with an environment overwhelming with sensory input, and still thrive. Hope that we can find someone in the universe who sees what's in our children, dying to break out, and helps them be able to do that. Hope that we can harness whatever special interest or talent they have, and turn it into a independence providing, taxpaying job. Temple demonstrates all those things, and so much more.

Temple Grandin, the movie, did not touch on any of the medical issues that so many of our kids have that result in what we now call "autism," but if you are someone unfamiliar with autism, I highly recommend this movie as a good starting place for trying to develop an understanding. It's very entertaining, and for those of us who are already in the community, it's also very validating. I wish to caution the newbies, that there are much more lower degrees of functioning that what Temple displays, within the spectrum, and that autism manifests in as many different ways as there are people that have it. "If you've met one person with autism, then you've met one person with autism," is a familiar refrain to those already neck deep in it. But I think probably the most important aspect of this movie, although it touches very little on Temple's early childhood, is that, as a society, we must all presume intelligence and competence, and never give up on finding the method of learning that works for each individual.

I was very concerned with Temple's lack of friends which went largely unaddressed, as that's still a huge need for kids with autism, but certainly having a meaningful life with purpose is a very good start.

Stumped by an eight year old

I made brief reference to an impromptu question and answer session about autism that I gave at our family vacation summer camp in my last blog; I haven't been able to stop thinking about it. I have felt SOME obligation to participate in autism awareness as a mother of two boys with aspergers/autism and a wife to an adult with aspergers as well. I am not incredibly versed in autism science, and I am in fact a poor representative in general for others suffering with a family member's autism as all three of my aspies are very high functioning. So high functioning, in fact, that we get little sympathy. I never knew until recently that my sons (and probably my husband) qualify for medical assistance, which will provide educational tools for them that we couldn't possibly afford on our own. Their pediatricians never mentioned it. They probably think that we don't really need it, things aren't that bad. I always have the suspicion that when we are out in public together, and strangers (as well as extended family) witness the atypical behavior of any of my three guys, they probably chalk it up to them being "weird" at best, or assume that I am a bad mother at worst.

That goes extra for my dd with obsessive compulsive disorder; I have gotten outright dirty looks and nasty comments in situations where I have tried to be creative in helping her grow and develop in social venues. She has a high degree of social anxiety, and she doesn't want anyone to know it. I think there is definitely an assumption that if a person "looks normal" then they must also BE typical. There are no plaster casts, protective helmuts or wheel chairs that are obvious props of disability; there are no physical feature markers like the slanted eyelids of down syndrome. Many times a person with a disability prefers to keep that knowledge to themselves anyway so as not to stand out in crowd, many times their most fervent wish is to be typical and fit in as much as possible without drawing unwanted attention to themselves, it's amazing to me how much behavior is motivated by a person's strong desire to be "normal" and "accepted."

I still wish sometimes that there was a way to "warn" people in social situations with my mother that she is schizophrenic, so that they can understand that there is a reason for some of her odd behavior without being afraid of her. But she doesn't want to acknowledge her condition, even to herself, much less tell others. So last week when she told me that no one would really talk to her at a high school reunion function, I asked her a few questions and found out at the beginning of the luncheon she told one of her old casual acquaintence school mates that there were UFOs presently hovering over the Neshaminy Mall. I feel for her loneliness, and I also feel for the poor person who must have been fearful of my mother or at least very uncomfortable after what was inappropriate "small talk" in that situation. I keep trying to gently impress upon my mother that she isn't likely to find metaphysical like minds in the seventy plus crowd in our extremely religious conservative southest PA region, and definitely not at a high school reunion. I know it falls on deaf ears, the delusions of paranoia and grandeur run so deep in my mom that my entire adult life I have come to expect that on almost any social occasion that we attend together that she will at some point corner some unsuspecting victim with tales of the upcoming apocalypse.

I want to be a better advocate for raising awareness in regards to mental/emotional disabilities. I really want to make sure my children get the tools they need to be able to be socially appropriate and function independently in general society, I would love to save them from the difficulty and pain that I have witnessed my mother and husband suffer. I have finally realized that although a lot of it is working directly with them; another piece of it is definitely helping to improve societal acceptance of diversity.

Camp really lit a fire in me. I rose to the challenge of speaking in front of an assembled crowd, mostly because I figured how difficult could it be to tell people about my boys for five minutes? Well it turned out to be a lot harder than I thought. So far, my consciouness raising has mostly been limited to one on one conversations with adults that come into contact with my children and maybe need to be aware of their differences. But the very first question I was asked as I stood up on the stage in front of maybe eighty people threw me for a loop, I was actually stuttering and sweating a little as I wracked my brain to come up with an appropriate answer for a very simple question: What is autism?

No one had ever asked me that before, and what made it especially challenging was that it came from an eight year old. I frantically searched my vocabulary data banks to try to think of a way to explain it that he could understand. I'm sorry to say that I did a pretty lousy job. But I thank god for his question, because you can bet that next time someone asks me that, I'm going to have an answer ready that a young child can understand. It's not only important for adults to become more aware, but obviously, the children of my sons present generation will be the adults in their future as well, long after their father and I are gone. In fact now I will be soliciting questions from others, so I can prepare appropriate answers for all future opportunities. One thing my children have taught me is the importance of "teachable moments," and they don't just come when it's convenient.