Thursday, July 31, 2014

Blog Title Change: Dancing With Aspergers

Hi readers of my long lost blog formally titled "Ah Shit! I Think I'm a Cougar!." That title while being funny, never really sat well with me. I know I chose it, but I am terrible at titling things. In fact, I feel slightly unsure about the new title, although it describes me, and my life on a literal and metaphorical level better than the other one did.

I never was a "cougar." I don't pursue men on purpose who are younger than me. I do sometimes have a younger outlook on some things, and I tend to attract men who are in their mid 30's, but I think that's because I look and behave more like a person at that stage. But I've written about this before. and will not rehash the topic again now.

My blog is still going to be fairly extemporaneous in nature. That means if you are annoyed by tangential or associative thinking, or writing style, then this blog might not be your thing. The topics I explore will not just be about dating, and being single as a woman who is in her 40's, an artist in various forms and who most likely has Aspergers Syndrome, a form of Autism, but who hasn't been formally diagnosed at this time. I am going to write about whatever ideas pop into my head. Right now, it's the title change obviously.

I chose the new title based on the fact that as an art form, dance is my first love as far as creative expression goes. It's closely intertwined with music, but there you have it. Plus as I've already said, it's likely I have Aspergers or some other related condition on the Autism Spectrum. I also work with autistic kids as a tutor/1:1 (I prefer saying tutor, because I don't agree that methods of teaching skills to autistic individuals should be called "therapy"). Besides the fact that I am literally a dancer and an Aspie, I have been in a sense dancing with and around this condition which I prefer to think of as difference in neurological wiring, and struggling to dance through a world that is not set up for autistic people at all. I even dance around the idea of maybe not being autistic, but having some other difference. That's ok too. It's close enough to Aspergers for me to just identify that way until a doctor tells me something different. I relate more strongly to other autistic people, and I share the common experiences of feeling different, misreading nonverbal cues, coming across as rude or blunt when I don't mean to and/or not understanding why I upset someone, etc. I may go more in depth into this topic in other entries, so I'll stop writing about it in this one.

But there is something else I want to write about in this installment, and that's my attempts to start up a non-profit project, called Ballroom All Stars, or Ballroom AS or, BAS. The experience of founding something like this from the ground up, mostly on my own has been a combination of exciting, empowering, illuminating and disappointing to frustrating. I won't go too in depth in this entry about all of it, because it's again a topic for one or more entries in itself. I am in a holding pattern at the moment while I figure out which way is up with it after a couple setbacks have happened. One thing has happened which I can't go into right now because it's uncertain, and not official yet. The other issue is a failure that still stings, and that is that nobody signed up for the dance camp, so it didn't happen.

This summer, I had hoped to be able to launch the project with a pilot dance camp. I had a great venue, Arrowhead Arthur Murray who had agreed to host the camp, plus a dance teacher to run it with me. I contacted colleagues, local autism and disability groups, and I sent flyers home with adolescent autistic students I knew through work. I got a positive response from colleagues for the most part. But the response from local parent groups was one of being ignored, except for one group who's response was they didn't see the point in teaching Ballroom Dance to autistic people, and that the teenage children of the parents in their group would only be able to learn a very simplified version of a line dance, such as Gangham Style. Before you agree, let me explain three things. One, this group labeled itself as being for "high functioning" autistic people. (please note, I don't like that term because it is usually meant to mean autistic people who can talk with their voice as opposed to "non-verbal" autistic people who need to use visual, typed or augmentative communication devices to communicate). Two, Gangham Style dancing is mostly pretending to gallop around on a horse. I don't know one could make it more simplistic. Three, most line dances are actually harder to learn than Ballroom and Social dancing at the beginning level. Obviously at the Intermediate and more Advanced levels, Ballroom dance gets more complicated and requires developing more complex skills, but even those would not be beyond an autistic person who has been steadily progressing through the previous levels.

I have talked to other autistic adults who have run across similar issues with autism organizations run by or for parents of autistic people. I think this attitude is partly because parents want to protect their kids. This is a good thing, but can go too far at times if it strays into over protection, and interferes with the level of independence that an individual could be capable of achieving. The other piece is that there are several organizations, including, but not limited to Autism Speaks, the largest Autism charity in the US, and one which dominates the conversation on Autism in the US because of it's size, and marketing spending power, that paint having a family member who is autistic is a fate worse than death, worse than cancer, and akin to having a child who is missing due to abduction. None of this true at all, but if you are a parent of a newly diagnosed child and this is what you find when you Google "Autism," you are going to probably feel terrible, as if there is no hope, and your child is capable of nothing, and will never develop at all. This is an attitude that many advocates in the self advocacy movement are working to counter and change, and hopefully the tide is turning.

I'll be honest, at first I was hurt and angry about the email I got from this organization who I won't name, because I would like to try to convince them that actually their children can learn to dance, and that Ballroom dancing will have amazing multilevel benefits for their children, and by extension for their family. They might even decide to take up dancing themselves! I cried for about a week or more. I had huge doubts, not in the young adults I was trying to reach, and one day teach, but in my own ability to start this organization, and to handle the overwhelming enormity of the task. But finally it taught me that marketing Ballroom AS is the same way I had marketed my own 1:1 tutoring services when I was an independent contractor, working for myself, 13 years ago, was not going to work for something as huge as this that is a huge unknown to parents who are largely anxious and over protective about their kids, no matter if their offspring is adult age, a teenager or a young child.

It became clearer and clearer to me that I am going to have start the process of actually turning the project into a real non-profit which includes recruiting a board that includes well known Ballroom dancers, celebrities, autism professional, and even more importantly, autistic adults, raising money to get non-profit status (5013c), and raise money to hire experienced professional dance teachers to go to schools and organizations to give a presentation, and teach a mini-class to autistic individuals and their parents/caregivers. This is where I am, and it's overwhelming because I don't actually know any well known dancers personally. Although I have teachers who do, who I hope will get involved even if it's just as a sometime adviser. I've gotten some advice on a couple other people or organizations to contact as well. I do have some colleagues who have expressed interest in the project, and I know I'll have plenty of help once it's up and running. I just am not feeling quite confident enough to take this leap, but I'm getting there. Every successful person fails, many times. The difference is that when we fail, we keep trying and adapting until we succeed.