A Quick Update

It has been a while since my last post, and I have a lot of stressful stress happening. I do have plans for several entries this spring that I hope to get written, but I wanted to give a very quick update in the mean time. It’s my hope that I’ll manage to get a post out on each of these issues this spring.

First, a reminder: Loud Hands Project is still taking donations for 7 more days/until the end of march15th, 2012. The initial fundraising goal of $10, 000 to fund the anthology was met, but there are more benchmarks. If we can reach the next one, $15,000, in the next few days LHP will be able to do a documentary on Eugenics and Autism. That’s only about $1300 to meet that benchmark- and there are more benchmarks after that that you can read about on the website.

If you know me personally, you know that for the past year and roughly two months, I’ve not had a permanent residence. Thankfully, I’ve had family in my area who have alternated care of me. I stayed for several months at my grandmother’s last spring, stayed in a building owned by family that isn’t technically livable over the summer in a camping style, and since September have alternated between my sister’s and my mother’s. It’s very hard on me, and it is hard on my family. We’ve been trying, with the help of my Intensive Case Manager, to navigate the housing system, but with little luck. I’m hoping that I’ll have some resolution on this soon so that I can process some of it to share.

During the time that I stayed at the old house, I had an incident with sexual harassment that might be mentioned in another post. I thought at the time I was being targeted because of being poor, but my sister thinks that the fact that everyone in that little town is very aware of me being disabled was a factor. So I’m hoping to get a post on sexual harassment written. It would have been nice to have written it for International Women’s Day today, but I just couldn’t get it together.

I’ve gotten involved with a group of self advocates called Self Advocates United as 1. They asked me to join their board, and to become a trainer. I got a chance to visit a couple of state developmental centers to teach self advocacy skills for the people still living in the centers to use. It was a great experience. I loved being around other people with disabilities, and I learned a lot about audience participation and involvement from fellow board member and trainer, Larry Kubey. (Larry is also THE music man- he knows almost everything there is to know about pop music from the 60s on.)

I’m looking forward to an event in May where we will be gathering questions about moving into the community from the people from the centers who are looking to move in the next couple of years and addressing them to providers in the community. Hopefully, some of the myths and misconceptions people have about community living can be addressed, and help people feel more confident about their choice to move into the community.  I hope to have something on community living this spring or even early summer to share with you all.

I went to a specialized psychiatrist in Pittsburgh, and had one of the best experiences I’ve ever had with this type of doctor. The facility specializes in people with developmental disabilities, and the particular doctor I saw had a lot of books on OCD, Anxiety Disorders, and Autism on his shelves. Because I’ve had so many horrible experiences, I found it remarkable- as did my mother- and so you should expect a post on this next. Depending on my anxiety levels, I might even get it done this week or next.

It’s my hope that you can use it in a couple of ways: 1) to know that not all psychiatrists are going to be horrible. 2) to have an idea of what might or might not work for you to look for in your search for a psychiatrist that will respect you. 3) To show your psychiatrist or care provider that they don’t have to be so horrible.

Of course, I’ll also be writing a post for Autism Acceptance Day‘s blog carnival this year as well. I’m not sure of the topic yet- and one of the above topics might end up being my post for it- but I do have plans for it. It would be great to see some new writers contributing this year, too, and I’m willing to provide some basic support where I can if you want to try.

The last thing I want to make sure I mention is a little post I am planning on doing for Mother’s Day. I’d love to hear from people about their mothers, or about mother figures’ experiences getting unconventional expressions of love from their families to either share or link to in my post. I’m going to be talking a bit about how even though many of the masculine figures in my life perpetuated some serious abuse- which I’ve discussed elsewhere- how my mother worked hard to support me.

I think that this is especially important, not just because I want to recognize my mother, but because my Autistics Speaking Day post was initially mentioned (and since amended!) in a round up as pointing out parents/allies as the problem, and that wasn’t my intent at all. I think many parents end up coming into the support role with this idea that their voices and experiences are centered. That they are “the voice” of their kids rather than the facilitator of their kid’s “voice.”

And that’s true no matter what level of communication your child has. You are there to facilitate their needs and interests being met. And the role of facilitator becomes more and more just facilitating as your child grows. And now I’m ranting, and I’m going to end now. Basically, I want to reaffirm my gladness for my own mother’s support and facilitation of my needs, and in the process celebrate similar mothers/maternal figures who have demonstrated excellent ally-ship.

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One thought on “A Quick Update

  1. Wow!! There’s a lot of stuff packed into this post, thanks so much for all the info. I am so sorry you’ve had a hard time with permanent residence issues. I was even more horrified to hear about the harassment you were subjected to! It was good to hear about the support you have and all the great things you’re doing. I hope things get easier for you.

    Also, the end part of your post didn’t sound too much like ranting to me. And I think you explained the point really well “facilitator”. I’ve kind of been thinking of myself as the “parent-advocate” cause I didn’t have any other words to describe it with, but I think the word “facilitator” is really clear and describes what I strive for perfectly.

    My kids are still really young (4 and 19 months), and while my baby daughter is still pre-verbal (having lost some speech), my son is really coming along with his speech (and no matter how much he says, I know he understands *everything*), so it’s really good for me to read the kind of things that you and other self-advocates write because we all have this idea that we’re trying to travel the middle road and be a centered as possible, but as hard as I try, I always learn something new when visiting a self-advocate blog. And that’s nothing but a good thing. Rant away in my book, otherwise I might not realize when I miss the mark!!

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