There Are No Words.

I wish I could say something new about George Hodgins.

I wish there were words to really express
what a tragedy his death is,
and the deaths of other Autistics,
other People with Disabilities.

There aren’t words.

Just as there aren’t words to express
what horror and tragedy
the Murder of Trayvon Martin
Who was Black, but not Autistic
or of Stephon Watts, who was black
and Autistic and scared, holding a
butter knife, or the murder of
Ernest Vassell last fall for
holding a toy gun while Black
and Autistic. (Or the arrests
of Neli Latson, and of his mother
for calling people on racism.)
This is what has been done to
Young Black Men in this country.
To Young Black PwD.

There aren’t words.

There aren’t words for
the horror of  baby Rylan
Rochester
, age 6 months,
whose mother thought he
might be Autistic after working
At a hospital serving Autistics
and so she smothered him.

There can’t be words.

There can’t be words for
The grief, anger, and fear
of living in a world where
Hate, fear, bigotry, and
complex social mythologies
Let people make excuses
for murder. Lets them empower
Blais after her sentance, or
air Latimer’s vitrol while
blocking dissenting comments.

All I can do is show you other words,
and hope they can be enough.

_____

In memory of George:

Kassiane at Radical Neurodivergence’s You keep killing us, and I am PISSED and The words said for George.

Autcast’s Why I No Longer Support the Autism Society of America

Lydia at Autistic Hoya’s Letter to the Parents of Autistic Children and Not human anymore – Is this what “ally” means?

Amanda at You Need A Cat’s Another murder. Please no.

Weird Law’s When perfection is deadly

Shannon Des Roches Rosa for BlogHer’s My Autistic Son’s Life: Not Less Valuable

Brenda at Mama Be Good’s Perpetuating the Stereotype: Autism, Parenting, & Murder

Other links of relevance:

Krip-Hop Nation’s Broken Bodies Pbp: Police Brutality & Profiling Mixtape and Where Is Hope? Documentary

In Memory of Stephon, Justice for Stephon Watts.

Not Dead Yet

Second Thoughts

Disability Rights Education and Defense Fund on Assisted Suicide

Please comment to add more links on these issues.

_____

March 30th and on, Vigils for People with Disabilities Murdered by Relatives and Caregivers are happening under the direction of ASAN. These are cross disability events. The current list of vigils is at the above link, and if you absolutely can’t find a way to get to a vigil in person, I’ll be hosting the virtual vigil via tiny chat for those who are in rural areas or are housebound. (After all we are people too, even when our disabilities keep us in our homes or we live in the country.) But please, try to get to or organize a vigil in person if at all possible!

Finding a Positive Experience- or, New Psychiatrist

[Content: summary of improper/abusive medication practices on a minor, detailed descriptions of a Psychiatrist appointment.]

I had my first truly positive experience with a psychiatrist. I don’t know for sure that it’s him, the facility he works out of, or just that my needs and his techniques lined up. But I do know that I wanted to share what happened, especially in light of the number of horrible or even traumatic experiences I’ve had with others in the past.

When I was a kid, I was medicated and medicated badly. It seems like every med that came out, I got tried on, in a wide range of uses. Indeed, some of the things I was medicated for was caused by other medications. very rarely was my body allowed to detox from one medication before starting another. And every visit- once every 3 months- my medications would change again.

I have a long long list of things I will not ever allow that is written in my Mental Health Advanced Directive. Some of the things were given to me as a form of long term chemical restraint on the part of the doctors, particularly after my childhood in patient hospitalizations. Some were given to me based on appointments where the doctor fell asleep during the appointment, and then would write down notes that could only be explained by falling asleep and dreaming while my mother was talking. That is my mother’s belief of what happened, and she saw the notes. All I know is I sat in the appointments and watched her nap through my mother’s talking.

I was on so many medications that I cannot list my past meds completely. I can list a few. Sometimes I can even check boxes off a list, but even then I miss some. I know I gained 60 lbs in 3 months at age 12 from Depakote. (Even when I was Bulimic in High school, I never have been able to get below the weight I gained then.) I know that on Risperdal, I became violent seemingly out of no where. I know that on multiple occasions, Seroquel was used to increase compliance and ease of handling by staff- and the vast majority of the other young people seeking treatment at those places that prescribed it were on it as well. Prozac made me manic as an adult, and made my compulsive behaviors more difficult to control- and I was house bound at that point. The list is seemingly endless.

All of this in addition to the disrespectful and disregarding attitudes and actions on the part of the people prescribing. Don’t get me wrong, I had some okay-ish Psychiatrists once or twice. I even had two who *wanted* to be helpful to me. One of them advised taking me off of medications completely when I was 14, upon which time the behaviors my mother found most concerning either diminished or vanished.

(A side note: My mother, not being a Psychiatrist and living in a rural area, followed advice on the med side of things. Over time her records and increasing advocacy skills lead to my getting to the doctor I had when I was 14. Those same skills also helped her teach me advocacy skills.)

But the vast majority of my psychiatrists were not respectful and wouldn’t listen to my internal experiences and motivations for the behaviors they were trying to medicate away.  I don’t remember having someone talk through their process, take my input seriously, or give me options that were tenable. I definitely don’t remember a Psychiatrist who  was comfortable with leaving behaviors I didn’t want or care to treat alone.

As a result of all of this, I have what I think is a pretty well earned fear around seeing psychiatrists. For several years, I’ve been having my general practitioner manage my medications. (I’ve been back on meds off and on since I turned 18.) However, my other supports indicated that seeing a psychiatrist was a good idea and Medical Assistance threatened to drop me if I didn’t try to find one.

We started looking for a Psychiatrist. I was looking specifically for someone with experience dealing with Autistic adults and anxiety. The nearest we could find with sufficient experience was the Merck Center in Pittsburgh. My Case Manager helped me and my mother do the pre-visit medical history and needs paperwork. At first I was concerned. A number of my behaviors that are not things I was looking to treat were on the list as check boxes, while other things I had no idea how frequent they were.

On February 17th, I had my appointment. I was scheduled with Dr. Hudak for that morning, and I took my mom with me. They had used my papers to figure out which of their doctors would be most appropriate to my personal needs. This alone is an improvement over many of the programs I’ve gone through where case load determines your doctor, not specialty.

I bring my mother to these appointments for a couple of reasons. She functions as support staff, where she helps navigate administrative issues, pick up on cues and behavioral aspects of people who are new to me, and helps out with remembering when and how things happened. But she’s also there because, should I become incapacitated, she will be the one needing to know what I want as far as treatment, accommodations, and other needs.

The waiting room was plain, and the unfamiliar check in process was a little nerve wracking for me. I was pretty oblivious to the people there, as my fears about the appointment made it hard to observe there. However, my mother says that she found everyone helpful- which seems familiar- and that when she was observing the other people there for services, no one seemed anxious. I don’t know how often you’ve had a chance to sit in a Psychiatric waiting room, but they are usually full of worried and anxious to be there people.

The doctor came out to get me, and got confirmation from me that I wanted my mother in the actual appointment with me. Then he lead us back to his office. I noticed a lot of books on OCD, Anxiety, and ASDs on his book shelf. That was comforting to me. My mom found his office to have the right balance of personal vs professional to make him seem like a real person.

He was definitely very interested in my internal experiences of my anxiety, and worked hard to understand how I was communicating that inner experience of it. He didn’t disregard or shoo away my internal experiences, which was a pleasant shock for me. I’ve had a lot of doctors- even medical ones- disregard my internal experiences to focus on external behaviors and evidences, and as a minor focus on other people’s reports on my behavior.

He addressed all of his questions to me, unless I then asked my mom to elaborate on a point that I couldn’t remember the details of or that I was having a hard time putting into words. He was very good from my perspective of understanding and negotiating that she was there as my support staff. My mother felt that he was good at asking her appropriate questions, and felt that he listened to me well.

What I appreciated- and what some  people don’t like- was that he was excellent at talking through his process with me as he goes. This is one of the key access needs I have with any doctor, and I felt that he was very good at it. My mother’s impression of this aspect was that he was thorough and that his process reflected that he was actually listening to my input. It was the first access need I remember mentioning (other than explaining a stim toy) to him, and one that he seemed pleased to hear as it is the way he works. I understand some people don’t like this feature in a doctor, but it reassures me that I am being well informed as well as that the doctor is considering my remarks. It also makes me feel more confident in the outcomes of an appointment.

Something that I didn’t fixate on but that my mother has highlighted to me as I was working on this entry was that he was very direct about wanting to meet my needs. He asked about what there was he could do to make me feel more comfortable in his office, especially in light of my fear around Psychiatrists. He made sure he was aware of what accommodations I might need, as well as the role of my mother. He made sure to let us know that we should feel free to communicate needs in the future as well.

When it came time to make choices about medications, he talked about his thoughts on the issue, as well as how things would work with my other medications. When I made it clear that it is my anxiety, not so much the other things, that I am seeking his help with, I felt that he was very supportive. He gave me two medications to chose from. One had a greater chance of success, but might have side effects. The other has fewer side effects but some people don’t find that it works well enough.

Because of the history I have with horrible and unexpected side effects, I chose the second one, which is called Buspar. (It’s been okay so far, but this post is about the visit itself, not the medications.) He was very good at answering my questions about the medications. He also made sure to assure me that if we end up unsatisfied with the Buspar, the other medication is still an option.

When I asked him if it would effect my “twitchies” he told me that it might reduce any that are anxiety triggered, but only because the anxiety would be less frequent. Other wise, I shouldn’t expect to see any changes in the twitchies, which is a good thing because they (both tics and stims) are a part of me that I’m okay with. He was very accepting, I felt, of my wishes to keep my stims and their value as self soothing or self focusing/regulating strategies.

I had one of my stim toys, a mop slipper that is both green and a texture that I enjoy, with me the entire time, and he seemed to have no issues with it that were apparent to either myself or to my mother. She agrees with me that he respected that stims and to some extent tics are a part of myself that I am at peace with and embrace in myself.

After he made sure that all my questions and comments were answered, he let us out and had us schedule a follow up for late April.

Overall, it was one of the most positive experiences visiting a psychiatrist that I can remember.

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.