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NOT OTHERWISE DEFINED

BY PETE ROSCH

I am not really defined by my OCD, but some days it feels like I am. It dictates my behavior every minute of every day. It is perpetually in doubt as to whether I am doing things myself, or because I’m compelled. Meaningful moments outside of spelling are few and far between. Every moment is permanently possessed by compulsions. But I am not my OCD. Nor am I defined by my diagnosis of autism. I am Peter Rosch, fried food aficionado, reader of poetry, lover of music, and writer of this blog.

12/23/2024 0 Comments

2024 In Review

These days, approaching New Year, make me reflect on the past year. Definitely I believe that my feelings of nostalgia are common. It was certainly an interesting year in so many ways. Being personally very happy that good things are happening here at M2H is tops for me. The tough year that Judy and Alex had, finally has a happy ending. I know that there was a lot of heartache surrounding the change in personnel here. But that too had a happy ending. Kristine, the new teacher, is a big hit, I hear.

I did a lot of interesting things myself this year, including going to shows, going on my first cruise, and finally starting medicine to treat my episodes of extreme dysregulation and self-injury.

So yeah, this ended up being the best year of my life after a less-than-auspicious start.

Happy New Year everyone!

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12/16/2024 0 Comments

More About the Mind Place

A lot of us visit the mind place now. Finally we can connect to many people. It is critical to connect to others, because that is how we talk and learn. I began to talk to others in the Mind Place when I began to talk on the board. It was really like a new world opened up to me. Hallmark Moment: I am never lonely anymore. Being able to talk to friends anytime has made all the difference.

Awareness of the Mind Place has grown since the Telepathy Tapes came out. But people have been connecting for way longer than that. I didn’t realize that there was anything unusual about it. I guess I figured that everyone talked to friends this way. It never occurred to me to mention it. I was surprised to learn that most people don’t do it.

To verify that it exists, we need to message pass. I have told a word to Alex and Vince. Let’s see if they can tell Judy.

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12/2/2024 0 Comments

Mind Talking

Being nonspeaking takes us into places others cannot go. 9 out of 10 of us can actually talk in our minds. Before I could spell, there was too much noise in my mind to hear the others. But now they are clear as bells. Apparently as we gain mastery over being able to communicate, the chaos recedes and the signals become clear. It utterly improved my life in that it means I never have to be alone. Calling me lonely before spelling is like calling the ocean a puddle.

Messages from friends make the time alone fun and educational. Many times I learn things I don’t know like a lot of the guys here are jealous of Alex, ‘cause lots of the girls like him. The girls crush on him ‘cause he is gorgeous. Awkward to say, but feelings of jealousy have become common. I am feeling a bit of it myself.

I love that I can reach out anytime and talk to people, and I don’t have to feel lonely anymore.

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11/25/2024 4 Comments

Thanksgiving: 2024

Thursday is Thanksgiving, and I certainly have so much to be thankful for this year. 3+ years ago, my parents took me to New York to see Judy. That was the greatest thing to ever happen to me. Once I learned to talk by spelling, they could have decided to stop driving here, but I love coming to M2H. (We live in Massachusetts, so it is a long drive.) I worried that if I learned to spell, they’d stop bringing me. I’d purposely make mistakes, in fact, until one day my mother thought to reassure me.

Now, two years later, they still drive me down every Monday. How fortunate am I? I look back at my pre-Judy years and feel so lucky there are no words. Having spent so many years in silence, learning nothing, doing nothing meaningful with my time on this earth, I am now learning new things every day. I have friends both here and in MA. My family knows me for who I really am.

So yeah, on Thanksgiving I may not be eating the turkey and stuffing, but no one will be more thankful than me.

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11/18/2024 0 Comments

Medicines: An Update 11/18/24

I am having a relapse. Suddenly my anxiety has skyrocketed and so has my OCD. I have no idea why. Has anything changed? Not that I’m aware of. I’m utterly feeling pessimistic about this combination of medicines. And getting headaches now again too. All this to say it’s back to the drawing board for us, I think. While I am pessimistic about these medicines, I remain undaunted about trying medicines in general. I am well aware that people can take years to stabilize. I’m feeling optimistic in general, because I believe that we will figure it out.

Lessons to be learned here are that 0% of people get it right in one go. And sometimes reactions are delayed. To give up after only a few months is insanity, to make a bad pun.

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11/11/2024 1 Comment

Medicines: An Update - 11/11/24

My feelings remain the same in spite of the difficulties involved. Medicines are often necessary to help us with the comorbid mental health challenges we face. In my case, there are at least two: OCD and some kind of explosive disorder. To treat the explosive disorder, my doctor started me on Abilify. It’s been like a miracle for me. Since I started it, I’ve had only one minor incident, and that was over a month ago. Before I started it, I had about thirty or forty incidents a month.

The difficulties are twofold: firstly, getting the exact right dose is tricky. Two little, and I’ll have an incident. Too much, and I can’t stay awake. Secondly, there are side effects. In my case, too big a dose led to the development of something called akathisia. It’s a feeling that you absolutely must move, no matter what. Let me tell you…it’s awful. So now I’m being treated with medicine for that.

But in spite of all this, I believe I am feeling way better. Each day I wake up, not dreading the day. The anticipation of the inevitable episode made me incredibly stressed.

So yeah, the process of getting medicines right is hard, but so worth it.

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11/4/2024 5 Comments

Dance Thoughts

On Saturday night we went to the annual M2H dance. It was awesome. The costumes people had on were hilarious. I believe the eighties age called to Judy, as she looked at home in her leg warmers.

Every time there is a super fun M2H event, I think about life before and after spelling. It’s like a study in contrasts. To be able to talk and to have friends, to have parties and the opportunity to learn…these are things I’ll never take for granted. It sometimes feels like that was a different lifetime that happened to a different Pete, all those years in silence. I believe that even when I am old, I won’t take the wonderful things in life for granted. After so many years without, no one is more grateful than me to get.

So yeah, the dance rocked. And the happiness will last a long time.

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10/28/2024 1 Comment

Sedation Rocks

I am writing a follow-up to my last post. Last weekend I went to the new dentist. While I was pretty scared walking in, when we actually got to to the room, I was starting to calm down. Everyone there was nice, and not condescending. Then they asked me if it was ok to get an IV, and next thing I knew, it was over.

People should consider taking their nonspeaking children to sedation dentists. The experience was profoundly less traumatic than previous dentist visits. We need more dentists and doctors that understand our needs. We cannot control our anxiety, and thus, sedation is an humane act of kindness. Knowing I don’t have to dread the dentist anymore is beyond a relief.

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10/21/2024 1 Comment

Going To The Dentist

This weekend I have to go to the dentist. I am stressed already and it’s only Monday. Going to the dentist has always been horrible for me. I can’t bear sitting there and having someone mess around inside my mouth. I’m not sure what it is that freaks me out so much. It could be a sensory thing, I suppose. It feels disgusting to have something foreign in my mouth. I don’t even like having my teeth brushed by my Dad, but I can tolerate it…barely. But having a dentist stick all that stuff into my mouth? No thank you.

My Mom is my hero right now, because she found a sedation dentist. I can sleep through the whole thing. You cannot imagine my relief. So while I am stressed about going this coming weekend, it’s nothing compared to the past.

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10/7/2024 0 Comments

Trying Medicines

Getting the right medicines to help us can be difficult, but it can also be life altering. My parents have been trying to help me, but it was only in the last month that they succeeded. I want to say that Abilify barely made a difference but I cannot, as it would be a lie. It damn well changed everything. I feel like a new person. Using a scale from one to five, where five is the worst possible, my OCD has gone from a five to a two. I can think more clearly, and my thoughts are happier. I am calmer by a factor of a million.

So for all you parents who feel guilty for putting your children on meds, maybe it’s time to feel guilty for NOT putting them on meds. I was suffering more than I can say. I am not cured, but I am so much better already there are no words. For the sake of your suffering children, I can only beg you to consider trying. It can take years and scores of medicines that fail first, but in the end it is worth it.