Saturday, March 5, 2016

Mobility and Visibility

Scene in my synagogue today - a little girl is moving at full speed around the shul when she sees someone special to her. She stops, says the woman's name. The adult turns and bumps hands with her, with a huge smile. The little girl careens off to find her daddy, all excited by this encounter.

Sunday, November 2, 2014

Rockland Autism Symposium

Last Thursday, I attended the Rockland County Autism Symposium, both as a self-advocating autistic person AND as a representative of Yad HaChazakah, a non-profit organization dedicating to empowering the disabled members of the Orthodox Jewish community. I have the honor of serving as their secretary. Mostly, though, it was for me. I want to stress that. I enjoyed myself and I felt I learned a great deal, so I'm very grateful I had the chance to attend.

Monday, July 21, 2014

Concert Impact

Thursday night, I attended the Queen + Adam Lambert concert in Madison Square Garden. I wrote a review from a fan perspective here, on my fan blog. I enjoyed it very much, but there were issues, both expected and unexpected, that caused a few problems.

Tuesday, July 1, 2014

Stim toys

"Stimming" is the term used for behaviors people with autism and others, inclu,ding neurotypical people, use for self-regulating, calming and focusing. It has almost endless variations, from the flapping and rocking associated with autism to subtle things like chewing gum or clicking pens.

We do it to relieve stress, to replace destructive behaviors, to enable us to pay attention and because it just feels good.

It's also something that, in the past, parents and teachers have tried to suppress in their children because it can look very odd in public. Since being in public is often stressful, this can be a no-win situation.

Tuesday, June 24, 2014

"I am having an autistic meltdown."

I had to say those words to a complete stranger on Saturday night, at a point where words were - well, they're never HARD for me because I'm verbal enough to be considered "high functioning", but not where my brain was. It was necessary. It was extremely difficult. And it didn't do any good at all because the person I was addressing didn't know what it meant.

Sunday, March 9, 2014


I lost my job a few months ago. In an effort to keep myself occupied and also maybe improve my resume, I started volunteering with a friend's organization,Yad HaChazakah, The Strong Hand. They want to empower Orthodox Jews with mental and physical disabilities so they can lead full Jewish lives.

Last week, she let me screen a short film, "A Life With Aspergers", and I was saw it, I was so struck by the imagery, especially the diving helmet on the little boy, that I had to talk about it afterwards.

Since my friend was going to show this and another film that coming Sunday (today!), she asked me to share this with the very small (fifteen at most) audience. I agreed. I've led discussions before, so I knew I could do this.

She asked me to come in again on Thursday to screen the other film, a Swedish film called "It's All About Friends." She also had someone else join us, a woman who headed an organization that I didn't quite get. I knew there was something off because one of the characters clearly had Down Syndrome, and had been identified as mentally handicapped by her father, but this woman thought the character was hard of hearing. And she couldn't see the characters from the inside, only from the pov of the protagonists. This movie, which is Swedish, has several characters who are disabled and played by disabled actors.

I felt intimidated by her and I was worried she'd come to the screening today.

Then this morning, I learned some unpleasant news. I very much want to go to a rock concert (Queen with Adam Lambert!)but the general ticket sales start on Saturday. This hit me hard - I mean it felt like a physical blow. All I could feel was anger and frustration. Rationally - there are several presales, the show is unlikely to sell out so soon PLUS I can afford StubHub AND people offered to buy tickets for me on Saturday - but I wasn't able to process anything rational. In other words, I had a bad meltdown.

This meant yelling at my poor husband, who doesn't like being a target of my frustration AND very much wanted to help but there was nothing he could do. He also doesn't like my Adam Lambert obsession. None of this is unreasonable.

I tried to calm down - knitting, watching a nice sitcom - and I almost managed it, but we had to leave and I pushed it so we left pretty much last minute. We scarfed some fast pizza and got to the place just slightly early.

I thought I was going to arrive at the end of the screening and give my talk. Instead, we arrived (at the time specified) BEFORE the screening. I was to watch the films (again)if I wanted and then do my little talk afterwards. I was nervous, emotionally on edge, at a point where everything irritated me, and worked up to perform and it was delayed. This was not a good thing.

I ended up hiding in my friend's office to play solitaire on my phone, which did help a little. So, as it turned out, was watching the long film again. I knew some of the people in the audience - all friends from my synagogue - and the others were all strangers. Not that woman who intimidated me. So that helped as well. But it was odd, because talking about my neurological condition is very personal, and I wasn't sure which was harder - my friends or the strangers.

I don't know why the film helped, but by the end, I was pretty well relaxed. My friend discussed the long film and then she introduced me to talk about the short one.

I had their attention. They asked interesting questions, they were engaged. They didn't understand why I like rules and am happy I was diagnosed, but they do now. Jon says I was animated and interesting and he was proud of me. My friends hugged me. I had fun. It went as well as I could have dreamed. A very difficult day had a good ending.

Tuesday, August 27, 2013

Unexpected changes

If I have a complex but routine task to perform, I need to have an order in which I do it. The more complex and routine, the more I need that order. When I worked for the real estate agency a few years ago, I had a process for taking, entering and distributing listings. If that was interrupted or changed for any reason, even if the outcome was the same, I got very upset. Which was disturbing and probably confusing to those around me.

It can be managed. If I know that something will be changed in advance, I can game out the results, and if they'll matter or not - and how to make things work the way they should. I can also change routines if I learn a better/more efficient way of doing them. In fact, that can be fun. So long as I initiate the change or have advance knowledge of what the change will be or just that it will happen, I'm okay. A surprise is not a pleasant thing. Neither is not getting information in a timely way - or at all, as has happened. If my job needs this information, it's very frustrating when I don't get it. I want to do my job correctly.

Last week, I knew I had a shortened week because I was going on a weekend trip starting Wednesday night. I knew I had to make sure there was food to last until Monday for all the residents, especially for the diabetic individual dependent on me for everything. This, I knew, was possible.

Monday afternoon, I learned that this was not the fact. That all of the individuals would be going to the country for a vacation from Sunday to Wednesday, and therefore I would need enough of M's food to last until then. I learned this just as I was about to leave on Monday, and I was also LATE on Monday. If I'd arrived and therefore left on time, I wouldn't have found this out at all.

Now I had two days to do this sort of thing. Now, I actually was fairly on top of things, but it was still bad to learn this so late - presumably my house manager knew the week before. If not, it was really poorly done.

To make matters even worse, I got sick with a cold. My ability to function decreased. I slowed down. And I couldn't take any time off because of the trip. Tuesday was okay - just the beginnings, you know? Not bad. I was even able to drive 90 minutes to a neighbor's son's wedding. Wednesday, which was also the night we'd planned to drive to the country inn, I ran a fever plus my nose was on permadrip. I know everyone is different in this regard, but for me, that's the worst part of a cold. A runny nose just makes me totally miserable in a way that nothing else, even a bad cough or sore throat, can.

We decided to drive to the inn the next day, of course, and I took a car service to and from work instead of walking as usual. I could barely stand. My house manager merely told me to work with gloves (which I did, plus constant hand washing and purification.) And I was missing food. I'd taken out a lot of chicken to thaw the night before and it was GONE. It wasn't in the fridge, on the counter or even back in the freezer. I felt like I was going nuts.

I needed that food. I had some still frozen I could thaw in the microwave, but to lose food is just bad. I did take out the extra chicken. And then we found it. While I cook in one kitchen, there are actually two apartments, each with a kitchen. And it was in the other fridge because there wasn't room. And no one told me. And I was sick and non-functional and stressed and there was information I needed and I didn't have it.

I got through the day (I don't know if I made sufficient food for all the guys, but I did make enough for M) and got home and to bed, and was well enough (read, no fever and my nose had stopped running) to drive the several hours to the inn, and then another half hour to see my favorite Shakespeare comedy Love's Labors Lost, even if we took one of my least favorite people along with us. So it all worked well. And while we didn't get our normal room, we got a better one on the first floor. No complaints.

But I still arrived stressed and tired and determined to do nothing on Friday. And on Friday, I began to write this blog post on my phone using an app. And I lost the blog TWICE. Not only was this stressy and annoying but just writing about the events made me upset. Still happening. I've stimmed a few times while writing this. Not a relief, you see.

So, when I let this other person drive my car (and my husband and a third person) to a museum, and there were problems right away, I got very angry. I got even angrier later on, as I was helping in the kitchen, when my husband finally returned and it turned out this person got into a fender bender, scratching the car - my MOTHER'S car - and then, instead of going home, went to a second museum. I still cannot believe he did that. And he is NEVER driving my car again. He also spent all of Shabbat avoiding me, and when pressured (wanting a ride home, which he did NOT get as we had plans for dinner) gave a very unsincere apology. I'm over that anger, though.

I was very able to get a handle on that emotion.