The Times are Changing

Times change and things change.  Change is hard.  After being denied the opportunity to take classes in person (rather than just online) at my current college, I have decided to take in-person classes at another local university.  This is hard. Change is hard.

I worry about the new sounds and smells and distractions.  I worry about how I can sit and stay in class without having to get up and move about.  I want to be like other students.  That is all really.  I, however, have to focus not only on the course information but also on regulating myself and my body.  It’s hard when I have to do that.
I do have plenty of support and I am grateful, but in the end I realize that I have to step up to the expectations people have of me.  I share these expectations and want to be successful.
This is where I stand now and it seems to be where I always stand.  I am pulled between a desire to be more independent and the comfort of knowing another person is there to watch out for me when I need it.  I want the independence, but I also fear it. 
I fear how I will deal with sitting in a classroom with my sensory issues.  I fear that I will not set a good example for future persons like myself who might wish to attend this university in the future.
These things are what I am trying to deal with right now and are the things that make me worry.  Well, this and the fact that I am trying to be more independent. I think I have to find a happy medium between being completely independent and accepting help when I need it.   Being completely independent is a hard thing, but I have to remember that even while I think I am out there alone, I have a wonderful support team including my family, friends, therapists and teachers.

Keeping Busy

It has been a busy couple of months and I have neglected my blog a bit more than I intended to.

From February to July this year I was lucky enough to participate in a tech development contest organized by AT&T and NYU. The goal was to invite people to create new tech solutions for people with disabilities.

i was asked to provide feedback on each idea along with a diverse panel of people with and without disabilities. With me were three amazing advocates for accessability Xian Horn, Gus Chalkias, and Jason DaSilva.  All of us have a different background and different challenges. we all brought our unique perspectives to the process.

Our role was to represent the end user and ask questions that might not occur to people without disabilities. hopefully this will lead to products that can help people become or remain independent.  It was a wonderful experience that I was privileged enough with which to be involved.

Having said that, I am hoping that my readers check out the contest page and the wonderful videos about the exemplars so they can see what I have been up to.  I hope to get back on a regular schedule now of  posting regular blog entries and have some great ideas, so check back soon.

The Noise of the City

I was recently back in New York City presenting at NYU.  I really enjoy my trips up to NYC.  Greenwich Village is very exciting.  Compared to where I live, there is so much traffic and vehicles to look at.  Honestly, many people may find the crowds and traffic stressful.  For me, however, I find that it lessens my anxiety because I can focus my mind on something that really interests me – noises, cars, trucks and cabs.  Sometimes I find that with focusing on those things, I can even forget about other things that are hard for me in the city because of my sensory issues.  I honestly really like the city  because there is so much automation. There are mechanisms moving everywhere moving and I like seeing and hearing that.  Different cars can be picked out by the way the engines run.  I can know what car will be coming before I see it and then I see it and it is fun to know I picked it out and was right.  For example cabs sound different that trucks and some big cars sound different than smaller cars.  I can sometimes even hear a bike coming.  All of the mechanical noises help to keep me focused and I don’t care about the crowds because of it.

I often fell anxious before presentations and just walking through the city is calming.  I  find that I can get lost in the crowd and no one notices that I move different or act different because there are so many people around and that is sort of nice every so often.  Plus, the mechanical noise is increased so much that I cannot pick out individuals so it is much less likely to take away my attention from trying to listen to what they may say about me and that is relaxing.  In many ways this is like some airports.  So many people doing things in a hurry and running and trying to get somewhere that they do not notice me.

That is one of my concerns.  I know because of my motor plans that I have movements that seem a bit awkward or I may do things that seem a bit odd to others to satisfy a sensory need and because of this, I feel like I am being stared at and try to listen to see if I can hear what others may be saying about me.  For example, in hockey I feel like all eyes are on me.  I don’t like that and it gets me very stressed even though I have fun skating.  I feel like everyone is watching the different ways I move around so I want to move in a way that looks right.  Just skating around and not getting in the middle of things where I may look like I move differently.

So, sometimes it is nice to get lost in a crowd.  It can be relaxing.  However, I think it is also important for others to realize that there are others out there who may move differently or who may do things that seem odd to a neurotypical person.  Understanding and empathy needs to increase and that is one of my goals when writing this blog… to let people know and make them aware of us.