Adaptations and Services I’ve Used to Overcome My Disabilities

Last year, I wrote a post describing my limitations in as much detail as I could then. I got the idea from a disability discussion E-mail list that I was a member of in like 2004. The next discussion topic on the list was to go into adaptations you’ve used to overcome your limitations. Today, I will share about these.

As a toddler, I seem to have gotten by mostly without adaptations. I did have low vision, motor ipairments and was socially a little immature, but nothing too dramatic. I did have many colds until my tonsils and adenoids were removed at age four. I also saw a lot of specialists. For example, when I was about four, I was seen by some kind of rehabilitation physician because I neeed a cast on my left foot. I got lots of physical therapy and other early intervention too. However, I attended a regular preschool and Kindergarten until I fell apart in the spring of my second year of Kindergarten. Kindergarten always takes two years here, but I didn’t finish my second year because of needing to go to a special school that didn’t have a Kindergarten. Instead, I started in first grade early.

At around this age, I mostly got adaptations for my fine and gross motor impairments. For example, I got adapted scissors to be able to cut shapes out without needing to exert too much strength. I also got a large tricycle funded through the local disability services when I was about eight. I’m confused as to where my parents got the necessary doctor’s signature to get this mobility equipment. I mean, I must’ve seen a rehabilitation physician to declare that I had a severe enough mobility impairment, but I wonder whether the ophthalmologist agreed I had enough vision to cycle safely.

Of course, I did have some adaptations for my vision at this point too. I started reading large print in first grade. In fact, I had taught myself to read at around age five with large rub-on letters my Mom would put into little books for me.

By the end of first grade, I had to learn Braille because my vision was deteriorating. I got long keys on my Braille typewriter so that again I didn’t need to exert as much strength. For reading, at first the teachers would provide my Brailled assignments with double line breaks, because I had a hard time with it otherwise. Eventually, I could read Braille just fine, but it didn’t become my preferred reading method until I got a computer.

I still did use the vision I still had. In fact, I stll do, even though I only have light perception and a little light projection left. At age ten or eleven, I got a handheld magnifier. I remember using it to see the large print atlas we had in fifth and sixth grade, even though I really couldn’t make out anything on it.

By the time we moved across the country when I was nine, my parents stopped taking me to medical specialists. There was nothing to be done about my eyesight getting worse and worse and I no longer needed specialist care for my other disabilities. That is, this is my parents’ version of the truth. I think they may be right but there are some things that just don’t add up. Like, from age twelve on, I was accused of deliberately having an odd posture. Guess what? At age fifteen, the school doctor discovoered I had scoliosis. I had to have physcal therapy again.

At age thirteen, I started regular secondary school. I was functionally blind by this time and did my schoolwork on a computer with Braille display. I also got tactile graphics for the STEM subjects and tactile maps for geography. I also got lots of other nifty math tools, most of which I could barely use. I couldn’t even use tactile graphics much at all.

Like I said, I was discharged from all medical specialists at around age nine. At nineteen, when I graduated secondary school, I went back into care at the rehabilitation center for the blind. Besides orientation and mobility, housekeeping and other blindness-related training, I had to get physical therapy again for my scoliosis.

In 2007, I was finally diagnosed with autism and landed in the psychiatric hospital (not at the same time, mind you). My current psychiatrist remarks that I got little in the way of treatment there and she’s right. At first, it was thought I just needed to be moved into a group home and all would be fine, then when I got my last psychologist, it was decided I just needed a good kick in the behind and to move into independent livng as soon as possible.

Now that I’m 31, I don’t really use many adaptive devices other than my Braille display and my white cane, the latter of which I use more for stability than for its intended purpose. My iPhone has a built-in screen reader and I guess it won’t be long until NVDA is almost as good as JAWS for a computer screen reader. NVDA is free and open source, whereas JAWS costs several hundreds of dollars (that thankfully currently health insurance pays for).

I said eye doctors goodbye for good (except when I need a note to say I’m blind) in 2013 when my last chance to get a little sight back failed. I still see a psychiatrist, though my medcation regimen hasn’t changed in years. I have a community psychiatric nurse, whom I see biweekly for dialectical behavior therapy. As for my mobility, I’m due to see my GP on Wednesday to ask about this and about any treatments or adaptations that could help me improve.

Naptime Natter

6 thoughts on “Adaptations and Services I’ve Used to Overcome My Disabilities

  1. Hello Astrid!

    That was a very interesting e-mail list you were on in 2004.

    And it showed your whole life.

    I also am not sure whether the ophlamologist would have said “You can cycle safely” with light perception and projection.

    [and what is projection? A natural bit of vision? An adaptation technique?]

    Long keys for Braille typewriters are very cool. I think the Perkins Wonderbaby website would probably know about them; as well as their Dutch counterparts.

    In Australia there are touchy-feely books. And I don’t know about your tactile defensiveness at that time/resistance.

    Would you have been allowed to ride on a footpath past the age of twelve if the rehabilitation physician said?

    Double line breaks would have been very helpful.

    “At age thirteen, I started regular secondary school. I was functionally blind by this time and did my schoolwork on a computer with Braille display. I also got tactile graphics for the STEM subjects and tactile maps for geography. I also got lots of other nifty math tools, most of which I could barely use. I couldn’t even use tactile graphics much at all.”

    So that was a form of learning which was effectively shut off to you and could not be adapted or serviced.

    And the scoliosis. Nisha Benny Varghese also had it about that age. [Life and Living with Cerebral Palsy fame].

    Would love to experience the developments of NVDA. I expect better from open source. Being as good as JAWS is probably not ambitious enough. I seem to be on NEM at the moment – they do cryptocurrencies and other good stuff.

    Am reading Gillberg and Coleman’s 2000 edition of BIOLOGY OF THE AUTISTIC SYNDROMES. #autistichistorymonth #services #adaptations #gillberg #coleman

    Liked by 1 person

    1. Yes, I had a Perkins Brailler that had the long keys on it.

      As for the tricycle, I had better vision than I do now when I got it (at around age seven or eight), but still only about 20/800. I no longer had a rehabilitation physician at age twelve and in fact my parents moved my tricycle to our new city without the old local authority knowing, so there was no longer any authority supervision. My parents gave the tricycle away when I was about twelve.

      Like

      1. Astrid:

        I do remember you writing about the tricycle a few years later. It was to another Blindkid?

        Foxing the local authorities. We all would like to deal with them more honestly [another aspect of being a Lawful Good].

        Hooray for Perkins Braillers – they do the job and the trick well. I wish they could have them in developing countries [the least industrialised ones] – they would be a business/a killing.

        And someone with that degree of vision might like to know that tricycle riding is possible for them – with all the other barriers to be considered/taken into account.

        Appreciated that reply.

        Liked by 1 person

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