Thursday, March 25, 2010

Talking needs

Last week, I went to be evaluated for a speech device at Casa Colina Hospital for Rehabilitative Medicine, a very well-regarded institution not far from here (in fact, I traveled there in my wheelchair, and I work out in a gym there twice a week). This had been a long time coming, with friends encouraging me to do this for at least a year and my calling for an appointment in October. To say the least, Wednesday afternoon was eye-opening, making the wait totally worthwhile. I was quite impressed, in every sense.

When I went, I took a note that I had typed, explaining that I had used a LightWriter, a voice synthesizer with a small typewriter keyboard, for about five years but that it ended up being frustrating and tedious, that the letter board that I use is only a bit better and that friends have asked me why I don’t have a device like Stephen Hawkins uses. Meeting with me were a speech therapist and a young woman from Dynavox, which designs and makes a variety of speech devices, and both clearly knew what they were doing. Within five or ten minutes, they totally "got" me.

I have to say that this was most refreshing. It hasn’t been since I was in elementary school that I received such caring and thoughtful attention in regard to my disability and what I need to make it easier to deal with it. The two women were even ready to order me a new wheelchair ("Look at the chair you’re in!"), although they agreed that I’m happy with and used to the chair I have! (See - I didn’t have this kind of evaluation when I got this chair.)

I like it that they quickly saw that, yes, I can type with a finger, but using my finger on even a touch screen is too much work and not practical in a conversation. I like it that, when I said I hate using a key-guard (I get my finger caught), they didn’t have me try one. I like it that they quickly saw that, even though I can easily click, push a button, flip a switch or whatever with my finger, my elbow, my knee or whatever (but probably not my eyebrow), it would be too tricky and not practical in a conversation. I like it that, for the most part, they didn’t argue with me or try to tell me I wasn’t trying or working hard enough.

So they had me try the eye thing, which involves a camera that follows my eye movements to operate a mouse on a screen that can feature a keyboard, words, phrases and predicted words. This pretty much drove me crazy and was clearly not practical. Later, I realized that this works with people like Stephen Hawkins who essentially can’t move, whereas my body, including my head, is in constant motion, and isolating my eyes is a real challenge - something like following the eyes on a bobble-head. (But I don’t understand how Hawkins "speaks" without pauses. Does he pre-program all his statements - even his replies in a conversation?)

Next came a sticker on my forehead, which the camera followed. So I looked like a Hindu, but that’s cool, because it worked! This may be the jackpot. Yes, I will need to practice, will need to try harder and work harder, but, with my getting noticeably better in the short time I used the device, especially when I sat up straight in my wheelchair, I have a clear sense that this effort will make things easier in my life. (Among other things, in addition to getting better at using the device, I’ll have to keep a supply of stickers and make sure one stays on my forehead, like when I sweat, and figure out what hats I can still wear. Also, after a lifetime of thinking out lots of what I say, spontaneous conversation will be almost a new world and an interesting challenge.)

The two women were almost more excited than I was. They saw me as a project, an unique challenge, with great potential. Calling me a "complicated case," they wanted to set up another appointment, also including an occupational therapist, requiring another prescription from my doctor. The Dynavox rep said she is even willing to get up early and drive through the morning rush-hour traffic from Long Beach for a 9 a.m appointment with me. I asked them point-blank if I am eligible for this device, even though they could kind of understand my speech, and they said, "Oh, yeah," that I "definitely" am.

When I left the two-hour session, I was drained and exhausted, and I went home with a bunch of feelings. Some were positive:

INTERESTED, FASCINATED - What is available now is really amazing, jaw-dropping.

EXCITED - Wow! I see my life getting easier and many possibilities, doors opening, etc.

HOPEFUL - This may well happen.

And some were negative:

FRUSTRATION, ANXIETY - This is taking so long! I just found out, finally, that my next appointment is on Tuesday. (The new prescription and occupational therapist were rounded up.) And, yes, I’ve been assured that the case for me getting the device is strong, especially with an occasional therapist chiming in, but what if Medi-Cal won’t pay for it? I keep hearing about what Medi-Cal won’t pay for and am amazed that it is paying for these appointments. If Medi-Cal does pay for the device, it will probably take months.

ANGER AND SADNESS - I shouldn’t be worried about all this. I should just get the help I clearly need to live the fullest, most productive life I can. Also, why didn’t I get this device years, if not decades, ago? Why was typing on the LightWriter deemed best for me? Why wasn’t this device considered at all? Or was I too proud and stubborn? Come to think of it, why, when I was in elementary school, did therapists make me spend hours dressing myself, and why did another squeeze my lips while I ate canned peaches, trying to get me to eat with my mouth closed? I don’t want to cry abuse, but....


  1. Wow... that's definitely an exciting a development. I'm gonna pray light a candle see... I got so excited I forgot I was an atheist. :-0
    I hope you get it!

  2. P.S. I have A LOT of experience with Casa Colina, first with my Mom, then my sister, then my Mom again. It's been mostly good, although there were a couple times when they made me nuts.