Monday, December 7, 2009

Answers to a few questions

Hey everyone. Wow, what awesome questions! To make it more manageable, I grouped them into categories. I plan to tackle a category whenever I want to answer some questions. So this category is communication.

I have a 3 year old with severe CP - he has very little control of his body. I feel like he's a bit "locked in" as I haven't been able to figure out how to teach him communication methods. Do you have any advice for ways of teaching him to communicate? How did you learn to communicate when you were younger? Any advice would be greatly appreciated!

When I waas younger, my main communication method was "yes" and "no". For me that was a nod for yes and a head shake for no. But yes and no can be anything. Lifting one arm or the other, blinking, eye pointing, etc. You'd me surprised how much yes and no can tell someone. When he gets yes and no down, you can move on to choices. Like, "do you want apple juice, orange juice, or milk" and then you go through each one and wait for which one he signals. Hope this helps.

My question may not have an probably a lot of people who don't personally know someone with a disability, I tend to "react" that people with a speech impediment aren't as bright. Horribly wrong, I know, and embarrassing to admit, but nevertheless true. What cues can I look for when I can't communicate with someone to make sure that we're understanding each other?

Some cues that you are being understood are if the person makes eye contact (although this may not be possible). And if the person looks interested (smiling, nodding, etc) rather than just staring into space. If the person is speaking but you don't understand them you can absolutely say "I'm sorry, please repeat that." If you still can't understand them (that's ok) you can use yes and no questions. Yes, you're right, you can't make any assumptions about those with speech impediments. Just listen to the content of what they are saying (if possible).

How often do you find yourself changing your mind about the way you phrase things as a result of inaccurate guesses by your assistants? If it happens a lot, does it frustrate you, or do you just roll with it? Do you pick assistants who have a similar writing style to your own? Or do you make sure that every time they guess inaccurately they back up and try again until they guess the right word? ? Also, in your first post, you demonstrated your board. Do you use the laser pointer, or was that just for the demo on the blog? How does that work?

This depends entirely on the situation. For example, if I wanted to say to my aide "please put the pen back" and my aide guessed it "please put the pen away" I don't bother to correct them. But if I'm writing or talking to someone else about something (something more important than putting a pen away) then I correct them to tell it in my own words. For example, just writing this paragraph, my aide guessed a couple of times wrong, and I was no no. So I only let people put words in my mouth when its not important. I do use the laser pointer to communicate on a regular basis. I have good head control so I Velcroed a laser pointer to a hat. Like in the video, I dwell on a letter until the person says the letter I'm pointing to. If they say the wrong letter (I'm sometimes sloppy and point to the space between the letters), I point to "no" and they try again. Sounds complicated but its really easy.


  1. Re: I tend to "react" that people with a speach impediment aren't as bright.

    When I was handing out programs for an event a while ago I saw a guy about my age in a motorized wheelchair, who looked like he had CP just hanging out by the ticket booth, and he looked like he'd been sitting there for a while. So I asked him if everything was ok, or if he was just waiting for someone and another volunteer leaned in and told me, "He's been sitting there for fourty-five minutes." Sixty seconds worth of yes-or-no-questions later, he let me know that he was waiting for a person who never came, but she had his ticket so he needed another one, but the ticket booth people couldn't (wouldn't) interact with him to sell him another ticket. WTF!

    All these volunteers were hanging around, and not one of them approached him or even spoke to him when he was trying to get a ticket for FOURTY-FIVE MINUTES. But maybe this is a bad example, I don't know, I'm able-bodied and I don't know a whole lot of people with disabilities, so I hope I was doing the right thing. It just seems weird to me that people wouldn't at least try to treat him the same as any other kid. If a kid who wasn't in a wheelchair had been hanging out for fourty-five minutes by the ticket booth, I know someone would have talked to him and made sure everything was all right.

  2. Absolutely true and yes you did the right thing. there are so many people out there that are not like you we needmore like you in our society these days

  3. Hi Eva,
    I love your blog! I have a niece that's two with CP, and we don't really know how severe it is yet. I guess it depends on how she will progress in her therapy... Anyway, I just have so much hope to be able to communicate with her soon. I can't wait! you have opened up a whole new world that I need to learn more about! Thank you :)