Assistive Technology Assessment is an Important First Step

Because of technology, an 11-year-old girl who can’t physically hold a pencil is on the honor roll. If not for a $200 word processor called a Forte who knows where she would be! Not only does it give her the ability to keep up with her fast-paced 6^th grade class, it’s cool and sleek so it gives her a “coolness factor” among her peers. I would argue these are the top conditions that need to be met when picking out appropriate technology for individuals. (You can read that article here: http://www.azcentral.com/news/arizona/articles/20131216assistive-technology-aids-special-education.html?nclick_check=1 )

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It’s important to remember to assess needs at an individual level before jumping straight to a tool. Too many times, students (and adults) are hooked up with a great piece of equipment that doesn’t provide them with what THEY need. There is a process, and anybody in the disability world is too familiar with how long these processes can be, but in this case it’s super important to follow through with a thorough assessment to ensure getting the best assistive technology possible.

For tips on how to do these assessments, check out The Assistive Technology Playground by my peer Marvin Williams.

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Hurricane Sandy

I feel like I have been living in a post-apocalyptic world since being hit by Hurricane Sandy. We had no power, no heat, no hot water. We moved as much stuff from the fridge into coolers with ice to the garage & I cooked on the grill plate attached to my BBQ in the garage! That was pretty interesting - only being able to cook one thing at a time. I usually have a couple pots going at once. Then to do it with a flashlight because it gets dark pretty early and we can’t exactly have dinner at 4:30! I joked with the girl that I felt like we were camping. That’s a pretend game she often wants to play and she has asked to go camping many times. We have never gone and I never intended on going because I don’t find any appeal to sleeping on dirt, being crawled over by bugs. This experience has only strengthened my “NO WAY, JOSE” attitude toward “roughing it”.

And keeping occupied a kid with CP who can’t do anything for herself is unbelievably difficult. Think about it; you can pick up a book and read if you want, or play solitaire or even a board game with someone else, take a nap…but with the girl, I have to not only be HER body but my body as well. And a 14 year old (with delays) is not easily distracted, especially when she is trying to tell me what it is she wants and 1) I can’t figure it out because her communication device is dead and the game of 20 questions isn’t getting us anywhere or 2) she wants to do something on the computer or T.V. that requires power/internet and she doesn’t understand the concept of no power = no T.V./internet.

I knew I would be excited when the lights came back on but she was ecstatic! It was funny because she had already gone to bed about 15 minutes prior to the power coming back on. But as soon as she heard the “beep beep” from some of the electronics catching internet (that sounds like a new virus) and the voices from my T.V. set, she started to laugh and holler. She INSISTED I turn on her television so she can catch up on some of her shows! She was truly a happy kid.

P.S. – There are so many people still suffering through the after-effects of Sandy. The people living on Fire Island and other shore communities have lost so much. I haven’t seen the pictures but on the radio, the reporters were saying that each individual house looked like an island – all you could see were rooftops surrounded by water. This post reflects my joy at returning to normal without any major catastrophes save for some lost condiments that we couldn’t fit in the coolers but I don’t want to diminish the trauma being experienced by thousands. I do pray that those affected will find comfort and can return to their normal as quickly as possible, in Jesus name.

Communication Needs On A Flight

Flight Attendants Don't Know Everything?

I just finished reading an article about how a teen with autism that uses an iPad for communication was told to put the device away by a flight attendant on an American Airlines flight. When I read the headline, “Airline iPad Policy Sparks Disability Dispute”, I thought I would be angry by the time I finished reading the article. But then I realized, this is the perfect teachable moment.
 

The teen’s aide explained that the iPad was her method of communicating and the flight attendant (according to the article) responded by saying “with all her years of flying that she’s never seen or heard anybody using an iPad to communicate before”. She was simply following Department of Transportation guidelines and the policy of the airline. The first thought that came to mind was – how old is this lady? Then I thought – how is it that people still don’t know about this great age of technology that we live in? Also – how does such a large corporation such as American Airlines still not have their policies reflect these great advancements? Of course these things are obvious to me; this is the world I live in. So it’s unfair to automatically assume that someone is just being a big jerk. With that in mind, I’d like to take a moment to educate those of you who are blissfully unaware so that you don’t become the jerk in an article over a misunderstanding.
 

Communication Needs

DynaVox

For someone who is non-verbal, taking away their communication device, whether it is an iPad, DynaVox or flip cards is like taping your mouth shut with duct tape. Would you like to sit through a flight or car ride or football game and not be able to express your thoughts or feelings? I know sometimes you wish you could tape someone ELSE’S mouth shut but let’s focus here. Really picture yourself doing something you do daily – chatting with a coworker, ordering food, explaining medical symptoms to a doctor, telling a joke – and do it with duct tape over your mouth.

Some of you may think, “ok so I’ll just gesture with my hands, point to what I need or nod my head”. Let’s see what would happen if you tied your arms down to your body so that you couldn’t use them and couldn’t stand up or walk, either. That’s how it is for people like my daughter. She can’t do sign language and her pointing and gesturing ability is limited. You might also think, “it’s just a short plane ride – what’s the big deal?” Well, besides the fact that that’s just plain stupid, what if the person has a medical emergency coming on (for example, some people get auras right before they have a seizure) or a leg cramp or just realized they need their medication or need to use the restroom? All very important reasons to be able to SPEAK!

 

The End Result

 

For those of you interested, according to the article the teen was able to keep out her iPad after an intervention from the pilot. Thinking about the commotion that must have gone on that would prompt the pilot to mediate, I would have been very embarrassed if it was me in that teen’s shoes. I’m sure there were some jerks on that flight who were annoyed that their flight was being held up “over an iPad” but now that you know why it’s so important for some to be able to hold on to their personal devices YOU won’t be that jerk if the situation ever arises! Hey, you may even be able to intervene on behalf of the person who can’t communicate as easily as you can! And that person will be blessed to have a good Samaritan around at just the right time!

A Little Girl's Thoughts & Dreams

I've often wondered what my daughter's thoughts look like. You can read a little about her here. Are they pictures strung together like the symbols on her DynaVox (her communication device that's something like a tablet but a little bigger and works similarly to web pages)? Or are they flashes of images just randomly popping up, not necessarily having anything to do with each other? I wonder if she jumps from thought to thought, like she jumps from one thing to another totally unrelated random thing in waking life. For example, using her DynaVox, she will say "snack cart" but not elaborate so I'll have no idea what she was just thinking about. Next thing she does is play a song off her MP3 list, so I guess she wanted to listen to music. Then she'll say she wants to play but then the computer will catch her eye and she remembers she already asked to go on the computer. Or maybe her thoughts are like a slide show. Or just sight words.

I also think a lot about her dreams. There was only once in her almost 16 years that she woke up screaming and crying really hard and I thought maybe she had had a nightmare but of course I have no way of confirming that. When she goes to sleep I'll say, "sweet dreams" and she smiles. I've asked her in the mornings if she had lots of sweet dreams and she always smiles and nods her head yes but I wonder: did she? Does she even know what dreams are? I mean, EVERYONE has dreams, right? Isn't that what they say? So I guess it's safe to assume that she does too.

Photo is from 2003

I can't help but wonder if in her dreams she can walk and talk. I was reading something about a teenage girl who has autism. She is non-verbal too but she spells and has found her voice through writing. Someone asked her if she is autistic in her dreams and she answered that sometimes she is and sometimes she isn't. When my daughter was about 5 or so, I had a dream that she was laying on the floor, floppy, because she had no tone to her body. Then just all of a sudden, she got herself up. She just stood up. It was so realistic because in my dream we were in the house we were living in at the time and everything looked exactly how it did in real life. I woke up right then and
                  I.
                    Was.
                        Devastated.
For that split second, I KNEW what it felt like to have a regular ol' kid and for the second time in her life it was yanked away from me. You know that image of someone standing on a rug and somebody else sneaking up behind him and pulling it out from underneath him? Yeah, that's what waking up from that dream felt like. 

I wonder if she has dreams like these. If she does, I would have to say that they don't devastate her the way mine do to me because she is always smiling when she wakes up. I mean, ALWAYS smiling. I think she knows a secret and just hasn't shared it yet. I can't wait to find out what it is!