Do It Myself Blog – Glenda Watson Hyatt

Motivational Speaker

Creating Safe Places Encourages Communication with iDevices

Filed under: Living with a disability — by at 3:23 pm on Tuesday, April 26, 2011

In my last post Wanted: AAC Role Models, Leslie Porter asked a question that I feel deserves a response in a separate post rather than being buried in the comment section:

Reader's Question

I am appreciative of your article. I have a 15 year old daughter who has athetoid cp as well. We have read your book and she could so relate to many situations. She has had an ECO 14 device for years but getting her to use it has been difficult. We got an iPad and Proloquo2Go last year or so but she is so reluctant to use it so she sticks with talking to close friends and family and being quiet in new settings. Just last week she said she would like to “talk more” but I think having the iPad as a viable option to her speech (which new people have a hard time understanding as you well understand) would really help but she needs safe opportunities and role models to get to a point she is comfortable using this. Any suggestions?

Glenda's Response

Leslie, thank you for asking such a great question! Hopefully by responding in a separate post, it’ll spark a lively discussion and others will offer suggestions in addition to the ones I’m about to share based on my own experience.

From my experience over the last few years, I have realized how much of a factor confidence plays in spontaneous face-to-face communication. Confidence that what I am about to say is relevant to the current conversation; confident that it doesn’t sound stupid or inappropriate. And that confidence is built over time.

As you mentioned, communication requires feeling safe. On my recent trip to South by Southwest (SXSW) in Austin and then the 26th Annual International Technology & Persons with Disabilities Conference (CSUN) in San Diego, many of my online friends who I had previously met face-to-face were at SXSW. There was already a sense of familiarity and intimacy with them. Communicating with some meant using the iPad for the occasional word when they were stumped on Glenda-ish; with others it meant using the iPad for the majority of the interaction. Either way was fine, and each successful exchange gave my self-confidence a little boost.

When I arrived at CSUN where I knew relatively few people, I was feeling confident in using my iPad for communicating. Also, I found the CSUN environment and people very accepting. i felt safe in using my iPad to communicate, which further boosted my confidence.

Leslie, I would suggest encouraging your daughter to begin using the ECO 14 device or the iPad (the situation might determine which device is more appropriate) with family and close friends – although I realize that may be clumsy if they all already understand her dialect. It may take a conscious effort to encourage her to use her device of choice. Reward the small successes. Then gradually increase interactions with people less familiar with her, and try other kinds of interactions like ordering a burger in the food court, making a hair appointment or whatever.

If your daughter uses the grid view in Proloquo2Go, add teen appropriate language, like her favourite movies, bands or current hotties and any relevant local words to help facilitate communicating with her peers at school. If appropriate, involve her in the process of adding the words. If she can do it herself, awesome!

As for role models, that may be a little more tricky to find. Many of the YouTube videos are of younger kids with autism or cerebral palsy using Proloquo2Go, which may not inspire a teenaged girl. My Twitter friend Leanne Stewart did come across Lyn Levett who uses her iPad with her nose.

On her blog, Katilea shares her journey living with Ataxia. The iPad with Proloquo2Go has been a life-changer for her. Kati is a whiz at creating new pages in the app.

I have shared many of my iPad adventures here on this blog, and  I now see capturing a few of those adventures on video would benefit others. I will work on that.

Other places to find willing role models might be local disability groups, rehab centres, employment programs for people with disabilities, colleges and universities.

Hopefully my readers will have other suggestions for finding role models using the iPad for communication.

Leslie, your daughter’s desire to “talk more” is the first step. Encourage her to communicate in safe situations. Gradually those situations will grow as her confidence increases. Role models, close by or from afar, will help teach her to communicate in this manner, in ways teachers, therapists and parents can not. Follow the pace she sets for her journey.

Good luck and please let me know if you have any more questions.

If you enjoyed this post, consider buying me a chai tea latte. Thanks kindly.

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Comment by marylee stephenson

April 26, 2011 @ 3:54 pm

as always, a thoughtful, innovative approach from Glenda, responding to the difficulties others face in communication. Always learning, when reading Glenda’s “chats” with us out here in the e-environment.

Comment by karen

April 27, 2011 @ 11:08 am

I have a further suggestion that may/may not work based on the personality type of your daughter, Leslie. If she were willing to keep some kind of a record of her experiments with her devices, be it in a diary, video, or even audio form, it would be interesting for you both to review as you go. Ultimately, but only if she is into this sort of thing it could turn into the exact type of record that Glenda is talking about: an early teenager’s adoption of the technology to suit her … something she might choose to blog about or post her own YouTube videos if she’s pleased with the results of her experiments.

But, and I can’t stress this enough, I am only making this as a suggestion, exposure may/may not be your daughter’s cup of tea.

As a long-time friend of Glenda’s (since we were 7), I can honestly say that I still don’t get every word of “Glenda-ish” … despite my deep desire to do so … anything that augments my communication with her so that I hear her (like her book, for certain) is an immense improvement for our friendship.

Comment by Bob Easton

April 27, 2011 @ 12:52 pm

Most excellent response Glenda!

Perhaps I can offer encouragement from a different point of view. Several decades ago, I was promoted from a computer engineering position into management. A colleague came to me and advised that I would now be exposed to more people, would have to talk more “in public,” and would likely need to make formal presentations, etc. His advice included an invitation to join a local “Toastmaster’s International” club. Toastmaster’s is a teaching organization that has a very successful process for helping people adapt to public speaking. I learned many valuable things there, and ONE thing in particular.

No, I’m not suggesting that Leslie’s daughter either join Toastmasters or try to conquer public speaking. That one important thing is to recognize that reluctance to communicate is universal and normal. For those fortunate enough to have no disabilities, polls show that public speaking is feared 2nd only to death. … and if there is any reason to be shy about oneself, the fears increase.

I so enjoyed Toastmaster’s that I operated clubs for many years, aimed at the computer engineers around me. Many were technically brilliant researchers with multiple Phds, yet many of those same people had the personality of a river stone (let’s call that a certain kind of disability) and were extremely frightened of making presentations to sell their ideas. We helped them over those fears.

My wife teaches advanced English to college aged speakers of other languages and includes a public speaking segment in her teachings. She finds exactly the same thing, great fear .. this time mostly from the “disability” of speaking a new found language without perfect confidence.

It is absolutely normal, no matter what our abilities to fear “looking stupid” to others. That’s it in a nutshell.

In these stories is a common thread. Leslie’s daughter is experiencing a very common fear, a kind of normalcy. She is however to be commended and encouraged in every way possible for taking the first steps. From this point on, always encourage. Never discourage.

The “safety” factor is that of learning and growing within a group, whether it be our close friends, our classmates in a language class, or our colleagues in a Toastmaster’s club. Gain comfort there, then move outward.

I’ll wrap this longish reply up with two points:

1) What Leslie’s daughter might appreciate is knowing that a reluctance (let’s not say fear) to speak is absolutely normal and she can find solace with billions of other people, not just those with this disability or that disability.

2)) The sure process is “Start talking and keep talking.” People will be far more interested in what she has to say than how she says it.

Comment by Joe Cheray

April 28, 2011 @ 8:49 pm

What is athetoid cp?

My son has cp and well the school and I threw back and forth getting him a communication device. I am glad that I decided not to. His vocabulary is leaps and bounds better than what we anticipated. He is still hard to understand when he talks too fast and well during times of too much stimulation. He is not shy that is for sure he will talk to anyone. LMAO.

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