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:
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 â€œtalk moreâ€ 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?
Leslie, thank you for asking such a great question! Hopefully by responding in a separate post, itâ€™ll spark a lively discussion and others will offer suggestions in addition to the ones Iâ€™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 doesnâ€™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 daughterâ€™s desire to â€œtalk moreâ€ 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.