September 29, 2010

A quick note for parents of AAC users

So an I've mentioned before, I'm giving a presentation next week at ALATEC on AAC implementation, from a parent's perspective. (More about that trip soon.) The truth, however, is that my own experiences aren't terribly representative.

I'd love to get input from other parents who have experience implementing AAC into their child's life and curriculum. If you have any particular points that you think I should consider, please drop me a note, either here or by email.

Thanks for your input.

10 comments:

Barbara said...

Unique AAC program portrayed here:

http://www.exceptionalfamilytv.com/news/cerebral-palsy-leagues-camp-have-chat-network-10-coverage

Carol Askew said...

My perspective as a parent? The first thing that came to mind is that it's hard to integrate a device into our life at home. I constantly feel like I'm failing Megan. They do a much better job of it at school. There, it sits on her desk, and is integrated into the curriculum. At home, we tend to use modified ASL all the time. She can get her basic needs and wants conveyed that way, and she's able to do a lot of things for herself, and answer yes or no questions by shaking her head. It would be so much better if she could speak in sentences, talk to us about feelings, her day - the things that she could do if she were better at using her device. But in the whirl of evening activity, that just never happens. I am hopeful that with her new iPod Touch and the Proloquo2go software, it will be easier. The Dynavox V is more suited to sitting on a desk than running around. And it takes too long to boot up, so if it's off, and you have something to say, forget about it.

And last, I run across too many kids that could use a device and don't have one. I was at the children's hospital at a parent networking thing, and I'm asking - what about an augmentative communication device? Why don't you have one? There are parents out there that aren't on the internet all the time like me that don't know about them, and those that don't have the money to purchase them. The current system is failing those kids. Early Intervention and school systems should always be thinking - could this child use an AAC device and how can we get one for them? But apparently that's not always happening.

Those are my random thoughts. Thanks for representing us!

Elizabeth said...

I have tried off and on for ten years to implement a proper program for AAC for my nonverbal daughter. I have found it extremely frustrating -- promising, on the one hand, but not nearly enough follow-up on the part of professionals -- teachers and those trained in its uses. It makes me nervous, almost daily, at all the potential I've missed --

Sherry C said...

It's not easy especially if your child has mobility issue, fine motor issue, feeding issue there is so much too work on. It is overwhelming at times. School is great at helping thank god for teachers.

Alyson said...

To add to Sherry's comment, our biggest frustration and difficulty is determining exactly which AAC device to get. Our son is globally neurodevelopmentally and physically disabled, so just trying to determine what his communication level might be (or might grow to be) is a complete puzzle...then try to reconcile the issues of vision, motor planning, fine-motor skills, etc. and it seems nearly impossible. We've been talking about getting a device for a couple of years, and have met with several reps from different companies, but everyone is stymied and/or has conflicting opinions. He needs a fairly simple device in order to be successful enough that he's motivated to use it and will grow, but we also don't want to underestimate or limit him too much. If he could just TELL us where he's at...

Like Carol, I also suspect that we'll have more issues integrating the device at home than at school.

Sams mom said...

After two years of beating my head against the wall to get a Vantage for my son paid for by insurance, I threw in the towel. We got an itouch and Proloquo last year. My son uses it on occasion, but despite being non-verbal (Landau-Kleffner Syndrome) he is so interactive and communicative that ASL seems to work better. He used a Vantage at school provided by the school, but putting it in a backpack would almost topple him over (it weighs a ton) and he broke two of them over the years. The cost comparison and archaic type technology outweighed the years of experience of language forming that the Vantage provided. Wish they made a Vantage application for the itouch!

Karen said...

I'm not sure it's what you're looking for in the line of questions, but we're having problems with Micah actually wanting to use it. Sure, when he wants to, he will. But to actually communicate regularly? Not so much. Any suggestions?

Bick said...

As the dad of a non verbal son, I've shared each of the feelings expressed by the others who have posted. It's why I am now nearing two years of 90 hour weeks, 45 with the day job and 45 with MyTalk. MyTalk has made a difference in the lives of my son and I. If there is anything that I can do to help, please let be know. Bick www.mytalktools.com

Anonymous said...

My son's vantage has been an enormous help, in improving his total communication. For us it has become a bridge between what he can say, and what he cannot. His talker has also increased his verbal abilities significantly.

My son does not like to use his talker for spontaneous speech at school, and we have been working to remedy this challenge for some time now. He does however, use his device for reading,spelling and math. It has been a great help in gauging where he is academically.

I suppose as a parent the implementation of his device, has been fairly easy for us. It has been something that he has wanted to do. He often however needs a bit of prompting to use it. For example if he is unable to answer a question, I will prod him to use his talker. It often helps in such circumstances, if I ask the question with the talker myself.

His aac has opened many social opportunities as well. People are always curious about it, especially kids, and having my son answer questions about his name and age seems to make people more at ease with him lol. I think when people realize that there is more going on in his head, than may appear, they are more likely to treat him like he is more capable.

farmwifetwo said...

We're off at the end of the month to be assessed for one.

We have words, more comprehension that ability to speak.

One step at a time.