Parents' Corner
Confined to a wheelchair…? I think not!
Access to AAC all Day LongRobin Hurd
Often, the rest of the world around us sees our children in their wheelchairs and thinks, “oh, how sad that they are confined to a wheelchair.” “Confined to a wheelchair” --- how misleading! It’s as if our kids are always in the wheelchair 24/7. Reality is that most children who use wheelchairs for mobility are in and out of the wheelchairs, other seats, gait trainers, standers, etc. And they certainly don’t sleep in their wheelchairs! When our kids are in and out of different pieces of equipment throughout the day, it can be hard to keep communication accessible to them.
The problem of what to do for access to AAC when a child is not in their wheelchair has been a big topic of concern for many of us. So this article compiles a list of great suggestions from the experts: other parents!
Two big areas of concern that our recent discussion focused on were how to call the parents from the bed and how to access the AAC system when not in the wheelchair. This article will share suggestions for both of these situations separately.
When in bed
After we tuck our children into their beds, we want to know for sure that they can get our attention if something is wrong. Some of our children have a little speech, but most cannot call out, “I need a drink of water” or “I need to go to the bathroom”. And many of our children can’t take care of these items without assistance.
For this type of situation, a lower tech solution was recommended. Eleanor Giriyappa recommended a battery operated BIGmack switch plus an infant monitor to amplify the sound. Pam Harris recommended a single message, motion sensitive device or two for the bedroom or bathroom. The child then only has to move in front of the sensor to activate the message. For more of Pam’s ideas, see the June 2007 Parents Corner.
Rose-marie Gallagher shared: “For calling at night, we use a baby monitor to make the most of our daughter's vocalizations. She doesn't have control over what the sounds are, but she has learned to produce noise voluntarily. I love the idea of the BIGmack or a motion sensor to activate specific messages, but unfortunately the motor control to reach them is less under our daughter's control than to make rough vocalizations. If the child in the question has the same motor control issues that we deal with, the BIGmack may or may not be a viable option.
To help our daughter develop the skill of making sound at will, for that capacity is still available to her, she's been playing with a Squawker's McCaw she got for her birthday. It has a feature where it will repeat back what you say, only it morphs the sounds into "parrot voice." This is amazingly motivating for her! Even her squeals and hoots become pretty hilarious with the voice changing. She is having to learn some timing...listening for his signal to make sound and then doing it within a time frame...which is HUGE for the motor planning issues she faces.”
Access out of the Wheelchair
When children are out and about but not in their wheelchairs, access to their AAC system is important. Changing their position allows children to bear weight on their developing bones and muscles, practice new skills and relieve pressure areas or reduce the risk of getting them. But being in a different position can also reduce the ability to communicate—which we don’t want. Here are some great ideas from parents. Many of these children have significant access issues, and can’t just plop the device on the floor nearby.
Mary Jane Bradley writes: “Accessing his device with a headpointer is always a problem any time he is away from the most perfect position, his computer table. He's never at his best and most reluctant to use his device when it's positioned any other way. However, we are always trying new things. I've attached a couple of pictures of him using his device in bed. I came up with this idea when his legs were really bothering him and I had to have him out of his chair for bits of time. I found a little table at the thrift store. It was a type of a baby chair with a tray around it. I took out the chair and the tray, velcroed the rods going across the top, then laid him underneath it with the device positioned on the velcro rods. It is not perfect, but he can use it this way. We also hooked a monitor up to his laptop and laid the flat screen monitor on it in the same way. He cannot lie comfortably on the floor, but this should work on the floor also.”
Using Equipment in Different Ways
Lisa Herren shares: “(Keeping the device handy) is exactly what we struggled with when Lauren was smaller--when she was in and out of her chair more often. In her case, positioning was critical, so using it anywhere other than her chair was difficult, if not impossible. An option we have used for mobile mounting is a modified IV pole. We attach the Daessy QRM to it.
Another thing we have done which has been particularly great has been one of
those mobile tables like you see at a hospital (there are cheaper versions available through home medical suppliers) and we have used a desk mount on that. This has been really great as she has gotten older and had more school work. We always have need for other tables which can be positioned with textbooks, laptop, etc.”In a Walker
“We thought you might enjoy seeing the tray (actually was a cutting board) David attached for Jessie's vantage so she can attach it to her walker.....the back of the vantage has industrial velcro so she can remove it as needed when she is at a table or desk ....now with the vantage within reach she is learning to use it to greet others she meets in the hall...she is enjoying it.” David and Merlie Jackson. For more specific information on how they did this, see the Idea Album.
Many, many great possibilities are available for children who are in and out of their wheelchairs to keep their AAC systems handy and accessible. Hopefully these great ideas from other parents will get your brain perking to come up with easy, effective solutions that help to keep communication available for children who are not “confined”!
P.S. If you have fabricated items to support use of AAC assistive technology, please consider sharing your solution at the Idea Album by emailing a description, instructions to construct and a photo to me at rhurd@aacinstitute.org.
Your feedback is always valued. parents@aacinstitute.org.
