Music at Your Fingertips: Radios, Switches and TBI

I was heading to a home visit on a long highway through wheatfields, making my way to a small country town. Turning off the highway, I passed an old feed store and headed down what used to be a frontier brick and stone building -lined main street. If you dumped truck-loads of dirt on the street to cover it up and threw in a few cowboys on horses, you would think you were on the set of a western movie.
When I arrived at the house, using a Powerlink 2 from Ablenet, a Big Red switch on a universal mount, a radio and an lamp that looks like an aquarium, I set up a cause and effect activity for a non-verbal 4 year-old girl in a wheelchair who had a traumatic brain injury when less than a year old. The doctors said she would never be able to do anything, but the 2 aunties who care for her and love her have worked hard to get her to respond and clue in on what is going on around her.
Since her arm was hanging down off the side of her chair, we mounted the switch so it sat under her fingertips. I moved her fingertips slightly so she could get the feel of flexing them a little to make the switch trigger the radio station and the aquarium lamp on, timed for 3 seconds. As soon as the music started she rolled her eyes and opened her mouth, but when the music and lights stopped, she didn't try to get it going again. We verbally encouraged and coaxed, and finally I moved her fingertips and started the music and lights again.
"When we say funny things, she laughs," shared one aunt. "Not too long ago when we were talking about my sister having to be gone part of the day and a sitter needing to be here, she started to cry. We think she knows what is going on."
"I am sure she does. If she can move her fingertips to make the music play and gets the idea that she can have control over it, it will give her some power, and the stimulus will get those synapses' firing and we can build another block in the foundation," I encouraged.
We moved out to the back step of the house and continued to visit when suddenly from the living room we heard the country music station we had the radio set on, begin blaring through the house.
"She did it by herself!" cried one of the aunts.
I watched as the other aunt with me, began to tear up, her eyes showing the excitement of what she was hearing. "We know there is alot going on in her head and we want to see her world open up."
"She is just like any other typical kid inside," I said. "She will trigger the switch and do what she wants on her timetable, not ours." It seemed like when we were staring at her and waiting for her to do it, she wasn't going to. But as soon as I was out of the room...there it went!
I shared a few strategies with them on how to use the timer on the Powerlink and left them to experiment and play.
What a lucky girl to have 2 aunts that care so much. She is just starting to expand her abilities and there is so much ahead.

All the best to you!

Lon

Lon Thornburg is an assistive technology specialist and professional development trainer who lives in Oregon and serves 12 districts in 7 counties. He hosts the No Limits 2 Learning Blog and The No Limits 2 Learning Live Talk Show on Blog Talk Radio. He is sharing as a contributing writer on LD LIVE!



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Facilitating Assistive Technology: Working with Families as Experts

A few weeks ago, I had a parent contact me, concerned about some options we were presenting for her child using assistive technology. She shared that she felt she was the expert on her child and that we were moving in the wrong direction.
Let me state that, #1: We would not have done anything until a meeting with the parent, and #2: we were looking at some options for accommodating curriculum at school, not new access, a new wheelchair, new routine, etc. She had heard round-robin through the assistant about our ideas and was emphatic that we not try them.
I keep going back to her comment that she was the expert on her child. I had positive and negative emotions on that one. I have been turning it around in my mind and have all kinds of thoughts on it, but today I attended a webinar with Roberta DePompei, Ph.D. from the Unversity of Akron in Akron, Ohio. Her presentation title was "Working with Familes after Traumatic Brain Injury: Families as Experts." (It will be available on the TBI Educator website in a few days if you would like to view and listen to it.)
I believe, as Roberta does, that there is a lot of valuable information that parents have to give. The traditional assumption is that professionals are the experts with technical resources and knowledge, but Dr. DePompei shares that there are TWO other experts - the student who lives in the diability and the people who live with the disability. She shares that when you are in doubt, consult and trust those living with the disability, in this case, traumatic brain injury - or after brain injury.
Now to my parent a few of weeks back...
I would hope that I present myself as a professional who values the input and significance of the student and the family. If not, I need to work on it because I do believe in it. A good assessment is made by a team of professionals and family members. When professionals disregard the information that parents and a student can contribute in decision making, diagnosis and assistive technology considerations, then the implementation can run into snags and waste everyone's time (and money).
I hope you will take Dr. DePompei's suggestion to heart in your practice and allow parents and students to give their perspectives and be recognized as the experts they truly are. They have a lot to contribute. Now I need to re-address these affirmations to the families I see and work with.
All the best to you!
Lon

Lon Thornburg is an assistive technology specialist and professional development trainer who lives in Oregon and serves 12 districts in 7 counties. He hosts the No Limits 2 Learning Blog and The No Limits 2 Learning Live Talk Show on Blog Talk Radio. He is sharing as a contributing writer on LD LIVE!



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Teenager Shares: Surviving TBI and Having a Great Life After High School

"I was a popular girl in my high school, a cheerleader. This is me with my date for the prom. Here I am with my friends. I made a bad choice and now I am in this wheelchair and can hardly talk to you."
I was at a TBI conference this past fall, listening to a young woman share about her traumatic brain injury through a Powerpoint slide show. She was able to talk to us, but her condition was a far cry from the person we saw in the pictures on the screen.
" I thought nothing could happen to me. I was at a summer outdoor rock concert with some girlfriends. Some boys we met wanted us to leave with them and drive around. I called my mom and dad and told them what I was going to do. They said "No, come home now," and I got mad and told them off, hung up and went anyway. Our car was t-boned by a big pick-up and I was taken to the hospital."
There had been alcohol involved, and the one of the group was killed in the accident. Our speaker shared about her recovery and how hard it was. How she had to learn to talk, to read and write again. She talked about choices young people make thinking they are indestructible.
"You might think this will never happen to you. You need to listen to your parents because they know more than you think. They are trying to protect you even when you think they are being mean. I had everything, good looks, lots of friends and popularity. I still have my family and friends but I lost a lot of who I was and what I was. Don't be like me. Stay away from situations where you can get hurt or killed. Make the right choices."
I was amazed at the courage this young woman had. She had been taking her show "on the road" as it were to share in high schools throughout Oregon. She wanted teens to hear her story and maybe think twice before getting in a situation where this could happen to them. She has a woman friend/care giver and business partner that she works with to manage and operate a therapy pool center in their community as well as a business doing gift baskets.
I am heading to another TBI training here in a couple of weeks, and in conversation today, this girls story came up. I will have to ask at my next meeting about more specifics on her name and contract information and see if she has a website. If I can, I will get some information to you. I just thought her story would be an encouragement to all of us that we can make our life into anything we want, no matter the circumstances, if we are able to see our potential and work to do the right things. Have a great week!
All the best to you...
Lon

Lon Thornburg is an assistive technology specialist and professional development trainer who lives in Oregon and serves 12 districts in 7 counties. He hosts the No Limits 2 Learning Blog and The No Limits 2 Learning Live Talk Show on Blog Talk Radio. He is sharing as a contributing writer on LD LIVE!



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Missing: 90,000 Children with Traumatic Brain Injuries

Nationwide Statistics show that there are far more cases of Emergency Room- verified Traumatic Brain Injury in children than there are identifications of TBI disabilities in schools, according to Karen McAvoy, Ph.D. and Judy Dettmer, Ph.D.
In a 2-day workshop on "RTI, Assessment, & Special Education Process for Students with Traumatic Brain Injury", I found some very interesting information that I am passing on to you with our colleagues' permission.
Our trainers shared that TBI has been classified as a low incident disability, but when you look at the ramifications of nation-wide statistics from the U.S. Dept. of Education, The National Center for Disease Control and the National Pediatric Registry, the data tells an interesting story...

National Data:
The National Center for Disease Control states that there is an annual average of 435,000 Emergency Room visits, 37,000 hospitalizations and 2,685 deaths among children due to TBI. This number only identifies those who had the injury reported and were admitted to a hospital. It does not include injuries where the child remained under care at home and did not receive formal medical treatment or where the patient was released without a TBI diagnosis. Because the actual number is low due to the non-reported incidents, experts think that the actual number could be closer to 1.4 million children with TBI injuries a year.
The U.S. Department of Education has said that there is an average of 475,000 TBI injuries among children a year. Their data shows that during the 1991-1992 school year, there were a total of 4, 499,824 students receiving special education. Out of that total, only 245 were served under a TBI disability category. During the 1999 -2000 school year, 5,683,707 students were receiving special education services and of that total, 13,874 children were served under the TBI disability category. 2005 data shows that out of 6,021,462 students receiving special education services, there were 23,449 TBI students.
The above statistics show an increase in children served under the TBI category from 1991 to 2005, and according to the speakers at our conference, there was a lot of hard work done in building awareness about TBI in the school sector during those years.
It is interesting to note though that in 1991, Autism received its' own disability category and in 1992 there were 15,302 students identified. By 2005, there were 192,643 students identified as having autism. There were around 170,000 more identified students for autism than TBI.
In Oregon, 2006 statistics show 1008 students hospitalized for TBI. Oregon had 269 identified students that year.
The National Pediatric Registry reports that 19% of youths who sustain a brain injury will have long term disabilities. Reviewing the data from USDOE and using the 19% guideline, we could conservatively estimate that 19% of 475,000 average reported injuries a year leave us with 90,250 a year nationally. If in 1991 there were 245 children identified, what happened to the other 90,005 children? The presenters asked us, "Are we missing 90,000 students with brain injuries?" and more importantly, "Why are we not identifying these students?"

I will share tomorrow on some possible reasons for identification issues as well as some of the charateristics of TBI for those of you who might like to learn more about TBI. I will also share some AT ideas during the week as well.

All the best to you!
Lon

Lon Thornburg is an assistive technology specialist and professional development trainer who lives in Oregon and serves 12 districts in 7 counties. He hosts the No Limits 2 Learning Blog and The No Limits 2 Learning Live Talk Show on Blog Talk Radio. He is sharing as a contributing writer on LD LIVE!