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



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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



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TBI Interview Gives Tools for Parents and Teachers

If you didn't listen to the interview with Patricia Sublette yesterday on No Limits to Learning Live, you missed some great discussion on working through TBI with families, strategies to help these students and some AT discussions:
We discussed the transition back into school after a brain injury, the physical healing process and then the hard work of getting used to developing new skills for learning. Students come back without a strategy for accomplishing tasks, knowing how to work through and finish tasks, etc.
Strategies for reminding students, presenting tasks lists and AT such as using cell phone features, peer note-taking with One Note software for the tablet PC and even the use of the Nintendo DS were discussed.
We also touched on issues of sports injuries and being informed on protocols for concussion and brain injury. With the spring and summer youth sports such as little league, soccer and swimming seasons as well as camping and outdoor recreation season coming, we need to be aware of the higher incidence for injuries.
Patricia had stated that there are about 1.4 million brain injuries in the U.S. annuallly and that half of them are children between 16 and 21 years of age. Because of the high risk-taking nature of teens and the fact that they can survive head injuries better than older adults, they make up a high percentage.
The National Center for Disease Control and Prevention, TBI Publications link has free brochures, wallet cards, posters, DVD education sets, clipboards, etc that you can order to give away. These are great tools to educate coaches, families, young athletes and camp leaders/counselors.
Access the Brain Injury Association of America website and Patricia's TBI Educator site for more information.
The actual site for the No Limits to Learning Live where there are more blog posts, past archives and more links for Patricia are at: http://www.blogtalkradio.com/nolimits2learninglive
You can hear the archive of this show by clicking on the Blog Talk Radio Player on my sidebar and go to the web area by clicking on the profile icon within the player.

All the best to you!

Lon