The Institutes in Philadelphia
By veteranparent · June 23, 2012 at 10:05 am · 7 replies
In Raising a child with cerebral palsy
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I saw a recent post on Brain Training. I went back and found some people considering looking into The Institutes---we did their program for over 11 years. It does take up most of your time---however I was already spending all of my time taking care of my sons, so it wasn't as overwhelming as I anticipated. I still have never found any other program that addresses the physical, neurological and psychological issues of severely brain injured children in the same whole-child manner as The Institutes.
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By kiley1
Reply 3159217
June 24, 2012 at 7:32 am
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hi there if you dont mind me asking what did your child gain from this therapy, was there notable changes in the childs progress,, i would be greatful if you could explain what your experience with the before and after effects of this brain training ,,thank you and kind regards
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By Chudo
Reply 3159534 · In reply to 3159217 by kiley1
June 24, 2012 at 10:56 am
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Hello, we ve been on institutes program for 3 years now.
We gained crawling, creeping and talking.
I am very interested in someone who did the program for so long.....
In the progress, in your expectations, what yet you have to achieve.
Waiting...)
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By veteranparent
Reply 3160147 · In reply to 3159217 by kiley1
June 24, 2012 at 4:18 pm
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Our son was severely brain injured baby. We started the Institutes program when he was 18 months old---in between hospitalizations. He had no mobility except for being able to roll. After the first six months he was able to crawl on his belly (even with a g-tube and central line), and his respiratory status was much improved. Over the next few years, he easily learned to read, and learned to creep on hands and knees. I firmly believe that he would not have survived his babyhood if we had not been on the program to build up his respirations and get him moving. This was in 1987, and we stayed on the program until 1998. I love and respect the staff, and I still keep up a bit with what is going on. They have never found (or sought, as far as I know) a university or other research partner, so all of their research is heavily dependent on their clinical experiences. This often holds them back in terms of professional reputation. Their program is also insanely difficult for the families of the children, however, we found that we were working with our son all day anyway---the program gave us goals to work towards rather than just keeping him alive and wringing our hands. There did come a time when we got to the point of diminishing returns, and we felt that he would be better served by using the school services in our community with us continuing a much reduced physical program. We did that without feeling guilty, because we knew we had given Pat and the program our best shot, and for the sake of our entire family, we needed to move on.
So if you are considering this, look at all of its aspects carefully. If you go for the initial assessment and training week, you will leave with a no punches pulled plan for treatment and a clear understanding of why you are doing what you are doing. Brain Injury is dramatic, therefore so is the treatment.
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By veteranparent
Reply 3160149 · In reply to 3159217 by kiley1
June 24, 2012 at 4:20 pm
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Our son was severely brain injured baby. We started the Institutes program when he was 18 months old---in between hospitalizations. He had no mobility except for being able to roll. After the first six months he was able to crawl on his belly (even with a g-tube and central line), and his respiratory status was much improved. Over the next few years, he easily learned to read, and learned to creep on hands and knees. I firmly believe that he would not have survived his babyhood if we had not been on the program to build up his respirations and get him moving. This was in 1987, and we stayed on the program until 1998. I love and respect the staff, and I still keep up a bit with what is going on. They have never found (or sought, as far as I know) a university or other research partner, so all of their research is heavily dependent on their clinical experiences. This often holds them back in terms of professional reputation. Their program is also insanely difficult for the families of the children, however, we found that we were working with our son all day anyway---the program gave us goals to work towards rather than just keeping him alive and wringing our hands. There did come a time when we got to the point of diminishing returns, and we felt that he would be better served by using the school services in our community with us continuing a much reduced physical program. We did that without feeling guilty, because we knew we had given Pat and the program our best shot, and for the sake of our entire family, we needed to move on.
So if you are considering this, look at all of its aspects carefully. If you go for the initial assessment and training week, you will leave with a no punches pulled plan for treatment and a clear understanding of why you are doing what you are doing. Brain Injury is dramatic, therefore so is the treatment.
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By veteranparent
Reply 3160153 · In reply to 3159534 by Chudo
June 24, 2012 at 4:22 pm
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How is your kiddo doing? What was his status at the beginning and what is he up to now? I know some of the same staff we had is still there, especially the Domans---who is your advocate?
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By Chudo
Reply 3160288
June 24, 2012 at 5:59 pm
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Hi'
Nice to know about the progress of your son!
As I have written, we could not do anything till the beginnig of the program.
In 2 weeks after beginning of patterning we started to crawl. In 2 years after this we started to creep. And the speech was slowly developing during the 3 years. Now we speak in sentences.
Not all children with spasticity could reach that.)))
Our advocate is Leia. She is the best'! Though all ¨people are just wonderful there.
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By katriona
Reply 3160560
June 24, 2012 at 8:27 pm
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Thank you for your post. We have just started the program. It is a lot of work, but as you say, we were doing a lot of work everyday anyway. We were always just as busy, but with goals this time. I am finding it hard to maintain the energy, as with any of the other work we were doing because I wonder if anything we do actually helps. I also find that communication with the Institutes is not the easiest. I'm glad you had such a great experience. This was encouraging to see that you kept this up for 11 years.
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