Do It Myself Blog – Glenda Watson Hyatt

Motivational Speaker

What Children with Cerebral Palsy Truly Need

Filed under: Living with a disability — by Glenda at 11:44 am on Tuesday, April 29, 2008

Reader's Question

A few weeks ago, Karen Putz asked this question, “For a child growing up with CP today, what are some things that we are still behind on doing for kids? What are some changes that could be made?”

Glenda's Response

Great question, Karen!

There have been so many advances in equipment and wheelchairs since I was a child. And, the relatively new field of assistive technologies has opened so many doors, particularly for children with more severe cerebral palsy. With technology, they can communicate, play music, use the computer, turn on lights and open doors, literally.

(With these advances, my cap has yet to come into being. A cap that would read thoughts and transfer them to the computer screen. Imagine how many minds, trapped within uncooperative bodies, that would unlock. One day, perhaps.)

In my opinion, what many of these children need is for the adults and decision-makers in their lives to look beyond the equipment catalogs and policy manuals and to develop solutions that work for the individual child. No two children with cerebral palsy are the same, so why are the solutions?

These children need to opportunity to reach their full potential, whatever that potential may be. As with any child, the early years are critical for maximizing development. But, when a young boy is seen only four times this year by the school district’s physical therapist – mainly to adjust his seating, not for actual therapy – because her caseload is overflowing and when the government refuses to pay for therapy outside of school unless it’s for post-op recovery, that is not acceptable. This child is not being given the opportunity to reach his full potential, unless his parents make further sacrifices to find alternative therapy for their son.

Another mother is left teaching her older son with severe cerebral palsy how to read because, last I heard, his special education teacher had not bothered to find a teaching method suitable for her child. For this particular teacher, his job was merely a paycheque. School for this child and his classmates is day care, rather than a stimulating learning environment. Their potential goes untapped.

A British father, frustrated by the lack of appropriate schooling opportunities for his daughter and worn down from fighting the system, banded together with other parents in similar situations to start their own school where their children learned and grew. Now, as their children reach adulthood and ready to transition to the next step in their life’s journey, the parents are left to battle the system to get services needed so these young people can continue growing. As the father said to me, a lot of energy is wasted in getting appropriate services, which detracts from family life and other commitments.

Imagine if these battles weren’t necessary and there was a cohesive and concentrated effort to provide children with cp with they truly needed to reach they full potential. Imagine what these kids could accomplish!

If you enjoyed this post, consider buying me a chai tea latte. Thanks kindly.

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5 Comments »

Comment by Karen Putz / DeafMom

April 29, 2008 @ 12:00 pm

How timely– this comes on a day where I’ve set up a meeting with my school district tonight with all of the parents together– a roundtable discussion of what is working and what isn’t. We’re going to brainstorm some solutions, I hope!

Comment by Pamela Troeppl

May 1, 2008 @ 11:29 am

As a mom to a child with CP, I read your insights with keen interest. She’s just 9 and is doing quite well, but you’re right when you say that the school systems for pt/ot are overloaded and they simply don’t take the time to find what works for each individual kid. Kudos to those parents to work tirelessly as advocates for their special kids!

Comment by Norman

May 8, 2008 @ 8:33 am

Hey Glenda
It’s nice to get a mention in your blog. “Nice”? What am I saying! It’s an honour.

Your link was for the school, which is a site not maintained by me personally. I can be found at http://paces.typepad.com/

What mostly drives me is the lack of debate about the education of children with cerebral palsy: how should teachers be trained? is there a need for a specific (not “special”) pedagogy? is there a need for specific curriculum? If we broaden this to include (a) very young children, what can we learn, for instance, from neuroscience about learning and development – and what does this mean for early years programmes? (b) adults, during and after transition from formal, full-time education systems, what should we be putting in place to support lifelong learning and well-being (mental, physical, emotional, cognitive)?

The only systematic answer I have ever come across is conductive education.

You are right to say that as my daughter has left school behind her, her Mum and I have been shocked at the lack of adult provision to replace it. Lately I’ve been having a rant on the internet, on another blog. It seems to have done the trick! We’ve just today had a really promising meeting. (http://paces.typepad.com/hallam_health_care/)

Well, I’m now booked to fly into Vancouver on 31st May and fly home again on 7th June. Might there be a chance we can meet up again? It would be great to do so.

Norman

Comment by Elaine

July 8, 2008 @ 6:16 am

Hi,

I am a teacher and I am going to be working with a child with cerebral palsy who has severe visual impairment from August. This child will be attending a mainstream school with support from staff from a Visual Impairment Unit within the school.

I am looking forward to teaching this little girl but at the same time am aware of my limited experience in this area. I will be able to give this pupil some individual attention in relation to the formal curriculum and will endeavour to tailor everything I do to suit her learning needs. However, I have been searching sights during my holidays to look for hints or tips on how I can enable this little girl to visually attend for longer periods than she can at the moment and to see if there are any other suitable materials that I can use to help her to develop both literacy and numeracy skills.

I have met this pupil over 9 visits to her nursery class where she was in the ’special unit’ with children with other severe additional support needs. This little girl may find the mainstream school (with almost 500 children) rather daunting but I feel that she should be given the chance to learn alongside her able bodies and sighted peers.

Any help would be greatly appreciated because I have five weeks of holidays left and will have time to make resources and get reading to prepare me to teach this little girl and enable her to reach her full potential. Thank you!! Elaine

Comment by Bobbie

January 7, 2010 @ 9:45 am

I am currently a student in college who is doing research on children with cerebral palsy. I was wondering if anyone could list some activities that I could do with children who have cerebral palsy.
Thanks alot and my hats go off to all the parents who have children with cerebral palsy. Just from having a visitor in our class of a mother and her son WOW what a job.

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