What Children with Cerebral Palsy Truly Need
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?”
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!
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