Cerebral Palsy Alliance

Posts Tagged ‘advice’

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A cure for cerebral palsy?

Regular readers of my blog would know my son Daniel (14) has had cerebral palsy all his life.  While his CP only limits his movement, mostly to a wheelchair, we are fortunate that he has the gift of a great mind and can articulate himself and his needs through speech albeit with difficulty.  He has faced a lot of obstacles in his short life, as detailed in my blog, however it is a life for which he knows no different.

As parents we recently we found ourselves in a situation where the question was posed to Daniel, “If you were able to have an operation to remove your cerebral palsy, or lessen its effect, would you?”.

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The Little Things

Looking after a child, or in fact anyone, with a disability takes its toll on the carer’s body. It’s the little things that we, as carers, do on a regular basis that slowly wear us down. The effort required is 24 hours a day and our bodies don’t get a chance to repair. Most of the solutions to assist us are aimed at the big tasks such as lifting him in and out of, say, a bed, bath, or toilet, but there are so many mundane tasks that wear you down.

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Independence vs. Cost of Mobility

The transition from primary to high school is a big step. Now throw into the mix new friends, new location, new demands on homework, a new teenager as well as a disability, and you have a child under considerable pressure.

Just like primary school, Daniel has had a teacher’s aide with him in order to push him around in the wheelchair, scribe for him during lessons, assist him with practical tests, etc. There was, however, one thing that we did not count on – his desire to be independent.

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You want to leave me with Daniel? … alone?

Penny came home a couple of weeks ago to advise me that our youngest (William) was going on a school excursion to Canberra and that she was going to accompany his class as one of the volunteer parents.

Apart from the fact I liken, volunteering as a class parent on one of those trips to the slow and consistent pain inflicted when whipping yourself with a cat-o-nine tails, she was determined to spend quality time with William.

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