Sally's World

As you know my youngest son, Deion has Cerebral palsy, I was talking to Trojan the other day and he rightly pointed out that not everyone knows what that is exactly. After he did the amazing 'Yellow Lightning' comic book for Deion, one of his work colleagues asked him about Deion and Cerebral Palsy.

I'm not an expert...except on Deion's Cerebral Palsy and how it affects him... but here a few facts...

Cerebral Palsy is a broad term used to describe a group of chronic movement or posture disorders. “Cerebral” refers to the brain, while “Palsy” refers to a physical disorder, such as a lack of muscle control. Cerebral Palsy is not caused by problems with the muscles or nerves, but rather with the brain’s ability to adequately control the body. Cerebral Palsy can be caused by injury during birth, although sometimes it is the result of later damage to the brain. Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time.

Deion was born 12 weeks early, and had a severe brain hemorrhage at 4 days old, affecting a large part of his brain, and the ventricles in the centre of his brain also swelled leaving the rest badly scarred.

As the right side of Deions brain was affected the most, he has no use of his left side, but it affects both his legs and all his muscles. Its called triplegia.

Of course, there is so much more to it, and there is a huge range scale of how it affects children.I know lots of kids with Cerebral Palsy, and you would never know there was anything wrong, others are severely limited and speech, eating and even blinking can be affected. Deion is not affected intellectually, just physically, but this is not always the case.

Deion has the type of Cerebral Palsy that means his muscles are tight, so he has physiotherapy and a series of stretches and exercises to help lengthen and release the tight ones, and others to help strengthen the weak ones. Without them, Deion would find it hard to sit straight, hold his head or use his arms.

He has an occupational therapist to help with his hands, she makes him special splints to stop his hand bending over at the wrist, and gives us exercises to help him with his grip.

The speech and language therapist helps with...wait for it...no not speech LOL! chewing and swallowing...anything to do with the mouth and throat muscles. She tells us what he should and shouldn't eat, consistency, texture e.t.c so he doesn't cough and aspirate while eating.

So these are the main ways that cerebral palsy affects Deion, it is different for every child depending on what part of the brain is injured, and how extensively...it's sort of like asking 'how long is a piece of string?'

Personally, I think the brain is magical and can often find other ways to function. When Deion was six days old the doctors told us he would never smile, never sit up, never speak...I'm off for a refund now...because I can't get this child to shut up for five minutes!!!