Raising a Child with Cerebral Palsy

As another National Cerebral Palsy Week approaches, I am again reminded of how Cerebral Palsy (CP) has impacted my family, and how important it is to promote awareness and knowledge of disabilities.

We’ve come a long way since the days of tucking disabled kids away in institutions, of expecting and therefore receiving, nothing useful from them. People with disabilities have proved their worth in many ways, and continue to do so. Despite these wonderful strides, ignorance, misunderstanding and at times discrimination, still exist in the wider community.

When that positive pregnancy test comes in, the most distant thought from a woman’s mind is that her child may be anything less than what society deems perfect. It was certainly not something I ever considered during my first pregnancy.

Twelve weeks in I learned I was carrying twins (a shock in itself). Then at twenty weeks my pregnancy stopped conforming to the baby bible’s ideal when I began losing amniotic fluid from around one of the babies. My baby bible—complete with glossy photos of bulbous bellies, detailed diagrams and baby’s week by week stats—didn’t even hint at the possibility of this eventuality, let alone prepare me for any of the events that followed. Needless to say, this fabulous guide to all things maternal soon found itself in the bin.

Here are a few other things the baby-maker’s bible didn’t mention:

• 15-20 % of confirmed pregnancies will end in miscarriage.

• 1 in 12 Australian children have some form of disability. Almost twice as many boys as girls are affected.

• 1 baby in every 134 births is stillborn—often for no discernable reason.

• Approximately every 18 hours an Australian child is born with Cerebral Palsy.

My sons, Daniel and Joseph made their appearance eleven weeks before their due date, weighing in at barely three pounds a-piece. Joseph being the smaller twin didn’t survive, but I’m pleased to report that Daniel is alive and well and gearing up for his twentieth birthday next week.

For reasons I’ll never understand, it took the medical community eighteen months to admit that my son had a problem (the fact that he couldn’t sit up properly or walk wasn’t a big enough clue, apparently). Incredibly, when Daniel’s Paediatrician finally conceded that I wasn’t as neurotic as he’d earlier suggested and there really was something wrong with my child, he chose not to name that something, said only that Daniel needed ‘a little bit of physio’. The physiotherapist, however, had no such qualms about naming the beast—Cerebral Palsy. And she was only too happy to elaborate, announcing that not only would Daniel never walk, but it was unlikely he’d ever attend a ‘normal’ school. Both these predictions proved false.

What I’ve learned about raising a child with a disability:

• When a mother gets a deep-down all the way to her toes feeling that there is something fundamentally wrong with her baby, she is more often than not spot on.

• Just because a doctor / therapist / stranger in the street has an opinion, doesn’t mean they are right.

• Something is only a disability if you let it be.

• There is no such thing as nothing to lose.

In the early 2000s Daniel inspired a novel, a thriller about three teenage boys who are stalked by a somewhat mentally unhinged ice-cream man. The Ice-cream Man, a novel for kids 12+ was published by Ford Street Publishing in 2008. Aside from Daniel being my inspiration for this story, it occurred to me how important it was to ensure that like my son, one of the characters should be a kid in a wheelchair. The reason: to show readers just how able so-called disabled people are. Not only this, but kids with CP finally have a proactive character they can identify with.

As for baby and mothering bibles: Would it really be such a bad idea to include a little more information in these texts about how and what can go wrong during pregnancy and childbirth—not to mention advice on how to cope when it does and where to go for help and understanding? : Hmm, I’m sensing a niche. Best get writing!

The Ice-cream Man can be purchased from all good bookshops (see below)  or ordered through the publisher: www.fordstreetpublishing.com. 10% of the author’s royalties made from sales of this book have been pledged to Cerebral League Queensland.

National Cerebral Palsy week begins August 1 2010 and International Day of People With Disability is on December 3.