To put things into context, Isabel was 5 days short of her due date by emergency c-section only because labour wasn't progressing after 24 hours after my waters breaking. Her full birth story is here, but in a nutshell she took ill 16 hours after birth and was diagnosed with Group B Strep Meningitis. She did not respond as well to antibiotics as the consultants would have hoped and began to fit and her organs shut down, so much so that on her 3rd day of life the consultants suggested we christen her. And though she did pull through, an MRI scan of her brain just before she was discharged from hospital at 3 weeks old showed she had suffered what the consultant called 'an insult to the brain' and was likely to suffer visual problems and problems with movement.
At six months old, already with a weekly schedule of physiotherapy, visual stimulation, baby massage, and neonatal consultants, cerebral palsy was a completely new term for us. With the Special Needs Health Visitor completely clamming up about it, my partner and I were left to our own conclusions. Our immediate thoughts were that she would be a vegetable - even with the rose tinted glasses of first time parents we knew our six month old baby daughter had progressed little developmentally since birth - but as we desperately searched our brains for the term we both remembered children we had come across in various walks of life with cerebral palsy, all of which were fully mobile with just a subtly twisted limb. And all were quite a character.
Top of the search results for cerebral palsy on the internet that evening was something called SCOPE. This being the days of slow dial-up connection (it was 2003), bits of the Scope website appeared one by one on my screen, the first of which was the heading 'At Work', then 'At School'. It was such a revelation and relief to me, still harbouring the gut impression at my lowest moments left alone with my needy daughter that brain damage equals permanent vegative state, that people with cerebral palsy did go to school and did work. When the rest of the Scope homepage loaded it was a mine of useful and reassuring information about cerebral palsy. I finally had a succinct definition - 'damage to the infantile brain that affects movement'. Nothing too scary in that. And I had the reassurance that intellectual ability is as equally spread across people with cerebral palsy as it is in the 'normal' population. That was settled then. Isabel might have a slightly twisted arm or leg, maybe even need a wheelchair. She might need glasses for her visual problems, but she would be bright and and 'normal. Easy.
Over the next six months, although no-one spoke of cerebral palsy, it began increasingly clear that that was what Isabel had. She had suffered brain damage at birth and couldn't sit or do much physically at all. On her 1st birthday she was officially diagnosed to have both cerebral palsy and registered blind. Neither were a shock to us, and it still didn't tell us how able or disabled she would be (other than the lack of useful sight), but it was of use to have a name for her problems rather than the vague 'developmental delay' that was written on her notes up until then. Whilst we found the labels useful I was surprised how little people, even well-educated ones, knew about cerebral palsy. Although, given our own ignorance only six months earlier I suppose it is no surprise.
Isabel was 10 this year. She suffers from Spastic Quadriplegia. Spastic cerebral palsy is the most common of the three main types of cerebral palsy. Spastic means muscles are tight or stiff and Quadriplegia means the spasticity affects all four limbs, so she difficulty moving both her arms and legs. Isabel's cerebral palsy is severe, so that, together with her blindness, she cannot sit unsupported. She cannot crawl, stand unsupported or walk. She has to be strapped into a special wheelchair to stop her falling out. Physically, she has the movement of a six month old baby.
Isabel is not typical of a child suffering from cerebral palsy because there is no such thing as typical cerebral palsy. No two people are affected by cerebral palsy in the same way. With some it may be barely noticeable (I believe one of the Great Britain's Paralympian footballers was only diagnosed in his late teens when he sought help to improve his fitness), yet others like Isabel may need help with every aspect of their life.