Tuesday, 30 April 2013

Cerebral Palsy & Me

The first time cerebral palsy was spoken of, the Special Needs Health Visitor asked if any of my six month old daughter's therapists or consultants had mentioned 'cerebral palsy'.  When I said no, she said 'oh just forget I said it'.

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.

When I first told mums in my local Mother & Toddler group that Isabel had cerebral palsy one inched away from me asking if it was catching and another asked how she'd caught it, thinking that cerebral palsy was an infection.  And often explaining that it was caused by brain damage didn't help, as like I had initially done, many assumed that brain damage meant Isabel was a vegetable at worst or retarded at best.  I even once tried to compare cerebral palsy to someone having a stroke, as I realised that people don't seem to assume retardation (for want of a better phrase) with stroke victims just because of they have difficulty speaking or walking.  But the woman I was talking to said 'Oh my God, she's had cerebral palsy and a stroke!'  So I ended up just sticking to saying she had cerebral palsy and letting people draw their own conclusions in the hope that one day she'd prove them wrong.

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.

Unlike many at her Special School for children with physical disabilities, Isabel can talk as the muscles involved speech are not affected (although she has just begun to stutter as she has so much to say which makes people who don't know her often walk away before she has managed to say a word).  She has a remarkable memory, often remembering songs, poems, and stories after one reading.  She does have Moderate to Severe Learning disabilities which are not caused by the cerebral palsy but the extent of her brain damage at birth.  The damage to another part of her brain too, not cerebral palsy, is the reason for her blindness as the part of her brain that controls vision is affected.  She has Cortical Blindness which is damage to the cortex in the brain, and does see shapes and colours but not reliably.

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.

When Isabel was born I was frustrated that our particular  consultant seemed reluctant to give us any indication of what a child with brain damage might be like.  Other parents consultants in different hospitals seemed quick to pronounce what their babies would amount to.  But now I am so pleased that he didn't.  It is impossible to know how someone young or old will recover from brain damage.  Our consultant said the brain is an amazing thing and it is impossible to say how it will develop.  Isabel is more disabled than we let ourselves imagine, and the waiting game to see how she would develop was awful.  But letting her disability unfold slowly over the years has given us time to adjust, and encourage her.  On paper she doesn't amount to much. But she is so much more than the sum of her conditions, and regularly astounds teachers, therapists, and people who meet her for the first time.  Isabel may have cerebral palsy and associated difficulties but she is no fool - she just loves playing the clown.  Isabel is just Isabel.  Nothing more and most certainly nothing less.

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