Wednesday 2 October 2013 is a big day for us. Boo will be exactly 18 months old (actual, not corrected), it will be 6 months to the day since I wrote my very first blog post, and it’s World Cerebral Palsy Day.
World Cerebral Palsy Day is a great initiative. I’m a big fan of awareness days and weeks. I’ve written in support of several (World Meningitis Day, Volunteers Week, Carers Week, National Breastfeeding Week) since starting this blog and World Prematurity Day in November is looming large in my mind at present.
But at the same time, I worry that awareness days and weeks have their limits. I worry that for each of those to whom advocates manage to speak, there are many others who don’t hear or listen, or who do, but when the days or weeks have past, lose sight of the messages in the hectic activity of their own lives. I am as guilty of this as anyone else.
World Cerebral Palsy Day is different. It isn’t just an awareness day; it’s an activism day and in just about the most imaginative way possible. People with CP, their friends and families or an budding inventors with a mind to improve the lives of others are invited to come up with an idea that would change the lives of people with this neurological condition in material ways. Oh and they have to communicate this in a 1-minute video or text. Dragons Den contestants eat your hearts out.
I love the creative, proactive and positive attitude towards cerebral palsy this campaign encourages almost as much as I lament my own inability to be as inventive and creative as any of the entrants. And I wish I knew what I could do to make life for Boo and children like him easier. Of course, the answer is that I am still working things out.
Cerebral palsy is not a progressive condition, but its presentation can alter, in none more rapidly, perhaps, than in the developing child. We just don’t know what particular challenges Boo will face. I don’t know if he will stand independently or walk. I don’t know whether the high tone in his arms will prevent him from writing or feeding himself. I don’t know if his speech will develop typically, whether he will be cognitively challenged or delayed, or whether his epilepsy will return. I don’t know how hard life will be for him.
The not knowing, as I have written about many times on this blog before, is one of the hardest things to deal with in our life. It’s hard on all of us, even and perhaps especially, Sissyboo, who wants to know if her brother will be able to play football or go to her mainstream school. Of course, knowing would make no difference to how we feel about him, but it might help us to plan better, to do all we could to make a difference to him by anticipating the challenges ahead and mitigating them wherever possible.
But for all I don’t know about Boo’s future, I have come to know a good deal about cerebral palsy in the last 18 months. Despite cerebral palsy being one of the most common physical disabilities in children – as the Scope website will tell you, it affects around 1 in every 400 children in the UK – I must admit that I knew pitifully little about it before Boo’s birth.
Some of the most difficult moments in our lives are those where we are met with the prejudice of others about Boo’s disability or their well-meaning attempts to make us feel better about it (‘Oh, I’m sure he’ll walk, he’s a boy and they’re always a bit lazy’, you know the sort of thing…).
I can’t invent – I’m just not creative in that way – but I like to write and have a place to do it here. So this is my modest contribution to World Cerebral Palsy Day 2013. Here are some of the things I’ve learned about cerebral palsy, with a side-order of some of the things I wish people didn’t say to us. Please note, though, that I am not a medical doctor and I am just explaining things as I have learned (I hope correctly) to understand them. For more information, please visit the fabulously informative and accessible Scope website.
1) Cerebral palsy is a neurological disorder most often caused by a brain injury sustained pre-, during or soon after birth. In Boo’s case, he sustained a bilateral brain bleed after contracting an infection (probably meningitis, but the sample taken for testing was contaminated and therefore ambiguous) on day three of life, having been born 11 weeks early. This left him with PVL (softening of the white matter around the ventricles that had become enlarged during the bleeds).
2) The brain injury makes it difficult for those living with CP to control their movement or posture as their brain is telling their muscles to do things that impede voluntary action. This isn’t a nervous disorder (although Boo, like many diagnosed with CP has some difficulties making sense of some of the sensory feedback his body receives in unfamiliar surroundings), neither is it a muscle problem. Boo is neither ‘strong’ nor ‘weak’, though lots of people have said these things to me. His muscles present varying degrees of tone. High tone or hypertonia means stiffness or rigidity when the muscle should be at rest (this affects Boo’s arms and legs). Low tone or hyptonia (which affects Boo’s trunk) manifests itself as floppiness or the marshmallow effect, as we call it.
3) CP can affect one limb, one side (hemiplegia), three limbs, or all four (quadriplegia). The mouth (and therefore speech) can also be affected. Boo has quadriplegic CP, a phrase that seems to really frighten people (and there seems to be a good deal of confusion about quadriplegia and paraplegia). All this means is that his CP affects his arms and legs.
4) There are several different types of cerebral palsy:
a) Spastic cerebral palsy is the most common presentation. Spasticity means high muscle tone (stiffness and decreased movement range). Oh and let me get this off my chest now. Please, please, please, don’t ever use the term ‘spastic’ pejoratively. It is no better than the r-word and often used interchangeably with it. And yes, I take great offence at anyone using my son’s physical disability to disparage others. I consider this a gesture of hate and profound ignorance.
b) Dyskinetic, dystonic (as Boo’s consultants call it) or athetoid cerebral palsy can involve involuntary movements or, as it Boo’s case, rhythmic twisting.
c) I must confess that I know least about ataxic CP, and it is not especially common, but it affects the whole body and manifests itself, as I understand it, in balance problems and sometimes difficulties with spatial awareness.
Like many living with CP, Boo’s presentation is mixed: spastic and dystonic.
5) CP can be associated with problems with speech and it can be accompanied by cognitive difficulties but many people living with the condition face neither of these challenges. Don’t make assumptions either way (that goes for healthcare professionals, too, who in my opinion are some of the quickest to judge!).
6) CP is not, as I’ve already said, progressive; neither can it be cured (those managing the grotesque pantomime of disability benefit assessments take note). The brain injury is static. That said, years of moving in particular ways can cause musculoskeletal problems and lead to painful discolations and multiple surgeries.
7) But, neuroplasticity (the brain’s capacity to rewire around damage after sustaining an injury and something we take for granted in adult stroke patients, for example) is an amazing thing. Some of the latest research in neurorehabilitation is very encouraging and early intervention of various therapeutic kinds can produce good results. Boo has physiotherapy, is under two occupational therapists, will start speech and language therapy and we also attend a conductive education school for parents once a week.
8) But again, I’m going to repeat myself. Never make assumptions. CP affects individuals individually. Two people can have the same diagnosis and present, to use a clinical term I don’t much care for, very differently. And the numbers or words used (mild, moderate or severe, for example) to categorise CP aren’t all that clear. If you want to know how CP affects someone, you need to ask them, or in Boo’s case (because he’ll just grin at you and call you Dada) ask their family.
9) Oh, and CP isn’t a disease. This common slip of the tongue might seem innocent enough, but its implications are far-reaching and profoundly unhelpful. You won’t catch anything from spending time with my son, except, if you’re lucky enough, a love of life, and an infectious laugh that will pull you through even the toughest days.
I would do anything to make the life of Boo and others living with CP better. I wish I could come up with something practical and life-enhancing. Maybe one day. For now, spreading awareness of CP feels like all I can do.
I’ve said this before, but it’s worth repeating. CP is something that many people live with. But it does not define them. Taking the time to understand that, as well as understanding CP itself, could make a very real difference to their day-to-day lives and those of the many of us who love and are inspired by them.