April is HIE awareness month. It also holds the anniversary of my first encounter with this thing I could barely pronounce much less understand. Hypoxic Ischemic Encephalopathy. It took a while to learn to spell it and understand it. And even longer to embrace it.
HIE robbed me of the relaxed early parenting experience I surely deserved for number two child. It threw us into a whirlwind of hospitals and appointments, tube feeds and medication. There were so many questions about our girls future, and ours, and very few answers. “She might…. She probably won’t…” My girls’ brain injury was severe, so her prognosis wasn’t flash. But as much as the medical-ese wasn’t measurable, neither was her spirit. Once she began to escape the swelling of her brain her light started to shine. Even so, it was difficult to picture a future for her which was independent of me.
The awareness catch phrase is “Hope for HIE”. It is difficult to reconcile those two terms at times but last week I could. Hope is having a glimpse into the future and it looks bloody fantastic. I used to be scared to look ahead. So scared. Life was doable if I stayed in the moment. HIE has such varied outcomes for kids that the picture of an older child wasn’t necessarily where my child was heading so the unknown possibilities were terrifying. Then a young bloke and his dad lifted my hope to that ethereal place somewhere in the rafters.
I shall refrain from using the “I” word for they are ordinary people like you and I and often the idea of being “an inspiration” weighs heavily. The promise I gained from them was wrapped in their ordinariness. They live life with all of it’s joys and disappointments and the many road blocks along the way. But they kept looking for ways to fulfilment…and still do. The dad is bravely listening to his (big) kid and letting him take the lead. This young man has some mad switching skills along with incredible know how and fierce determination…and a wicked sense of humour. He has made his own career with his dad (and the rest of his family) cheering him along. The key to this young man’s light shining through? Assistive technology.
Obstacles tend to fall in your path if you need wheels to get around…sometimes literally. When you speaking voice is unclear that multiplies enormously. The assumption that having no voice means you have nothing to say, is unfortunately still common. An eye gaze communication device is helping dispel that myth for my girl. Switch access options to things like household appliances and computers are taking that a whole lot further and give more choice and control than ever before. This young bloke and his dad reminded me that good, ordinary people are taking steps forward for us all. And aren’t they fabulous people to walk this path alongside…even from a distance.
The days of people like my child being locked in an institution are in the past (mostly). The time of people assuming she should have no choice in her education and only be suited to a “special” or being kept at home are waning. The day when she can work and play in any setting she chooses with the assumption she is more than competent to do so is coming…I hope. The technology to help her achieve that is here and improving all of the time. I place my hope in my kid. She will be the one to know what she wants and have the grit to get it. I remember what she said about Stephen Hawking in an assignment last year…..”he clever because his disability. It make him think differently.” When I see her life as a straight line with speed humps she will see the wiggles she needs to get around those suckers. Hope is her.
Cerebral Palsy Awareness day has been and gone again. I wonder if the world is any different. Is every building accessible? Can any adult with CP access meaningful activities/employment? Is positive language being used (I’m looking at you “R” word!)? Have folk stopped staring?
I cannot answer yes to any of these questions (yet). They are all aims to keep striving for but are they a measure of lack of achievement? I think not. I reckon progress can be gauged in smaller increments.
My getting-bigger-by-the-minute girl has two applications pending for some kick a**e technology. One to cruise independently (and add to my grey hair!) in a powered wheelchair. The other will enable her to use her eyes to talk (I know right…amazing)! If there is such a thing as a time to have cerebral palsy, now is it. Amazing technological advances are becoming cheaper and allowing for new levels of involvement and independence right across the disability sector.
Positive role models are more prevalent then ever too. Skilled athletes gave their all at the recent Paralympics shining a light on the “ability” in disability. Kids of all abilities are regularly popping up in chain store advertising. Social media platforms allow many more voices to be heard. My kid doesn’t have to look far to see people like her living life well.
There’s lots of good stuff going on for people with CP (in amongst the crazy everyday juggle) that I can recognise when I pause and reflect. It may be pertinent to remember that people with cerebral palsy and other disabilities were routinely institutionalised until only 20-30 years ago. That is a big shift in attitude in my lifetime. The world is not perfect for my girl and the extra challenges she has but it is perfect-er.
Sport is not really my thing. I take a passing interest but participated only when I had to at school. I acknowledge that many people are passionate about it but sometimes I feel saddened that a person who can run really fast gets more recognition than one who has to use all their willpower and effort to communicate their thoughts and share their ideas. It seems unbalanced and unfair. They both work so hard to achieve their goals. Still, such kudos for physical skills is harder to swallow now I have a child with Cerebral Palsy. This week though the weight seems to be more evenly placed.
I have watched some of the Commonwealth Games and, like many of my unsporty compatriots, have jumped on the Aussie bandwagon. It seems to be a friendlier competition than the Olympics. Even more so when I saw an unexpected event…para-swimming. Para-sports are at the Games. Not afterwards, not separate, not a “demonstration” as per the Olympics but a part of the action. How fabulous. Better still the medals earned are included in their national tally. And so they should.
Apparently I haven’t been paying attention because this is the fourth Commonwealth Games at which para-athletes have been included. Wouldn’t it be fabulous if the Olympics could follow suit? The practicalities of two such big events merging to one may be too challenging…but hoping for it is a good start. Cerebral Palsy Awareness Week began Monday here in Australia so I’m pleased to be feeling hopeful. Pleased that such a public event is modelling inclusion and acceptance and celebrating the capabilities of our top athletes (even in my capacity as a self-confessed non-sporty person). My hope for my own child and her friends this week is recognition of their capabilities. Isn’t that what we all want? To be recognised for abilities rather than the lack of them? Some champions swim and some switch. I am inspired by a young man who is paving the way in assistive technology…check out his story.
The future looks bright. Aussie Aussie….oi oi oi.