Transition Period – A Cliff Edge

When I was diagnosed with Quadriplegic Cerebral Palsy at the age of 1, the Doctors told my parents I’d never talk or walk. How wrong could they have been? Sure, I was late to the party, but I eventually learnt the word ‘ironing’, then ‘fork’ and then ‘Carlisle Gran’. Pretty soon after, I realised that my talents included; talking the hind legs off a donkey and keeping my parents on the edge of their seats every time we were in public and forks were in my eye-line. That word, for reasons you can guess, doesn’t sound right when it’s being yelled out of a 3-year-old’s mouth whose pronunciation is less than accurate.

Single words became full sentences, and full sentences resulted in my Paediatric Physiotherapist having to let me down gently when I announced I was ‘going to be a ballet dancer when I grew up’. She tactfully suggested that choreography might be an alternative option. We got on so well because we’d both take first prize for the most stubborn people on the planet. Week after week, we’d practice ‘nose over toes’ so I could stand, ‘London Bridge’ so I could stand with my bum in and tummy out. And finally, ‘left, right, left, right – pick those feet up’, as we traipsed up and down any corridor we could find with my sticks and Kaye-Walker.

Our efforts to prove the severity of my diagnosis wrong were greatly aided by everyone within Lincolnshire’s Paediatric Services, who would lend a hand every time we needed yet another piece of equipment: An Arjo Stedy, a standing frame, a Bronco and a turntable to name but a few. The problems that couldn’t be solved with equipment could be fixed by my legs being sliced, diced, poked and prodded. With each bit of kit or operation, came a new goal to reach the next level of independence. With every ‘team meeting’ which invariably happened whilst we were squashed inside an inaccessible accessible loo, came a new strategy. And with every victory, came a step in the right direction to me reaching my full potential.

At 19, when I was due to leave Paediatrics and go into Adults Services, I had the best possible chances for a smooth transition. I had the greatest team I could wish for who’d put everything in place, so all the new team had to do was maintain it. I also had my condition on my side because Cerebral Palsy isn’t a changeable disability. For sure, I have days when I’m naturally more spasm-y than others, but as a general rule, you get what you’re given with CP and you strive for maximum independence. In some cases that could be wobbling around a 5K race, and in others that’s learning how to say ‘fork’ in the least offensive manner.

Nothing could’ve prepared me for the cliff edge that is the Transition Period. I went from having everything at my fingertips to having no professional to turn to. From having weekly physio sessions to having no physio for 4 years. From looking forward to a life of independence to wondering how much longer I could keep it together. And before you say it, I understand the NHS is stretched and I understand that what I received from Paediatrics was Gold Standard – I’m not blaming anybody in Adults Services, but nobody stops being disabled when they’re 19, 25 or 125.

In the 4 years from hell, I became increasingly chair-shaped, I resembled the Tin Man when I tried to move and my health, both physical and mental, was on the floor. Prior to leaving Paediatrics, I’d just about untangled myself from a lengthy dance with anorexia, but my recovery came to a grinding halt. When my anxiety couldn’t manifest itself through the control of food, it presented as low self-esteem, social anxiety and a bunch of other stuff I’m still trying to fathom out. I’m a writer, public speaker and all-round creative. I’m making a living by articulating, advocating, and promoting disability integration. But when I put myself back into the blackhole of Transition, there aren’t words. What then, happens to the people who aren’t being heard and don’t feel their voice is worthy?

As it was, I landed on my feet (not literally) when I was referred to the Rehabilitation Unit at Lincoln County Hospital. You know what they say; you wait for a bus and two come at once. Well, in my case, it was twenty. In no particular order, (because it’s all a bit of a blur) there was an influx of Physios, OT’s and an increase in my Personal Budget which my support hours shot up from 53 to 75 per week. Ultimately, this led me to be able to employ a Private Physio to bridge the gap the NHS couldn’t fill due to their own deficit. It meant I was able to put a physio program and an exercise regime back in place because I had the hours and the expertise to do so.

I’m now 26, so that equals 4 years of no support and almost the same again in order to get my life back on track. And no, I’m not putting all the blame for my crisis period on the Transition Period. In reality, I was immature, uncomfortable in my own skin and didn’t know which way was up. But I think that’s partially the point. As I said, I know services across the board are under financial pressure and I agree there should be more funding available within Paediatrics, but at present, the balance is too skewed. To strip the services away from young people when we’re trying to find our feet in the world as well as navigating everything disability throws at us, seems nonsensical and pretty poorly timed. Disabilities don’t just pack their bags and wander off when we hit a certain age either. They still require a professional input, maintenance and consistency, else we end up living the majority of our lives feeling nothing other than disabled.

I consider myself lucky because I came out the other side of Transition relatively unscathed in comparison to some people. Whilst it’s up in my top three of ‘hideous times in my life I never want to repeat’, I gained something from it. It changed my perception of what it means to be disabled. It informs the professional choices I make as I aspire to highlight and close the gaping hole between Paediatric and Adult Services. Do I have the answers? Absolutely not. But I passionately believe everyone has the right to be heard and valued – to live and not just to exist.

January 28, 2020 7:24 pm

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