Peter was our first child, and he changed our world. We adored him, just like any other brand new parents. It became apparent very soon on in Pete’s life that he was different, and he was diagnosed with West’s syndrome and subsequently with Lennox-Gastaut syndrome very early on. Lennox Gastaut syndrome is a particularly rare form of epilepsy that is resistant to control using conventional anticonvulsants.
Pete has many different types of seizures, some of which have caused him injury. When he was younger, the doctors told us that he would never walk and would need a lot of care. We were absolutely devastated.
But we were determined! Pete soon liked to bounce and feel the weight on his feet when I was holding him, and after a while he was able to stand! Sure enough in just a few months Pete was able to walk. It was re-affirmation for us of how special this young man was!
Pete’s sister came along 2 years after and she in turn grew up as young carer for him as well as being his sister. Everything in our lives was about Pete’s needs, from changing our house to accommodate his needs through to one year having to ‘cancel’ Christmas. With Pete’s autism, we had to keep everything on an even keel for him. He couldn’t cope with the change in routine, with the lights and the decorations, and of course all the visitors – he just didn’t understand.
Pete went to school, and stayed living at home with us. He was having numerous seizures everyday, but the special schools he attended learned how to manage them. Pete’s seizures and behavioural deterioration varied. He loved going to school, especially going out in his taxi and he started to develop, albeit slowly.
At 18 when Pete was due to finish school, things started to go really wrong for us. There was very little provision in Adult Services for an 18 year old with severe uncontrolled epilepsy, autism and developmental delay. Although Pete’s needs hadn’t changed, in fact he needed more help as he grew bigger and stronger, his chronological age now put him in Adult Services. We had things just right for Pete living at home with school, respite and home care help but that was with Children’s services. Adult services were going to be a very different matter.
We fought and fought to get a Day Centre or somewhere to take Pete during the day, but there just wasn’t anything, and we were advised that the only way forward was to place Pete in residential care. We were so reluctant to do this. My mantra is always “until someone else can do a better job than me looking after him, he stays with at home with us.” He may have been 18 years old, but he was still my ‘baby’, my responsibility, and it went against everything I wanted for him.
He deserved the opportunity to reach his full potential in life but I could see that we could not achieve that or care for him without the ‘package of care’ he had during his school years, and I knew that I had to let him go.
You hear so many terrible stories; what if he was abused, or they neglect him, or get his medication wrong? Pete wasn’t able to speak out; he has never uttered a single word.
Pete was placed in the ‘community’, living in a house on the local high street with other people with varying needs (but older than him). He really struggled here, and although we would visit regularly, we could see how unhappy he was. He started to regress – all the things he had learned at school were diminishing, because he wasn’t being stimulated. They didn’t know how to manage Pete, and so we took the difficult decision to remove him.
For autistic children, routine and familiarity is crucial to their stability. Moving Pete was a difficult decision to make, as we didn’t want that upheaval and confusion for him. But we knew we had to. We kept our fingers crossed that the next placement would be better for Pete.
We could not have been more wrong. Another community placement; Pete was in a house with three older ladies, who had been institutionalised for so long, they could not cope with their transition, and Pete suffered continually in his silence. All my worst fears were confirmed and again we had to move Pete away from this ‘home’.
We were absolutely at our wits end. There was no place for a boy like ours, and nobody who wanted to help. His whole life we have spent fighting for him, to get him the help he needs and deserves, and for every step we took forward, we fell back four.
Then we found St Elizabeth’s. Finally a place that could help manage Pete’s epilepsy and his autism, with people his own age, and staff who really cared. It seemed like heaven, from the hell that we had been through. We knew that this would be the perfect home for Pete, and we did everything we could to get the funding to secure him a place. Finally, after months and months, the funding was agreed, and we called St Elizabeth’s.
However St Elizabeth’s informed us that there wasn’t a bed available at that time, and they wouldn’t be able to take Pete. Our world came crashing down. All our hopes were dashed in that instant – our fight for funding had been in vain.
We had to get away and we took a holiday to Turkey. We spent the time, recharging, ready for the next battle. Thankfully when we got home, the call came. St Elizabeth’s had a place!
Our world changed. We moved Pete in that week, and finally we could relax. We said the night we left him “If we die in our beds tonight, we know that Pete is safe and cared for”. That’s all we ever wanted.
Pete now does his beloved swimming, and his bouncing from being a baby holds him in great stead for his trampolining that he loves! He has his own room and bathroom, and he has it just the way he wants it. It’s his sanctuary, the place he can relax and just be.
St Elizabeth’s have given us our lives back. I spent so long being Pete’s carer; I am now able to be his ‘mum’.