As I sit downstairs enjoying a well-earned glass of wine, I can hear squeals of delight and the occasional bump coming from upstairs. Three of my four children are up there: all should be, if not in bed, then reading quietly, ready for sleep. But instead, they are playing happily and cooperatively. Moments like these are the ones parents’ savour. They are even more poignant in our house because, when our third child was born, we weren’t sure he would survive the night. At ten days old, he was diagnosed with Prader-Willi syndrome, and we were left wondering what sort of life he might have, and how it would affect not just him, but our whole family. Hearing those joyful squeals of brotherly play is incredibly precious.
So why have we sent him away to a residential school, only seeing him every six weeks? The short answer is simple: this is what gives him the best chance for a successful, fulfilling life.
When Gideon was diagnosed, I knew very little about Prader-Willi Syndrome. The Prader-Willi Syndrome Association (PWSA UK) provided invaluable information and support, helping us plan for the future. He didn’t ever have processed food or sugar or simple carbohydrates. We even limited fruit. We worked closely with our dieticians to ensure he stayed healthy. Unfortunately for us, Gideon started showing signs of hyperphagia from the age of two: as soon as he could walk he would take food. I remember following him around a softplay because he was stealing food out of bins. He couldn’t have been more than three years old at this point. We worked with a skilled dietician to provide a ketogenic diet for him in the hope this would help improve his hyperphagia, unfortunately it had no effect. Gideon continued to show a high level of food seeking and would do things like let himself out at night to forage for food in bins (he was 6 when he started doing this). We were supported via Occupational Therapy and other professions to have various locks and alarms fitted to both internal and external doors.
He started at a local Special School where he thrived and they worked closely with us to keep his weight healthy and stable. Gideon grew into a wonderful little boy who loved role play and anything medical – interests that remain to this day. He needed extra care, but we managed.
Covid and lockdown came: and these hit us hard. Despite government guidance to the contrary, Gideon’s school closed and refused to take him. He was unable to attend respite. We were homeschooling 4 children, with very different needs. On top of this, the specialized lock on our kitchen door broke and we were unable to get it mended during lock down. Routines and boundaries that we had put in place over many years began to unravel very quickly. Partly due to this, and partly due to the very nature of Prader Willi Syndrome Gideon’s weight began to creep up. Ironically he was part of a medical trial for a drug to treat hyperphagia throughout this time. This drug has now been licensed in the US to treat hyperphagia in PWS. Unfortunately it had zero effect for Gideon, and his weight actually doubled whilst he was on the trial.
As well as the challenges with his weight, Gideon’s behaviour was becoming more and more unmanageable, both at home and school. He would have periods of intense and violent dysregulation where he would be a danger to himself, others and to property. Again I leant heavily on PWSA UK; I learned his behaviour was absolutely textbook PWS. This did make me feel slightly better, but as parents we still felt we were failing – and not only failing Gideon but also failing his three brothers who had to live with such a high level of unpredictability. Family life revolved around Gideon and his needs. Always.
We worked closely with his school, his therapists, his psychiatrist (I can’t tell you how sad it made me to have a ten year old who needed a psychiatrist), but we didn’t see any real improvements. At his best, Gideon is the loveliest young man you can meet: kind, engaging and with a brilliant sense of humour. He has the purest heart and expects the very best of everyone he meets; he almost always gets it too. However, his challenging behaviour is indeed exceptionally challenging!
By the time he was 12, his school was clear that they ‘couldn’t meet need’. It didn’t take long to establish that no local schools could. I had been speaking to fellow PWS parents who had spoken about an amazing residential school in Burton on Trent. We made enquiries and from the first contact they were amazingly welcoming and reassuring. One point they made to me really stood out: that actually we should consider residential schooling sooner, rather than later, before challenging behaviours were too entrenched to change. This really spoke to me: I have always been clear that I want Gideon to live as independently as possible. Clearly for him, this will look very different to the ‘independent living’ his siblings will achieve, but in order for him to achieve the best, Gideon will need tools, strategies and support to manage his behaviour. He needs more than his family to achieve this; he needs a full support team 24/7.
It was a long road convincing those holding the purse strings that our chosen school was the right one for Gideon. I attended many MDT meetings, again with ongoing support from PWSA UK (you’ll notice a theme here – we couldn’t have managed without them).
Gideon started at his new school 6 weeks ago, so it’s still early days. He is at a school that is providing a highly bespoke curriculum for him. He spends time on the farm, in forest school and does lots of exercise each day without even realizing. His food intake is strictly controlled and from his first day staff are working closely to establish what Gideon’s triggers for dysregulation are and helping him with strategies to manage them.
Life at home is different. My older boys are doing A levels and GCSEs and I have time to properly support them. I am not washing wet bedding four times a week. We don’t have to lock every door and start every day at 4am. Of course we miss him. We get daily emails from both school and residential – they keep him busy and engaged and he face times us often. We are counting down the days to when he will be home for Christmas.
But I also know that when he goes back in January, it really is the best option for him. His school are providing care and opportunities that we just can’t within a family home. My eldest is likely to go to university next year – so 50% of my children will be away during term time. I always knew I wanted Gideon to have the same opportunities as his brothers and that would include going away to college. I didn’t expect him to leave just before he turned 13, but this was what was the right decision for him. As parents we want the very best for him; it’s our job to provide that, and for Gideon, that was going away to school. This decision, though difficult, is an act of love: giving Gideon the best possible chance to flourish and to live a life filled with learning, joy, and independence in the ways he needs it.
Thanks to Rae for sharing her story with us. We wish Gideon, and his loving family, the very best for the future.
