Two families share their accessible family holiday experiences; a ski trip to the French Alps and a family camp in California
Mum Rachel Yates: “Our 12-year-old son Alfie has Duchenne muscular dystrophy. This is a muscle-wasting condition, meaning that every muscle in his body is getting weaker. He was able to walk until he was 11, although he began using a powered wheelchair when he was nine, as he was starting to struggle to get around school. He is now fully dependant on his wheelchair. Because it’s a progressive condition, we have to focus on what he can currently do, while having an eye to what he won’t be able to do in the days, and months ahead. It is desperately sad.
Holidays have been a nightmare to sort for several years now. We are an active family and love sport. We have a younger son, Oli, who is eight. He is a true ‘sports billy’! So finding a holiday with the right balance is hard. We are also very lucky to live in a lovely home in a lovely area that we have managed to kit out for Alfie’s needs. But this means that finding somewhere that works equally well, that is equally as nice, is very difficult. So many places that are advertised for ‘disabled people’ are actually kitted out for old, less mobile people, and are often ‘tired’.
At the start of 2017, Alfie said he wanted to go skiing. I thought that would be impossible and so put it out of my mind. Then Alfie had a bit of an emotional breakdown one day (he’s usually super-positive and copes so well with his condition – incredibly brave!), but things just got too much for him. In response to that, I decided that we would go skiing. I started with Google and came across Ski 2 Freedom. It was a golden moment.
I sent an email enquiry and Catherine called me back rather than emailing. She knew just what I needed. Catherine understood the stresses and strains of our family life without me having to say anything at all. She understood what it takes to be parents, working full time, doing normal parent stuff and then doing all the extra stuff that you do as a parent of a child with significant additional needs. And she understood not just the physical strain that it puts on you but the emotional strain – knowing that you are going to lose your child means that you carry such a depth of sadness in your heart and yet paradoxically you feel blessed for every moment that you have together, so you never take your child for granted.
I explained I wanted a mountain experience for us all, but particularly for Alfie – a resort that worked for us, where we weren’t battling against the odds. Catherine proposed La Rosière in the French Alps, staying with Faye and Mike in Chalet Matsuzaka. And it was just perfect for us. The chalet is absolutely beautiful, a place where we could read books on a cosy sofa in front of the fire.
Alfie skied in a ski kart with an amazing instructor, Lionel. Catherine recognised that with Alfie’s needs, this was the only way he was going to get out there on the snow. Lionel helped my husband hoik Alfie into the ski kart each morning, and out again after two hours. He took Alfie across the mountains, travelling at super-speeds – up to 110km/ph. Alfie saw more of the mountains than the rest of us. Catherine also pointed us in the direction of clip-on skis for Alfie’s manual wheelchair. These turned out to be a fantastic investment. It meant that we could walk with Alfie along the beautiful woodland path between the two sides of the La Rosière resort. That walk was magical at Christmas, with lights in the trees.
A week before the trip, Catherine called me to see how I was. At that point I was pretty terrified – she knew I would be, which is why she called me to reassure me that it would all be fine. Faye and Mike had helped sort out how we were going to get from the airport to their chalet (you can’t book a wheelchair-accessible taxi from the airport and you can’t hire a wheelchair-accessible car!). They were ready for us, having helped us hire a mobile hoist (needed to transfer Alfie from bed to chair/chair to loo, etc) and had helped sort all of our ski lessons.
Seeing Alfie come down the slope for the first time and seeing the smile on his face at the bottom made me cry. I loved seeing Oli master his snow ploughs. Having two hours on my own on the slopes brought me great peace. These holidays have literally changed our lives.”
Mum Sally Hodgkinson: “Our daughter Isis was diagnosed with type 1 diabetes (T1D) in April 2016, when she was eight years old. It was all so shocking and we knew very little about it. I am American and knew the US offers ‘medical’ summer camps, because my stepfather runs an epilepsy camp in Minnesota every summer. I wanted something that would feel like an adventure for the whole family, including our son Rex, who was six. When I discovered the T1D family camp in California, I figured we could build a holiday around it and take in some of my favourite spots. We wanted to send the message to us as a family that things may have changed, but it will bring good things to us as well as new challenges.
We spent a week at Bearskin Meadow Camp, run by the Diabetes Youth Families, in the summer of 2016. The kids did all the usual camp activities; swimming, climbing, hiking, games and crafts, while me and my husband Charles attended classes and support groups. It was an amazing setting, nestled in the mountains between Kings Canyon National Park and Sequoia National Park. The staff either have T1D themselves or are trained medical professionals in the area. We slept out under the full moon on large sleeping decks with two or three other families on camp beds. In the morning, they woke us up by blasting brilliant music from Jethro Tull to Mozart over loudspeakers in the huge pines and redwoods that surrounded us. Our sleeping bags were wet with sap and dew. It was gorgeous, and a novel experience for us as a family, which took the focus off the diabetes and helped soothe the shock we were all still grappling with.
Other highlights included a midnight hike up to Cathedral Dome, where we sang songs and heard funny camp stories by the light of a huge moon. And something called the ‘firsts lists’ in the canteen, when kids could write down a ‘first’ they had accomplished during the week of camp, ranging from conquering a zip-line to injecting their own insulin to changing a pump site without tears. It was very moving.
It really helped us to be around other parents who understood what we were going through. Hearing the endless stories of people struggling to cope, rising to new challenges and accepting that their everyday lives were changed for ever was one of the most powerful things I have ever done. I believe it has helped Isis immensely, as she felt a part of something strong and fun and exciting outside of her school and home life, where no one else we knew was living with T1D. She now has a number of friends from all over America at different stages in their T1D journey who she can look to for support and inspiration. It has also really helped her in meeting other kids with it in the UK, and feeling confident to talk about it with other people, most of whom confuse her condition with T2D and often make judgements. She is happy to educate people gently, which she definitely learnt at this American camp.