Time to Reflect
Holidays for me are partly about taking stock and reflecting (because I get precious little time for that in my everyday life). Holidays can bring into sharp focus the different experiences we have as a family with a disabled child. This is partly on a very practical level as we have to plan around Ben’s needs, but it can serve as a reminder that our experiences as a family are rather different to those without a disabled child. I don’t mean this in a negative way at all. I wouldn’t change a thing, but our lives and experiences are now different and I think it is important and healthy to acknowledge that, and reflect on what it means for us as a family.
Getting to our destination is pretty involved. We have to pack carefully, ensuring we have all Ben’s equipment and medication. We have become expert logisticians over the years! Ben’s has disordered sleep which is often worse when we are away from home. Forgetting the Melatonin would be a catastrophe on holiday!
Whenever we go anywhere with Ben, we always have three vital factors to consider; Is it accessible? Are there suitable toilet facilities? Can he eat safely? When travelling on motorways and relying on service stations, it isn’t always easy to get this right. They are mostly fairly accessible, but the situation with toilet facilities and suitable food is inconsistent. I will never forget the first time we experienced a Changing Places facility at a service station. What could have been a hugely stressful and undignified toilet stop was so easy and straightforward. Life would be so different for Ben and for us as a family if we could be sure of access to such facilities when we are out and about.
Ben has coeliac disease and has to follow an aggressively gluten free diet. He was diagnosed in 2011 and eating out has certainly got easier since then. However, for those with coeliac disease, there’s more to it than just avoiding gluten. Food must be prepared and kept separate from foods containing gluten and whilst many cafes and restaurants are aware of this, some are not. Being glutened makes Ben very ill – particularly hard to deal with away from home.
Technology makes long car journey’s manageable for us. I download a few of Ben’s favourite TV programmes onto his tablet, and together with his DS console, he is usually happy and calm. We play ‘I Spy’ and other similar games and Ben enjoys playing with his teddies and reading his favourite books, but I don’t think realistically we could manage a journey of seven or eight hours without the gadgets!
Ben generally copes very well with long car journeys, but he’s been driven around the country since he was a tiny baby so he’s used to it! We haven’t yet taken Ben on an aeroplane. Indeed, we rarely take him on public transport as it is so stressful for him and us. I am trying to summon the courage to take him on a train and have recently been doing a few trial journeys without him to see what would work. I long for public transport to be easier for Ben. It’s been a difficult month for disabled travellers using public transport. Frank Gardiner has been left on a plane (again!), another passenger was refused entry to his plane as his wheelchair repair kit was deemed a terrorist threat and a train passenger was refused access to her train with her mobility scooter.
Frank Gardiner has been left on a plane (again!), another passenger was refused entry to his plane as his wheelchair repair kit was deemed a terrorist threat and a train passenger was refused access to her train with her mobility scooter.
‘Relaxing’ on the beach.
I confess I get a bit envious when people talk of relaxing on the beach because with Ben it is anything but! It is getting easier. We have got beyond the point where he blunders into the sea fully clothed or eats the sand but other challenges remain. Ben has little awareness of danger, but is hugely inquisitive. I am so delighted that Ben is fascinated by everything around him and that he wants to investigate but it is truly exhausting keeping him safe. I swam in the sea this summer for the first time in years, and it was fantastic! It was possible because in our group there were four adults and our very responsible teenage daughter so between us, we were able to ensure Ben was supported at all times. I am mindful that I don’t take things like swimming in the sea for granted any more.
Another aspect of being away from home is dealing with other people’s reactions to Ben. He’s well known and accepted within our own community, where I am generally referred to as ‘Ben’s Mum’. (I was quite amused one time when I booked an appointment to get my nails done. The receptionist asked me what my actual name was as she couldn’t put me in the book as ‘Ben’s Mum’!)
I try not to be too bothered by people staring as I can’t judge what their motives are. I remember an early outing with Ben and his older sister when we were on holiday in the Lake District. We visited a National Trust place with my parents who lived nearby.
There was another family there with a little boy with Down’s Syndrome and his older sister. They were older than our children and were having a completely relaxed and fun day out. I confess I stared at them. It was so affirming to me to see another family just doing ‘normal’ stuff. I was new to it all then. Ben was only a few months old, and before he was born I had never met anyone with Down’s Syndrome. I had no idea what it really meant for Ben and for us as a family. This other family helped me so much as they presented me with a powerful picture of happy and ordinary family life at a time when I was still struggling with adjusting to Ben’s diagnosis.
I try to keep in mind when people stare that it often curiosity and nothing untoward. Fortunately, we have only had one really hostile reaction to Ben on holiday which was in a play park on the south coast when a child was making fun of Ben for ‘being Down’s’. It was a horrible experience which somehow felt worse for being in a playground with accessible play equipment. All children should have felt able to play safely and securely there but sadly on this particular day it wasn’t the case.
Extra effort, Extra planning, Extra enjoyment.
Our family holidays do take a lot of planning. Travelling itself is challenging whether we are using our car or public transport. We can’t be as spontaneous as we might like. We have to be sure a tourist attraction is safe and accessible before we can visit. Certainly, when Ben and his brother were very young, going on holiday could be very stressful indeed. Now our holidays are more relaxed and as with swimming in the sea. We have learned to really appreciate the experiences we share as a family.
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I have spent all my working life in education, mostly teaching music but also working with pupils who have special educational needs and disabilities. I am passionate about inclusion and promoting understanding of Down's Syndrome. My son Ben has Down Syndrome.