A Weekend Away

We went away for the weekend in June to the Calvert Trust, an activity centre in Devon. James, Sam, Eli and I spent the weekend being the kind of people you see in adverts for happy families. We canoed, cycled, abseiled and swam.

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The Calvert Trust is fully adapted for people with disabilities to be able to do all of the activities on offer. I think of it as Centre Parcs crossed with a youth hostel in a utopian inclusive world.

James and I took Sam there three years ago. Then, we’d had a good time and Sam had had some extraordinary experiences. It was the first time he had been down a zip wire, or canoeing, and he had liked those things, but he hadn’t enjoyed everything. He’d struggled with the unfamiliarity of it all and the amount of waiting involved in being part of a group. In addition to preparing all of his meals in a bathroom, and getting up with him during the night, James and I were also trying to entertain him between and during the activities. It was a worthwhile but utterly exhausting weekend for all of us. I wrote a blog at the time which is here.

This time we took a night carer with us. And Eli.  And realistic expectations.

The combination of Sam being older and Eli’s boundless enthusiasm meant we had a really good time. It was still tiring, but the kind of tiring that comes of having had a fun day with kids who have enjoyed themselves. We went canoeing with Sam sitting in a special seat. We went cycling on special bikes which was marvellous (apart from the moment when Eli careered off into the biggest patch of stinging nettles in Devon). We connected Sam to a rope and dropped him from a perilous height, and then sent him down a zip wire (videos below).

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As Sam gets older it becomes hard for us to help him to take risks, to really feel a sense of danger and the physical rush of being thrown or falling, which he has always enjoyed. We always tell people he likes speed – when he goes ice skating we encourage the professionals to take him round as fast as they can. When he was smaller we could easily throw him in the air or push him hard on a swing and he loved it. It feels good to give him the opportunity to be dropped from height in a terrifying way – to hear him shriek and then laugh. Just because you’re disabled doesn’t mean you should be mollycoddled, gently pushed over surfaces with small changes in gradient for the rest of your life.

It wasn’t all wholesome fun. We still had to entertain Sam and cajole him into wearing a helmet. He spent some time watching an ipad while others were doing activities he’d made clear he wasn’t interested in. He and I went abseiling which he hated and it made him cry. I took him back to the room while Eli went climbing because Sam was totally over physical activities by that point in the day.

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But really, that’s fine. It was fun! It was lovely to have a weekend of just me, James and two kids (Stella was at home with family). Away from the activities, we spent more time together as four than we have done for years. The comparison to our previous trip, when Sam was younger and less happy, was stark.

It was one of those trips when Eli makes everything more fun. Sam is often happier when he is around and vice versa. New experiences don’t feel as high stakes when you have two children doing them – if Sam can’t cope with it and has to bail, Eli will probably still have fun so it feels worth the effort or vice versa again. And it’s hard not to enjoy yourself when you have a six year old telling you that what you are doing is fun, awesome, and brilliant repeatedly, before, during and after each thing.

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This visit it happened that ours were the only children there and the other groups were of adults with various impairments, some visibly physical, some not. Eli made friends with some of the other guests, playing table football with them and asking them about their days. The kids stayed up late to watch live music, though we all refrained from the disco. I felt so strongly how idealistic a place it is – somewhere where everyone can do the same activities and eat in the same room, regardless of impairment. No-one needs to explain their disability. Conversations are about what people’s access needs are rather than what they can’t do. No-one stares. It’s how the world should be and we’re so fortunate to get to experience that if only for a weekend.

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Sam is 6!

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Sam is 6! Like every year, the actual day is full of mixed emotions. While we are joyful that we are celebrating six years since Sam joined us, on the day I am also mindful that this time six years ago Sam was being resuscitated then being transferred on his own in an ambulance to a different hospital, and that our lives changed forever.

But it gets easier every year, as the memories are less immediate, there is more to celebrate and Sam is more engaged in birthdays.

As is now our annual tradition, James made a video to summarise Sam’s year. I won’t post it, partly for reasons of privacy but also because of self-indulgence; while most parents will happily watch a ten minute video of their own child, no-one I know really wants to watch a long video of someone else’s child, even if that child is the subject of a semi regular blog they read. It’s surely the modern equivalent of being made to sit through someone else’s holiday photos.

So, here’s the executive summary. It is unashamedly positive. Let’s ignore the tiresome stuff for now.

In Sam’s sixth year he:

  • Enjoyed ice-skating and went round the rink quite a lot faster than grandpa;

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  • Had a massive and briefly scary allergic reaction to nuts and had to go to hospital in an ambulance;

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  • Went down a zipwire, swung from a sports hall ceiling and went kayaking at the Calvert Trust;
  • Did a lot of triking;

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  • Was a lovely older brother to Eli, letting him wear his lycra suit and clamber all over him;

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  • Moved house (again – his fourth since he was born);
  • Got a new wheelchair-accessible car (which is great but unfortunately turns out to be one of the cheating VW emission scandal cars…);
  • Got his own eyegaze computer to use at home and used it to tell us knock knock jokes;
  • Went to the House of Commons and met an MP;

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  • Lost four baby teeth, swallowing at least one;

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  • Did a lot of trampolining;
  • Went to a summer playscheme for the first time and made a biscuit the size of his head;
  • Went on holiday to the Cotswolds and Cornwall. Next year places beginning with D. Suggestions welcome;

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  • And last but not least, left one wonderful school and started at another, settling in quickly.

Sam had a lovely birthday. Over the years we have learnt what works and what doesn’t. We are less concerned these days about what a typical six year old birthday party would be like and just do what we think he will enjoy – small family celebrations, lots of presents and balloons, ice-cream cake which he can at least taste if not eat.

If I do say so myself, we have done particularly well with Sam’s presents this year. It’s tricky to think of things he will really like beyond yet more books, but he is really enjoying a puppet theatre where we put on shows for him with hand puppets, a lightbox that we can spell words on, and a teddy bear that will play Daddy’s voice (from Kuwait this week) or anyone else who records their voice via an app. So satisfying when all of the thought I have put into presents he will like pays off.

The coming year will involve more change for Sam, not least with a new sister and another house move. His somewhat relentless life will continue with the usual levels of complexity and endless appointments, but he has continued to prove that he can take it. It feels like he (and we) are more resilient and happier than ever. We will inevitably have some blips. I am certain the arrival of a third child will throw us all off course, he’ll get the usual winter bugs and we will face unexpected challenges. But, but… if I had been able to see how well we are all doing six years on from the awful day of his birth, maybe I wouldn’t have been quite so sad.

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Sending Sam down a zipwire

Over the Easter holidays we took Sam away for an activity weekend. We went to Istanbul for a long weekend with Eli in March, so now it was Sam’s turn to get uninterrupted time with his parents.

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I did not grow up with activity holidays. My family holidays involved weeks in the British countryside going on long walks, or staying on a smallholding in Spain and swimming in a pond full of frogs. Our dad would occasionally take us to the local swimming pool but we were more likely to be taken round Ronda bullring for the twentieth time than to be put in a canoe. Our meals involved omelettes and family arguments. Not once did we stay anywhere fully catered.

The Calvert Trust Exmoor enables people with various disabilities to experience outdoor activities that might be complicated or impossible otherwise. We had heard great things about it, but I was a bit nervous. Mainly about how Sam would feel about it all, but also because activity centres remind me of school trips. All of the schedules and rules and mealtimes make me feel like I’m 11 years old again, and when we arrived I actually felt a bit homesick, even though I was there with my husband and child, and I’m an adult with a car that I can drive away if I really want to. I had a small weep about leaving Eli behind, and then cracked in to the red wine.

We were there for a long weekend. And what a weekend it was – undoubtedly one of the most intense of recent memory.

It’s quite hard to summarise how it went. It could be written one of two ways:

  1. Brilliant adventure! New experiences!

We were told our timetable when we arrived. We were worried about how Sam would deal with any of the activities, but particularly the canoe trip – it would clearly mean an extended period of time with no ipad or books or distraction beyond calm water. And he wouldn’t be able to sit in a supportive chair like normal. What were we going to do when he flipped out, in the middle of a lake on a boat we were sharing with other people?

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In fact, Sam was great. He was patient as we got ready for the trip, sat perfectly cross-legged in the boat and lasted almost and hour and a half before he got bored.

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The next day he was attached to the ceiling of a sports hall in a harness and swung around. As far as we are aware that was the first time he’d done that too.

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Then in the afternoon, we pushed him down a zipwire at high speed. Twice. He reacted to this extreme sport by closing his eyes for the entire thing and giving us a wry smile. He looked more relaxed than ever.

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On both days he went swimming and hung out in the Jacuzzi, where he was relaxed and happy. We walked round a lake, sat by a fire, and read a lot of stories.

Our instructor was friendly and accommodating. He was skilled and experienced so knew how Sam could be supported to do each activity, and quickly worked out if Sam was getting impatient so made sure he went first when possible. He fits in to the category of people we come across pretty often who specialise in maximising the lives of disabled children and do it really well.

In the two days of activities, Sam took part in AND ENJOYED canoeing, swinging from a ceiling and zooming down a zipwire. He had never done any of these things before. If we achieved just one of those things in a normal weekend we would be inordinately pleased with ourselves. We’d spend the rest of the day watching the Paddington Bear film and congratulating ourselves on going canoeing. Canoeing!

  1. Really, extraordinarily hard work

Between all of these amazing activities which Sam enjoyed, we were working incredibly hard to keep the show on the road. Sam was a bit tense almost all the time in such an unfamiliar environment. We were in a group for each activity so there was inevitably some waiting around for our turn. As the weekend went on, we found we couldn’t wait for longer than a couple of minutes before he was getting grumpy. It also became apparent that Sam hates wearing a helmet.

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James and I were working overtime to keep Sam chirpy in between the action. Our timetable was packed with way more stuff that we would usually do with him on one day. Through a combination of fractiousness and tiredness, he didn’t enjoy a forest walk, or a challenge course, or crate stacking. He cried often and whinged a lot. We didn’t even try abseiling – we just stayed in our room listening to audiobooks and napped.

Sam was almost the youngest child there (most of the visitors are adults) so it’s not surprising that he was a bit overwhelmed. I was a bit thrown at times!

Meanwhile, all of our meals were provided but that didn’t include Sam’s gastrostomy feeds, and we didn’t have a kitchen. So we were washing syringes and cleaning the blender in our en-suite bathroom, storing his food in a mini-fridge, preparing medicines on a windowsill. It worked, but nothing makes you appreciate your own kitchen like not being in it.

 

When I was thinking about visiting The Calvert Trust, a friend told me it was the only place she had ever been where disabled and able-bodied people were viewed equally. She said, if only the rest of the world were like The Calvert Trust it would be a much better place. And she is totally right – we have never been anywhere where people (including James and I) assume Sam will be able to take part in every activity, and someone will have thought carefully about exactly how to achieve that. It is inclusive – both in terms of people participating in activities, and because it brings together a group of disabled and non-disabled people to get to know each other, talk to one another and eat together.

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But… I didn’t anticipate that being in a place with lots of disabled people, would make me see Sam as more disabled, rather than less. Even in a group of disabled people, Sam is noticeably less able than most. That is what it is – he’s brilliant, and cute, and clever, but his body just doesn’t work very well.

So by the time we got back to London, James and I needed a holiday to recover from the holiday. But instead James went back to work that afternoon, we decided to move house next month, and embarked on a series of hospital appointments with Sam. We are glad we went, and will definitely go back, but let’s be under no illusions that it will be a restorative holiday!