swimming

What to expect from grown-ups

/ jess / 1 Comment

I recently took Ben to a new place, for a new thing, which involved us swimming in a pool. It was a brilliant morning – the kind of pinch-me event that makes me so grateful that Ben has these opportunities, that I get to do this stuff with him.

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But accompanying the #blessed vibe, there was the cold, hard reality of needing to get Ben and me into our swimming costumes. We were at an unfamiliar school and there was a teaching assistant on hand to help get Ben and another child ready. As I got Ben onto the changing plinth, she said she would get Ben undressed while I got changed. This seemed sensible since I couldn’t really get naked in room full of strangers, so I left her to take Ben’s jumper and tshirt off while I popped next door. When I came back, I took over and continued to undress Ben. As I was putting some of his clothing in our bag, she started to undress Ben’s bottom half. I said I would do it but as I did, she continued to help. I repeated that I could do it.

She was being helpful. But it felt uncomfortable. I was there and happy to do all of it. We didn’t need help. Ben didn’t know her, and there is an intimacy to undressing which feels odd with someone who he has just met, who he had been cursorily introduced to, and who he is now expected to be on intimate, but unequal, terms.

Ben will always require assistance, he will need people (mostly able-bodied) to help him access the world. There is likely to be an imbalance in power and a dynamic in these relationships where Ben is more dependent, and this be interpreted as weakness. The solution isn’t for me or James to do everything for him, and for us to reduce his dependence on other people by increasing his dependence on us as parents. I am thinking about how to frame these interactions in an age-appropriate way – all children are dependent on adults in some way, but for Ben that means help to be changed and fed as well as taught and entertained.

Some of this is basic – it’s reasonable for Ben to expect people to introduce themselves and explain or ask him about what’s going to happen next before they start to undress him. Some of it is more nuanced. There are people whom Ben immediately likes and trusts, but we can’t expect that this magical energy will materialise in every interaction. Maybe sometimes Ben’s immediate need to be changed, fed, moved or assisted overrides his lack of immediate warmth to the person doing the changing, feeding or moving. Children don’t get to choose all of the adults who they interact with, but I think they should have a sense of what is okay and what is not, and should always feel safe and respected.

Last year we had a carer at home who was mainly assisting and entertaining Ben with us at the weekend. We weren’t convinced she was hugely enriching Ben’s life but with a full family life including two other kids, she helped ensure Ben had what he needed and was read some books. I felt guilty that he was spending time with her (albeit only a few hours), but that’s the bread and butter of being a mother to three kids.

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One afternoon I went upstairs to see how Ben was getting on and as I walked into his room she was hoisting him out of his chair in a way that was wrong, despite having been shown how we do this to make sure Ben is safe and comfortable. I then realised that she hadn’t moved him all afternoon and he was wet and uncomfortable from being in the same chair for hours. I was shocked and explained to her why all of this was unacceptable in front of Ben before asking her to leave the room and having a further chat with her on our landing. I felt protective, like a lioness who needed to corral her cubs and keep them close forever, and I asked her to leave. I bathed Ben carefully and put him in dry, clean clothes and we all watched TV together.

I had reacted in the moment. We generally try to have conversations with Ben’s carers away from the children as we don’t want our house to be a constant management exercise witnessed by them, and they need to have relationships with the carers we employ independently of us. But as I calmed down, I thought it was totally fine for Ben to have witnessed my shock and to know that I thought it was unacceptable.

It is not right for Ben to feel unsafe in his own house. It is not okay for him to be dependent on others for his personal care and for those people to not give it the thought and attention that they should. He shouldn’t have to put up with mediocre communication and monosyllabic conversation. He needs to be able to trust people with intimate moments of access.

I think it’s appropriate for him to see us calling out moments where people do this wrong. We need to make explicit what our expectations are, and to hopefully build in him a sense of what he can expect from adults, how much he has to put up with and when he’s allowed to protest. Later that night Molly, then age two, asked what the carer had done that was ‘naughty’ because she had heard my conversation with her on the landing and had (correctly) interpreted it as a telling off. I told her that the carer had done something wrong to Ben and she had gone home.

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As I put Ben to bed, I explained that it wasn’t okay for the carer to have moved him in a way that was risky, to have left him in his wheelchair for so long. I don’t know for sure how much of this he understood, but I hope Ben – and Max and Molly – know that he has a right to feel safe and comfortable, and grown-ups aren’t always right.

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A Weekend Away

/ jess / 2 Comments

We went away for the weekend in June to the Calvert Trust, an activity centre in Devon. James, Ben, Max 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 Ben there three years ago. Then, we’d had a good time and Ben 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 Max.  And realistic expectations.

The combination of Ben being older and Max’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 Ben sitting in a special seat. We went cycling on special bikes which was marvellous (apart from the moment when Max careered off into the biggest patch of stinging nettles in Devon). We connected Ben to a rope and dropped him from a perilous height, and then sent him down a zip wire.

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As Ben 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 Ben 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 Max went climbing because Ben 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 (Molly 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 Ben was younger and less happy, was stark.

It was one of those trips when Max makes everything more fun. Ben 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 Ben can’t cope with it and has to bail, Max 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. Max 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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Sending Ben down a zipwire

/ jess / 7 Comments

Over the Easter holidays we took Ben away for an activity weekend. We went to Istanbul for a long weekend with Max in March, so now it was Ben’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 Ben 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 Max 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 Ben 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, Ben 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 Ben could be supported to do each activity, and quickly worked out if Ben 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, Ben 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 Ben enjoyed, we were working incredibly hard to keep the show on the road. Ben 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 Ben hates wearing a helmet.

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James and I were working overtime to keep Ben 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.

Ben 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 Ben’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 Ben 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 Ben as more disabled, rather than less. Even in a group of disabled people, Ben 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 Ben. We are glad we went, and will definitely go back, but let’s be under no illusions that it will be a restorative holiday!

Holiday?

/ jess / 7 Comments
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The summer holidays have really derailed my commitment to writing blogs. Despite Ben still going to nursery for two days a week though the school holidays a combination of my husband being away in June, our nanny being away for most of July, me trying to do some work, then us going on holiday for two weeks meant I was struggling to keep on top of basic tasks. And my house was a tip.

I had good intentions of writing when we were on holiday – wouldn’t it be the perfect opportunity, with all that spare time? But Ben developed a fever on Day 1 of our stay in Devon and spent a considerable amount of time vomiting (in a carpeted holiday home, hard to tell sometimes whether I was more stressed about Ben or the soft furnishings). Then his gastrostomy site got infected so he was really sore. Then we went on to Cornwall where we stayed with good friends and loads of kids so I was too busy sipping Aperol Spritz in the hot tub to be writing.

Talking of which, if Ben could talk I’m certain he would tell us the hot tub was the highlight of his holiday. He is at his calmest, stillest, most relaxed in the very hot water. I spent 45 minutes in there with him one morning. He would happily have stayed longer but I was concerned about whether he was actually being cooked and whether his fingertips would ever rehydrate.

I had purposefully reduced the amount of Ben-admin I did on holiday – which meant I spent only one morning making calls and answering emails. On our return to London, I caught up with everything and we had embarked upon all the appointments we had postponed while we were away…

We returned to London on Friday and then (these are only the Ben-based bits):

Saturday – 1hr physio at home

Sunday – 1hr physio at home

Monday – 1hr physio at home and checking fit of a new chair. Cooked, blended and froze a week’s worth of food for Ben (approx 1.5 hrs). Confirmed Ben can attend a hospital appointment for some tests. Rearranged Ben’s specialist dentist appointment so he can go to a picnic with friends from nursery later in the week. Ordered repeat prescriptions from pharmacy.

Tuesday – Opthalmology appointment at hospital. Waited in for collection of Wheelchair Accessible Vehicle we had borrowed for holiday. 1hr physio at home. Tracked down spare part for Ben’s chair which had been delivered to the wrong house.

Wednesday – new chair for Ben delivered. Met with Assistive Technology team to start loan of eyegaze computer which wouldn’t work. Met with council transport co-ordinator to complete application for Ben to get the bus to school. Packed bags and made food so Ben could stay with my parents overnight. Dropped Ben off, then deliver medications that I forgot to pack originally. Called company to arrange fitting of spare part to Ben’s chair.

Thursday – picnic at Ben’s nursery to say goodbye to other kids/parents on his penultimate day. Spoke to community nurses about Ben’s sore gastrostomy site. Rearranged some hospital tests. Caught up with Ben’s speech and language therapist and arranged to meet next week. Met with Assistive Technology team to get eyegaze computer.

Friday – Ben’s last day at nursery. Traded voicemails with Community Dietician. Collected medicines from pharmacy.

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We are constantly trying to think about the balance between Ben being a small boy and being a disabled child. Other 4 year olds get to spend summer holidays playing in parks, going swimming, making cakes. Ben rarely has a day without an appointment. In this instance, he had just had two weeks of illness/recuperation/relaxation, and most of these appointments were important to ensure his ongoing comfort, development and nutrition, so I think it was okay. But it’s not fair. As his parents we have to keep reviewing whether the things we make Ben do are right, and that he isn’t missing out on too much of the fun stuff.

I often talk with friends/acquaintances about why I am not working as an architect, why I’m not employed on a permanent basis; weeks like this are why I’m based at home for now.

(P.S. In that last photo of Ben doing physio exercises, he’s watching a video on the iPad to encourage him to keep his head up. His favourite thing at the moment is an old BBC Jackanory film of Rik Mayall reading Charlie and the Chocolate Factory by Roald Dahl. He has watched it tens of times and thinks it is HILARIOUS.)

Swimming (with update)

/ jess / 3 Comments

There aren’t that many activities that we can do with Ben where he is really participating, rather than spectating. Swimming is one of them.

It’s taken a while for Ben to warm up to swimming. Our local leisure centre, Peckham Pulse, has a brilliant hydrotherapy pool which we can use but at first he found the loud, echoey acoustics of the pool overwhelming (tears). Splashing was also stressful for him (tears). And all of the fuss of changing and unchanging on uncomfortable wooden benches (tears).

I wondered if it was a family thing – around the same time I was taking Max to eye-wateringly expensive baby swimming lessons where he’d scream every time the instructor came close, hated being put under the water, and tried to climb out every time we approached the side. I persevered because I thought it was important that he learnt some water survival skills. When James pointed out that hating being underwater and trying to escape from the swimming pool at every opportunity probably indicated Max had understood the basics, I stopped going.

We kept taking Ben swimming occasionally and if we could minimise all of the other factors, he enjoyed actually being in the water. We went to a few hydrotherapy sessions to get ideas about what we could do with him, and it turned out he loved being bounced up and down, and being spun round, and being held in the bubbles when the jets were turned on. On holiday, Ben discovered the joy of the hot tub.

The secret to enjoyable swimming for Ben is to try to avoid the noise and splashing of other swimmers, which essentially means avoiding too many neuro-typical kids. Taking Ben to Rafts & Rascals is not how anyone would voluntarily spend a Saturday morning. Since it’s a bit hard to monopolise the hydrotherapy pool at a huge leisure centre, we were thrilled to discover the Family Disability Swim Session at 11am on a Sunday morning. We didn’t make it as often as we would like, but when we did it was fantastic and something we could all enjoy as a family: the holy grail of weekend activities.

On a rainy bank holiday Monday in May we didn’t have anything planned so we thought about swimming. On the pool timetable it said there was a Disability Swim session 12-1.30pm. Perfect! I phoned to check that we can take kids to this… and was told, ‘Yes, that’s fine for your disabled child to swim’.

‘Oh, great, we’ll have our other child with us too. He’s 2.’

‘No, non-disabled children aren’t allowed in the pool at this time.’

I then had a conversation where the lady suggested that one of us could go in the pool with Ben from 12-1.30pm while the others waited outside. Then Max could go in the pool after 1.30pm while Ben waited outside. This was her ingenious solution to the problem of Ben not liking swimming with boisterous kids, and Max having the misfortune of not being disabled.

When I complained I was sent the following email:

Hi Jess

Hope your well

Just to let you know the group that hired our hydro pool at 11am on Sunday have pulled out due to low number so we have put the Family disabled swim back on (11am-12pm)

This session will start again on Sunday 8th June 11am to 12pm

Thanks in advance

Most of my points were ignored but good news that the Family Disability Swim Session, when disabled and non-disabled children are allowed to swim together, was reinstated on a Sunday! Except I just looked at the pool timetable and the session has now been moved to 8-9am on a Saturday morning. How incredibly convenient! Thanks! Apart from it taking superhuman organisation to get anyone out of the house at 7.30am on a Saturday, it takes over an hour to feed Ben so no family swimming for us.

Luckily Ben has been getting plenty of opportunity to swim at weekly pool sessions with his school. We were nervous about this when he approached the first afternoon last September – he had never been in a swimming pool without me or my husband, and we were hypervigilant of the handling/noise/splash/discomfort/tears issues. We were proved wrong; Ben took the whole thing in his stride and has loved every swim lesson since.

Or, mostly loved it.

No-one had anticipated Ben’s love for Rick, a teacher who accompanied them to swimming (and often taught Ben in the classroom). Rick would help get the kids changed and then leave to get changed himself, at which point Ben would burst in to heartrending sobs which could only be alleviated by Rick returning. The boy’s got favourites.

We’re going on holiday to a house with a hot tub in August so Ben will be able to get his fix of water. Maybe by September the clumsy officialdom at Peckham Pulse will have realised that disabled kids have non-disabled siblings and they might like to go swimming together.

UPDATE

The Family Disability swim session at Peckham Pulse has been reinstated on Sundays at 11am and we all went last weekend. It was brilliant – Ben was relaxed and totally in the zone. Meanwhile Max tolerated his armbands and learnt to float! There were at least four other families in the pool and it was a glorious mixture of disabled kids, their non-disabled siblings, mums and dads and we all loved it.

The downside is that Max has asked to go swimming ever since so I took him this week and he spent a considerable amount of time shouting at me:

Max: I want to be a fish.’

Me: ‘You can swim like a fish’

Max: ‘No. I WANT TO BE A FISH.’

Repeat. Repeat. Etc.