Holiday?

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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)

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.