New wheelchair

IMG_4188There are certain milestones along this journey of being a parent of a disabled child which are inevitable. Some are actually the omission of milestones: the missing of typical developmental steps, the absence of a first spoken word, there never – in our case – being a first step. Others are very much present: the diagnosis of impairment, the first feeding tube, the first operation.

One of the big ones is the first wheelchair. It’s possible to keep a baby, and then a ‘toddler’, in a buggy for a long time. At some point it becomes clear that the buggy is insufficient and some kind of wheelchair (or the compromise, a ‘Supportive Buggy’ is necessary). This will be for lots of good reasons to do with postural support. It is entirely possible to be convinced by the need for the wheelchair and sad about the arrival of it simultaneously.

Sam had his first wheelchair (more of a supportive buggy) when he was two. It was needed – he didn’t look at all comfortable in the buggy we had for him, and it was showing the strain of near continuous use. So we went for a fitting and a few months later it arrived. We heaved it up the steps to our house.

I wasn’t in love with it, but I could see the advantages. He sat well in it. It folded, so just as with his previous buggy we could lift Sam into his car seat and put the wheelchair in the boot. The slight difference was that doing so injured us almost every time.

Since Sam was still young he often slept in the buggy, and he was sensitive to bright sun, so we asked about a hood and rain cover for the wheelchair (as is standard with  a buggy). It turned out that as these were not ‘essential’, they would not be provided by wheelchair services, but we could choose to buy them ourselves. They arrived just after Eli was born and I remember fitting them while James held tiny Eli. They worked, but were incredibly clunky and would need to be removed every time we put the wheelchair in the car. They looked like something someone had made in their garage and were as far removed from the slick design of a buggy as you can imagine. I was really cross and after crying for a bit I wrote an extremely grumpy letter to the manufacturers which James had to tone down so that it was only quite cross. We sent them back and found our own solution. I have written before about the way things look here

Since then Sam has had two more wheelchairs, each a bit more ‘wheelchairy’ than the last. Over the last six years we have adapted our house and bought a “Wheelchair Accessible Vehicle” (a car with an in-built ramp, blog about it here) so we have fully accommodated the wheelchair into our lives. I see the wheelchair as an enabler for Sam, and we make do with hats and ponchos so there are no resentful conversations with suppliers of wheelchair hoods.

But what I still struggle with is the particulars of each wheelchair. Sam’s wheelchairs are supplied by our local service which is staffed by great people but, like all NHS behemoths, can be a bit inflexible.

IMG_3880

When we first discussed the possibility of Sam needing a bigger chair last year they showed me the type of chair they thought would be most suitable. Even allowing for the fact that it wasn’t the colour we would pick, and wasn’t set up for him, the chair I saw was really ugly. The base looked to me as though someone had rustled it up out of some spare scaffolding poles. I could see it was practical, and I was told that it was one of the most reliable chairs, but it was winning no prizes for elegant design. The seat was covered in weird synthetic fabric that had a clichéd care home vibe. It was enormous compared to his current wheelchair, and relied on a ‘knee block’ (literally a shaped block, fitted around the knees) to keep Sam in the right position, which he had never had before.

I knew Sam would need a new chair soon, and I respect the opinion of an Occupational Therapist who knew about seating for disabled people. But this was a chair that Sam would use every day, sometimes for 12 hours a day. We would see it every day – in our house, in our car, in family photos. In what other sphere of your life would you think about acquiring something like this and accept the first thing offered to you which happens to be the one in stock? Do people buy cars they hate the look of? Do people get dining chairs that they’re not sure they’re going to find comfortable? There is a huge market for buggies which people spend thousands on and have the kind of designers who formerly worked on Formula One cars.

Of course it would be replaced if Sam wasn’t happy and comfortable, but I really hate the clunkiness of wheelchair design. I resent spending a lot of time incorporating Sam’s needs into the design of our home which – if I do say so myself and may possibly have pointed out before – is beautiful AND fully accessible, only to have it cluttered up with something that may be technically good but is aesthetically shit. It’s unfair to have options for large purchases in every other aspect of our lives, but not this.

The wheelchair service was patient, told me to have a think about it, have a look at other options privately (while recounting some horror stories of chairs breaking and families having to arrange fixes themselves…). Meanwhile, Sam kept growing. An engineer came to adjust the eyegaze mount on the wheelchair and we had another conversation about the chair – we all knew his current chair wasn’t quite heavy enough to support the device, and that a bigger chair would be better. After listening to my monologue about scaffolding poles she mentioned that the base came in different colours. She emailed me later to say it definitely came in black.

And so, slowly, I came round to the idea. The seat fabric could also come in black which made it look a bit less healthcare setting. We eventually ordered the new chair, and it arrived last month. Sam very patiently sat through adjustments and we brought it home with us.

IMG_3623

You know when you are away from your kids for a few days and when you are reunited it’s like you are seeing them anew. You notice the size and the feel of them with a jolt – both familiar and novel. It was like that with Sam in the new chair – it was Sam in a wheelchair, which is our daily experience, but he looked taller and older and relaxed. It made me feel like I must have been squeezing him into a ridiculously small chair before, like we hadn’t noticed that he was now eight. Pushing the new chair is like a dream – no weird knobbly bits on the handle, much less veering unpredictably into gutters. It comes with a tray which is a perk. There’s even just enough room on the side bar for Stella to hitch a lift (don’t tell wheelchair services…)

IMG_4154

There’s of course a little hint of melancholy – it’s wider, it will be a bit harder to squeeze into small spaces. We won’t be able to carry him and it upstairs to friends’ first floor flats like we have done recently. These are sadnesses relating largely to physical barriers, not to Sam’s need for a wheelchair.

Sam’s not hugely keen on the kneeblock so we’re taking that slowly (not as unkeen as we originally thought though – turns out his shoes were too small and we hadn’t noticed which was making him understandably grumpy). It’s all come good in the end. Bring on the adventures.

P.S. If you would like to be notified when I post a new blog, you can subscribe by putting your email address into the box on the right of the screen. You’ll be sent an email each time I post.

Advertisements

Different kids, different kinds of walking

If, like us, you take the view that your child’s disability is part of him and try your hardest not to be negative about it in front of him, how far do you take it?

Stella has just started walking. She’s 13 months and since working out how to take a few steps two weeks ago, she has been practising at every opportunity. She has the typical waddle of a baby and is totally unfazed by dropping to her bum every so often. It’s utterly joyful to watch. If you’re feeling at all depressed by the state of the world, I would recommend spending some time watching a sweet one-year-old walk around like a very tiny drunk.

img_1503

It feels like a privilege to watch a baby develop these skills and like a small miracle when they keep their balance and toddle off. We, more than most, appreciate the wonder of a baby learning to walk.

And because we are all so amazed we have spent a lot of time talking about it. Visitors comment on it. It can all be a bit of a Stella love-in.

I started to feel a bit uncomfortable about it. How does Sam feel about Stella learning to walk on her own? Is he sad that she is doing something he can’t? When we congratulate Stella does he hear an implicit criticism of him not walking? Was he not really thinking about it much until we all stood around going on and on about how brilliant she was?

I spent a day or two trying not to talk too much about Stella’s walking. Acting as if it was no big deal. Then Eli asked me if I was better at maths than him, and I wondered for a moment if I should soften the blow. But then I decided to tell him yes, I was. And I said I’m definitely better at maths than James. I do have an A Level in maths after all and neither of them do.

It struck me that we can’t spend the rest of our lives not being honest about who is good at what, and what one of us can do that the other can’t do as well. Some of our kids will be good at remembering obscure cricketers (James’s genes), some will be good at chemistry (my genes). Pretty unlikely one of them will be talented at everything – so they will all have to experience that irritating feeling of knowing your sibling is better than you at something. In Sam’s case, the nature of his disability is such that he will do lots of amazing things, but some physical skills will constantly elude him. Eli and Stella will do things that he can’t.

Obviously, accepting that fact doesn’t mean we need to ask questions like, ‘Isn’t it a shame that Sam can’t walk along walls like Eli can?’ (this did actually happen, achieving nothing except drawing everyone’s attention to the disadvantages of being disabled and tainting an otherwise pleasant walk).

I think we have to avoid this kind of direct comparison with all of our children (tricky with Eli’s constant questions comparing me to James, James to Superman, Superman to Spiderman, etc etc). Sam won’t walk unaided, but his school annual review lists ‘walking’ (with a supportive frame) under the list of What Sam Likes. Each child is on their own track and we should only compare them against their progress on that track.

 

Ultimately, I need to chill out and enjoy watching a small child negotiate going downstairs backwards and a four-year-old learn to write. These gross and fine motor skills are easy for parents to take for granted. Do not. See them for the incredible feats of co-ordination that they are. Hold them dear and cherish each milestone.

As a postscript that demonstrates that being an ally to my disabled child is still very much a work in progress, I should mention that I suddenly realised I had written this whole post without asking Sam what he actually thought. So I sat down with him and his eyegaze computer, and modelled what I thought:

‘Stella – walk – great’

I asked him what he thought. He chose:

‘I don’t want to do it’ … ‘Good’

img_1566

He then got frustrated that I was delaying him listening to The Faraway Tree.

Fair response. Jog on, Mummy, stop asking me stupid questions about my sister walking…

Five years old

Sam has just turned five.

DSC_0974

A birthday means the anniversary of his birth, which is a day we would all prefer to not remember. Apart from the joy of ending up with Sam, few good things happened that day.

But loads of good things have happened since! Each year we make a list of what Sam has got up to over the previous 12 months; achievements noted, developments made and skills gained. Parents of disabled children often talk about ‘inchstones’ rather than milestones. Early on, it became clear that the gross motor skill developments that characterise a typical child’s life were going to be hard for Sam so we had to adjust our expectations and targets accordingly, but success rewards the patient and if you look in the right places there are wonderful things to be found.

IMG_3435

In the year between his fourth and fifth birthdays Sam has done a lot, including:

  • left nursery, started school full-time (settling in brilliantly)
  • learnt to enjoy the affections of his brother and realised Eli can be funny
  • used an eye-gaze computer regularly, playing lots of games
  • learnt to look at Yes and No symbols regularly
  • stopped having any formula milk, eating only home-made food
  • adapted brilliantly to having a night carer
  • discovered his love of the hot tub
  • started getting the bus to school
  • learnt loads of letters
  • reliably recognised the numbers 1-10
  • starting riding his trike
  • met Michael Rosen!

IMG_8508_2

photo-14

IMG_8376

Sam has really thrived over the last year – he has been healthier than ever and had a lot of fun. We were looking forward to celebrating him turning five with a tea party and a family video of the past year’s best bits…

… and then he really pulled it out the bag!

We have known for a while that Sam recognises most letters and Granny has been diligently teaching him to read. His school has also been working on phonics with him and recently he has been using the eyegaze computer in his classroom to do some work with letters. The day before his fifth birthday, Sam came home with this message from his teacher:

‘Sam used his eye gaze [computer] to independently word build. I asked him to spell out bat and several other ‘-at’ words at the end and he did so no problem!’

If that isn’t a bloody milestone, I don’t know what is. Love that clever boy.

IMG_8157