I was struck by a conversation I had with an Occupational Therapist (OT) when Sam was very small – she is perceptive and (typical of all good therapists) sees her work in the context of the whole life of the children she treats. She was commenting on how lovely Sam was and said that would be useful to him because he would probably always need people to help him. It’s true – both that people are always more willing to go the extra mile for people who are smiley and engaging, and that Sam depends on people going out of their way for him.
Partly as a result of conversations like that, I always try to make sure Sam looks good. I buy him nice clothes that work for him and us (jumpers we can get on/off, coats that fit in a wheelchair) and look smart after a day sat in a wheelchair. I buy things in cheerful colours that will suit his slight frame. I enjoy doing this – I do the same for his brother – but I think it’s particularly important for Sam. We have to maximise the chances of strangers seeing past a disabled child in his wheelchair and noticing the cool little kid. Of course we don’t always manage it (there are plenty of days when both our kids look like Dickensian orphans) but we try.
We are supported by my sister’s attempts to inject cool. I don’t know how many other children wear Nike Air Jordan’s over their ankle-foot orthoses.
[This could all be an elaborate excuse for me to spend more money in Scandinavian clothes shops but don’t tell James that.]
We can’t buy everything from mainstream shops but I seek out the best of the options. Sam dribbles sometimes and he wears a bib all the time so they can be changed easily without his clothes getting wet. Very early on we bought bandana bibs in bright colours which are kind of his trademark now. I hate the idea of him in baby bibs and have known to be quite stern on this front. He’s disabled, no need to infantilise him.
If he does need specialist aids, I think they should recognise his age. A really good example of this is his hand splints.* ‘I’d really like to wear hand splints’, said no-one, ever, but the designer of these thought about them being for kids, decided against making them flesh-coloured in the hope no-one would notice them, and made them colourful. It’s probably not a coincidence that they were ordered by the OT mentioned above.
But for some things, particularly equipment, there aren’t many options. It’s a constant source of frustration that things Sam needs are ugly and clunky.
I trained as an architect and care about how things look. I’d rather not have a sitting room filled with supportive chairs, standing frames and walkers but I have no choice. These pieces of kit are helpful and Sam uses them every day so we have to look at them. They are so specific that not many companies make them, so our choices are limited.
Sam’s bed is the exact opposite of the hand splints. He was growing out of his cot and needed a larger bed that could be raised and angled. Everyone agreed we needed a “profile” bed. Our local social services only supply one kind of these. It’s a full-size single mattress and looks exactly like a hospital bed. The only thing that differentiates it from an adult bed is that it has cot bumpers on the side rails which are flesh-coloured. I can’t begin to understand why anyone would think that was a good idea.
When I asked if there were any options that would be more suitable for a five year old boy, the therapist (not the one above) suggested we could put stickers on it. I have actually done this. It took an hour to stick stars on every available surface. Now Sam often has a scrunched sticker stuck to him when we get him out of bed, but the bed still looks like it should be on a ward and I resent the fact that while some boys get to sleep in beds shaped like cars, Sam gets the same bed that he recovers from anaesthetics in.
I have loads of examples on this theme: the time that I ordered an expensive specialist hood for Sam’s supportive buggy which took months to arrive and looked like something a 15 year old made in their school workshop. Actually, not by me at 15 because I’m quite good at making things, but by someone who shouldn’t have taken Design & Technology as a GCSE option. I returned the hood and wrote a letter to the manufacturer explaining why this product was ugliest thing I had ever seen and didn’t even work. Then my husband rewrote the letter to be slightly less offensive and the company said they ‘value feedback from our customers and will act on the constructive elements of your letter’. Ha!
The poor aesthetics bother me, but so does the absence of real design expertise. It’s not good enough for a buggy to just provide the right postural support to a child; that buggy is also going to be pushed by parents and folded up hundreds of times. A buggy that repeatedly injures the adult folding it and causes grandparents to spit expletives is not a good piece of product design.
There is one unanticipated side-effect of all this frustration and lack of control. When Eli first needed proper winter shoes I considered giving him Sam’s old boots. They’re specialist, supplied by his physio, but essentially just boots. They’re in pretty good condition since Sam never walked in them!
James told me I was being ridiculous.
So now when Eli needs new shoes (which feels like every month), I take him to a shop and choose the shoes I like most. I don’t look at the price and I don’t care whether they are the prudent choice. It is a joyful luxury to choose your child’s shoes based on looks alone and I love it.
* Sam has his hands fisted most of the time and his wrists bent outwards. The splints, which he mostly wears at night, are an attempt to stretch out his wrists and fingers to avoid him losing range in the muscles.