This Year’s Must Have …

One day in the Summer holidays, Daddy finished work early and we all went down to the lake for a bike ride.

Daddy and I did the biking: Freddie was just in it for the ride.

But on this occasion we’ll let him off, because he was sporting the latest must-have accessory: rigid AFO splints in a natty rainbow balloon design.

At his last visit to the Orthotics Department (now run by a private firm, much to my disgust — the NHS is being nibbled to death right before our very eyes by the Tory government who are asset-stripping this country for their own benefit {may the devil himself gnaw and suck their bones}). Where were we? Yes — at his last visit to Orthotics, the Orthotist again expressed concern at the severity of hypermobility in his ankles. It is so bad that the DAFOs that he wore inside his shoes were being deformed to fit the shape his ankles fall into when he walks. What they are supposed to do is hold the structures in his ankle in the correct, healthy position for walking, as his tendons would do if they were not abnormally stretchy. The problem with DAFOs is that the plastic they are made of is ever so slightly flexible. This means that they are not strong enough to prevent Freddie’s tendons from overstretching when he puts weight on his legs. And this means that the bones in his legs and feet are not held in the correct position, which makes walking inefficient and tiring, and gradually causes damage which will result in leg and lower back pain when Freddie is older.

Before you ask — yes, we’ve tried Piedros. He deforms those too. And Kickers, even with the DAFOs in. And every other shoe we’ve ever tried. This is not a footwear problem.

The Orthotist gave him some slightly higher DAFOs to be going on with, and said she would like Freddie to be seen by both herself and the Orthopaedic surgeon at a combined clinic, and would make the referral right away.

A week or so later I got a call from the surgeon’s secretary — they’d had a cancellation the following week, would we be able to take the appointment? I said yes.

The surgeon was in agreement with the Orthotist — rigid splints, aka AFOs, were really our only option now. Because it was a combined clinic the Orthotist was on hand to make the casts for them there and then — they have to be moulded to the leg with the ankle held in the correct position. Freddie was allowed to choose which pattern he wanted to have on them. He chose rainbow balloons. I preferred the pop art comic book style, but they’re his splints, he has to wear them, so the choice was his.

Okay, so maybe they’re not everybody’s must-have accessory for 2019, judging by the reactions I’ve had when I’ve mentioned them. I’ve been met with tearful cries of ‘Oh, the poor lamb!’ and similar.

Perhaps those people were thinking of those charity collection boxes that I remember from the 1970s: basically a plastic sculpture of a child wearing an expression of patient martyrdom on their (acceptably pretty) face and tell-tale buckles strapped around their lower legs. If memory serves the child clutched an equally forlorn puppy in it’s arms. I won’t mention which charity it was, their name was awful, but they have a better one now.

Freddie is no one’s forlorn little lamb. If he’s not crying over the splints why should anyone else? He’s a handsome little chap, but he wouldn’t make a good model for a pity-porn collecting tin — he’s far too joyful and fiesty.  He was born fighting; and he fought me over these splints at first. He’s kicked furiously when I’ve tried to put them on, he’s launched them across the room, and even run off with them and tried to hide them. I would challenge anyone who thinks that a person with Down’s Syndrome could easily be manipulated into doing something they don’t want to, to come and get Freddie’s splints on. It’s not that he doesn’t understand why he needs to wear them — he understands that, in the same way that I understand that eating lots of chocolate isn’t good for me. It’s simply that Freddie hates his splints in the same way that I love chocolate.

Now, I’m not going to pretend that they are not uncomfortable, or that Freddie and I both would rather he didn’t have to wear them. But the fact remains that he needs them, and so we have no choice but to incorporate them into our lives.

Now, although cycling six laps of the lake on a tandem made for three, with Freddie laughing his head off in the bucket seat up front, is probably just the sort of exercise I need to incorporate into my life, I have to get him walking in them if they are going to work. And, little by little, we’re getting there. Right after we’d dropped the bike off at the cycle hire centre, Freddie saw some dogs out for walkies on the canal towpath a few yards away. In his eagerness he disregarded the splints for those few yards. That’s the key with Freddie when you want to encourage him to do something — you have to key into the things he’s interested in to motivate him.

What really broke the back of his reluctance to walk was a visit to Alton Towers, something he’d been talking about for ages since his sister rather rashly promised that she would take him one day. We put it on the calendar for a Friday, and referred to it every time he seemed inclined to misbehave or be uncooperative. When we got there he was so excited, there were so many things he wanted to go on … and he ‘forgot’ about the splints. And he knows that I know that if he can run around Alton Towers all day in his splints, he can manage the fifteen minute walk to school in them.

Last Tuesday afternoon he walked with me all the way from school into town, a walk that would usually take us twenty or twenty-five minutes. I took us a little longer on this occasion because he was holding hands with a friend from his class who happened to be going the same way, while me and the other mum chatted. Once we got into town we sat down just long enough to eat a snack before going to the leisure centre for a new multi-sports club that has just started up. He played ball games for an hour — all in all, by the time we got home, he’d been walking, running, kicking, and just generally ‘doing stuff’ with those splints on for eight and a half hours. And with no complaint, no tears and certainly no expression of patient martyrdom (just a minor strop because he was getting tired).

I have to confess, though, that he is rather partial to puppies, forlorn or otherwise.

2 thoughts on “This Year’s Must Have …

  1. Les JOHNSTONE

    Brilliant, made me chuckle as I recalled Bruce’s reluctance to wear hearing aids as a bairn. Until the audiologist mentioned he could have football club crests on the mould in his ear. Queue ones with bloody Chelsea badges and a much more cooperative Bruce.

    Liked by 1 person

    Reply

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