My sister has a thing about shoes. Not quite a Carrie Bradshaw kind of thing, but a thing nonetheless. I’ve never got it, really. For me, shoes are purely functional. I like them to look nice, but not to cripple me, and I have a minimal number of pairs: running shoes (about to fall to bits), black flats, brown flats, boots, wellies and boots with heels (with a hole in the sole that means I can’t wear them when it’s wet).
I’ve never really liked buying shoes for me. But I’ve always like doing it for Sissyboo. Shoes are so much nicer (especially for girls) than when I was a kid and wore horrible black lace ups or boring old t-bars to school. She often has three pairs on the go at once. But crikey, shoes are expensive! We always have Clarks shoes for school for her, and they are blooming brilliant, but everything else is supermarket bought. Sorry Sissyboo. Who has that much money for shoes that last a few months?
But the niggles of constantly buying shoes for rapidly growing kids’ feet becomes a whole other league of problem when your child needs specialist orthotic footwear, as Boo does. His high tone in his legs means he has a tendency to toe curl, stand on tip-toe (sometimes) if you hold him up in a vertical position, scissor his legs if you try to facilitate supported walking, and for the insides of his feet to rotate up 30 or so degrees so that he is balancing on the outside of his feet rather than the soles. None of this is good for his feet, legs or hips.
When just before Christmas Boo first put Piedro boots on, a specialist brand of orthotically designed footwear for children with problems from hypermobility to severe cerebral palsy, I couldn’t believe the difference they made. His feet were grounded. The soles of his feet were pancaked. If I could have looked through the leather, I think his toes would’ve been nearly flat.
And the effects on other parts of his body were remarkable too. His bottom, which tends to stick out, James Cagney style, without his shoes on went in, in alignment with his back. He stood straighter, Gene Kelly style, despite having a trunk made of the stuff of marshmallows. It was amazing. His posture changed. We could secure his feet into his specialist seating at home and nursery and he sat better, he could eat better and play more easily. He could practise going from sitting to standing in ways that were too difficult before. It changed so much in our lives. A pair of shoes did that. Seriously.
Our physio department bought these shoes for Boo, which retail at about £120. We were grateful, of course, and promised to give them back when he’d outgrown them, which we hoped wouldn’t be too soon. In February (only 3 months after he’d been fitted for the previous pair) we measured him again and he had gone up 2 sizes and needed new ones urgently. We looked through the catalogue and made a choice (he has very wide feet, so only some of the range was available to him). We found some lovely ones. They were put on order.
And then a few days later we had an apologetic phone message to say that the budget had been cut and we needed to buy them ourselves. As they were so expensive we were told that we could try other brands, Kickers, Ecco or Timberland (all cheaper at around £50), although we had been told before the budget cut that Boo’s problems were such that only orthotic footwear would really do the job. And Kickers and Timberland don’t do width fittings. One size fits all doesn’t help kids with very wide or narrow feet. They just weren’t right for Boo, although I know many parents of kids who have CP swear by them.
We get a fair bit of stuff from the NHS. He has, for example, just been approved for Lycra garments and we are grateful they have agreed to fund them as we think it could be the difference between him sitting independently and not. (It’s an investment now that could save them money later, aside from the obvious health and standard of living benefits to Boo.)
There are lots of things we don’t get, however. The second-hand arm splints we have been given, rather than having him measured him for new ones, are some of the mankiest things I have ever seen, for example, and a lot of seating and other equipment others get in other areas for their kids, we have had to buy ourselves. I do work, of course, so that helps enormously. And I could, I guess, afford £120 every 3-6 months for shoes on top of everything else.
But what about all the shoes that are already out there and not being worn? Where are all those shoes dispensed by physios, or bought by parents whose physio departments won’t or can’t fund orthotic footwear (I know they don’t at all in many areas) and that are worn for a couple of months by often non-walking children? What a waste of money and resources!
To say orthotic shoes are sturdy is an understatement. They look like they would hold up if you ran them over them with a Range Rover. Three months of wear by a largely non-mobile child means they have lots of life still left in them. And there must be thousands of pairs out there, sitting in physio cupboards or those of parents like me, just waiting to be worn by kids like Boo.
After doing some research, I decided Boo really needed Piedros or Fitzkidz boots, rather than Kickers or Timberlands (the latter just aren’t wide enough). I spent hours on Ebay and special needs boards and forums trying to find second-hand boots in the right size for purchase. One problem I kept coming up with was that people usually list them only by size (which are given in European not UK measurements, just to confuse things) and rarely with a width fitting. I know how big Boo’s shoes need to be, but his needs mean they have to be the right width too. Surely this must be true of all kids who need orthotic footwear. In case you have boots like these and don’t know what the width size is, as they don’t put this on the sole, it’s the first digit of the long number that appears inside the boot. If you have a Piedro or Fitzkidz boot with a number inside that begins with a 5, for example, it’s width 5. (A kind soul on a forum explained this to me.)
To cut a long story short, I managed to get Boo a pair of Fitzkidz boots from my Twitter and blogging friend, One Off Ordinary. Right size, right width. She didn’t even ask for any money for postage, because she is one heck of a lovely lady. OK, they are a teeny bit scuffed at the toe, but they are in lovely condition and Boo’s posture is great in them. I was and am so grateful to her. And then around the same time, I saw and bought a pair on Ebay in the next size up, similarly a bit worn at the toe, but structurally sound and with soles that look like they have never ventured outside.
I was relieved to sort this out. But it took a lot of time. And the thought of having to do this for every pair of shoes every few months for the next few years on top of everything else is not appealing. But it’s certainly easier on the bank balance than forking out hundreds of pounds a year on shoes.
And my environmental conscience feels better too. There are so many shoes out there. Maybe it’s because we think they’re just shoes and not the important pieces of specialist equipment they certainly are that we squirrel them away and don’t pass them on or sell them to others who might desperately need them and for whom £120 for another pair of shoes is just too much.
I want to do something about this. Something like a shoe amnesty, where those of us with Piedros or other orthotic footwear can tell people what we have lying around if others would like to have them. There are places where people can sell boots (Ebay being just one), but I think there are other people who might just want to give things away for free, especially if they can see they might be able to get the next pair for their little one for free too.
I haven’t worked out the logistics of this yet. My friends over at Tough Little Cookies (and boy, they have had some ridiculous shoe dramas recently) suggested a Freecycle page. I don’t know enough about Freecycle yet to know it that would work, but I will be on the case in the next month of so and you can nag me about it if you don’t hear anything.
In the meantime, if you’d be interested in this, or perhaps you have a pair of shoes you would be happy to give to others now, you could leave a comment below and I could gauge potential interest and maybe put folks in touch with one another so all our kids are standing a bit better and taller.
From my conversations with people on email and Twitter about this in the last few weeks, this is a big problem for many SEN parents and it doesn’t seem to be one that will go away. So maybe, as with so many things, perhaps we should look to each other for solutions rather than the hard-pressed and under-resourced healthcare professionals because frankly, we understand the problem better than anyone else and it just matters more to us.
How many times have you thought since you started this SEN journey that people ought to try to walk a mile in our shoes? This might be one way we can try to make that a reality.