Daily life with a disability (or equipment, equipment, equipment)

Meet Madeleine
Since I prefer not to post photos of my girls here, Maddie will today be demonstrating some of my girls' daily living equipment. Please excuse her hair, she's older than she looks and she's embarrassed to admit that she's lost her hat. I would have brushed it but she also has a bit of a balding problem going on (don't tell her I told you that).

We have a variety of different aids available from the low tech
to the high tech
Little Fish loves to be propped up against the back of the settee to watch the world go by, and doesn't even realise she's doing her physio as she stands there. It's great for her hips and the gaiters give her legs a good stretch, but she isn't safe to be left there alone (Maddy is older and wiser and fairly well padded). So the Rabbit Stander gives her much more freedom to move herself around whilst still sneakily strengthening her hips, and makes sure she's safe even if I do have to go off and do other things.

For a more able child the gaiters and AFOs might enable the child to stand or walk leaning against a regular toy, like this
Maddy likes taking her smaller siblings out for a stroll.


Alright, let's talk about seating.
Maddy can sit quite well all by herself
However she is very floppy (knitted limbs don't have much muscle tone). So sometimes we give her a bit of help
Look closely and you'll see she's still wearing her splints and her Ankle Foot Orthoses (AFOs, hard plastic splints moulded to fit her feet and hold them in a good position. Most children who wear these put their shoes on over the top, but Maddie's boots are knitted to her ankles so she gets to wear them underneath). The padded scarf is another low-tech (or possibly No-tech) aid. Little Fish, like Maddie, is very floppy. Mog is very stiff most of the time; if she were sitting in this chair we'd tie the scarf lower down to stop her from pushing herself out of the chair by stretching out her hips.

Two ordinary chairs, and the girls can sit in them for reasonable periods of time. However I'd like to introduce to to our TumbleForm
This seems to be the standard "supported chair" just about every parent of a disabled child gets offered. It's comfy, it's wipeable, it's a good "plonking" chair for slobbing in front of the television. It's even quite handy for the odd snack. But it's not much use for joining in family meals or for taking part in conversations when everyone else is standing up.

This is where you need our Leckey Advance chair. This chair goes up
and down
and anywhere in between
We like this chair!

Getting out and about in the wider world can be interesting too. We started out with a variety of different baby buggies and prams. Here's our favourite, the E3.
This was and is our favourite mainstream pushchair. It's big enough that even long-leggetty Mog still fits it, it's supportive enough that either girl can fall asleep in it, and with the double kit we can get both girls in it or one girl and a baby. Mmm babies. We had a baby for Christmas last year, wonder if we'll manage it again for this? OK back to the point. It's a great chair, but see how Maddy is leaning to the left? Left in this chair for too long it would be easy for Maddy to develop problems with her hip and spine. What she needs is a chair with decent postural support, like this
This is Mog's Foam Karve. This has to be the best wheelchair we've ever had. It is carved out to fit all the kinks in Mog's body, and she is supremely comfortable in it. It's so comfy and so supportive that Mog often chooses to sleep in it when she is unwell rather than try to get comfortable lying down.

Of course, not every disabled child will need a wheelchair as supportive as this. And when Maddie is less tired she very much enjoys using Little Fish's KidActive.
She could do with some footplates though. We had to take them off for Little Fish, as she is too small to use them and they just looked silly.

At the end of the day, there's nothing nicer than a good bath. That's easier talked about than carried out when you have a child like Mog, a child with a body that twists and turns and slips and slides and drowns. There are dozens of different bath aids available to help with this. Before we had one, we used a large towel in the bottom of the bath, like this
Please excuse Maddie's splints and clothes. She's a modest little thing.
The towel helped us in several ways. It provided a measure of padding for Mog and kept her from bruising her skinny hips and ankles and shoulder blades. Wet, it provided a decent non-slip coating so stopped Mog from slithering all over the bathtub. And with the top end rolled up it gave Mog the beginnings of a headrest, lifting her face up out of the water and stopping her from drowning. Always useful. It was still necessary to keep at least one hand on Mog at all times though. So we were very pleased when social services provided us with this Robbie instead.
This chair has the added advantage that we can use it as a deckchair outside in the summer. It's very comfortable, easily adaptable as the child grows, dries quickly, is light and easy to take out of the bath when not needed, and folds up nice and small for when we go away. It also sits quite low down in the water, so you don't need gallons of water to get a decent bath, unlike some bath aids we have tried.

Little Fish on the other hand prefers to use a baby bath. She's much too big to use it in the ordinary baby way, but finds the smaller shape gives her a bit more security, she can lean back against it and hold on to both sides, which means she has more scope to play with things in the water.
Like Maddie here, Little Fish also likes to use her bath when she is practicing Long Sitting. Long Sitting stretches out her hamstrings which is important for children who do not walk. Little Fish finds that when her gaiters and AFOs are on it is very difficult for her to balance when sitting on the floor. So we sling her in the baby bath, or in a cardboard box, or on the corner of the settee. There are corner sitters available from various different disability living equipment suppliers, and if Mog were still long sitting then she'd need one of the more specialist ones to support her head and back as well as her hips. But this does just fine for our Little Fish.

One day we'll have a wheelchair accessible swing in the garden to match our roundabout (see top right). But until then, we all three enjoy our swingseat.

Have a good day!
Tia