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Cast for her first spinal brace for Scoliosis around age 2, Lizzie's brace went from under her arms down to her hips, usually fastening at the back.
Nappies go on first, then a vest to protect the skin from the brace and to regulate body heat. The brace fits over it. Clothes go on top. Every time the pad needs changing (several times a day) all clothes need to
be removed again before a clean pad is placed. It means that all clothes need to be either stretchy, or very well made to cope with the constant wear. Hipster
jeans were a nightmare, always getting caught under the back of her brace whilst she sat in her wheelchair. I refused to buy jogging pants. I made her trousers which came up to her waist
.
Lizzie also wears ankle braces, or AFO's, to keep her Achilles tendons from tightening. These also need to be removed prior to a pad change, as the ankles
cannot flex whilst these braces are on. Trousers need to be wide enough in the leg to push up to the knee to allow the AFO's to be put on afterwards. Lizzie has always been petite and slim, and looks good in
straight-leg jeans. If the width is right you can't see the outline of the AFO's underneath, and her legs don't attract attention. Thoughtful design is useful in helping a child with a physical disability to look "normal" in public
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Lizzie is pretty, with lovely long thick hair. Dresses would suit her. But Lizzie likes to grab and chew fabrics. So she continues to wear trousers to
protect her modesty (except for fancy dress at school, where I ensure a lot of layers). I created colourful towelling bibs
for her to chew on, instead of her hands. I made enough for her classmates too, which went down well with everyone!
In 2009 Lizzie had an operation enabling her to be tube fed (Gastrostomy). I adapted Lizzie's clothes so that a tube could be discreetly attached to her
stomach peg for liquid meals, whilst her Spinal brace kept her upright. Bought vests were often too wide for Lizzie, and creased under her brace. So I created her special vests
, slim enough to reduce creases and with easy access direct to the button site. School staff were delighted! "You should go into business!" I was only interested in bespoke solutions for my own very special
client. This was 3 dimensional problem-solving at a level I could not have anticipated.
I wanted Lizzie to be stylish and warm in her wheelchair. She needed something that looked like a coat or cloak from the front with sleeves, yet be open
down the back. It needed to be big enough to cover Lizzie and her lightweight wheelchair. I bought a large rectangular washable blanket, and cut the pattern so that the professionally finished edges were at
the front and hem, running down from the neck and around the hem towards the back opening, also edging the hood. Lizzie's wheelchair coat with hood
was admired by all, and lasted many years.
The top of Lizzie's brace was normally covered by her standard school polo tops with the buttons done up. Pretty tops or T shirts which covered the
brace became harder to find, as teenage styles were becoming more revealing, appropriate perhaps for her contemporaries, but emphasising Lizzie's difference. I made some T shirts
with attached matching cloth neckerchief which helped to cover her brace.
In 2016 Lizzie had major Spinal Realignment surgery, so she no longer wears a brace. It is now easier to go out shopping for her, but clothes still
need to be robust to withstand the wear and tear of her everyday care needs.
I'm delighted that Marks and Spencer's have launched their Easy Dressing children's wear range, and it's great that it's been so well received by
parents. It's certainly needed. I have enjoyed the challenges which Lizzie's real physical difficulties have thrown up. She is my own Bespoke client, but I would
have preferred to have been making her "normal" clothes as she grew up. At 18 she would probably be refusing to wear anything I might have made for her, designing and making her own creations instead!
"Been there, made the T shirt"!
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