Last week I stood in the school carpark and wept with joy and pride. I screamed with excitement as I shared the amazing, miraculous news.
My daughter was wearing shoes!
Last Tuesday, after a great deal of soul searching, we chose to send our Autistic daughters back to school part time. As we were all ill before the lockdown they had been off school for 10 weeks. Both have some extreme and challenging behaviours and sleep problems. Both of us, as parents, were attempting to work from home and the emotional impact of being out of routine was starting to have a significant negative affect on our eldest daughter’s mental health. As children with complex needs (both require 1 to 1) and as children of a key worker, school has been open to us throughout the lockdown period but last week, with support from incredible staff at the school, we decided to bring them back to some sense of normality.
This difficult decision is not what this blog post is about. I mentioned it here to explain how the heroic efforts of her talented and dedicated teaching assistants came to be part of this story. This is a blog post about hope and how dangerous feeling hopeful can be.
When parents of tiny children are deranged with sleep deprivation, wise and experienced relatives and friends comfort them with the thought that this will not last forever. You will not be awake all night. You will not always be changing dirty nappies. You will not always have to watch your children with hawk-like focus. Except, for some of us with children with additional needs, this isn’t true.
If you are a parent, think of any super annoying phase your child went though and now imagine that the phase didn’t last weeks or months but for years on end. I remember a friend telling me she wanted to smack Iggle Piggle’s smug face in. Now imagine you’ve watched In The Night Garden daily for over a decade?!
With children like mine some of these ‘phases’ can be particularly horrific. They are horrible for the child and the feelings of helplessness as you struggle to know how to help them are completely soul destroying. Food refusal, incessant high pitched screaming, self harming behaviours, biting, hair pulling, spitting. faeces smearing are all commonplace in children like mine.
For around four years my eldest daughter repeatedly and obsessively regurgitated and re-swallowed her food. All testing found no medical reason for this. It’s called rumination disorder and like any stim (stimulating behaviour) it provides some form of comfort for the individual however unpalatable it may be to those around them. The bizarre solution (found by my resourceful mum on what must have been page 100 of google) was a starch satiation diet which we still follow and it has reduced the offending behaviour by at least 85%. Our daughter no longer needs to have a complete change of vomit covered clothes several times a day, she can use her voice more, she is finally actually growing and is no longer rotting her teeth.
While we lived through this, I genuinely believed that it would never end. After four years with no experts able to offer any advice at all can you blame me?
For the past two and a half years the same daughter has been unable to wear shoes of any kind. She has had problems acclimatising to new shoes for many years but in October 2017 it was like a switch was flicked and that was it – no shoes. We tried every style and variety of shoe. We tried reward systems. We tried refusing to allow her to go outside without shoes. We tried desensitisation programs and sought advice from any expert we could access but nothing would persuade her. Eventually we did manage to get her to wear slipper socks and so, for the past few years, we have spent a small fortune on moccasin slippers which, as not designed for outdoor use, would fall apart with alarming regularity. Twice I contacted wholesalers and got them to sell me all their remaining stock, terrified that the item would cease to be available.
Some of you may be reading this imagining that we are soft or, worse, feckless. How difficult can it be to get a child, even an autistic one, to wear shoes? You have clearly never seen a meltdown of this scale. Even the shoes being in the same room could cause screaming, crying, escaping or self harming behaviour and let’s remember, this is not a toddler, having terrible twos but a child, completely unaware of their own strength, larger than some smaller adults, flailing, screaming and kicking.
It seemed after all this time that she would never wear shoes again.
Until…in steps my resourceful, brilliant mum (again) sending me a link to a website for specialist disability clothes. They have special shoes (called Billy shoes) which are completely open and have a zip to hold them in place.
On Tuesday I handed them to my daughter’s TA and said, “These are her new shoes. I. am not expecting miracles.”
At 3pm when I went to pick her up, out she walked with a TA on each side. No screaming. No fuss. And she was wearing shoes!
I yelled across the carpark to other parents. I even manically yelled at the headmaster.
Me: “She’s wearing shoes.”
Him: “Shhh – Don’t mention it.”
But I will mention it.
She’s worn shoes every day this week.
Because (thank the universe) miracles do happen.