In our second piece, on raising awareness of invisible disabilities, we hear a moving account from a parent of a child who has an invisible disability. Although it is thought that invisible disabilities account for 96% of chronic medical conditions (Hive Learning, 2021), people with invisible disabilities face a different stigma than those with visible disabilities. The stigmatisation of invisible disabilities is detrimental for many reasons; it limits the scope of discussion, decreases our understanding of the day-to-day challenges of living with a disability, erects barriers to career opportunities, and reinforces the negative feedback mechanisms embedded in our current disability care system. Being mindful, educating yourself and understanding where people will need adjustments to ensure their wellbeing are just a few things we can do to promote and foster a culture that understands the challenges those with invisible disabilities face in our society.
We have been home educating since the end of the first lockdown. Although what we do is referred to as Elective Home Education, it wasn’t by choice. That story is far too long but in short, the SENDCo told me across a table on the last day of the summer term, in not so many words, that going forward, the school would not be able to meet my daughter’s need. Then it was the summer holidays, during a global pandemic. How was I to arrange visits to assess the suitability of other provisions in time for September? I couldn’t. So here we are.
My daughter’s anxiety was obvious from an early age. I first saw her ‘freeze’ when she was three years old, in the middle of KindyGym class, during a game where other children were running and laughing and squealing. I was puzzled. I asked her what had happened and of course she didn’t know. It became a frequent occurrence. And I asked her why she didn’t want to join in, said things like ‘it’s fun, look, all the other kids are enjoying it.’ If only I’d known better. Family gatherings were awkward, stressful and tiring. Aunties would jokingly call her a snob, Grandparents would mock-accuse her of not loving them, Uncles would make fun of her silence in an effort to trick her into talking. While cousins played games together, she sat alone in a room and read. And we were scorned as parents for not ‘forcing her’ to socialise.
I hadn’t considered Autism. I had two friends with non-verbal autistic children. That was my narrow view of it. And I had never heard of Selective Mutism. Like everyone else I assumed she was extremely shy, and I tried everything, and hoped that she would grow out it. Expected she’d grow out of it. But she only grew more into it. And when she started secondary school – I had purposely chosen the smallest one I could find - the silence and paralysis took over.
She was diagnosed at twelve. At thirteen she questioned the point of her being alive. Next month she’ll be fifteen. Being out of school has given her the space she needed to emerge from the dark anxious fog that kept her caged in. She speaks now, sometimes, to neighbours, to the lady in the wool shop, the book shop, so long as no-one else is around and the questions are clear and gently directed and enough time is given for the response, which is always short and to the point, but a verbal response nevertheless. This is all new and she’s pleased with her progress. It is renewing my hope after two horrendous years of schooling that we both felt would last forever. She is slowly beginning to shine, and some days she is so bright that it takes my breath away. But other days that light is so faint it’s hardly there at all, and often, the simplest things can overshadow it completely.
She has just finished a guitar lesson with a lovely tutor who took me months to find. Thankfully, my daughter feels comfortable with her; this is always a gamble when trying something new. She has managed to speak - greetings, thank yous, and even, even to ask for clarification when she’s unsure. When she was younger she’d tell me that saying hello to another person was the hardest thing in the world. We are in the car driving home and we are not discussing music or fashion, instead she is asking me what to say when someone wishes you a good day. She tells me that the end of the lesson is the worst, because she doesn’t know how to end it. She says small talk, like returning the wish of a good day with a ‘you too’, is like speaking a foreign language.
We are searching for a suitable sixth form provision – she wants to do A-Levels and is thinking of Midwifery as a career - for when the time comes. I don’t tell her how an essential attribute of a midwife is to be able to communicate with a diverse range of people, and to be able to think quickly and decisively. I fool myself into believing that perhaps she’ll grow into those things, in time. We visited a school and she sat in the office, answering interview style questions – albeit slowly, and quietly - and I had to contain my joy. A year ago she wouldn’t have been able to get out of the car, let alone walk into the foyer. It is in these seemingly small but hugely significant moments that we celebrate, inwardly, because to bring attention to it may or may not be detrimental to that progress. You just never know. So you hold it all in. And while other parents are sharing their child’s grand sporting and academic achievements on social media, you want to shout ‘Yes, but my child spoke! She actually spoke!’
It is such an awful, derogatory term – Selective Mutism. One of her reports describes her as a selective mute. She’s not a ‘mute’, I want to say. She is articulate, insightful, intelligent. You should hear her at home, I want to say, we can’t get a word in! And a moral compass so strong; no qualms at all about expressing her opinions on the most important societal issues. Her silence isn’t a choice, as the label inadvertently implies. In ‘select’ circumstances and situations, she cannot speak. She becomes frozen; disabled. But I am fortunate to see what others don’t. I see what she is capable of. I look at her, and listen to her, and I am in awe, where others can only conclude rudeness, defiance, weakness even. Or worst of all, not worth the bother. It’s heartbreaking, as a mother, to know the wonders your child possesses, and to know those wonders are invisible to everyone else. And there’s nothing you can do. They don’t give out certificates and trophies for saying ‘Have a nice day’ to your guitar tutor. Nobody sees the effort that such a simple gesture requires.
And so this is what happens when the clouds come over.
Today we are working on English. We’ve finished the course and are preparing for our first GCSE exam in a few months time. She does well academically. Her assignments have been marked and returned as Grade 9’s, and she’s running at a 98% in her math tests. But the idea of exams is an anxiety trigger, so we tread carefully around it. I have printed some sample papers, for practice. She’s a talented writer but analysing another’s work - turning around and sifting through and forming a response to somebody else’s words - these are all very difficult tasks for a mind such as hers. I know this. I’ve seen, so many times, how it unfolds.
So, last week, we read the text together. We read carefully through the question paper. We analysed and discussed it. We made a plan, bullet points, notes. We talked about it again this morning. We agreed we would set it all up and I would leave her to write. It’s a 45 minute question, but we are not timing today. If it takes an hour or more, so be it. We spent time making a cover page, as a warm up, to relax and add in some fun. There’s absolutely no pressure. She knows this, and she’s happy to begin.
I take a seat and get on with my own tasks. I’m here if she needs me but we both agree it’ll be fine. I’m not worried. I’ve prepared her well. She can do this. She believes that and so do I. I watch her begin. I watch discreetly as she ponders, hovering her pen above the page. She starts. She writes one sentence. Pauses. Begins another. I see frustration creeping into her expression, I see the tightening of her jaw. I feel my own heart beat faster; I am silently willing her on. Keep trying. You can do it. But then it happens. She throws the pen and slams the book closed and her voice is rising about how she can’t. Despite how I feel I speak calmly, encouraging her not to give up, reminding her that there’s no pressure, all she has to do is try, keep going, do the best she can. She takes some breaths, flaps her hands, wipes her face. She retrieves the pen, opens the book. I don’t allow myself to feel relieved because we’ve been here before, so many times. I am constantly gripping the edge of that cliff.
She begins to write again. I realise I’m holding my breath. Then suddenly she screams and throws herself backwards, throws the work forwards. She’s shouting and turning red and I go to her, tell her it’s okay, we’ll come back to it another time, even though inside I’m crushed. And I know that this failure is crushing her too and she starts to hyperventilate, and rock, and pull at her hair, and I can see the tension in her hands and feet. She starts scratching herself. I try to get her to focus on things she can see, things she can touch, but it’s not working. I tell her to put her head down, between her knees, and I breathe with her. She can’t slow it down. It takes time. She’s lost in the panic. I rub my hand up and down her back. Eventually she comes up for air and curls into me and then lies down on the floor, exhausted. I fetch a pillow. I put a blanket over her. She’s already asleep. I kneel beside her, stroking her hair and in front of me is her book. Two and a half sentences, the third turned into an angry black scribble that has ripped through the page. I stare at the window and I’m numb. I don’t know what else to do. How to help. I feel like letting go of the cliff edge; my fingers are bleeding and I’m exhausted after years of this. But I know I can’t and I won’t.
This is our never ending rollercoaster and this is the fall. There is so much climbing, so much throwing and jolting. These are the loops we ride. Later she will talk it through, she will ask how she will ever get any qualifications, how she will ever be able to work. Later she will try it again and succeed. This is the strength within her. But right now she’s sleeping, and I’m staring through the window, crying silently, remembering that this is where we are.
Many thanks to this parent for sharing their story. Here are our 7 other tips for being inclusive to people with invisible disabilities — whether you know they have one or not.
- Broaden your understanding
- Remember that not every disability is visible
- Ask yourself, how might physical or social barriers restrict someone with that invisible disability?
- Rethink what acceptable behaviour or styles of working look like to you. Are you unwittingly putting neurodiversity candidates and colleagues at a disadvantage?
- Believe people when they tell you about their pain
- Share best practices for website accessibility to make your website inclusive for everyone
- Review your accessibility standards
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