The thing that worries me most about my disabled daughter as she gets older is who will understand her. Who will really get to know who she is, and what she needs to stay well and happy? How can we help her achieve some freedom and independence, without exposing her to horrible risks?
Trapped by the rare disease, Rett Syndrome, in a body that won’t work, while her mind is active, she is totally reliant on the people around her for everything she needs, every moment of every day. The extent of her needs, and her vulnerability if they are not met, makes me slightly dizzy.
We need breaks from her, but the idea that she might be sad and bewildered, or that other people might be frustrated with her because they don’t understand what she wants, is hard to bear. (I should point out that I don’t always know myself what she needs or how to help – because she’s a complex girl – but that’s somehow different.)
Some parents deal with this situation by doing everything themselves. I admire them, but I can’t be them. In any case, time apart is inevitable while she’s at school or we’re at work. There’s also overnight respite (vanishingly rare, but I live in hope), holiday playschemes (ditto) and time spent in hospital.
The Communication Passport
My brain conjures scenarios where someone has to step in and look after my daughter without me being there to tell them what to do. And so I have created a very detailed ‘communication passport’ (for want of a better description) for her. It’s a bit like a care plan, but it’s much more than that: it’s as complete a guide as I can manage to who she is and why she matters, as well as what she needs and all the things that don’t work for her as they should. It goes with her everywhere, and gives me (some) peace of mind.
Written in the first person and illustrated with photos, it sets out who she is. It begins with a picture of her with her family, a summary of things people should know about her, and an overview of how she communicates (‘You need to watch my eyes’) and what she particularly likes (pianos, babies, chocolate buttons) and dislikes (‘the sun in my eyes’, ‘waiting for anything’, ‘baby books with only a word or two on each page’).
Then a list of all the things people like and admire about her. ‘My eyes, and the way I can talk with them.’ ‘My strong opinions on what I like and dislike.’ ‘My extreme love of music, especially the piano.’ And a detailed section on how to help her if she’s unhappy. ‘I prefer to be given quiet time and space to feel better, and don’t usually respond well to people who try to entertain me when I am tired and over-stimulated.’ (Her and me both.)
Only after that do we get into all the details of the aids and equipment she uses each day, the medicines she takes (and when they were first prescribed, and what for), her list of diagnoses, her daily routines, and the long list of professionals and agencies involved in her care and support. There are entire sections on how to help her eat (what type of spoon) and get dressed (what kind of socks). Yes, it’s a control freak’s charter.
It saves us from a care disaster
And I make no apology for it. We know from experience that, without detailed guidance, it isn’t obvious even to the most well-meaning third party what to do in various situations. I have picked her up from respite care with her spinal brace on upside down, or her leg splints against her bare skin, or (more superficially) her pyjamas on as day-wear. It all matters, because it all affects her comfort and dignity, and how people perceive her.
Other people’s perceptions are important. I want my daughter to appear to the world as she does to me: loved, well cared for, bright, opinionated, funny. Not as a poor kid in a wheelchair who hasn’t been positioned correctly and is wearing odd clothes.
She was recently in hospital for major spinal surgery, and spent a number of days in paediatric intensive care and then on the orthopaedic ward. All the nurses caring for her picked up and read her communication passport. It’s an essential addition to her medical notes – because she is more than a collection of symptoms and diagnoses and interventions, and because she depends more than most children on other people knowing and understanding.
One of the most important things it conveys is ‘her normal’. Like many other parents of complex children, I’ve encountered health professionals who are inclined to attribute any random issue to her main diagnosis. ‘She has Rett Syndrome – it’s what we expect.’ ‘It’s a Rett thing.’ No: sometimes it isn’t. Sometimes it’s something different and separate and treatable. If she’s yelling when everything in her environment is as it should be, we need to work out if something is hurting, and do what we can to help.
That’s where a personal issue becomes a distinctly political one. Do we as a society value and respect children and adults with learning disabilities enough to ‘hear’ them properly? The short answer is that collectively, we clearly don’t. How else to explain the research published this week that found that people with learning disabilities die, on average, 15-20 years sooner than the general population, with 1,200 premature deaths each year. We know that people with learning disabilities are much more likely to develop health problems and less likely to receive regular health checks. They may be unable to describe their symptoms – or to be understood when they do – and so problems go unrecognised.
This is why, like so many other parents, I worry. Who will hear our children if we aren’t there to shout for them? The first step is seeing them as fully ‘real’ people, who want and need the same things we all do. That may sound embarrassingly obvious, but it’s not clear enough yet to everyone. If we rely on other people to care for our children – of whatever age – we need to be certain that they truly see them.
Don’t miss a thing!
When her younger daughter was diagnosed with Rett Syndrome in 2009 shortly before her second birthday, Catriona found herself dealing in practice with things she’d previously thought she understood in principle.
She juggles her work as policy officer for a national disability charity with caring and advocating for her daughter. She is passionate about improving the lives of disabled children and their families, and making the systems that should support them work more transparently and equitably.