Hidden disability: when it’s not obvious
When your child has a hidden disability, focussing on what’s important brings its own complications, says Katherine Granich.
Sometimes, when I’m parking in a disability parking spot – for which I have an officially issued permit – I get “that look” from people. The permit is for my eight-year-old daughter, who has a genetic disorder with a constellation of attendant diagnoses, such as impaired vision and hearing, hypotonia (low tone), and hypermobile (overly bendy) joints. Getting in and out of the car is a struggle for her, and navigating a busy carpark is downright dangerous. But to a casual observer, she looks quite “normal”, and I can sometimes see the calculation in their gaze. Should you be parking there? Why do you get a permit? It doesn’t look like there’s anything wrong!
I have three children, and all of them have life-altering diagnoses which aren’t obvious to others at first – or even second – glance. My youngest child, my daughter, has Noonan syndrome, a genetic disorder that affects many different parts of her body. My son, who is 12, is autistic and has developmental coordination disorder. My oldest child, who is now at university, has ADHD and depression.
Parenting kids who have non-visible disabilities is challenging. When other people can’t see something “wrong”, it’s hard for them to believe that further investigations or accommodations are needed. I spend a lot of time explaining to well-meaning health professionals, therapists, school staff, needs assessors, funding managers, and even friends and family members that yes, the diagnoses are real, and here’s a list of what we’re dealing with every day. (I don’t actually give them a list, but I’m often tempted to!)
My children may not “look” disabled, but they still need accommodations to help keep them safe, live ordinary lives, and give them the tools to access the world, just like other people their age. So how do you navigate the world with kids whose disabilities aren’t as evident, and maybe aren’t taken as seriously, as those more “visible”?
I KEEP THE FOCUS ON MY CHILD
When my youngest was small, I started taking along two A4-sized photos of her to meetings and appointments. One is of her as an infant in a hospital bed, surrounded by intimidating tubes and equipment. One is more recent – I’ve changed it out a few times as she’s grown, but usually it shows her playing, laughing, or scoffing birthday cake (a big deal for a kid who had a feeding tube for the first several years of her life).
I explain to whomever I’m meeting with that I want to start by remembering my child is a real person, not a list of problems, and I put those photos right in the middle of the meeting table, or on the desk, or wherever there’s space. So far, nobody has dared to cover them up with paperwork or set them aside.
Why do I do this? Because everyone I’m dealing with on my child’s behalf has an overloaded caseload and a budget and a bottom line. My kid isn’t a number, or a dollar amount. She’s a small human who has been through a hell of a lot, and is still dealing with more than the “typical” child her age. Looking at her picture helps me when the discussion gets difficult, and it gives me a point of reference when she’s being talked about in the abstract – I can gesture to her and say, “That’s my child you’re talking about.”
I TRY TO KEEP A “PARTNERSHIP” ATTITUDE WITH MY CHILD’S TEAM
You catch more flies with honey than you do with vinegar, right? I’m not saying to suck up to anyone, but I do try to keep in mind that all those health professionals and therapists and teachers etc are on the same team as me, and we’re partners in my children’s care. My son went to a primary school where some of the teachers didn’t believe he had an actual autism diagnosis, despite being shown proof. School was very hard for him, as he masked all day and melted down as soon as he was safely home. So when it was time for him to go to secondary school, I made a great effort to connect with whomever could help my son to settle in – in this case, the SENCO, and the Deputy Principal also got involved. I also made an effort to communicate the words “We’re all a part of my son’s team, and we’re partners in his success.” And
I thank them for being on his team, for being my partners in making his school experience positive. So far his transition to secondary school has been exceptional, a totally different experience to primary school.
Why do I do this? Because I want my son to see the adults in his life as helpers who want him to succeed. If I go in with a negative attitude, I know I’m less likely to be listened to – it’s human nature. And although I get very frustrated with the systems I’m having to deal with, the humans who are trying to work within that system aren’t responsible for making it so painful and stressful.
I TEACH MY CHILDREN TO BE PROUD OF THEMSELVES – AND TO ASK FOR HELP
All bodies are different, all brains are different, and some people’s bodies and brains work in a way that our society isn’t very accommodating of. I’ve spent a great deal of time encouraging my children to be proud of themselves and normalising the differences they each have, because I believe that disability is a normal human variation, not an “other”. We are not “whole” or “broken”, although the systems we exist in really want to pigeonhole us into those categories. All people deserve to be able to access the world, to have normal human experiences. Some humans need solutions that might not yet be in place – and it’s okay, and completely normal, to ask for these solutions.
Why do I do this? Because although I am my children’s first and most vocal advocate, it is critical that they know how to speak up for themselves, and to know that it’s okay to do this. I don’t want them to apologise for needing help. I want them to recognise that even though they may have difficulties that others do not have, their contribution to the world is just as valid as everyone else’s. It’s my job to equip them with the tools they need to thrive, including clear, decisive voices who know what they need and know how to ask for it.
SOLIDARITY!
Raising children with disabilities, whether visible or invisible or a mixture of both, makes you part of a club you probably never imagined yourself joining. I encourage you to join support groups for parents so you can meet others who understand what you’re going through. You deserve support and a voice, too!
For more insights and advice on hidden disability check out the Source Summer ’24 edition – it’s FREE to read online right here.
