This past month, I’ve been all kinds of parent.
Most recently, I’ve been Hospital Parent. I truly hate being Hospital Parent. Watching my child fighting some mysterious bug, sleeping in a chair, wearing the same clothes for days on end, keeping a pleasant face on while doctors use a sing-song voice to ask Billy if it’s OK to give him a needle (Um… no, if I have a choice).
I wonder what is going on in most doctors’ heads. I really do. Are they thinking, (as I hope I would be if I was wearing their shoes) ‘Let’s try and work out why this kid keeps coming here vomiting uncontrollably’? Or perhaps, ‘Maybe this parent might have something to tell me about this sick child’. From their behaviour, it seems like they are thinking, ‘Why is this lady yakking away when it’s my turn to talk?’
I suspect most of the doctors that Billy has seen at this hospital suffer from a professionally acquired condition that renders them unable to read files. Each one comes into the room, holding a file full of previous notes, and promptly asks the same questions as the last. This happens even when the last doctor left the room mere minutes ago. They all make new notes. They all draw different conclusions. They focus on odd details, but not the sort of odd details that might lead to some innovative medical thinking, just ones that give them something to hang their eventual advice on. They all prescribe different treatments. They never, ever speak to each other.
It feels a lot like they diagnose by writing various common childhood conditions on a set of index cards, and then jump into a tube full of air and wave their arms about grabbing wildly for an answer. One day (perhaps when Billy will let me leave the room for a second), I'm going looking for that game show prop in the hospital corridor. I want a turn, even if I'm not a doctor. It's not like it requires actual doctor training to wave your arms about.
Each time I get to play Hospital Parent, I have panic attacks about remembering what who said last time, and what drugs are the bad ones. I get cramps in my face from plastering on an everlasting amenable smile, and ridges in my hands trying not to smack foreheads Three Stooges style.
They are seriously three for three in the wrong diagnosis stakes for Billy. They should have a website.
Before my Hospital Parent role this month, I also got to be Very, Angry Parent.
This month, on an unrelated-to-doctors matter, we lodged a complaint of disability discrimination in the Australian Human Rights Commission. This complaint was made following close to a year of disgusting behaviour levelled at Billy and us as his parents.
Very, Very Angry Parent actually started this year as Articulate and Grateful Parent. Then she was ignored, insulted and blindsided. And that doesn’t even scratch the surface of what was done to Billy. Articulate and Grateful Parent spent a lot of time being confused and hurt.
Much More Rational Co-Parent (Daddy) joined the game, noting in his refreshingly rational way that he was fairly sure children with disabilities have rights. Legal ones. That led neatly on to a spectacular period of outrage, closely followed by an intense period of reading legislation, an expensive period of running our understandings by lawyers and finally to an RSI-inducing period of writing (thanks to a brief re-visit from my Articulate Parent persona).
Legal processes will take a while, but I can reliably report that legislation (while undeniably lacking in any kind of humorous sub-plot-age) makes for very enlightening reading. I would encourage all parents of children with special needs to familiarise themselves with the legislation relevant to protecting the rights of the disabled. I can almost guarantee (if you are new, as I was, to the world of legislation) that you will be surprised by the things that folk who interact with you and your child are getting away with. You may also find your head exploding slightly as it gets itself around the driest language on Earth, but hey.
Back to this month, though… I am pleased to report that Very, Very Angry Parent swiftly gave way to Very, Very Grateful Parent.
I spoke at a regional library to promote The Autism Experience, a book about the international experience of autism parenting. In a room full of other autism parents and grandparents, there was more emotion that you could poke a stick at (not that I would recommend poking sticks at emotions, you never know what might come back at you).
It’s heartening, it’s sobering and it’s inspiring to spend time hearing the stories of other parents on this journey. We heard stories of children being removed from homes because their disabilities were misinterpreted as parental abuse. We heard grandparents offering wisdom and the sort of support and courage that many of us dream about. We heard from a woman whose autistic son is now 28, employed and married with kids. We laughed, we cried, and I waved my arms around a lot. I’m not sure why, and to be honest I didn’t know I was doing it, but there are incriminating photos.
It’s been quite a month, and I’m a little discombobulated at the end of it.
To be honest, this is a month where I’ve found myself staring wistfully at Well Dressed, Latte Sipping Parents. I’d quite like a chance to be Will Billy Play Rugby or Soccer Parent, or even Shall We Go On a Date, Dear Parent.
For now, though, I guess I’ll stick to Hopeful Parent. I feel welcome and safe here.
Valerie’s increasingly random ravings can be found at Jump on the Rollercoaster.