It gets quite hard sometimes…
It’s kind of become a subtitle for us special needs parents. We say it with a generally cheery disposition, and many moments when we are grateful or inspired, but really for many of us… it does get quite hard.
Not as hard as it is for our kids, for sure, but hard nonetheless.
I, for one, get mighty sick of driving around trying to find a dog park where the dogs aren’t barking. Billy’s hyperacusis seems to have intensified in 2011 (the year of the smorgasbord of gastrointestinal drugs). It’s got to the point that he is wearing ear protection most of the time, in and out of the house.
Also… There’s a new home being built next to ours. It’s been going on all this year. I’m not sure how many of you are familiar with a building schedule. Before this year, I believed I know what I was talking about because I’d watched a LOT of renovation TV. What they don’t tell you on those shows, is that there’s a guy whose job it is to arrive in his truck at 6.30am and sit idling and listening to dance music until 7am (the legal start time). Then he gets out of his truck and randomly throws bits of chain and brick at metal objects for 20 miuntes or so. Then he goes home. That’s pretty much it until lunchtime when guys turn up to smoke cigarettes at your fence line.
I’d have to say, homeschooling a kid with autism, whose major challenge is an extreme sensitivity to sound, has been interesting while living in a construction zone.
Also… We ended up in the Australian Human Rights Commission this year fighting to salvage Billy’s rights and our reputations. It sucked poop, but we succeeded. The preparation for that event, one whole year in the making was like writing a PhD in something I didn’t ever want to know about but knew was important. Like international potato chip recipes. It cost us close to $20000, and almost all of my mental health.
Since the conclusion of the action, I have noticed how much calmer things are around the house (construction noise notwithstanding). I have had to eat crow (nasty) and admit I had no idea how much of a heinous troll I had become.
Also, I’ve had to acknowledge how long my sentences had become.
What else was hard…? let me see…
It was hard learning to home school, but now it’s the coolest thing ever.
It was hard trying to get to the bottom of Billy’s GI issues, but we’re still trying and after a while examining poo and bile just becomes normal.
It was hard sitting on a plane for 14 hours, but completely awesome when we had the holiday of a lifetime in the USA.
All pathetic first world, whiny white girl kind of hard, really.
We are fine.
We have money (not as much as the doctors and lawyers were given this year, but we have some). We have food (I photographed all the pancakes I ate in the USA, before I ate them, and they were good. Added bonus: now Billy eats pancakes too!). We have a house (with a giant McMansion next to it now).
We are fine.
We were inspired by our travels, and hope to do more. We are hopeful about Billy’s learning journey (he’s writing, he’s reading, he’s still adding 2 and 2 and getting 1 but we’ll get there). We’ve got a billion ideas and projects, and most of all we have each other (miraculously, given my year of grumpy panic).
So really, aside from the barky dogs and the dude in the truck at 7am, we are… fine.
I write these things to remind myself of what is good.
Because this week, my local autism community lost one of our own. An autism parent, a legend, a man who was a true autism warrior. He was a dynamic presence in person and online. He disseminated information. He traded in vision. He fought and fought and fought for his children, for other people’s children, for children in general.
This week, it got too hard.
I don’t know the details. I don’t know why he died. I just know that two children lost their Dad, a woman lost her husband, a family lost their son, brother, uncle… it is devastatingly sad.
I do know that it gets ‘hard’ for us. I hate that it gets hard. But his week, I learned that it’s important to keep that ‘hard’ in perspective.
Hard is being a kid who is driven to tears by the sound of a barking dog. Hard is a person who tries to learn alongside his peers and can’t. Hard is being a dedicated father and community leader accepting he just can’t do it anymore.
I’m not just going to hug my kid harder from now on. I’m going to check in on my friends, my colleagues and my fellow travellers. I’m going to offer to share the load, and ask for help when I need it.
I may also quit my whining a bit. The guy chucking bits of chain around isn’t going to know what hit him.
Valerie’s increasingly random (and more positive) ravings can be found at Jump On The Rollercoaster.