Now we are six...teen
Adozen years ago, after writing a letter to the editor about my son Angus having Autism, and the fundraise at movie event we organized at the movie theatre at Richmond Regional High School, wheels began turning that developed into this column, Dishpan Hands, that has been running in The Record for a decade as of this past summer.
In that light, I owe this column to my son, Angus, who is my eldest of two lads, and often featured over the years as we have navigated these choppy waters that is life with Autism. This week, on January first, he turned sixteen years of age, and as I have done on several occasions over the years, I'm dedicating this column to him, a letter that will hopefully make him just a little more present in a world that has a very distinct tendency of pushing people who don't fit easily within white picket fences off to the back woods.
Dear Angus,
You have been terribly sick all week. One of the big challenges of life with you, and our very, very, very limited means of communication, is that when you're not well it's a pretty stressful guessing game of what is up. I'm sure it's as stressful for you as it is for us.
We had been preparing you for your birthday - I showed you photos of cakes and candles, even found one with those big wax candle numbers featuring a '16' so we could count and talk about how that is how old you were turning.
We didn't get to have a cake and candles yet - we've put it off until this horrible cold you've developed moves on you're on day 6 of fever and coughing, and tomorrow will likely mean a visit to the walk-in clinic if we can get a spot, just to make sure there isn't something in those lungs of yours that requires a little more special care.
When you get sick we have to be very careful. We are so lucky that the folks at Uniprix in Knowlton know you so well. They always take great care to make sure that if we have to treat you for something, that what you are taking won't interact badly with the other medication you take on a daily basis.
We even have to be careful about other things, even juice isn't something you're supposed to have too much of, so we always look into the more natural remedies too with care, because even those can be bad for you at times.
Over the holidays I joked with your cousin Maverick that for your birthday you were going to get your license to drive. The two of you are the same age for twenty-four days every year and then he adds another candle to his cake. I teased that you would be a better driver than some of his friends.
I joke about it, but I really do wish you could experience some of those things and this is one of those big things that you probably never will. Since our communication is so limited, even something like learning to drive a lawn tractor could be potentially dangerous. You will, like some other people, for other reasons, be a passenger.
When big milestones like this come along, I always think about how you could possibly be included. Maybe, when Maverick gets his full license to drive on his own, he can take you for a drive, so at least you can be just the two of you - two older teenagers, growing up and independent. I'll give him money so that both of you can have Mcdonald's or something.
I can sense sometimes, in spite of your love for us, that you do get a little sick and tired of having your parents around all of the time. I can tell when you're impressed with having some special independence.
With sixteen come other things for us, that come for all families with special needs. There is this strange thing looming on the horizon. I liken it to Ray Bradbury's book Something Wicked This Way Comes - that I've been reading with your younger brother (who's now only a half inch shorter than you - he may be the 'big' brother soon enough). In this book, a strange carnival arrives in the middle of the night.
Throughout the book the two main characters, two boys (turning thirteen like your brother), named Jim and Will, experience it differently. I feel like that book really defined what coming-of-age is like - sometimes friends and family grow apart from one another, sometimes together, it's usually a little dark and scary somewhere there. In our case, that strange carnival is what the next years will be - and what gearing up for adulthood will mean. It took me over fourteen years to get your life on track, and I had to do it in a way that took us out of the traditional systems - because while I kept trying to keep us swimming in the mainstream, even when the services you were receiving were broken, we drowned in them. It is a good thing we were both meant to be mer-people, because now we swim and breathe differently. We go underwater. You're the original Aquaman, that came out in theatres just before your birthday this year. We all know the oceans are polluted though, and that goes for where we are. It's not all singing lobsters.
This year there was a new reason for me to keep these new gills healthy and to continue to explore strange waters and dark carnivals. I learned the story of Sarah Kurchak. Sarah learned via a story that CNN ran in March of 2017 that
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the average lifespan of a person living with Autism in the USA is thirty-six years of age. Sarah turned thirty-six in February. She wrote a piece for www.vox.com entitled 'I'm Autistic. I just turned 36 - the average age when people like me die.'
She wrote: 'At some point between that moment and now, I made a pair of promises to myself: 1. I had to make it to 36. 2. Once I did, I needed to do something to mark this morbid accomplishment — perhaps writing something to help the next generation of autists approach their own birthdays just a little easier.'
She writes about the exhaustion of living with Autism - something you and I both know well. When I discovered Sarah's story, she was speaking with an interviewer on the radio. Ripples of electricity circuited through my body. I knew then more than ever that what I needed to do was to truly focus on the actual challenges of what that number means, and that the reasons involve things like death by injury, wandering off, drowning, seizures and even, sadly, some caregivers who feel unable to look after a special needs' person, and opt to end their own child's life.
This is heavy. I know. I also know that we all know that you will probably never really be able to read these letters that I have written to you, in this open forum, raw, for our community and beyond to take in and hopefully do something with.
Sixteen will be heavy for some of your neurotypical friends, for all kinds of reasons, because growing up (and beyond) isn't easy. Life isn't really terribly easy, but the important part is learning to look after ourselves and one another - and to stop saying things like, 'It is what it is.' Because it's only that until it isn't. don't we?
So here we are - and what I see in the distance is this strange, dark, underwater carnival. What I know in that is that it will soon be time to pitch our own tent, because we have two years until major funds run out, and five until life as we have come to appreciate so much at Massey-vanier High School will end too.
We will start by finding a tent that is as stable for us as possible, one that we can manage so we are not at the mercy of systems and funding again. One where you can hopefully even have some kind of career, and where, with any luck, I will too.
Now we are six .... teen. You just got out of a warm bath to loosen up that cough. You're waiting for spaghetti that's warming up on the stove. You're a remarkable person, with a great sense of humour, who has talent and flaws just like other sixteenyear-olds, and who is deserving of a life that is as healthy and happy as it can be.
That is my one resolution for both you and your brother, who does not have Autism, but is a gullible little monkey like many kids his age, it is to do my best to keep you safe and that in these next twenty years I will be able to do something to change that number, and that thirty-six will just be another birthday like the rest, one to celebrate you, not one to fear.
I love you more than I could ever, ever hope to write, more than you could ever read even if you could, and more than some could possibly believe or understand.
Happy Birthday Angus. The future is a dark underwater carnival - so let's learn how to live there. And we know all about that,
Love always, Mum xo