What does Autism mean to us?
Autism means ... being on high alert at all times in all places. Having to know where both the boys are and what they are doing at all times when we are not around them. Wondering if they are safe and being closely watched when I’m not. Turn your back for a second and it means… bathroom flooding, peeing on the floor, formatted hard drives, lost writing, emptied fridges, spilled milk, toys being thrown out of the window, naked boys in the window and possibly even outside, car doors being opened while driving, and perhaps the worst yet, being awoke at 3 a.m. by the RCMP and Military Police because one of your children was found running half naked down the street while you were sleeping … it means five locks on every door, alarms, and leashes.
Autism means ... being limited in the things we can do with my kids. Wondering if we can handle them if we take them for a 10-minute walk. Not being able to just take them to the park, or on a family vacation, or to the museum. It means having to absorb glaring and judgmental stares if there is a meltdown at the grocery store, or the mall, or the bus, or the sidewalk. And rather than people offering a helping hand, you hear... “Why don’t you control your kid.” “Why’s that boy screaming mommy?” “What a bad parent.” It means making sure they are wearing a red T-shirt with the words Autism Summer Camp on the back and the front when we do go out, to try and avoid the condemnation.
Autism means... not being able to get the kid down the street to come and babysit. Having to plan for our own fun weeks in advance, and having to pay someone $12-$15 an hour to do so, if we’re lucky enough to be able to find someone who is available. It means no second honeymoons, no joint vacations, missing social events and martial strain because ... It’s my turn to go out, sleep in, relax, take a vacation.
Autism means... having our house look like 10 kids live here rather than just two… dumped toys, food on the floor, nothing breakable within reach, whole shelves of books being emptied and ripped, three different screens with three different shows all with volume blasted and in the same room, sheets taken off mattresses and mattresses taken off beds… and that’s all before breakfast. There’s just no point in cleaning while they are awake.
Autism means... not being completely sure that our kids will ever have best friends in high school, go to university, have girlfriends, or kids of their own, have a job, or even just be able to go out into the real world unsupervised, or be able to live independently in any way at all. Being resolved that there is a possibility they will be with us for the rest of our lives, but leaving the question of who will be there for the rest of their lives floating in the breeze.
Hmmm, this all seems kind of negative.
Autism also means ... seeing things in a way we would never have looked at them before. Understanding how peculiar our human social conventions are, and how reliant we are on social cues to decipher behaviour and motivation. It makes us more careful in how we speak and behave, so that confusion is minimized. Speak literally, act literally, be honest in behaviour, do not send mixed messages, watch our own hypocrisy.
Autism also means lots of laughing ... at the strange things that these peculiar kids say and do. At how they interpret situations and television shows and Youtube clips. Hearing “home words” at the most inappropriate (and sometimes appropriate) times. Watching people’s reactions to them as they try and figure out what is exactly “wrong” with them. Seeing lots of happy and silly dances, hearing songs with funny lyrics, and if your lucky, a sweet rendition of Bowie’s Life on Mars.
Autism also means being amazed at how complex their little brains must be... watching a child that does not speak write what he wants on the chalkboard and using Google like a pro. Watching a child who can’t tie his shoelaces making intricate patterns with his blocks and scoring higher on spatial intelligence tests than his mother could. Watching a child that does not yet understand pronouns recite full dialogues from Futurama and the Drew Carey Show, being able to tell you who wrote, directed, and produced every single episode of The Simpsons. Hearing a child who can’t seem to remember to wipe his bum and flush when he’s done, be able to tell you what your Facebook status was on July 23 or November 4 or April 15.
Autism also means understanding what unconditional love really is. It means realizing that, if nothing else, your purpose in life is to make sure these kids have the highest quality of life that is within your grasp, and trying to figure out how to help them achieve it. It means that you understand the true meaning of selflessness and sacrifice, patience and frustration, and all those seemingly small developmental steps of being human.
Charlene and David Croft are the parents of two autistic boys, Izaak, age eight, and Gabriel, 10. Charlene works as the administrative secretary in Department of Bioethics in the Faculty of Medicine. David is a stay-at-home dad.
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