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Autism Acceptance Does Not Mean Entitlement

 

Since my son George was diagnosed with autism five years ago, I have learned – to some extent, at least – how to field the rude comments of strangers and the blatant stares of their children. Through my writing and through daily interactions, I do what I can to educate and inform, to discourage people from discriminating against my child on the grounds that he is “different”. I strive for awareness and acceptance, and I work towards a world in which everyone accepts George for the wonderful, albeit a bit quirky, person that he is.

In this quest I am part of a not-so-secret society of autism parents who have a common goal. We post and share autism awareness messages on our Facebook walls. We circulate articles about what to say and what not to say to an autism parent, and we brainstorm ways to make things easier for our children. In all of this, our message to the world is this: Accept our children, include  them to the extent to which they are capable, and discover what wonderful people they are.

As passionate as I am about this cause, I do believe that if we’re not careful, we can take it too far. We can make the mistake of expecting the world to bend to our children no matter what, without making any effort to equip our children to live in the world.

During my afternoon commute from work, I regularly encounter a blind woman who has a service dog. When we get off the subway, we go to the same bus bay, although she doesn’t take the same bus as me. She waits patiently for her bus, politely asking people to let her know when her bus has arrived. She is so nice and charming, and people practically climb out of their own skins in their eagerness to assist her.

In contrast, there is a man during my morning commute on the subway who is confined to a wheelchair. He is rude and aggressive. He seems to be completely OK with literally pushing people out of the way in his efforts to be first onto the train when it arrives, and he acts as if he can behave as badly as he likes because he is disabled. People are not that inclined to help him and feed his sense of entitlement.

When George has meltdowns in public, there is often very little I can do about it, but that doesn’t stop me from trying. As I try to engage strategies to help him, I offer explanations of autism to anyone who might be nearby. Am I obligated to explain my son’s behaviour? Maybe not. But I do recognize that my son’s behaviour at those times can be disruptive and a little frightening to the people around us who cannot be expected to magically know that he has a invisible disability.

In the vast majority of cases, my explanations are met with smiles and nods of understanding. On the odd occasion, I have even received offers of help. Yes, there are always the people who tell me that I shouldn’t have my child out in public if he cannot control himself, or that my bad parenting is to blame, but there’s very little one can do about people with that kind of attitude.

The point is that the road to acceptance is a two-way street, with some effort required from both sides. It shouldn’t be all up to other people, who in many cases may not know how they’re supposed to act around someone with autism. The individual with autism (depending on the level of functioning) and his or her family should do their part to make things easier too.

When I was on the subway to work one morning, a girl of eleven or twelve boarded the train with her parents. With the sense that autism parents develop as an instinct, I knew that this girl had autism. She clearly had communication deficits, but she appeared to have a reasonable level of functioning in other ways. Since this was during the morning commute, there was standing room only on the train.

The girl lost it. Over and over, with increasing intensity, she screamed, “I want to sit down.”

Bear in mind that although I knew the girl had autism, in all likelihood the other passengers didn’t. Why would they? Autism is not a visible disability. To most of the people on the train, that girl was simply a brat acting out. Her parents did not offer any explanations, nor did they make any effort to stop the screaming or help their daughter.

As the screaming escalated to an ear-splitting “I! WANT! TO! SIT! DOWN!” a woman close to where I was standing gave up her seat to the girl, who instantly calmed down. No-one thanked the woman who had given up her seat: not the girl, and not her parents. The woman, quite justifiably, was annoyed. She said something to the girl’s mother about manners, and the girl’s mother made some obscure comeback about a commuter’s responsibility to give up their seat to people with disabilities. The woman shook her head in bafflement and moved towards the opposite end of the carriage.

I didn’t mind that the girl had started melting down over the lack of seats. People with autism do not have control over what triggers them.

However, I do mind that her parents expected everyone else to accommodate her without offering an explanation, and I mind even more that they allowed the situation to escalate without trying to help her. I believe that in their lack of action, they did a great disservice to the autism community.

The next time any of those commuters encounters a child having a meltdown in a public place, how understanding are they likely to be? Does this kind of thing not reinforce all of the negative stereotypes about autism that we are trying so hard to beat?

We (autism parents) spend a lot of time talking about how we wish people would accept our kids. But we cannot really expect someone to accept something when they don’t even realize there’s something to accept.

Is it acceptable for people to be rude and discriminatory towards individuals with autism? Absolutely not. That doesn’t mean, however, that everyone has an automatic obligation to cater to us and our children, no matter what, without a little bit of effort from our side.

We have to meet the world halfway on this one. Working with society, not against it, is ultimately what will build awareness, acceptance and inclusion.

(Photo credit: Kirsten Doyle)

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Fleeting Moments Of Babyhood

On my way home from work a couple of days ago, I saw a young woman nursing her baby on the subway. The baby’s father had his arm placed protectively over the mother’s shoulders, and his body was angled in a way that provided mom and baby with some privacy. Both parents were looking at their baby with absolute love and tenderness.

As I sat gazing at this perfect picture, the mom looked up and met my eye. She gave me a beatific smile, and then turned her attention back to her baby.

I went back to reading my book. I felt that I had been given the privilege of witnessing a beautiful family moment, but I did not want to outstay my welcome. I sensed that continuing to watch them would have been intrusive.

I was not able to concentrate on my book, though. Instead, I found myself daydreaming about my first few months of motherhood, almost eight years ago.

When my older son was a baby, I felt that same sense of peace and contentment that I saw in that family on the subway. There were baby blues, to be sure, and I went through the same sleep deprivation common to most new parents. But the baby blues passed, and behind the haze of exhaustion I was happy.

Thanks to Canadian maternity leave provisions, I got to enjoy a full year at home with my baby. Back then, my husband and I each had our own car, so while my husband was off at work, I would load the baby into my car and we’d go out.

Sometimes we would go to the park, and I’d spread out a blanket for us. I would nurse the baby if he was hungry, and then I would drink my coffee and talk to him about the clouds and the trees and the birds.

Other times we would go to the bookstore to browse. I would pick out a book from the bargain shelves and pay for it, and then we would go to the coffee shop. I would take the baby out of his stroller, and he would doze off in my embrace while I lazily read my book.

We went on excursions to the mall, to stores, and to mom-and-baby groups. From time to time, I would strap my son into the baby-jogger and we would go running together. We would walk to the coffee shop down the road, I would buy myself lunch and nurse the baby, and then we would take a long, circuitous route back home.

I loved those early days of parenting. They were exhausting yet idyllic. I knew absolutely nothing about being a mother, but I was happy to find my way with this beautiful boy in my arms.

When my younger son came along, everything was so different. Financial pressure had forced us to give up one of the cars, so while my husband was working, I was stuck at home with both kids. I felt a sense of entrapment that I only started to get some relief from when a friend very generously sent me a double stroller that she no longer needed. Even though it was the middle of winter, I would put the boys in the stroller and go trudging through the snow, so desperate was I to get out.

At around this time, we were starting to get the sense that there was something wrong with my older son, and I felt crushed under the worry that came with that. And to top it all off, I struggled with post-partum depression that was undiagnosed for almost a year.

When my firstborn was a baby I felt bliss. With my secondborn, I felt desperation. And to this day, I feel intense guilt over the fact that I did not do all of the babyhood things with my younger son that I had so enjoyed with my older son. I am doing my best to provide them with childhood years filled with joy, and judging by their smiles, laughter and hugs, I am doing OK in that department. But I cannot help feeling as if I missed out on a part of my younger child’s life that can never be recaptured.

Going back to the family on the subway that started off this whole train of thought, I wish them all of the joy in the world. I hope they savour that period of babyhood that is all too fleeting.

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Early Mornings, Falling Glass, Giving Blood

This morning I voluntarily woke up at 4:45 a.m. so I could go for a run. Other Moms who run will understand my dilemma: a hectic lifestyle of juggling work, kids, and other family responsibilities means having choose between sleeping and running. Other runners – Mom or not – will understand that running and sleeping are equally necessary for my physical and emotional wellbeing.

Don’t get me wrong, I’m not a complete masochist. I use some very creative thinking in order to try getting my runs in without having to get up in the middle of the night (or what feels like the middle of the night). Today, however, I had no choice. If I was going to (a) run, (b) get in the distance I was aiming for, and (c) be on time for work, I had to be on the road by 5:00 a.m. Which meant getting up at 4:45.

After all, I think it is reasonable to not want to run in the thunderstorms that were being predicted for this afternoon. And since my desperate attempts to master the art of being in two places at once have come to nought, I could not run at lunchtime and donate blood at the same time.

I had a lovely, lovely run. 7.5km in nice warm weather with just a little bit of wind.

Not a bad way to start a Monday morning.

After my run, I took care to have a nutritious breakfast. During the course of the morning I drank a V8 vegetable juice and ate a banana – neither of which I actually like, but in preparation for donating blood, I needed to make sure my iron levels were up and that I had enough nutrients in me to avoid passing out.

When it was time to go, I took the elevator to the ground floor, intending to get on the subway. As I exited the building, though, I was accosted by a big policeman who was yelling, “Get back inside! Get back inside!” Ridiculously, I offered a lame argument to the policeman.

“But I have to go and donate blood,” I said.

The policeman looked at me as if I had broccoli spouting from my forehead, and said, “Well, you’ll be bleeding a lot sooner if more glass falls off the building.”

Okayyyy. Turns out that a pane of glass had come out of the top floor of the office tower and crashed onto the street about sixteen storeys down.

I took the scenic (read: long) route to the subway and took the train for two stops. Then I got off the train and wandered around like a lost fart until I found the blood donor clinic. I checked in, and as the nice blood clinic man was giving me my paperwork, the shoulder strap on my purse broke and half of the contents of my purse fell onto the ground.

This was turning into quite an adventure.

My medical checks and interview went without a hitch. My iron level was fine. Vital signs were good. No bruises or lesions on my arms. I haven’t had sex with a cocaine addict or been a prostitute.

The donating part itself went well too. The nurse easily found a fat, pulsing vein to use and the needle went in flawlessly. Less than ten minutes later, a unit of my blood was in the bag in memory of Capt. Snuggles, I had a Band-Aid on my arm and I was sitting at a table getting free juice and cookies.

You can only count a day as GOOD when you’re able to get in a good workout and do a good deed.

(Photo credit: http://www.flickr.com/photos/prashu/3359028784/)

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Open Letter To A Fellow Passenger On The Toronto Transit Commission

Dear fellow T.T.C. passenger,

This morning I had the commute from hell, along with many other T.T.C. passengers. My bus ride to the subway station, which usually takes twenty minutes on a bad day, took an hour and a half. I got to work 45 minutes late, and from the sounds of your constant loud complaining that everyone on the bus had to listen to for an hour, you were late too.

Yes, I know it is frustrating. Yes, I know that the T.T.C. has its share of problems, like aging signal equipment and less than ideal public announcement systems. But it seems unfair to blame the bus driver for a traffic accident that happened while he was way over on the other end of the city picking you up so he could listen to your insults. We were ALL uncomfortable. We were ALL late, and we were ALL frustrated. But you know, sometimes crap just happens and we have to live with it.

The bus driver was just doing his job, and he was doing it well. He remained cheerful and polite despite the fact that you referred to him as an asshole who was making you late. He was trying to keep all of us informed as to what was going on, but he cannot pass on information that he doesn’t have. Give the poor guy a break. Imagine how frustrated he must have felt, knowing that he would be letting us off at the subway station and then driving back through the traffic mess.

I had the misfortune to end up in the same section of the subway train as you. This time I had to listen to you bitch and moan about the fact that the train was so crowded. Just further evidence, in your eyes, of the abhorrent state of the T.T.C. You got a decent seat, so what were you complaining about? Other people had to stand, having just stood for well over an hour in the bus. I didn’t hear them throwing their toys out of the cot.

While we’re on the subject of your seat, I feel obligated to point out that the elderly gentleman you gave dirty looks to had more right than your bag to sit in the seat beside you. Other people put their bags on the floor in front of them. What’s wrong with you doing the same? It’s not like your bag is better than anyone else’s.

Thank God you got off the train two stops before I did. Dealing with you while I was transferring from one crowded subway line to the other might have been a bit much.

I found you, fellow T.T.C. passenger, to be rude, insulting, and selfish. But because I am a forgiving type who gives people the benefit of the doubt (or maybe I’m just a pushover), I am open to the possibility that you are generally a nice person who is going through a really bad time.

And I wish you a lovely day.

Yours faithfully,
The woman you pushed past so roughly that she spilled coffee all over her coat

(Photo credit: http://www.flickr.com/photos/stevenharris/3986106972)

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15 Random Facts About Me

Today is one of those days where I don’t really have a topic in mind, so I will steal an idea from a Facebook note I was tagged in, and tell you fifteen facts about myself.

  1. When I was in 5th Grade, my teacher hated me because I was left-handed, and she once kept me after school trying to force me to use scissors with my right hand.
  2. I am adopted.  I was lucky enough to wind up with fantastic parents, and about 15 years ago I got in touch with both of my biological parents.
  3. Based on behaviours in George that I recognize in myself, my developmental history as a child, and some difficulties I experience to this day, I am pretty sure I am on the autism spectrum – an undiagnosed Aspie.
  4. 16 or 17 years ago, I accidentally disturbed a bees’ nest and got stung 67 times.  I am now terrified of bees.
  5. I am allergic to mangoes, which is a pity because I actually like them very much.
  6. At the ripe old age of 41, I have finally realized that I would actually like to be a full-time writer.
  7. I have this weird recurring dream in which I am chased by a giant teapot.  Seriously.  You can’t make this shit up.
  8. Despite my constant whining about my commute, I kind of like my daily subway rides.  It is the only time I get to sit down and read a book.
  9. I bitterly regret not flying to South Africa to see my Dad before he died six years ago.
  10. Every year at Roll-Up-The-Rim time, I drink way too much coffee.  I always think that by the law of averages, if I buy enough coffees, sooner or later I will win the car.  In ten years of trying, I’ve never won anything more ambitious than a donut, but I am an eternal optimist so I will keep trying.
  11. My first pregnancy ended in a loss early in the second trimester.  I always think about that lost life, and how if that pregnancy had worked out, I would not have George today.
  12. I buy lottery tickets every week, because someone wins the jackpot – why shouldn’t it be me?  A few weeks ago, I won $120.
  13. I hate olives and eggplant.
  14. There is only one brand of shoes that I will run in: New Balance.  When I’ve tried other brands I’ve always regretted it.
  15. I think Barney the Dinosaur is the most annoying children’s TV show ever made, followed closely by Max and Ruby.