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Butterfly

5 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 5 – Ekphrasis Post: Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus?

When my son was first diagnosed with autism, we enrolled him in a local daycare centre on the advice of his speech therapist. He needed the social aspect of it, she said. He needed the group lunchtimes, the circle times, and all of the other elements of being part of a group of children. We were nervous about letting our sensitive, vulnerable son out of our immediate orbit, particularly since the daycare had never had a child with autism before.

To their eternal credit and our eternal gratitude, the daycare welcomed George with open arms. The director of the centre arranged for all of her staff to be trained in how to work with special needs kids, and George was very happy there.

During the summer months, the kids would be taken to play outside at the end of the day while they were waiting for their parents to pick them up. I would get off the bus from work, pick up my boy, and walk home with him. One day, I picked up his backpack from the darkened daycare classroom as usual, and went out to the playground. I always tried to arrive undetected so I could watch George at play for a few minutes. In typical autistic fashion, he always did his own thing. He played among the other kids, but not with them.

On this particular day, I got to the playground just in time to see a few of the other kids preparing to have a race from one tree to another. George stood apart from the kids, watching them shyly. When the daycare teacher said, “GO!” the kids scampered away from the start line while George stood by on his own.

My heart constricted with unbearable sadness. The whole thing seemed to underscore the isolation of autism, and I felt a sense of unjustness that my child was standing there on his own. With his lanky frame and long legs, he is a natural runner. He might have won that impromptu little race.

Damn autism, I thought. I knew these other kids well enough to know that prior to lining up for the race, they would have tried to encourage George to participate. But being locked in his own world, he would not have known how to. Outwardly, he seemed perfectly happy, but I couldn’t help wondering about that. What was going through his mind as he watched those other kids at play together? Did he feel any sense of isolation? Did he wish he knew how to join in?

I started thinking about sports teams and group activities. Was George ever going to be able to be part of a soccer team or a high school band? Would he travel in a pack of teenage friends or would he sit by himself in the high school cafeteria? Would he be excluded from birthday parties? Or would some group of well-meaning kids include him in their group and look out for him?

How was my child, with his autism and his social communication deficits, going to survive in a social world?

This is a concern that is with me more or less all the time, despite assurances from his teacher that he is starting to tentatively reach out socially at school, that he is getting better and better at participating in social activities, and that he is, in fact, an extremely well-liked member of the student body.

A few days ago I saw something that made my heart soar. Me and my husband were out for a walk with the kids, and we saw the teenage boys down the road shooting hoops in their driveway. Before we could stop him, George ran up to the boys and held out his hands for the ball. The boys good-naturedly obliged, and like a true natural basketball player, George bounced the ball on his knee and then threw it towards the hoop as if he did this every day.

The hoop was too high for George to have any success, and the boys offered to lower it for him. We told them not to worry and we went on our way, but not before the boys had invited George to play basketball with them any time he wanted.

When things like this happen, my vision of the future shifts, as if I’m looking at my son’s life through a kaleidoscope. I start to see possibilities that were previously hidden to me, possibilities that simply may not have been there before George grew and developed into them. Instead of seeing the kid who stood on his own while everyone else had a race, I now see the boy who, just for a few moments, joined other boys in a basketball game.

If I had, just a year ago, seen the picture that inspired this post, I would have thought, “George is probably never going to do that. He’s probably never going to romp around with friends or be invited to take part in impromptu soccer games.”

Now I look at that picture and realize that I am seeing the emergence of George as a social being. Maybe he’ll always be shy, and it is very likely that he will always need to be surrounded by people who will look out for him.

But his personality, his character, the very essence of who he is – that is emerging bright and beautiful, like a butterfly coming out of a cocoon.

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Remembering Dad – Seven Years On

6 Dec

I was watching The Apprentice when I got the news that my Dad had died. I should have known as soon as I looked on the phone display that something was wrong. Although it was a reasonable enough hour in my own time zone, it was three in the morning in South Africa. Be that as it may, when I answered the phone, I had no idea that I had lost a parent. Even though Dad had been gravely ill in hospital, the news came as a terrible shock.

The story of Dad’s illness and death is all too common these days. He had been sick on and off for a couple of years, but despite numerous visits to the doctor, cancer had only been diagnosed six weeks prior to his death. By then, the tumour in his bladder was too big to remove, and Dad’s only shot at survival was aggressive chemotherapy followed by surgical removal of the entire bladder. He survived the chemotherapy – only just – and he made it through the twelve-hour operation. In the end, though, his body was just too weak to survive all that it had been put through, and a few days after the surgery, he winged his way from this world to the next.

It was December 6th, 2004. Seven years ago today.

When we lose someone close to us, we are supposed to go through the stages of grief. Denial. Anger. Bargaining. Depression. Acceptance.

I had heard of this theory, of course, but I had never really found it to be of any use. It suggests that these stages happen sequentially, that you cannot ever get to acceptance until you have passed through the other four stages. According to this theory, once you are in the Acceptance stage, you’re done with your grieving.

The reality is that grieving is such a personal, individual process, and everyone does it differently. Denial has definitely been a big part of my own experience, and although I am mostly over that, I still have moments of thinking, “Gone??? What do you mean, gone? That’s impossible!” By contrast, I have not spent a single moment in the Bargaining phase, although that could still be coming.

What about this one, though? Guilt. Where does that fit in with this whole stages of grieving thing? I’m sure I’m not the only one to experience it with the death of a loved one. What could I have done? Why didn’t I travel home to see him before he died? Why am I remembering every argument we ever had, when I should be focusing on the many good times we shared?

The stage of grief that I have the biggest problem with, though, is acceptance. This is supposed to be the pinnacle, the reward we can all look forward to if we can just get through all of the other stuff that comes before it. But is it really truly attainable? Yes, we can get to a point where we can lead our lives without the person we have lost, but can we ever fully accept it? Can my Mom, who was married to Dad for forty years, be reasonably expected to completely reconcile herself with the fact that her husband – her best friend, the man she lived with, travelled with, and raised children with – is no longer by her side?

Here’s the bigger question: what does acceptance really mean? It seems to me that once someone reaches that magical stage, they are expected to be OK. They are not allowed to be sad anymore because their grieving is done. And honestly, there is a part of me that doesn’t really want to reach that stage. Because doesn’t acceptance imply that you are OK with the person not being around anymore? And isn’t that a form of betrayal to them? Like you’re prepared to finally let go of what little you have left of them?

To some people, the stages of grief can be a useful roadmap, a guide to let them know what’s coming next. For me, it’s frustrating. I loop back and forth between the stages too much, and I’m ambivalent about the prize. I mean, how likely am I to strive for acceptance if it’s not what I really want?

So today, seven years after Dad left us, I don’t really know where I am with this whole grieving process.

What I do know is that Dad was many things to many people. He was a great marathoner in his youth and he fuelled my own love of running. He was an astute businessman who gave me countless tidbits of financial advice and did my taxes every year in exchange for a bag of sugar-coated almonds. He was both reader and storyteller, dramatist and comedian. He had an appreciation for the simple pleasures in life, and would take his time washing the dishes just so he could watch the sunset through the kitchen window while he was doing it. He adored his dogs and cats, and spent many Sundays polishing his car surrounded by family pets. Along with my Mom, he gave me and my brother the opportunity to grow up witnessing what a loving, supportive partnership should look like. To me and my brother, he was Dad – the best one we could have asked for. And during the brief period of time for which he shared a planet with my son George, he was the most loving, doting Granddad any kid could wish for.

I don’t know what happens to us when we die. I choose to believe that Dad is around somewhere, watching fondly over his grandsons, cheering me on when I run races, clicking his tongue impatiently when I make stupid decisions, and having a good old giggle when I get caught in the rain and wind up with a bad hair day.

Rest in peace, Dad. Someday, I’ll see you on the other side.

Embracing Autism

1 Nov

If there was a cure for autism, would you use it for your child?

This question was posed to me recently by a non-autism parent, and it really made me think. Before I was an autism mom – indeed, before I was any kind of mom – my immediate instinct would have been to say “Yes! Absolutely! What kind of parent would choose for their child to have a disability?”

Now that I can speak with the voice of experience, my answer to that question is very different. There are some aspects of autism that I would get rid of in a heartbeat. When my son, now eight, has his meltdowns, the expression of anguish in his eyes breaks my heart. If I could wave a magic wand, I would give him the ability to communicate the pain that he feels during those outbursts. I would make the changes of seasons easier for him, I would make Christmas less overwhelming, and I would give him the skills to play with his little brother.

On the other hand, there are things that I would not change in a million years. Someone once told me that my son is very smart “in spite of his autism.” I gently corrected this person by telling her that my son is very smart because of his autism. His mind works in a very unique way. Thanks to his out-of-the-box thinking, this kid can problem-solve rings around the rest of us. He can do multiplication in his head, and this is something that no-one has ever taught him. He just figured it out himself. He sees patterns that are lost on everyone around him: once, when he was putting coloured pegs into a board, I literally had to squint at the board from a number of angles before the pattern he was creating suddenly jumped out at me. If he was given a cure for autism, that incredible way of thinking would disappear.

In the eyes of society, my son has a disability. The education system regards him as having special needs, autism is classified by the medical community as a disability, and the government has granted us a disability tax credit for him. And rightly so: my son definitely needs special accommodations. There is no way he can function in a neurotypical world without assistance. Although I believe he will be capable of great things as an adult, I see the possibility of him being unable to live completely independently. But as much as there are things that he cannot do as well as other people, there are things that he does better. He may frequently take the scenic route from a problem to the solution, but his route can cover a lot more ground, solve problems that no-one else even knew existed, and frankly, the scenic route often has a better view than the highway.

When this amazing boy with his sweet, sweet disposition curls up on the couch with me, wraps his little arms around me, and allows me the privilege of being in his world with him, I feel a love for him that is too big to put into words.

Would I ever want my son to be “cured” of autism? No. Because the challenges just make us stronger, and his autism is a part of the beautiful person he is.