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Affection, Empathy And Autism

5 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Several years ago, my mom volunteered at a “Riding For The Disabled” program. She would help a child with cerebral palsy or Downs Syndrome onto a horse, and then lead the horse around a field. Many of the kids she worked with would be on the edge of meltdown at the beginning of the designated hour, but after five minutes on horseback they would be completely calm.  My mom, always an animal-lover, adored the horses, and she loved working with the children.

There was a little boy with autism in the group, and although my mom didn’t love him any less than the other kids, she did find him a lot more challenging to work with. He was a highly intelligent child with severe communication deficits and some intense behavioural issues. Once settled on his horse, he would jab at the horse’s neck and tug at its mane, and any attempts by my mom to stop him would lead to meltdown. She swore that he deliberately kicked her as he was getting down from the horse after his turn. More than once she returned home with nasty bruises on her arms or legs.

Although this was all in the day before autism became a more direct part of our lives, my mom was sufficiently aware to know that the child’s behaviour was a result of his autism, and not a personal vendetta against either her or the horse. She believed, though, that he was not remotely capable of either affection or empathy. And because people form generalizations based on what they know, for a long time we subscribed to the commonly held belief that people with autism are not able to have meaningful connections with other human beings.

In fact, when we were waiting for my own son’s diagnosis, in our ignorance we pretty much ruled out autism in our own minds.

“He’s so affectionate,” we would say. “It couldn’t possibly be autism.”

Now, of course, we know better, and we are able to gently correct the people we come across who follow the same stereotype.

My son George may not ever be a great talker, but there is nothing wrong with his ability to feel and express love. All I have to do to know this is come home after work. My husband and sons watch for me from the front window, and as soon as they see me walking down our quiet street, my husband opens the door. The kids dash out and race each other to me. And then, with looks of pure joy on their faces, they launch themselves at me so hard that the force of their love knocks me off-balance.

Sometimes, when I am working on my laptop at home, George will  come up to me and somehow arrange his lanky eight-year-old self on my lap. And he will wrap his little arms around my neck and hug me, oh so fiercely. Then there are the times I wake up in the night to find him snuggled up to me, sleeping peacefully with one of his hands curled around a strand of my hair.

Admittedly, there was a time when I worried about what seemed to be a lack of empathy towards his little brother, James. About a year ago, I told a member of George’s therapy team that whenever James was crying, George would laugh hysterically at him. I expressed concern at the lack of empathy and the apparent joy that he got out of his brother’s pain. The therapist smiled at me kindly and said, “He’s a seven-year-old boy. That’s what seven-year-old boys do.”

While most other people have to be educated on the behaviour of special needs kids, my husband and I frequently have to be told how typical kids behave. It’s a little bizarre, but there it is.

The truth is that although George can be a typical pain-in-the-ass brother, just like any other brother, it is clear that he adores James. He is never comfortable with James’ absence, and his demeanour takes on an air of tenderness when James is sick. There are times when one of the boys will go in search of the other one during the night, and I will find them in the morning, curled up together, with George’s arm thrown protectively over James’ shoulders.

When I think about George’s future, there are many things I worry about.

His relationship with his brother is not one of them.

(Photo credit: Kirsten Doyle)

Painting Pictures With Words

30 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 30 – Word Cloud: Make a word cloud or tree with a list of words that come to mind when you think about your blog, health or interests. 

When I read this prompt, the first (OK, the only) thought in my head was, “Eh?” Although I have seen the term “word cloud” bandied about in various places on the Internet, I’ve never paid attention to what it might be. I was visualizing a mind-map kind of thing, and I was wondering how on earth I would come up with something like that. It seemed to be a highly visual concept, which would imply a kind of creativity completely alien to my way of thinking. While I think in pictures, I’m hopeless at actually creating them in any artistic sense. I can only paint pictures out of words.

When I Googled “word cloud” (because, you know, Google knows everything), I discovered that this is exactly what a word cloud is: a picture made out of words. All I had to do to make my picture was import a list of my blog tags into this online tool, select a few options, and click the button. It turned out to be lots of fun: I experimented with different shapes and colours, and finally settled on a picture that represents what my blog is all about.

When it comes down to it, Running For Autism is really about two things. Hope and love.

I think my word cloud is a perfect representation of that.

The First Date That Never Ended

28 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 28 – The first time I…: Write a post about the first time you did something. What is it? What was it like? What did you learn from it?

The first time I took a man home with me on the very first date, I ended up marrying him. Not on the same day, of course – the marrying part took about ten years. But right away, I just knew that this was the man I wanted to be with forever.

The beginning of our romance had a whirlwind quality to it, much like a fairytale romance. The fairytale began the moment we first laid eyes on each other.

It was a balmy afternoon late in the summer, and I was sitting on a rock in the park trying to bring my life into perspective. I was reeling from a recent ugly breakup: the man I had been dating for six months had conveniently neglected to mention that he was married. I was feeling depressed, lonely, and utterly foolish.

Something made me look up, and I saw a man heading towards me. I had never seen him before, but he walking in my direction with purpose, as if he knew me. I wondered if he had mistaken me for someone else. He sat down beside me, gazed at me for a few seconds, and then said, “You have beautiful eyes.”

I looked at this man and saw a whole new future open up before me. We stood up, and hand in hand, we went for a walk through the park.We found ourselves on the patio of a restaurant, eating, drinking wine, and sharing our life stories with each other.

It was perfect, that first date. When I let him come home with me that night, it was simply because neither of us wanted the date to end.

Although almost eleven years have passed since that night – eleven years that have seen many trials and tribulations, many joys, the births of our two beautiful children, tons of parenting adventures and our introduction to the world of special needs parenting,  and eventually, our wedding, neither of us feels that the first date ever really ended.

(Photo credit: Kirsten Doyle)

beauty without limits

21 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 21 – Health madlib poem: Go to http://www.languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.

When I read this prompt, I thought it would be easy. It turned out to be a lot more challenging than I had expected. The Madlib gave me a poem that was beautiful in some parts, nonsensical in others. I had to throw out the first couple of attempts, and I finally got something that I could edit into something I could like. As tough as this exercise was, it was a lot of fun. Everyone should give it a try!

quietly i have never run, softly beyond my heart
my son, your smile is full of love
in your most happy tears are things which surprise me,
on which i cannot speak because they are too deep

your beautiful look profoundly will move me
though i have tried to understand
you see things in ways that are beyond me
exploring your world thoughtfully, intensely

your potential reaches the stars and sun
i move my world for you so that you may fly
i cross the ocean for you to know no limits
your path is different and the road is challenging

nothing gets in the way of your growth
the strength of your shy wonder: my child
i smile at the beauty of your blond hair
your blue eyes bright and sparkling with life

i would run to the ends of the world for you
so the world can be yours
you are amazing: son, brother, friend
your heart is pure, your smile lights up the sky

By Kirsten Doyle with a little help from e.e. cummings

The Final Rose

14 Mar

I am at the top of the hill with the humans. The rain that threatened earlier has held off and the sun has come out. I can feel the warmth touching me lightly. The humans cannot see me, but it’s not their fault. They feel my presence, but they do not realize that I still have a physical form, albeit one that has almost faded completely. If they were looking intently through one of the shafts of sunlight, they might just be able to make me out. But even if they could, they might not realize it was me.

I was a human myself until very recently, although my memory of that time is fading fast. I know that this place, and these people, were somehow important to me, but I do not know what my name was or how I left my human form.

One of the humans is talking while the others listen. Some kind of water is leaking out of their eyes. I detect a great deal of sadness in the group and I somehow feel that it has something to do with me. I wish I could comfort them, but I instinctively know that they must find their comfort from one another.

Now the humans are taking turns to take a gray powdery substance out of a little wooden box and scatter it to the winds. I feel a very strong connection with that substance, as strong as the connection I felt a couple of days ago when I saw the body I used to inhabit. Two of the humans are climbing out onto a ledge holding the box. One of them pours the rest of the gray powder under a tree, and the other reverently places the box beside a rock.

What a strange ritual. My memory has dissipated too much for me to understand it, but even though I cannot be seen, I feel as if I am a central element in what is happening.

The humans are starting to make their way down the hill, some more quickly than others. Unseen, I flit between them and among them, catching snippets of conversation as I go. They are taking care of each other, the humans are, making sure everyone gets down the hill safely. I see a woman taking off her hat and tenderly placing it onto the head of an older woman to shield her from the hot sun. I sense a lot of distance among this group. Some of the humans have come from far, far away. Some of them have not seen each other for a long time. Even though my sense of who they are is so vague, I feel unsurpassable happiness at the sight of them together, leaning on one another, supporting one another.

With me in tow, the humans reach a house, and a jolt of crystal-clear memory pierces me. This was my home when I was a human. I lived here for a long, long time. As I look at the woman who had received the hat coming down the hill, the word “sister” floats into my consciousness, along with a sense that we spent a lot of time together in this house. A sense of loss emanates from all of the humans, but none so much as this woman who was my sister. I hope she will be OK. I think she will. Everyone seems to be rallying around her.

The woman who had given my sister the hat wanders off into the garden. I decide to go with her. She walks slowly, stopping now and then to smell a flower or look around her. She cannot see me, but I feel that she knows I am there. I float along beside her for a while, looking at her face that seems to be lined with sadness and her shoulders that slump under the weight of regret. Regret for what, I don’t know.

I feel that I have to give her something, some kind of comfort, but since I left my human form, I have been unable to communicate with the humans. I drift away, in search of some way to leave a message.

I find myself standing among some rose bushes. All of the flowers on them are dead, and for some reason that makes me very sad. These roses must have meant something to me.

All of a sudden, I know what I have to do.

I embrace one of the dead roses, enveloping every part of it with my being. I infuse it with my energy, and I become one with the flower as the petals start to fill with colour.

When the human comes around the corner moments later, she stops as she sees a single red rose in the rose garden. She approaches me and gently touches one of my petals. She inhales deeply as the sweet scent of the flower fills the air.

She knows it’s me. I can tell from the way she stands looking at me for a long time, and from the way she lovingly says goodbye before she turns and walks away.

For the IndieInk Writing Challenge this week, kgwaite challenged me with “Write a story from the perspective of someone just entering or just about to leave earth (or life).” and I challenged Eric Limer with “Write a story in which social media is the main driving force.”

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.

Stopping To Smell The Roses

30 Aug

Look what I have...

For a number of reasons, I find my morning commute to be far more palatable than the afternoon commute. I rarely wait more than three minutes for a bus to the subway station. Because I board the subway at the end of the line, I always get a seat. The morning commute is faster and generally more pleasant – or at least, less unpleasant.

In the afternoon, I am tired and cranky, and my head is full of work-related stress. I am forced to squeeze myself onto an already jam-packed subway train, and when I emerge at my destination, I have to spend seventeen geological eras waiting for a bus home. Because my chances of getting a seat on either the subway or the bus are less than my chances of being ordained as the Pope, my afternoon commute involves me being on my feet for well over an hour.

By the time I got onto the bus yesterday, I was dying of thirst and my head was pounding. I stood there on the bus, one squashed sardine among many, feeling hot and grumpy. I never regard my commutes as fun, but yesterday, I was even more fed up than usual. I stared at the floor for the entire thirty minute bus ride just to avoid accidentally catching anyone’s eye. That’s how much of a mood I was in.

As the bus pulled up to my stop, I breathed a sigh of relief at having made it home while simultaneously lamenting the fact that my evenings are always filled with chores and running around after people.

Yes, I was feeling pathetic and sorry for myself. I admit it.

But then… something amazing happened.

As I stepped off the bus, I saw my husband and my younger son James sitting on the grass near the bus stop. Thinking I was seeing a mirage, I rubbed my eyes.

James jumped up and yelled, “Mommy!” The sun shone on his curly blond hair and illuminated his entire being. I swear, the kid looked like an angel – a glorious shining light that swept away every ounce of negativity in me. He ran towards me with his hands behind his back. The smile on his face as he reached me could have split his face in two as he pulled his hands from behind his back and thrust a bunch of red roses at me.

I spent a few minutes sitting there on the grass with my husband and my son, basking in the sense of love and belonging, and literally stopping to smell the roses.

I think I will regard my afternoon commutes with a lot less angst from now on. Because look at what I have waiting for me at the other end.

(Photo credit to the author.)