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A Letter To Autism

April 6, 2013 By

2013-02-09 11.05.55

Dear Autism,

Although we were only formally introduced to one another six years ago, we have really known each other for longer than that. I didn’t realize it at the time, but you came into my life 9 years, 7 months and 4 days ago, on the day of my son’s birth.

You were there throughout his infancy, staying up with me during the late-night feedings and diaper changes, looking over my shoulder as I tried to figure out what was making him cry, and watching as I tentatively navigated those uncertain months of new motherhood.

You were there during his toddler years, and it was then that you really started to make your presence more obvious. You guided those tiny little hands of his as he repeatedly spun the wheels of toy cars without actually playing with them. You got him interested in that piece of string that he spent hours and hours examining. You choked his language skills and made sure he wouldn’t be interested in playing with other kids.

I didn’t know your name yet, but I knew you were there. I felt as if you wanted my beautiful boy all to yourself. You didn’t even want to share him with me. I hated you and felt threatened by you.

On the day the doctor told me your name, I cried. The doctor said that you would have control of my son forever, that he would never be able to achieve anything because of you. Hearing that broke my heart.

When I was done crying, I made a decision. I was not going to let you win. I was not going to let you ruin my son’s chances to have the best life possible. I knew that I would not be able to get rid of you, though. So we were going to have to learn to live with each other, you and I. Maybe we would even have to become friends.

And so, instead of trying to beat you down, I tried to find ways to work with you. You weren’t going to let my son learn in the ways that other kids learn, so I found people who would teach him in ways that you would like. You weren’t going to make it easy for him to talk, so I had to start at grass-roots level and show him ways to communicate in your presence, in ways that you would allow. You didn’t want him to enjoy playing with other kids his age, so me and my family became his playmates, teaching him how to play without letting you take the fun out of it.

As we have gone through all of this together, you and I, I have made the most astounding discovery. There are actually things about you that I like. You have accelerated the development of whatever part of my son’s brain is responsible for math. In blocking those quote-unquote “normal” ways of thinking, you have opened up his mind to thinking in ways that are unique and incredible. You have given him the ability to single-mindedly focus on a task until it is done just the way he wants it. Because of you, my son is determined and hard-working, and does not believe in giving up.

Best of all, you have touched my beautiful child with his own special brand of magic. He has an innocence and pureness of spirit that makes him light up the space around him. Because you make him think in such a unique way, he has a quirky sense of humour that brightens up the lives of those who are near him. He has a fierce love for me, for his dad, and for his little brother.

You have given me a special gift as well. You have taught me how to appreciate the little things. Every word, every sentence, every little baby-step of progress is a cause for celebration. I have learned how to be happy in the most adverse circumstances.

I cannot go far enough to say that I like you, Autism. But without a doubt, there are things that I respect about you, and while you have made my life so hard and heartbreaking in many ways, you have enriched it in other ways.

I have come to terms with the fact that you will always be there, and I think by now you know that I’m not going anywhere, and I am not letting you get the better of my son. I like to think that for the most part, we can peacefully coexist. There are undoubtedly days when you win, and there always will be.

But you will never stop my son, because he is unstoppable, and because he has a family who will fight for him tooth and nail, every step of the way.

Yours truly,

George’s Warrior Mom

(Photo credit: Kirsten Doyle)

Filed Under: autism, Health Activist Writers Month Challenge, parenting Tagged With: , , , , , , , , , , , ,
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Water Play As A Path To Independence

July 7, 2012 By

 

When my son George was a baby, washing his hair was no big deal, simply because there was hardly any hair to wash. In fact, he was born with so little hair that when my best friend asked what colour it was, I had to admit that I didn’t know. There wasn’t enough to be able to tell. Hairwashing was therefore a simple matter. There was none of the “lather, rinse, repeat” business – all I had to do was wipe my baby’s head with a washcloth and we were done.

It all changed overnight when George was about eleven months old. After spending almost all of the first year of his life as bald as a cue ball, he sprouted a full head of hair one night. It was really weird waking up to this almost-toddler who was suddenly blond-haired. It was even weirder having to figure out, after almost a year of parenting, how to properly wash a child’s hair.

George resisted the hair-washing from the start. Whenever I tried to tell people about his protesting, they brushed it off, saying, “Most boys hate having their hair washed.”

That may  have been true, but from my own observations, most boys did not go into a state of all-out panic. No matter how gentle and soothing I was, George went wide-eyed with fear and screamed the roof down.

When we got George’s autism diagnosis, it all made sense. Kids with autism can have some intense sensory issues. Knowing about the autism did not solve the problem – we still had to wash this child’s hair in spite of his aversion to it – but we could at least make accommodations. We looked up social stories and created visual schedules. We established hair-washing routines to enable George to know exactly what was going to happen in what sequence. We used rewards and reinforcements, and we tried to work within the framework of his sensory difficulties.

When George was in his IBI program, his therapy team introduced a hair desensitization program. Every day, he was encouraged to brush his own hair and spray in some leave-in conditioner. It took a while for him to actually do it, but with a bit of time and patience on the part of the therapists, it became a part of his routine. When he left the IBI program, the desensitization continued at school, and now, our respite worker is incorporating it at home during the summer break.

George is still resistant to having his hair washed, but the desensitization is getting him closer to a point of tolerance. The key, we are realizing, is control. He won’t voluntarily allow someone else to put shampoo or any other gunk in his hair, but under the right circumstances, he will do it himself.

This was highlighted to us recently when we took the kids to play in a water play park. George is not actually afraid of water, but he does tend to be hesitant around it when he’s in new surroundings. At the water play park, he spends the first ten minutes or so on the sidelines, watching the sprinklers intently. The sprinklers do different things, and they turn and off at different times. When George knows what the sequence is, he ventures into the play area and allows himself to get wet.

He’s always been very careful to avoid getting water onto his head.

Until now.

About a month ago, we noticed that George was running right through the sprinklers instead of around them. He was running too fast for his hair to get more than a few drops of water on it, but still. It was more than he had ever done.

Imagine our absolute astonishment when, ten minutes later, he walked straight up to a sprinkler and put his head directly into the stream of water, allowing his hair to get soaked.

This is an encouraging development indeed. It brings George one step closer to the independence we are trying, in small increments, to guide him towards. Maybe I will never be able to wash his hair without him protesting. But maybe he is moving closer to a point where he will do it himself. Maybe all he needs is the ability to predict what the water is going to do, and the best way for him to predict it is if he is in control of it.

This idea applies to just about every area of my child’s life. As parents, our instinct is to do everything for our kids because, you know, they’re our kids. This is especially true of our kids with special needs, who are are so much more vulnerable. But we can serve them far better by equipping them with the tools – be it encouragement, knowledge, or actual tools – to do things for themselves.

(Photo credit: Kirsten Doyle)

Filed Under: Uncategorized Tagged With: , , , , ,
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Beautiful Disaster: A Love Story

March 8, 2012 By

When Kathy first met Howard, she didn’t like him very much. She had met him on the Internet, and they had always gotten along great during their online chats. But the second she met him in person, she knew that the chemistry was not right. In spite of herself, she said yes when he asked her to be his girlfriend the third time they went out.

The attraction isn’t always there in the beginning, she rationalized.

The truth was that she was lonely. She had moved into the city six months previously and she didn’t know anyone. She had yet to make any real friends and she was desperate for a human connection. She knew this relationship wouldn’t last, but she thought it would keep away the loneliness for a while.

Kathy’s quest to avoid loneliness would turn out to be very costly. Howard slowly sucked her into a web of manipulation and control. He alienated her from the small amount of social contact that she had, took her for weekends away and “forgot” to bring his credit card to pay the hotels, and forced her into sexual games that she did not feel comfortable with.

One day, Kathy arrived at Howard’s weirdly sterile apartment to find another woman there. When he introduced the woman as his wife, Kathy staggered back in shock. She’d had no idea he was married. He’d always claimed to be divorced.

By the time Kathy left that night, she had discovered that Howard shared everything with his wife. Everything. Including his girlfriends. She limped to her car, broken and humiliated, and wondered about going to the police station.

What would she tell them, though? Hello, officer. I’ve just been raped by the man I’ve been having consensual sex with for the last four months, and his wife. Kathy had not even known until this day that it was possible for a woman to be raped by another woman.

She decided not to go to the police. They wouldn’t believe her. They would laugh at her and she would feel even more ashamed than she already did. She pointed her car towards home and started to drive. What a disaster this had been. She would never use online dating again.

All of a sudden, Kathy was overcome by tears. Great big wrenching sobs that shook her entire body and blinded her vision. She pulled over to the side of the road, lurched out of her car, and stumbled into the park. She sat on a bench and hugged herself tight as she wept. Thank God it was late enough for the park to be empty. If there were people around she would have been making a real spectacle of herself.

She buried her head in her hands and tried to breathe deeply to calm down. She needed to get out of this park and into the safety of her apartment. She needed to lock herself away from the world and wash this nightmarish day from her body.

A shuffling sound made her look up in alarm. A man was standing a few feet away, keeping his distance and looking distinctly uncomfortable.

“I’m not going to hurt you,” he said, as if he could smell her fear. “It’s just that I heard you crying. I wanted to see if I could help. I’m Frank, by the way. My name is Frank.”

He stopped talking abruptly and moved a little closer, staring into her eyes. He peered at her intently, as if he had just had a revelation.

“I hope you don’t mind if I say this,” he said hesitantly. “But you are the most beautiful woman I’ve ever seen.”

Kathy stared back at him. In that instant, through the layers of her pain, she saw her future in this shy, gentle man.

Yes, Howard had set her on a path of disaster. But it was a disaster that had led her to be in this place, at this time, having a chance encounter with the man who would become her destiny.

It was a beautiful disaster.

For the IndieInk Writing Challenge this week, k~ challenged me with “Beautiful disaster” and I challenged Jason Hughes with “Chasing rainbows”

Filed Under: Abuse, Chance Encounter, fiction, Indie Ink Writing Challenge, relationships, Uncategorized Tagged With: , , , , ,
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The Hardest Job In The World

December 8, 2011 By

Parenting is the hardest job in the world. You never get time off – not even when you’re sleeping, not even when you are at work and your children are at school. You don’t get paid – not, at least, in any financial sense. There are times when you feel overworked, overwhelmed, and underappreciated, and every single little mistake you make can come back at you like a boomerang, days or weeks or even years later. Being a mom – or indeed, a dad – can drain your emotional and physical energy. You have to be in a million places at once, do a million things at a time, be teacher, nurse, therapist, judge, and mediator – sometimes simultaneously. The job comes with huge dollops of guilt: guilt for not having the time to play with your child while the stove is boiling over and the dog is barfing; guilt for locking yourself in the bathroom for five minutes of alone-time; guilt for actually buying something for yourself instead of spending the money on your child; guilt for rushing the homework supervision because the dinner is not made and the washing machine is jammed.

To be fair, the job of parenting has the best rewards ever: the enormous, gap-toothed smiles; the giant bear-hugs; the peals of childhood laughter; the I love you Mommy’s; the chance to look at your sleeping children at night and be filled with the most profound, incredible love.

It is  hard though, and us parents should be allowed to acknowledge that without that feeling of ever-present guilt.

And yet, when I think of how tough it all is, I cannot help reflecting on what parenthood was like for my grandmother. She was born in 1903, and her third and final child – my mother – was born just a couple of years before the start of World War II. Despite being geographically remote from the events of the war, South Africa was part of the British Commonwealth, and therefore joined the Allied forces. My grandfather was one of the generation of men sent off into the front-lines of battle in North Africa.

This thrust my grandmother into the daunting and somewhat unexpected territory of single-parenting three young children in times of extreme economic hardship. Things weren’t so easy for women back then – if they wanted to work, they were teachers or nurses. The term “stay at home mom” had not even been invented because it was unspeakable that there would be any other kind of mom.

For me, as a mom raising children in 2011, I have a reasonable degree of control over my life. I can choose to work (actually, that’s a lie – I have to work if I want my kids to have shoes instead of walking barefoot in the snow). I have a wide choice of career options, I can express myself freely through my writing, and I can get out there and go running. I have the freedom – within the framework of my family life – to make my own choices and steer my life in a certain direction.

My grandmother did not have the same leeway. She was controlled in a big way by the events going on in the world at the time. She was, in many respects, a bystander in her own life. She could only watch and wait as the world went through its turmoil, and she had to raise her kids knowing that things could change at any moment, things that she had no control over. A telegram could arrive telling her that my grandfather had been killed. Supplies of something-or-other could abruptly run out, leaving her scrambling for an alternative. The war could end and my grandfather could come home. The war could continue and she might not see him for a very long time. He could come home minus a limb or suffering from severe psychological trauma. She had no way of knowing what was going to happen.

It was a day-to-day kind of existence for that generation of mothers. My grandmother, and other women in her position, did not have the luxury of making choices or setting goals for the future.

Yes, parenting is the hardest job in the world. But I think, in many ways, that it is not as hard as it used to be.

This week’s Indie Ink Challenge came from Tara Roberts, who gave me this prompt: She was a bystander in her own life.
I challenged The Drama Mama with the prompt: Tell a story about how missing a bus for a few seconds can change your life.

Filed Under: Choices, Circumstance, Grandmother, Indie Ink Writing Challenge, life, parenting, World War II Tagged With: , , , , , , , , ,