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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)

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Beyond The Stars

29 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 29 – Six sentence story: In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences?

When my son George was diagnosed with autism, I didn’t really know what it meant or what he would ultimately be capable of.

I didn’t know what it would mean for my family, or for George’s sibling relationship with his little brother.

Since then, we have discovered that George has potential that reaches beyond the stars, and that all we have to do is help him get there.

We have discovered that he has a big  heart with an infinite capacity for love, and that he and his brother will be best friends for life.

There are challenges, and I worry about what the future could bring for my boy.

But I believe in him absolutely.

(Photo credit: http://www.flickr.com/photos/gsfc/5161800961/. This picture has a creative commons attribution license.)

Book Review: My Brother Sammy Is Special

7 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 7 – Health Activist Choice: Today, I get to write about anything I like. I decided to take the opportunity to review a book that should really be on the bookshelf of every child who has a brother or sister with autism.

I tend to feel a lot of angst when it comes to parenting my younger son, James. James, who is six going on thirty-two, is the neurotypical child in my family. He is the one without autism, the one who is very socially engaging and never stops talking, even when he’s asleep.

James himself does not make parenting difficult. He is as well-behaved as a boisterous six-year-old boy can be, he is making good progress at school, and he gets along famously with his big brother George when they’re not throwing Lego at each other.

What makes it hard is the fact that due to George’s autism, I have to use completely different parenting styles with my kids. What I do makes perfect sense to me, but it can be hard for a six-year-old to grasp why he is being treated differently to his brother. Although my husband and I try our best to explain things to James, a lot happens that James perceives to be unfair.

And so when I got the opportunity to review a book written specifically for the siblings of children with autism, I wasn’t going to pass it up. Written by Becky Edwards and illustrated by David Armitage, My Brother Sammy Is Special tells the story of a boy who is angry about his brother being different. He doesn’t want a brother who is different. He wants a brother who can talk to him and play with him, and who doesn’t wreck his stuff.

In a beautiful twist, Sammy’s brother has a revelation, and instead of trying to force Sammy out into his world, he ventures into Sammy’s world. And so Sammy’s brother achieves the brotherly bonding that he so desperately craves, but not in the way that he had expected.

Having read the book myself, it was time to test it out on a member of the target audience. I snuggled up with James, opened the book, and started reading. The story, with its flowing narration and beautiful illustrations, engaged James’ attention throughout. He was very concerned about where this brotherly relationship would go, and he was visibly relieved that it all worked out in the end.

My Brother Sammy Is Special is written in language that is simple enough for young children to understand, yet descriptive enough to convey the complexity of the special needs sibling relationship. Although the blurb in the dust jacket says that the story is about a boy with autism, the story itself makes no specific mention of the condition. This makes it flexible enough to be effectively used within many kinds of special needs families.

The book is a great launch-pad for discussion. It flows in such a way that parents and their children can pause to ask questions and talk about aspects of the story without losing the flow. For children who may be bewildered by the special needs of their siblings, the story can serve to provide both comfort and understanding. It also describes practical ways in which a typically developing child can try engage with his or her special needs sibling.

I highly recommend this book for any family that has a mix of special needs children and typically developing children. It is a gem – a treat for parents and children alike.

My Brother Sammy Is Special is available for purchase at Amazon.

Many thanks to Skyhorse Publishing for allowing me to review the book, and for providing the cover image.

Superhero Wannabe

3 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 3 – Superpower Day: If you had a superpower – what would it be? How would you use it?

superhero

A couple of weeks ago I posted something on Facebook about a long training run I had just been on, and one of my friends responded by asking if I run while wearing a cape and a big “S” on my shirt.

Well, no I don’t. It would be highly uncomfortable and let’s face it, people would stare. I don’t want to be responsible for any traffic accidents. And besides, being a distance runner might set me apart in some small way from non-runners, but it certainly doesn’t make me a superhero. If I was wearing an “S” on my shirt, it would stand for “sweaty”.

But what if I was a superhero? What if I could choose any superpower I wanted? What would that superpower be and how would I use it?

As an autism mom – indeed, as a plain old mom – there are so many areas in which I feel woefully inadequate. There are so many things that I wish I could do better, or faster, or with less grief. There are, of course, things I would like to do that in the real world are simply impossible.

And now, for the purposes of this article, I have to choose just one superpower.

The ability to cure autism? This may seem like the obvious choice, but it is not what I would want. If I cured my son of autism, I would be changing who he is. And while I am on a permanent quest to help him with the aspects of autism that cause him pain and frustration, I would never, ever want to change who he is.

What about bottomless reserves of patience? Those who know me well know that I am don’t exactly have a Zen-like aura of calm about me. I tend to get a little fraught at times. But changing that would surely change who I  am, and while I would never claim to be perfect, I’m reasonably OK with the person I am.

No, the superpower that I would order would be the ability to instantly soothe my children. At a touch, I would be able to calm my son from his meltdowns, and in the midst of his inability to communicate that causes him such frustration, I would make him feel safe and secure. I would brush my hand lightly on his forehead, and immediately, he would know that everything is OK, and inner turmoil he was feeling would disappear.

I would use this superpower on my younger son as well. The neurotypical child, the sibling to the special needs child. The one who, while knowing that his brother is different and needs special care, sometimes feels overwhelmed by it all. It is a rough deal, being the brother of a child with autism. My two boys unquestionably love each other, but still, it is hard for the sibling.

With my superpower, I would soothe my younger son when things got too much for him. When something happened that he perceived to be unfair, I would gently stroke his hair, and he would instantly feel a sense of calm. He might not fully understand his brother’s autism, but he would feel that everything was right with the world, and he would feel the love that we all have for him. He wouldn’t feel overwhelmed, and above all, he would know that his brother adores him and never, ever wants to hurt him.

I strive to make my kids feel these things – usually, it just takes longer than I would like.

(Photo credit: http://www.flickr.com/photos/globalismpictures/5723668328/. This picture has a creative commons attribution license.)

The Birth Of Brotherhood

5 Mar

On the evening of Christmas Eve 2005, my husband and I lay on our bed with our son George between us. Then a little more than two years old, George was doing his usual pre-bedtime rolling around with Mommy and Daddy. It had been a nightly ritual from the day he was born. He would lie quietly with us while he drank his bedtime milk, and then he would spend ten minutes climbing onto my husband and then falling off in fits of giggles. It was a time that we treasured, but on this particular evening, I was feeling undertones of melancholy. My body was telling me that my second child would be born the following day. Which meant that this ritual was about to come to an end – or at least, dramatically change. In an odd way, I had already started feeling nostalgic for George’s only-child days.

It’s not to say that I wasn’t happy about the pending arrival. I couldn’t wait for this addition to my family. I was excited about bringing home a baby brother or sister for George, even though it would be a bit of a surprise for him to suddenly have an entire other human being in the house. Throughout my pregnancy, he hadn’t shown any signs of understanding what was going on, other than that he wasn’t allowed to jump on Mommy’s very large belly.

The baby did indeed arrive the following day, Christmas Day 2005. Having languished in his floaty home for a week past his due date, he was now very eager to get out and start living. I spent James’ first two days of life in a haze of exhaustion. When I had time to think, it was to wonder how George’s introduction to his new sibling would go.

As it happened, James started crying while we were driving him home for the first time. He wanted to be nursed, yet again. All about the boob, that one was. When we got him home, I settled down on the couch with him to nurse while my husband retrieved George from my mother-in-law. When George came bounding into the room to jump on the couch, I told my husband not to stop him. George stopped short at the sight of this tiny being attached to me, but although he was clearly surprised, he did not seem to mind the being’s presence. He didn’t say anything about it, but George was saying next to nothing at that time anyway.

For the first few weeks, George seemed a little bemused by James. I had the impression that he did not really see James as a person, but as an extra thing lying around the house. This was illustrated to me perfectly one day when James was lying on his back on the floor. We had one of those big foam alphabetic floor puzzles, and James was lying on that – in the exact spot where George wanted to play. George very matter-of-factly went up to James and took one tiny ankle in each hand. He then proceeded to drag James off the floor puzzle and onto the carpet. He was not rough or aggressive about it. He was merely moving something from Point A to Point B while I cracked up laughing. James didn’t seem to mind being displaced in this way. He just kind of looked at George with an air of resignation.

I will never forget the day I saw a shift happen in George – a shift from indifference to genuine brotherly affection. I had just changed James’ diaper and he was lying in the middle of my bed. George came in from wherever he had been and grabbed James’ leg as he was climbing onto the bed. James gurgled and waved an arm in response to being touched, and George stopped and stared at him, as if realizing for the first time that there was a person in there. His facial expression changed from one of curiosity to one of absolute tenderness. He reached forward, and with both arms, he reached out, lifted the baby and drew him close in a protective embrace.

It was the first time George spontaneously hugged James.

In that moment, I felt that my two sons truly became brothers.

Autism Brothers

8 Nov

Sometimes, when you’re five years old and your big brother has autism, life just isn’t fair.

This weekend I spent a lot of time worrying about my son James. The worrying was prompted by reports from his before- and after-school program that he’s been acting up and is “always in trouble.” Initially, my husband and I put this down to James’ independent nature. He is a strong-willed child who is currently going through a phase of pressing other peoples’ buttons and seeing how far he can go.

But my gut instinct is telling me that I shouldn’t be giving James a hard time about his behaviour in the program – at least, not yet. Not until I have had a meeting with the program administrators to get a clearer picture. I have this nagging feeling in the back of my mind that there is something else going on here, something that might be making my baby unhappy.

About six weeks ago, we went through a decluttering blitz at my house. We got rid of toys and clothing that the boys had outgrown, and we threw out stuff of our own that has been lurking in boxes in our basement since Noah built the ark. One of the items we found was a calendar from a Chinese restaurant. It has the entire year on one long piece of fabricky-type stuff that rolls up like a mini-blind. James was fascinated with this thing and asked if he could have it. I said yes, and passed it over.

Last week while James was playing with the calendar, George kept grabbing at it and saying, “Mine!” James was getting upset because George was bugging him, and George was getting upset because he wasn’t getting the calendar. The situation escalated to the point of George having a meltdown and trying to headbutt James. And in order to stop George from going off the deep end, my husband took the calendar from James and gave it to George.

James was devastated. He sobbed his little heart out. It was bedtime anyway, so I carried him to his bed, lay down beside him, and held him tight. My own heart felt like it was breaking.

James didn’t see that my husband had been trying to stop a bad situation from going completely out of control. He just saw that we had taken away something that belonged to him, and given it to George.

There have been other times when George has gotten what James must perceive to be preferential treatment. We have to make allowances for George’s tolerances and levels of understanding. When James gets a timeout, he understands that he is being punished for something. This is completely lost on George: consequently, George never gets timeouts. We have different expectations of the two boys where it comes to sharing their toys with each other. Sometimes, family outings have to be cut short because George is not coping.

I cannot help asking myself: is it any wonder that James is trying too hard to assert himself in an environment other than home? Could it be that his perceived lack of control within his family is leading him to try and establish it elsewhere?

I try hard to make it up to James in other ways, but I wonder if I am doing enough. My mind keeps coming back to the idea that this poor kid probably doesn’t even have faith that his toys will remain his own. I worry about whether we are expecting James to have more coping ability than he is developmentally capable of.

It is clear to me and my husband that James loves his brother. He is always – with increasing success- trying to get George to play with him. When George is being reprimanded for something, James is standing up for him. And sometimes, when James wakes up from a bad dream in the middle of the night, he crawls into bed with his big brother and the two boys snuggle up to each other.

As much as they love each other, though, it seems to me that at times, the happiness of one has to be sacrificed for the needs of the other.

And that just isn’t fair.

(Photo credit to the author)

He Ain’t Heavy, He’s My Brother (2010/04/23)

23 Apr

With the arrival of my Mom yesterday, I did not have the time or inclination to post. However, I do still want to keep up with the Post A Day challenge, so for the next two weeks, while I’m doing stuff like visiting with my Mom and getting married, you may see a number of reposts. Like this one… I thought it would be fun to unearth the post from this day in 2010…

My boys have fallen into a new sleep routine.  At bedtime, we do all the stuff we always did.  They get their jammies on, use the bathroom, brush their teeth (most days they have a bath earlier in the evening).  For story-time, I sit on my glider chair between their beds – the same glider chair that saw me through countless night-time feedings when my boys were infants.  George gets right into bed, James curls up on my lap, and they each drink their milk while I read a story (current flavour of the day: anything to do with Thomas the Train).  After the story, James gets into his bed, each of them gets a sip more milk, and the lights go out.

About five minutes later, we usually see a little face quietly peeking around the corner: George, trying to sneak onto the futon we have in our living room so he can watch TV.  Or maybe he just wants the extra hugs we always give him, because once we’ve hugged him he goes back to bed amenably enough.  At some point during the night, usually fairly early on, he migrates to the sofabed in the playroom, and sleeps there for the rest of the night.

Sometimes I worry about this.  From time to time, when one of the kids is having a hard time, I have to sleep on the sofabed with said kid, and that thing ruins my back.  I always wake up the next morning feeling as if I’ve been tortured by Vikings.  I worry about whether the sofabed is doing to George’s back what it’s doing to mine.  But once he’s there he won’t budge, he sleeps soundly, and he wakes up cheerfully enough.  So maybe he’s OK and I just need to chill out a little instead of finding yet another thing to be perpetually stressed about.

In the meantime, James is sleeping soundly in his own bed.  He’s a little champion at bedtime, James is.  Once the lights are out he goes right to sleep without a fuss.  He usually wakes up in the middle of the night, though – sometime between midnight and three in the morning.  When I found out the reason for his nocturnal awakenings, my heart soared: he gets lonely for his big brother.  He makes his way to the sofabed, climbs in beside George, and goes right back to sleep.  George surfaces just enough to shift to make room for James, then he goes to sleep as well.

I am always the first one in the household to wake up in the mornings.  Some days – like today – I go for an early morning run.  Other days, I like to get dressed, pour out a cup of coffee, and have some me-time at the computer reading emails or playing meaningless games on Facebook.  I love carving out that time for myself in the mornings, before the rest of the world wakes up.

Whatever I am doing – running or playing on the computer – the first thing I always do is check on my boys.  I go to the playroom and watch them sleeping peacefully, each completely at ease with the other’s presence.  They look cosy and comfortable, like a pair of sleepy kittens.  There is always physical contact between the two: James’ hand resting on George’s, or George’s hand lightly touching James’ shoulder.  When I checked on them this morning, George’s arm was flung over James’ shoulders.  It looked big brotherly and protective.

I savour those moments as I watch them and wonder what dreams are going on in those little heads.  Even though they are sleeping, I feel as if I am witnessing a moment of special connection between the two brothers.