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A Portrait of Two Brothers

August 21, 2012 By

For the next week, I will be participating in the WEGO Health “Advocating for Another” blog carnival. As I talk about the joys and challenges of raising a child with autism, I also recognize the contributions – of which there are so many – of my younger son James. All of the posts that I publish here this week are dedicated to him.

Today’s prompt: Portrait Post – Write a descriptive portrait of your child/ren. Share qualities that make them, them – and include an image!

They lie curled up together on the bed, their identical-coloured curls tangled together on a single pillow bedecked in a Thomas the Train pillowcase. The larger of the two boys has his arm thrown casually but protectively over his little brother. These boys are both amazing individuals in their own right, but at times like this, it seems that one would not be complete without the other.

Although only one of the children has a diagnosis, I am an advocate for both of them.

On the left is George, almost nine years old. He is tall for his age: one of those long lanky kids who somehow manages to stay skinny despite eating startling quantities of food. He bears a strong physical resemblance to me: our noses are the same shape, our eyes are the same shade of blue, and when we’re tired, both of our left eyes droop ever so slightly in the corner.

George has autism. He has profound delays in speech and social communication, and he gets anxious – almost panicky – when an established routine is deviated from. He has trouble regulating his emotions, and will bang his head in frustration when he is unable to make us understand what it is that’s bothering him. There are times when I look into his eyes and see the depth of his frustration, his sadness, his desperation to communicate in ways that he is not able to. It’s as if he wishes he could emerge from his world, even if just for a moment.

There are times, though, when his world is a wonderful place. He can see patterns where the rest of don’t even know one exists. He sees beauty in numbers: he is comforted by their consistency and their power, and he has always outperformed typical kids of his age in math. If there’s a problem to be solved, he will solve it, albeit by a somewhat unconventional method. He has a quirky sense of humour along with the most infectious laugh you ever heard. When George laughs, the whole world really does laugh with him.

And he has the most beautiful, pure heart that is just bursting with love. I treasure the moments when he says in his sweet lyrical voice, “Go give Mommy a hug”, and then clambers onto my lap, drapes his gangly arms around my neck and buries his face in my hair.

On the right of the bed is James, who is six going on twenty-seven. He came flying into the world like a cannonball one cold Christmas afternoon, and he hasn’t stopped since. He is a bundle of dynamite who zings his way around life with a seemingly endless supply of energy. His face is bright and vibrant, brought to life by shiny blue eyes that view the world with wonder and curiosity.

It is hard for him, being the sibling of a child with autism. Things happen that he perceives to be unfair, but in spite of this, his love for his brother does not waver. He tells me that he loves George more than he loves me – and I am completely fine with that. When George is having a meltdown, James treats him with concern and compassion. Many times, he will be the first one to know what George is trying to say and what he needs. We sometimes see George seeking out the comfort of his brother – comfort that James is always ready to give.

James shows wisdom and empathy beyond his years. But when he wakes in the morning and sleepily climbs into my lap, his little body melts against mine and I am reminded that he is just a baby. He may be a little brother with a big brother’s role, but he needs to be nurtured, cared for, protected. We need to be make sure that as he grows up, his role as George’s brother is balanced by his identity as James, as an individual with his own hopes and dreams.

I worry about the future for both of my boys. They will each have their challenges to deal with, and their battles to fight.

But now, as they lie sleeping, they don’t have a care in the world. And that’s just the way it should be.

(Photo credit: Kirsten Doyle)

Filed Under: Advocating for Another, autism, Brothers, Children, family, life, WEGO Health Tagged With: , , , , , , , , ,
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Bedtime Toys: Finding The Lost Lego

June 21, 2012 By

Last night, my son George couldn’t find his Lego. This was a potentially disastrous situation: George has to  have certain things with him when he goes to bed, including a subset of his Mr. Potato Head collection and his stack of pink and yellow Legos. Gathering them up and putting into bed is part of the routine, and if anything goes missing, the entire routine – and subsequently everyone’s sleep – goes to hell in a handbasket.

So when the Lego went missing, the entire family embarked on a thorough, systematic search. Anyone looking at us would have thought we were trying to root out Saddam Hussein. The search included all rooms in the house, the backyard, the car, even the garage.

Eventually James found half of the Lego stack caught behind the treadmill. The other half had somehow ended up in the washing machine with some laundry. The crisis was averted, and before long, George was snuggled up in bed with his Lego and his Mr. Potato Heads.

It seems like a strange choice of sleeping companions. I’d always thought that kids liked teddy bears because they were soft and comfortable to hug, and for a long time, I assumed that George’s total lack of interest in plush toys was somehow related to his autism. Since then, I have realized that not all kids are into teddy bears, and that preference has nothing to do with autism or the lack thereof.

James went through a brief phase of having to sleep with every stuffed toy in the house. I would have to arrange them around him, and to an extent, on top of him, and I would always wonder if the furry friends would take up so much space that there would be no room left for the kid. It was an impractical arrangement because James is a restless sleeper, and one by one, the stuffed animals would be displaced. When I went to wake James up in the morning, his room would look like a plush toy factory had exploded in it.

It was at around this time that George started taking his Mr. Potato Heads to bed. He couldn’t possibly fit his whole collection in there, so he would pick out about ten of them, ensure that they had their arms and legs and other bits and pieces, and he would line them up neatly. There was a whole variety of them – plain old Mr. Potato Heads were mixed in with the likes of Darth Tater and Indiana Jones: Taters of the Lost Ark.

Taters of the Lost Ark was an interesting one: if you pushed down on his hat the Indiana Jones theme song would be played. This would happen when George rolled over onto this particular Potato Head in his sleep.

It’s a little disorienting to wake up at three in the morning to the sounds of the Indiana Jones theme song.

George’s choice of sleeping companions has not changed much since then, but James’ has. The stuffed toys have been relegated to a toy box, and James now sleeps with Finn McMissile (of Disney Cars fame), his Megatron (a member of his ever-expanding Transformers family) and a glow-in-the-dark skeleton.

From time to time, I will check on them after bedtime to find the pair of them in George’s bed with their respective toys. They’re hiding under the comforter with a flashlight on, playing companionably alongside each other. I pretend to reprimand them for not sleeping, and then I slip out of the room and let them play. Because really, who am I to interrupt their moments of brotherly togetherness?

Do your kids sleep with stuffed animals, or do they prefer other toys? How strict are you about separating play time from sleep time?

(Photo credit: http://www.flickr.com/photos/scazon/4207552952)

Filed Under: Bedtime, Children, sleep, Toys Tagged With: , , , , , , , , , , ,
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Affection, Empathy And Autism

May 5, 2012 By

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)

Filed Under: 2012 Wordcount Blogathon, autism, Brothers, Empathy, Love Tagged With: , , , , , ,
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Autism Through A Child’s Eyes

April 8, 2012 By

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 8 – Best conversation I had this week: Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

I’m not much of a person for conversations. I suffer from social anxiety, so talking is difficult. I tend to be more comfortable finding my voice in the form of the written word.

Obviously, this is less of a problem when I am among friends and family. I am married to a man who, in addition to having a totally off-the-wall sense of humour, has no “inside voice”. The conversations I have with him range from the baffling to the downright hilarious.

I also have some great conversations with my younger son, James. For a six-year-old, his vocabulary is astounding, and his imagination knows no bounds. He weaves in and out of topics at will, and you can never tell where the conversation will go next. One moment he seems to be wise beyond his years; the next, we are reminded that he is still a kid finding his way in this world.

A few days ago, we had this conversation while I was cooking dinner:

James: Mommy, can you buy me a water gun?
Me: Why do you want a water gun?
James: So I can spray Granny on the nose.
Me (after snarfing on my coffee): Why do you want to do that?
James: Because her nose is dry and that means she’s sick. Roger (a classmate) said so.
Me: Roger said that Granny is sick if her nose is dry?
James (looking at me as if I’m nuts): No. He was talking about his dog.
Me: Ummmm, James? Dogs and people aren’t the same. Granny’s nose is fine.
James: I think Roger’s dog has autism.
Me: What makes you think that?
James: He doesn’t talk and he knocks down Roger’s Lego towers. It’s not his fault, though. He doesn’t know what he’s doing because he has autism.
Me: James, that’s just the way dogs are. Dogs don’t have autism.
James: How do you know?
Me: Ermmmmm (thinking: the kid has a point)
James: Mommy?
Me (wondering about James’ sudden sombreness): Yes, buddy?
James: Will George always have autism?
Me: Yes, baby, he will. Autism is not something he can grow out of.

I want to pause this account briefly to say that where autism discussions with James are concerned, I find that honesty is the best policy. I don’t try to sugar-coat anything, and I answer questions without elaboration. This approach seems to be the one that works best with James.

James: That’s OK. I love him.
Me: I know you do. And he loves you too.
James: Yeah! Mommy?
Me: Yes?
James: Will George die from autism?
Me: No, people cannot die from autism. We just have to make sure we keep him safe.
James: It’s OK, Mommy. I’ll take care of him.

Yes, I cried.

(Photo credit: Kirsten Doyle)

Filed Under: anxiety, autism, Children, Conversations, Empathy, Humour, Siblings Tagged With: , , , , , , ,
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Book Review: My Brother Sammy Is Special

April 7, 2012 By

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.

Filed Under: autism, Brothers, Health Activist Writers Month Challenge, Siblings, Special Needs, WEGO Health Tagged With: , , , , , , , ,
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Superhero Wannabe

April 3, 2012 By

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.)

Filed Under: autism, Brothers, Emotional stability, family, Health Activist Writers Month Challenge, parenting, Siblings, Special Needs, Superhero, Superpower, WEGO Health Tagged With: , , , , , ,
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The Birth Of Brotherhood

March 5, 2012 By

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.

Filed Under: Baby, Brothers, Children, family, Pregnancy, Siblings Tagged With: , , , , , , ,
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Wordless Wednesday – Brothers

February 23, 2011 By

Someone once told me that you know an idea is good when someone steals it. I am stealing the Wordless Wednesday idea from my friend Amy. I hope she doesn’t mind and that she feels flattered!

There is something special about the bond between brothers, and for today’s post, I want to offer you some pictures of my two boys – very special brothers indeed.

Driving Lessons (2007)

Sleeping Beauties (2007)

Winter Fun! (2008)

Drinking Buddies (2008)

All Aboard Thomas The Train! (2008)

Water Play (2010)

The Greatest Love Of All (2010)

Filed Under: Brothers, Photography Tagged With: , , , ,
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Wordless Wednesday – Brothers

February 23, 2011 By

Someone once told me that you know an idea is good when someone steals it. I am stealing the Wordless Wednesday idea from my friend Amy. I hope she doesn’t mind and that she feels flattered!

There is something special about the bond between brothers, and for today’s post, I want to offer you some pictures of my two boys – very special brothers indeed.

Driving Lessons (2007)

Sleeping Beauties (2007)

Winter Fun! (2008)

Drinking Buddies (2008)

All Aboard Thomas The Train! (2008)

Water Play (2010)

The Greatest Love Of All (2010)

Filed Under: Brothers, Photography Tagged With: , , , ,