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His Brother’s Keeper

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It is a cold snowy afternoon, and the boys have just finished doing their homework. George – eleven years old now and as tall as me – is sitting on the couch trying not to cry. I am on the floor with my back up against the couch, holding his foot in my lap. I start ministering to his sore toe as gently as I can, knowing that no matter how hard I try, it’s going to hurt.

For the last couple of weeks, George has been plagued by an ingrown toenail. He was at the doctor earlier in the week – a feat in itself for this boy with autism who finds doctors to be mysterious and scary – and I am carefully following the care-and-cleaning instructions that I have been given.

He tries so hard to be brave as I clean and bathe his toe, but he cannot help getting distressed. As he cries out in pain, James suddenly appears in front of us. James – nine years old and full of energy – is just in from throwing snow in the back yard. His gaze moves from his brother on the couch to me on the floor surrounded by First Aid supplies.

“I want to do it,” he says.

“You want to do what?” I ask, not understanding.

“George’s toe,” he says. “I want to do it. George is my brother. I’m the one who gets to take care of him.”

I regard my son, blown away yet again by how much love and compassion is within him. I think about the practicalities of him dressing George’s toe and how I have already been kicked several times during these First Aid sessions. I don’t want James to get hurt.

But my Spidey-sense is telling me to listen to James. I switch places with him, and following my instructions, he calmly takes care of George’s toe. George is still crying but he is visibly less distressed. Maybe James’s small, light fingers are gentler than mine. Or maybe George is responding to the love of his brother.

James uses a little bit too much of the antiseptic lotion, and the dressing and bandage are a little haphazardly applied. But none of that matters next to the waves of kindness that are radiating from James.

With the job done, James gently kisses the newly applied bandage and gets onto the couch.

“You’re my George,” he says, wrapping his arms around his brother.

This is an original post by Kirsten Doyle. Photo credit to the author.

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For James On His Birthday

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To my darling son James,

Nine years ago today, you finally decided to leave the comfort of the womb and join us in the world. You were a week overdue: either you were very comfortable where you were, or you figured that we would need an extra week of quiet before the adventure began.

The day of your birth was incredible, filled with little moments that I will never forget – like the little kid in the hospital coffee shop who was convinced that I was Santa Claus. You can’t blame him: it was Christmas morning and I had a massive belly and a Santa hat. The best moment of all, though, was when you came flying into the world like a cannonball, screaming in outrage. There was never any doubt that you had a very healthy pair of lungs and an abundance of energy.

Since that day, you have filled our lives with a very special kind of magic. You are never afraid to explore and discover not only what is in the world, but what is within yourself. Your massive imagination takes all of us on weird and wonderful journeys, and the front of my fridge is covered with your fabulous artwork. Your creativity combined with your love of animals has given us a zoo of animals that have been lovingly crafted by you. As I write this, you are transforming ordinary cardboard into a set of Wild Kratts creature power disks.

You have the biggest heart of anyone I know. You are one of life’s true givers who experiences absolute joy through the act of making other people happy. Every single day, I am on the receiving end of your spontaneous hugs and little handmade gifts and notes. I see the kindnesses you extend to your friends without even having to think about it. Being a caring person is so much a part of who you are that your school gave you an award for empathy.

The love that you have for your brother is genuine and complete. You do not take anything for yourself without first making sure George has something too. If George’s autism is making things difficult for him, you calmly and patiently do whatever you can to soothe and comfort him. You play with him, you share with him, you protect him. You take care of him so beautifully, and yet you think of him as your hero.

I know that sometimes I cannot keep up with your boundless energy and your constant chatter. But I absolutely love that those things are a part of your character, and I would not change a single thing about you.

I love you, and it is a joy and an honour to be your mom.

Happy birthday.

Lots of love,
Mommy

 

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14 Things I Want To Accomplish In 2014

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1. Stretch myself to run a distance longer than the half-marathon. I am registered for the Around The Bay 30K race at the end of March.

2. Publish the book I wrote for 2013 NaNoWriMo. It may not be a best-seller (or maybe it will – who knows?), but I want to end 2014 being able to say that I’m a published author.

3. Sort out, for once and for all, my messed up relationship with food. For thirty years I’ve been flip-flopping between eating disorders and I’m tired of it.

4. Bring to fruition everything I have set in motion to get funding and support for our non-profit youth recording studio.

5. Get my home office space properly organized. That includes getting a new office chair so my ass stops sliding onto the floor.

6. Declutter my house and get rid of clothing, toys and things that are no longer used.

7. Run a half-marathon faster than 2:15:00.

8. Establish a habit of going to bed by 10:30 every night.

9. Stick to my training plans, without making excuses about the weather or how hard it is to wake up early in order to run or go to the gym.

10. Learn to cook more things from scratch. This year, I learned how to make great Hollandaise sauce and cook fish. Next, I want to conquer Alfredo sauce and find a semi-healthy recipe for cheesecake.

11. Make more effort to stay in contact with my brother. He is a really awesome guy and I miss him. I want him to be a bigger part of my life.

12. Complete another two credits for my post-grad writing certification. I am working on my third right now, and I want to have five done by this time next year.

13. Spend more time with friends. Virtually all of my friendships are conducted via the Internet. While that is highly convenient for my introverted self, it is good for the soul to be in the same room as a friend having a good chat. Preferably with wine.

14. Be comfortable being me, instead of trying to be a person I think other people want me to be.

 

What are your goals for the next year?

This is an original post by Kirsten Doyle. Photo credit: joesive47. This picture has a creative commons attribution license.

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If He Didn’t Have Autism…

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The boy plops down beside me on the couch and puts his hand on top of my head. He is preoccupied with my hair, to the extent that my lengthy locks have to spend most of the time living in a scrunched-up knot. Today, however, my hair is down, and the boy is making the most of the opportunities this provides.

As he runs his fingers through my hair, sometimes twirling, sometimes tugging a little, a thought runs unbidden through my mind.

If he didn’t have autism, who would he be? What would he like to do? Who would he play with? What summer activities would he ask to be signed up for?

Almost instantly, the thought is gone. I realize that it doesn’t matter. He is who he is. He is himself. He likes to play on his computer, assemble endless Mr. Potato Heads, and read his Biff and Chip books. He loves his family and enjoys playing with his little brother until the party gets rough. When he needs downtime, he’ll take a blanket and pillow outside and lie down on the back lawn. He likes junk food as much as the next kid, and he can go through endless quantities of milk. He’s not big on watching TV, but he loves going to the water park. He plots world domination with his brother and doesn’t always listen to me.

In other words, he is a kid with likes and dislikes, odd little quirks, and attachments to the people he loves. Just like anyone else.

Autism is a part of who he is, but it does not define him. If he didn’t have autism, he would be himself, just the way he is now. Maybe he would be a more social, verbal version of himself. Maybe he would play with other kids and be in a sports team. Or maybe he wouldn’t. It doesn’t matter. Asking myself what he would be like if he didn’t have autism is as pointless as asking what his brother would be like if he did have autism.

As he sits on the couch playing with my hair, I look over at him. He has a dreamy look in his eyes and a winning smile on his face.

He is himself. He is happy.

He is mine.

(Photo credit: Kirsten Doyle. This is an original post by Kirsten Doyle.)

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Once Upon A Time

This week I am participating in the WEGO Health “Advocating for Another” carnival, in which I write posts in response to prompts. I am having a lot of fun with this!

Today’s prompt: Once upon a time – It’s storytelling day! Write a story about yourself, your loved one, and others as though you’re a children’s book author. Be sure to include a beginning, middle, and end. Extra points for illustrations!

Once upon a time, there was a little girl who didn’t really like dolls, except for the rag doll her granny made her and the child-size walking doll she once got for Christmas. She didn’t really play with dolls, though. She preferred to play “Cops and Robbers” with her brother and his friends, even though her brother always made her be the bad guy who was shot dead.

The little girl thought her brother was bossy and annoying.

Many people thought the little girl would never be a mommy. She didn’t know how to take care of dolls, and she couldn’t sew or cook. Everyone thought that you had to be able to sew and cook in order to be a mommy. The little girl didn’t really care. She wanted to be an astronaut.

The little girl became a teenager and stopped being little. She still couldn’t sew or cook, and she was painfully shy around people she didn’t know. Apart from a couple of short-lived attempts at relationships, she didn’t have boyfriends. People still didn’t think she would ever become a mother. The girl still didn’t care about that, but she was starting to wonder if she would be alone for her whole life.

When she went away to university, the girl – now a young woman – met a man who flattered her and made her feel special. But then he hurt her and made her feel worthless. Now the young woman didn’t want to be a mother. She didn’t want to be a wife. She wanted to be alone, and for a long time, she was.

The woman grew older and moved to another country. One day, when she was sitting in a park, a man sat down beside her and told her she had beautiful eyes. When she looked at him, she felt as if she was looking at her future.

The man and woman moved into a house together. They had a baby, and two years later, they had another one. The woman had become a mother! She loved her children more than anything, and her children loved her.

The woman no longer thought her brother was bossy and annoying. He walked her down the aisle when she got married.

When a doctor told the woman that her older son had autism, she cried. But after a few years, she knew that even though there would be hard times, her child would be OK, because he had a family who loved him.

(Photo credit: Kirsten Doyle)

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Remembering The Things That Matter

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

Walking down the aisle with my brother

This week, my first wedding anniversary came and went without me really posting anything about it, other than a status update on Facebook, in which I tagged my beloved.

For about three months before my wedding I was fraught with stress. Had I sent out the invitations with enough time to spare? Would we get a DJ? Would the venue be OK? Where would I get shoes that were comfortable?

I worried about whether a wedding would be too overwhelming for a child with autism. I had a falling-out with the lady who was supposed to make the cake. We couldn’t afford to pay for decor and we hoped that what the venue was providing would be sufficient. My intended and I had silly little arguments over nothing.

My bridesmaid, speaking from the comfort of her decade-old marriage, assured me that no-one would care about the details. When people looked back on our wedding, they would not remember what colour the napkins were or the fact that I hadn’t been able to pony up the cash for chair covers.

To tell the truth, I barely remember those details myself. The stuff I do remember seems so much more important. Like the fact that my friend Fran, who was doing the music for the ceremony, arrived a few days in advance and along with my mom, helped me wrap the guest favours and take care of final details. Or the fact that her friend, who was accompanying her to the wedding, arrived two nights before and in spite of  being a complete stranger to me, cheerfully rolled up his sleeves to lend a hand.

I remember the fantastic respite worker who took charge of the kids for the day and helped them have a wonderful time. And my maid of honour and bridesmaid, who showed up on my wedding day and whisked me off to get my hair and makeup done.

I recall the humour in the fact that the only time Jehovah’s Witnesses have ever come to my house, it was on my wedding day. And how funny it was when various people had to take turns doing up the buttons on my dress.

And I remember – with such fondness and love – walking down the aisle on the arm of my brother, who looked so proud (and possibly relieved to finally be marrying me off) as he ushered me in to my future.

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Beyond The Stars

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.)

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

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.

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Things Are Getting Hairy

You know that your wedding planning is entering its final stages when you start using Flight Tracker to see where in their journeys your out-of-town guests are. As I type this, my Mom and my brother are en route from Johannesburg to New York (a brutal flight that keeps you cooped up in a plane for 18 hours – I do not envy them). I will see my Mom on Thursday; my brother will arrive in Toronto from New York next week.

Things are coming together. There is still a lot to be done – so much so that thinking about my to-do list puts a knot of anxiety in the pit of my stomach – but most of the little crises that have arisen have been resolved.

I have not had a nervous breakdown. I came close last week, though.

It was all about the hair. I had booked a hairdresser to come to my house and do hair for myself, my maid-of-honour, the bridesmaid and the flower girl. To be fair, the hairdresser had told me ahead of time that school commitments might get in the way and we might have to make other arrangements. That was a chance I took when I booked her. And sure enough, she called me a short time later and told me that she would not be able to help out.

I got in touch with another hairdresser, one whose rates seemed reasonable. The problem was that every time I spoke to the guy there, I was given a different quote. Each quote was progressively higher than the previous one. Eventually Gerard spoke to the guy, and he was given a much higher price than anything I had been told.

It was clear that we could not use this hairdresser. At this rate, we’d have to sell our house to pay him by the time the day of the wedding arrived. What this meant, though, was that with two weeks to go, I still had no hairdresser.

Any woman would agree that hair is kind of important on a wedding day.

I lost it. I started to have this weird little meltdown, ranting to anyone who would listen about how I was never going to find someone to do my hair, and how I would have to persuade my makeup artist to wing it and do it for me (this was before the makeup artist bailed on me with no warning).

Gerard was trying to calm me down but I was just so stressed. I was making these high-piched supersonic noises that only dogs can hear.

Gradually, the pitch of my voice lowered enough for my noises to loosely resemble speech. I was tearfully saying stuff like, “My hair is very important, you know.”

Gerard, in a kindly and patient tone, said, “Of course it is.”

I think he was doing that thing where you agree with everything a hysterical person is saying, no matter what. I could have said that mulberry trees were falling out of the sky, and he would have agreed with me.

In the end, Gerard told me not to worry about it. He said he had a plan to make it all better.

Sometimes, when Gerard tells me not to worry, I have the sense to trust him. This was one of those occasions. And true to his word, by the time I got home from work the following day, he had found and spoken to a hairdresser. The day was saved. Relative peace could reign once more.

Despite earlier threats to shave my head and put a tattoo of a butterfly on my scalp, I will be able to walk down the aisle with beautifully styled hair.

It’s a good thing. That tattoo would have hurt.

(Photo credit: http://www.flickr.com/photos/25559122@N06/3811393733/)

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Another World

My son James, who is all of five years old, has a wonderful imagination. When he’s lying in bed at night, after the lights have been turned off, I lie down beside him and as he snuggles up against me, he and I come up with bedtime stories. Well, James comes up with the basic plot, and I just turn said plot into a coherent tale.

Here is last night’s story:

Once upon a time, there was a little boy whose name was James. James was a very good boy who loved his family, did a great job putting his toys away at the end of the day, and gave lots of hugs to his big brother George.

And so one day a giant magic toucan came to see James. The magic toucan said, “James, you have been a very good boy. You ate all your dinner and put your toys away, and you’ve been super-nice to your brother. And so I am going to take you on a special trip.”

James climbed onto the toucan’s back, and the toucan took off and started flying. Together, James and the toucan flew over the fields and oceans, going higher and higher into the sky. They went so high that they went all the way into space. But James was not afraid. The toucan was a magic toucan and he would keep James safe.

After flying for a long time, James and the magic toucan landed gently on another world. It was a planet of brilliant green grass that was soft to walk on, white beaches where the sand wasn’t too hot, and blue, blue seas. There were beautiful flowers and many, many butterflies of all colours. Even though it was daytime on this world, when James looked at the sky he would see twinkling stars that looked like diamonds, and far, far away, he could see the Earth that he had just come from.

On the grass there was a picnic table made of gold, and on the table there were all of James’ favourite foods. There was pizza, and sandwiches, and chicken nuggets, and fruit, and ice cream. There was apple juice, milk and hot chocolate.

As James looked at the picnic table, he heard the sound of children laughing, and then he saw his friends running towards him. James and his friends sat down at the table and ate the delicious food, and drank the delicious drinks. As they ate and drank, they talked and laughed and had a great time together.

When the meal was done, James and his friends went to play on the beach. They frolicked in the water and built magnificent sand castles. They ran around, playing tag and having races.

All the time, the magic toucan was there, making sure the children were safe and having a good time.

Eventually, it was time for James to go home. He said goodbye to his friends, and then the magic toucan took James around the corner, where James saw the biggest slide he had ever seen. The slide had walls going all the way around, and little windows in the walls.

James climbed into the entrance of the slide, counted to three, and off he went! Down, down, down the slide went, turning this way and that. James had a fantastic time on the slide, and he looked out of the little windows as he went down. The slide went all the way back down through space, and ended – in James’ bedroom!

When James came out of the bottom of the slide, he landed right in his bed, and his Mommy was there to put the blankets over him and tuck him in. James was so tired from his adventures, and he drifted off to sleep and had beautiful dreams about all of the wonderful things he had seen and done.

The end.