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Merry Christmas And Happy Birthday

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Once upon a time, on Christmas Day, a child was born.

No, this is not a story about Jesus. Apparently, historians haven’t been able to determine exactly when Jesus was born. We just celebrate his birth on Christmas Day because it was a popular day for pagan celebrations.

The baby in my story, who was actually born on Christmas Day, is none other than my younger son James. After keeping me waiting for more than a week past his due date, he came flying out like a cannonball eight Christmases ago, and he hasn’t stopped since. Maybe he can’t walk on water or turn water into wine, but he has definitely added a special kind of energy and excitement to my life.

He has also made birthday celebrations a little challenging, simply because of the day on which he chose to make his very loud arrival. On the one hand, we feel that we need to separate his birthday from Christmas, so that his birthday can get the attention it deserves. On the other hand, we want to celebrate his birthday on the actual day of his birthday.

Over the years, we’ve gotten better and better at this birthday-on-Christmas thing. We divide Christmas Day in half and do Christmas stuff in the morning. Then we have lunch, and from that point the rest of the day is devoted to James’s birthday. We give him birthday presents and have cake, just the four of us.

The full-on birthday parties that include James’s friends have, until now, happened in early December. This year, I decided to change the formula and have the party in January, after the actual birthday. And that is how, three days ago, I had a house full of energetic boys.

The party was a resounding success. For most things, I took the easy way out: pizza and chips for lunch, and disposable dishes so I wouldn’t have to spend all night washing up. I invited the kids’ respite worker – a 17-year-old boy who the kids absolutely adore – to come and run the activities. I got a pinata and some prizes, and goodie bags for all of the guests.

As I do every year, I worked very hard on the cake. For both of the boys, I do theme cakes based on whatever they are into. George has had Bob the Builder, Mr. Potato Head and Spongebob Squarepants. James has had Thomas the Train, Lightning McQueen and Ben Ten. This time round, it was a Beyblade cake. I was up until midnight the night before the party, mixing icing of different colours and meticulously drawing out the design on the cake. I looked like a mad scientist, with my hair all wild and bowls of red and blue and grey icing surrounding me.

The end result was pretty much what you would expect from someone who knows squat about decorating cakes, but I was pleased with it. More important, James’s face lit up in delight when he saw it, and his friends were saying Oooooooooh! and Cool! The cake was clearly and instantly recognisable as a Beyblade cake, and that was really all that mattered to me.

That and the fact that the kids had an amazing time. We had just the right number of kids, and the activities flowed at just the right pace. Even George, whose autism frequently makes him retreat from things like this, was happy to be among all of the kids, even if he didn’t actively participate in a lot of the proceedings.

The birthday boy was happy, and he felt that he got the birthday he deserved.

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

 

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What Do You Tell A Child When Another Child Dies?

 

Luke

Luke

Last weekend, I received word that a friend’s seven-year-old son, Luke, was in ICU after a near-drowning incident. I kept near-constant vigil at my computer during my waking hours, anxiously waiting for updates, and when I got the news that Luke had died, I took it very hard. As a human being, as a parent, as the mother of a seven-year-old boy – this tragedy hit very close to home.

As I have tried to make sense of the emotions that have been swilling around in my head all week, I have grappled with the question of what to tell my younger son, James.

The concept of death is not new to James. He got a rude introduction to it in Kindergarten, when his teacher died of pneumonia. The teacher had been very popular among the kids; James had absolutely adored him, and had a hard time understanding that he’d never see him again.

In the three years since then, he has developed a reasonably healthy attitude to the fact that people die. He asks about his grandfathers and how they died, and he talks about angels and souls and stuff like that. He is sad when people close to us die, but he accepts that it is part of the circle of life.

This is different, though. Old people dying is part of the circle of life. Children dying is an idea that just doesn’t fit. The mere thought of it has a jarring effect, as if you’re listening to soft classical music and hear a sudden blast of ear-splitting heavy metal. I wasn’t sure if James was ready to be introduced to this concept, especially since he had never met Luke.

Just as I had decided not to tell him, he came up to me as I was looking at a picture of Luke that his mother had posted on her Facebook wall. He asked me about the little boy in the picture, and I found myself telling him that Luke was now an angel. This led to a discussion that was hard for both of us.

For all his bull-in-a-china-shop approach to life, James is a sensitive child with a natural sense of empathy, and he was genuinely sad as he looked at Luke’s picture. He talked about how he’d never get to play with Luke, and he expressed concern for Luke’s mother.

“She must be so sad,” he said. “Is she going to be OK?”

I told him that yes, Luke’s mother was very sad, and I assured him that she had lots of people around her who would make sure she was OK.

There was a pause, and then he said, “Mommy, if I died, would you be OK?”

I couldn’t answer him. I was too busy trying to hold my rapidly dissolving composure. I just held him as close to me as I possibly could.

A few minutes later, his little voice piped up again.

“Mommy, I’m scared. Kids can die, and there are so many ways to die.”

This was a tough one. How was I going to strike the balance between realism and reassurance? I couldn’t say, “Don’t worry, it won’t happen to you or your brother”, especially since this whole discussion had arisen from an unexpected tragedy. And I couldn’t say, “Yes, accidents can happen at any time”, because that would freak the poor child out and make him afraid of leaving the house.

And so I decided to focus on probabilities. If we only cross the street when the pedestrian light is green, there’s far less chance of being hit by a car. If we don’t answer the door to strangers, they won’t kidnap us. If we eat the right foods and run around in the back yard every day, we will get sick less often and we’ll get better faster.

In other words, staying safe and healthy does not guarantee that something won’t happen, but it does vastly improve our chances. It’s good to be cautious and mindful of potential danger, but we have to live our lives.

As I spoke to James, his fears seemed to ease. Since then, he has returned to the topic a few times, and as hard as it is, I am glad that the original discussion opened a door for him to talk about a subject that is important.

Later on that day, James came up to me and said, “Mommy, I’m still sad for Luke’s mommy, but I’m not so worried about her anymore.”

“Why is that?” I asked.

“Because Luke is still alive in her heart, and he can hug her from the inside.”

This is an original post by Kirsten Doyle. The picture of Luke is reproduced with the kind permission of Janice Zimmerman.

 

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I Feed My Kids McDonalds, And 9 Other Confessions

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During the first two days of my firstborn child’s life, as I lay in hospital with nurses bringing me food and taking the baby to the nursery so I could get some sleep, I had daydreams about how the whole parenting thing would go. I would breastfeed for a full year, and as the baby grew older, I would raise him on a diet of nutritious foods. I would interact with him, play with him, talk to him – he would not need to watch TV. I had visions of lovingly picking him up whenever he cried, never letting him sit for long in a wet diaper, reading to him every day right from the time we brought him home…

I mean, good parenting was just common sense. How hard could it possibly be to be a model mom?

It turns out, very.

What I failed to recognize in those early weeks was that there was no way I could completely give myself over to parenting. There were going to be times when I would have to do other stuff, like laundry, vacuuming and personal hygiene. And let’s face it, isn’t parenting supposed to be at least partly about the fun stuff, like letting your kid smear chocolate cake all over his or her face?

So here are some “confessions” – and I put that word in quotes because it implies wrongdoing that I do not believe I am guilty of.

1. I feed my kids McDonalds. Not every day, obviously, but from time to time I let them eat junk food.

2. I often let my kids watch TV because it’s convenient for me. They’re good at self-regulating their TV time so I really don’t care about that “Don’t let the TV be your babysitter” thing.

3. I yell at my kids. It’s not like I’m constantly screaming, but when they drive me insane I just cannot do the Zen-type of parenting that other moms seem to be capable of.

4. I sometimes reward my kids with material things. I’m not too concerned about whether this is teaching them to value the wrong things.

5. If my kids don’t eat the meals that are put in front of them, I don’t give them an alternative meal. If they go to bed hungry, so be it.

6. I don’t play with my kids every time they ask. If I did, I would never get to sit down for a cup of coffee, write a blog post or take a shower.

7. I don’t always lead by example. I’m completely fine with my kids learning that they have to follow certain rules that do not apply to adults.

8. It’s not a frequent occurrence, but sometimes my husband and I have arguments in front of the kids. It doesn’t bother me: on the contrary, they are learning that every healthy relationship includes conflict and the resolution thereof.

9. I love my kids unconditionally, but there are times when I don’t like them very much. Frankly, they sometimes act like little jerks.

10. I sometimes lock myself in the bathroom to avoid having to share chocolate.

Do these things make me a bad mom? Or do they simply make me human? Do you have any confessions of your own to share?

(Photo credit: Kirsten Doyle)

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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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The Gift Of Summertime Chaos

The kids enjoying summer fun

The kids enjoying summer fun

Since entering the ranks of the unemployed two weeks ago, my daily routine has changed dramatically. The idea of abandoning routine altogether is tempting but dangerous. I am forcing myself to wake up at the same time, get dressed in respectable clothes, and do productive stuff. I am keeping more or less the same working hours that I did before, only without the long commute. Being unemployed is surprisingly hard work.

That being said, I am enjoying some flexibility that I didn’t have before. I can go running without getting up at an ungodly hour of the morning. I can wear sweats every day. They’re nice sweats that I’m perfectly comfortable being seen in public in, but they’re clothes that wouldn’t be allowed at my previous place of work. I can turn on the TV when I want to take a break.

Above all, I am making the most of getting time to myself, without coworkers, kids and the husband. Don’t get me wrong, I liked my coworkers, and I love my kids and my husband. But I kind of like myself too, and I’m finally getting to spend more time with myself.

That will be changing very soon, of course. The kids only have two and a half weeks before school lets out for the summer, and at that point, my period of blissful solitude is going to come to an end. I will still keep my working hours as best I can, but I anticipate frequent breaks – both voluntary and involuntary.

The kids generally never have a problem with the transition from school to summer. I try to keep the semblance of a routine in place for them. They get up at more or less the same time each day, they are expected to get dressed instead of lounging around in their PJ’s, and things like mealtimes, snacks and bedtimes remain unchanged. We do plan some activities for them over the summer, but for the most part, their time is their own.

The bigger challenge comes when it’s time to go back to school in the fall. At least, it’s a challenge for George. James takes to the new school year just fine. He is excited about seeing friends who have been away for the summer, and he likes the thrill of being in a new grade.

For George, though, it is very difficult. He doesn’t mind school too much, and going from this school year to the next, he will be in the same room with the same teacher and for the most part, the same kids. But the summer break is long, and by the time it’s over, George has to be reacquainted with the whole school routine. It’s hard for a child with autism who likes to have things just so.

One of our most important summer activities is therefore the back-to-school social story: a personalized book that tells the story of George getting onto a bus and going to school. We read the book with George over and over during the last weeks of the summer break, with the hope that the new school routine won’t come as a complete surprise to him.

And what does the summer mean to me, now that I will have to spend time focusing on the next steps in my professional life? It means additional chaos, for sure. It means that I will have to repeatedly stop what I’m doing to wipe up a spill, mediate a dispute or set up a game in the back yard.

It means that I will be here, with my children. It will be the best summer ever, and I cannot wait.

 

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What I Hope

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I hope that George knows I will always support him in whatever he wants to do, and that I will never see his autism as an obstacle.

I hope that when I am weathering the challenges of autism with George, I am acting in a way that helps him instead of hindering him.

I hope that James knows I understand how tough it must be, being the sibling of a child with autism.

I hope that James knows how immensely I value him as an individual in his own right, and that he is not defined by virtue of being George’s brother.

I hope that George knows he is not defined by autism, but that autism is just one part of who he is.

I hope that the moments of weakness that I have – those times when my desperation and sense of being overwhelmed spill over – do not undermine my kids and cause them lasting damage.

I hope that my better moments – the laughter and the hugs and the words of encouragement – build up their confidence and self-esteem.

I hope that I can always be the kind of autism mom who never gives up a fight, no matter how hard and scary it can be.

I hope that when I talk to strangers about autism, or when I write about it, I am doing so in a way that will help both of my kids as they navigate their way through life.

I hope that I will have the courage to stand up to anyone who ever tries to hurt my kids.

I hope that my kids know that when autism parenting just gets too hard for me to handle and I need to spend time by myself, it’s not because of them. It’s because of my own fears and insecurities that I want to protect them from.

I hope that my kids know I love them without reservation, without boundaries, and beyond the ends of time.

(Photo credit: Kirsten Doyle)

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12 Reasons You Know You’re An Autism Parent

SAMSUNG

1. Your son will defend to the very last his right to wear his hat at all times. Even while he’s sleeping.

2. When you’re cutting your child’s nails the neighbours come over to ask whose kidney is being forcibly removed.

3. If the coffee machine is moved one gazillionth of an inch to the left, World War III becomes a real possibility.

4. Your nine-year-old can fix any computer problem you throw at him in about three seconds.

5. You want to ask the Mythbusters team to investigate whether “full night’s sleep” really exists.

6. Your child has 237 Mr. Potato Heads and they are lined up according to the colour of their hats.

7. The transition from winter clothes to summer clothes and vice versa has to be planned like a military strike.

8. Your son doesn’t have a teacher, he has a team.

9. You bond with your kid by stimming with him.

10. You throw a party to celebrate when you catch your child telling a lie.

11. You throw a party to celebrate when your child drops an F-bomb in the right context.

12. If your kid has to give a urine sample, he then thinks he has to pee in a jar every time.

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Autism and Bedtime: 11 Steps For Not Going Completely Insane

 

The Hyperactive Neurotypical Child

Since the beginning of time, when Adam and Eve got talked into eating an apple by a psychotic snake, women – and to a lesser extent, men – have been pondering the same question. It is a question that crosses all geographic, ethnic, cultural and religious boundaries, one that unites mothers in a way that nothing else can.

How am I going to get this child to sleep?

When there’s a child with autism in the family, that question crops up with frightening regularity. It becomes an automatic response to just about everything. Here’s a typical conversation between husband and wife while the kid with autism bounces on the ceiling like a yo-yo:

Husband: What should we have for dinner tonight?

Wife: How am I going to get this child to sleep?

Husband: Ummm. I don’t know. So, dinner. What do you think? Chinese takeout?

Wife: Sure, sure. How am I —

Husband: Do you want chop suey or chow mein?

Wife (sobbing): How am I going to get this child to slee-eee-eeeeeep?

Husband (fumbling awkwardly with takeout menu): OK, I’ll just order something.

For you autism parents who are feeling a little desperate, I offer you my Bedtime Survival Tips.

1) Make sure you have wine. You won’t need it for the bedtime ordeal itself, but it will a great reward for you to give yourself if when the kids get to sleep.

2) About two hours before bedtime, sweetly ask the fruits of your loins to put on their pajamas. You’ll have to ask both of them about a gazillion times before they comply, so the more lead time you give yourself, the better.

3) An hour before bedtime, calmly talk to the Hyperactive Neurotypical Child and ask him to put on his pajamas. If When he argues on the grounds that his brother doesn’t have pajamas on, explain to him that you need him to lead by example. Bribe him with a donut.

4) Send your husband out to buy donuts.

5) Repeatedly tell the Autie to put on his pajamas, with your voice gradually increasing in pitch and panic. Right before you hit your breaking point, sob with relief when you hear your husband return with the donuts. Armed with your confectionary currency, coax your kids into their pajamas and then give them their reward. Fail to care when they wipe their gooey hands all over the fronts of their nice clean pajamas.

6) Sergeant-Major the kids into the bathroom one at a time to pee and brush their teeth. Do the Autie first. If you do the Hyperactive Neurotypical Child first, the Autie will head for the hills and you won’t see him until next Christmas.

7) Get the kids their bedtime milk. Remember to break a Melatonin capsule into the Autie’s milk, otherwise he will spend the entire night gleefully and vigourously rubbing the top of your head.

8) Channel the days when you used to herd cats and get your kids moving in the general direction of their rooms. Naively believe the Hyperactive Neurotypical Child when he says he’ll quietly try to go to sleep.

9) Kiss the little darlings goodnight and retreat into the living room. If When one of them makes a sudden appearance by your side, calmly shepherd them back to bed.

10) Repeat Step Nine 84 times.

11) When there has not been any activity for three geological eras, you can safely assume that the kids are asleep. Pour some of the wine from Step One into a glass and drink. If you’re feeling really frazzled, cut out the middleman and just drink straight from the bottle.

(Photo credit: Kirsten Doyle)

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A Letter To My 2013 Self

Dear Me,

This letter comes to you from exactly one year ago. Today is December 29, 2012, and I wonder what you are up to, there on December 29, 2013. Perhaps you’re sitting in this same hotel room I’m in now, reflecting on the year just past and the year that is to come.

What have you accomplished in the last year? You set some pretty lofty goals for 2013. Which of those goals have you accomplished? Which ones did you modify as the year went on, and which ones did you just decide to ditch altogether?

You had a phenomenal running season in 2012, and you were hoping to surpass that in 2013. Did you? Did you beat 2:15 in a half-marathon, and have you broken that elusive one-hour mark in the 10K?

How is the long-term plan to run a marathon in 2015 going? Are you registered for the 2014 Around The Bay 30K? If you’re not, you should get on that soon.

How is work? I hope you have managed to hold onto your job in a time of great uncertainty and many layoffs. Are you making a reasonable supplementary income from your freelance writing?

Here’s a question I feel very weird asking: how is school? I would venture to say that no-one was more surprised than me when you decided to pursue post-graduate studies. By now, you should have completed two courses and you should be preparing for your final exam in a third course. I feel very excited to be embarking on this. A year in, I hope some of that excitement still remains.

And now for a tough question. Have you managed to get a handle on your eating difficulties, or do you still have this intensely uncomfortable relationship with food? You have spent virtually all of your adult life vacillating between eating disorders – it’s about time you sorted this out once and for all. Maybe something in the last year has helped you.

What’s up with the kids? For you, one year in the future from now, George is 10 and James is 8. Did you try the Talkability exercises to get George conversing more? Have you been reading every day with James to help him with his spelling? Did you get them both into swimming lessons like you’ve been wanting to?

And what are your goals for 2014? No matter how good or bad 2013 was to you, I hope you never lose the ability to have hopes and dreams for the future.

Regards,|
Your Younger Self

(Photo credit: Somegeekintn. This picture has a creative commons attribution license.)

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2012: My Year In A Nutshell

2012 was an eventful year for me. It featured some highlights, and some definite lowlights.

January… I receive a new training plan from my friend Phaedra, who I have enlisted as my coach for the coming year. My training does not start well, though: on the day I am supposed to do my first run in the schedule, I come down with the mother of all stomach bugs.

February… I receive a devastating phone call: my beloved aunt Ann has died in a freak accident. I fly to South Africa to lend support to my mom and say my farewells to Ann. It is intensely emotional. I cannot believe that someone who has been such a big part of my life since I was born is no more.

March… I am back from South Africa, and my training can finally get underway properly. I feel like I am back on track, and ready for my first race of the season.

April… I run two races and make personal best times in both of them. On the same day as the Toronto Yonge Street 10K, another person dear to my heart passes away. Margaret, who was a phenomenal actress – a far better Shirley Valentine than the original Shirley Valentine –  has succumbed to cancer.

May… I survive a major organizational restructuring at work. I am shuffled to a new manager, but in an environment where people I know well and work closely with are being let go, I manage to keep my job.

June… I am admitted to the Professional Writers Association of Canada (PWAC). This is a big, big deal for me. I want to get into the freelance writing business, and this affiliation will help me enormously.

July… The kids are done with school. James has finished Grade 1 and George has completed Grade 3. We find a rare gem: a reliable and dedicated respite worker. The boys take to her quickly. They respond well to her kindness and natural intuition with kids.

August… I run the Midsummer Nights Run 15K on a course that has been my personal nemesis. Instead of crashing and burning like I have in every other race along the Leslie Street spit, I find that thing known to runners as The Zone. I run a great race and beat my previous best time by 14 minutes.

September… The kids go back to school, and although I worry about the transition for both of them, they adjust well to being back. At work, I manage my first implementation since being assigned as Implementation Lead for my project. There are some glitches but it goes well. It counts as a big virtual checkmark against my career. George turns nine. Where has the time gone?

October… This is an eventful month. I run my fourth annual autism run, raising a personal record amount for the Geneva Centre for Autism and running a personal best half-marathon time. The following weekend, I attend my first Blissdom conference and make many, many new writer friends. And the week after that, I attend the Geneva Centre for Autism symposium, and learn a ton of new things.

November… I meet with both of the boys’ teachers. George is progressing as well as he can at school, considering that he is a child with autism adjusting to a completely new school environment. James is struggling with his reading, and a plan is put in place to help him.

December… I celebrate completing my 43rd orbit around the sun on the same day we throw a birthday party for James. I run my final race of the season – the Tannenbaum 10K – and have a great deal of fun. I get all teary-eyed as I watch live-streaming of my friend Margie’s graduation that she worked so hard to accomplish. The world fails to end. James turns seven. Where has the time gone?

Some big things are in store for 2013. I have some lofty goals and I am quite excited to get started on them. I was going to make them a part of this post, but decided that 2013 deserves a post all of its own.

Watch this space to see what’s afoot for the New Year…

(Photo credit: Carlos Van Vegas. This picture has a creative commons attribution license.)