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An Unexpected Treasure

May 21, 2013 By

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While I’m waiting impatiently for my coffee machine to work its magic, my son suddenly appears by my side.

“Little pig, little pig, let me in!” he says.

I know the drill. I’ve done this enough times. “Not by the hair of my chinny chin chin!” I reply.

“Then I’ll HUFF! And I’ll PUFF! And I’ll BLOW your house in!”

He draws in an enormous lungful of air and then blows mightily in my direction, while I pretend to fall backwards from the force of wind.

Like many kids with autism, my son George has never really been one for stories, but from time to time a story comes along that really captivates him. The Brown Bear, Brown Bear books fell into this category when he was younger, and he still occasionally returns to them. The current flavour of the month, though, is The Three Little Pigs. George takes great pleasure in watching YouTube videos of the story, and quite significantly for a child with autism, he likes to role play some of the scenes.

By coincidence, The Three Little Pigs was the central activity of a training course I attended last week. The course was about Agile project management, and the theory was covered on the first day. Day Two was given over to a practical application of the theory. We were divided into teams and given the task of using Agile project management practices to make a comic book depicting the story of The Three Little Pigs.

The process was fun and interesting, and definitely helped highlight the ideas behind Agile project management.

The end result was pretty much what you’d expect from a group of five IT types, none of whom can draw to save their lives. Let’s just say that none of us will be leaving our day jobs anytime soon.

Since I had played the role of “product owner” during the exercise, and since my team-mates know that I am the mother of young children, I was allowed to keep the comic book we made at the end of the training. When I got home, I put the book on my desk, and George immediately pounced on it.

“The Three Little Pigs!” he said excitedly. And he started paging through the book, reading all of the words out loud in his sweet lyrical voice. When he got to the end, he took the book to his computer, clicked onto a Three Little Pigs YouTube video, and read the book while the video was running. During dinnertime, the book was beside George’s plate on the table. At bedtime, it was taken to his bed and stashed under his pillow.

While George was sleeping, I managed to sneak the book out from under his pillow so that I could reinforce the makeshift binding that was beginning to come apart from overuse. I put the book back where I had found it, and it was there for George in the morning.

George doesn’t care that the pages aren’t all quite the same size, that the pigs look more like cats and that the wolf looks more like a horse. All he sees when he looks at the book is a treasure to be enjoyed over and over again.

The training course did a great deal for me and my professional growth.

It has done a lot more for the happiness of one child.

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

Filed Under: autism, Comic Book, Stories, The Three Little Pigs Tagged With: , , , , ,
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2012: My Year In A Nutshell

December 28, 2012 By

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.)

Filed Under: 2012 Year in Review, Children, running, Work, Writing Tagged With: , , , , , , ,
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Dear George

August 28, 2012 By

For the last week, I have been participating in the WEGO Health “Advocating for Another” challenge. Life got in the way of blogging over the last few days, so I am a day behind.

Yesterday’s prompt: When I was your age… – Write a letter to your child/ren starting off the with the phrase “When I was your age…” share a story of your own with them.

Dearest George,

When I was your age, I was very much like you. I had the same shyness, the same difficulty with speech, the same awkwardness around people I didn’t know. Learning was difficult for me until someone realized that I was smart but couldn’t learn in the same way as other people.

The world was a different place then, when I was an eight-year-old girl. In the late 1970’s, there was no Internet, so my parents couldn’t Google my symptoms. While diagnoses like autism existed, they were not very common, and not easy to come by unless the doctors knew exactly what they were looking for.

Throughout my childhood, I was sent for tests and assessments, but the most my parents were ever told was that I had “learning disabilities”. No-one was really sure what that even meant.

Like you, I loved books. I remember the summer I learned how to read. It was as if a door to a whole new world had opened to me. My newfound love of reading was both a relief and a source of worry to my parents. On the one hand, I could read, and this is something that everyone wants for their children. But on the other hand, the more I delved into the world of books, the more I withdrew from the world I lived in.

In spite of my rough beginnings, I turned out OK. I graduated high school, got myself a university degree and some post-graduate qualifications. I have a reasonable career, and most important of all, I have my family. You, your dad, and your brother.

You see, even though teachers and doctors didn’t really know what to do with kids like me, I was lucky enough to be part of a loving, supportive family.

My dad was always there for me to talk to, anytime I needed. He was my kindred spirit in many ways, sharing my love of reading, and later, my enthusiasm for running. He was like my rock of support, something that would never waver in the harshest of storms.

My brother and I fought like cat and dog, but in the end, we would have moved the earth for each other. God help anyone who hurt my brother’s little sister.

And my mom, your granny – she was a pillar of strength and support for me. She never doubted that I was capable of succeeding in life, and she helped steer me in the right direction. She worked tirelessly with me, making sure I was doing my homework, reading with me, being my advocate at school.

I often had conflicts with all of the members of my family. There were times when I wanted to run far, far away.

But there was never a time when I doubted that my family loved me and were there for me. When things got stormy, I always knew that the storm would pass and everything would be OK.

This is what my hope is for you. Parents and kids argue. Brothers fight. All of that is part of life. But I hope you know that no matter what, you are loved more than you could possibly know.

Please know that we are here for you, and always will be. I hope that can be at least half the mother to you that my mother was to me.

I love you always,

Mommy

(Photo from Kirsten Doyle’s archive of childhood pictures)

 

Filed Under: autism, Childhood, family, Learning Disability, parenting, WEGO Health Tagged With: , , , , , , ,
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Emerging Into The World Of Books

May 30, 2012 By

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

My younger son James was just over a year old when his big brother George was diagnosed with autism. As we adjusted to our new reality and tried to figure out what we were supposed to do for George, we anxiously – almost obsessively – watched James for signs of a delay. We scoured developmental checklists and asked George’s speech therapist how James’ speech should be progressing.

Thanks to our family doctor’s initial refusal to give us a referral, George’s diagnosis came a full year after it should have. Every time I thought about the year of missed interventions, I felt sick. I did not want history to repeat itself: if James had autism or anything else, I wanted to know about it right away.

Fairly early on, it became apparent that we didn’t have anything to worry about, at least from an autism point of view. James’ speech development was slightly ahead of the curve. He hit the “terrible twos” right on target, and his interactive play skills showed up right when they should have.

When James started going to school, it felt kind of strange to just install him in a regular classroom instead of having to go to special ed review meetings and haggle over the wording in IEP’s (Individual Education Plans).

School was not without its challenges for James, though. In Ontario, the age cutoffs run on the calendar year. Children start Junior Kindergarten the year they turn four, whether they celebrate their birthdays in January or December.

James, being a Christmas Day baby, was very young when he started school. He was almost four months shy of his fourth birthday, by far the youngest and smallest kid in his class. He had not developed the coping skills that most of his classmates had, and for the first few weeks he cried almost every day.

The Kindergarten teacher was a kindly man who took James under his wing during that initial period of adjustment. He made sure the other kids weren’t too rough with him, and found imaginative ways to help James not only adapt to school, but to enjoy it. James adored the teacher, and by Halloween of that year, he looked forward to going to school every day.

Along with a number of his classmates, James suffered a setback when the teacher unexpectedly died just before Christmas of that year. He didn’t even really know what death meant, and he seemed to take it a bit personally that the teacher had “left” him.

But James is as resilient as the next kid, and he bounced back. By the time he reached the beginning of Grade 1 he was on track again.

Or was he?

Shortly after James started Grade 1, I noticed that his reading did not seem up to scratch. It’s not like I was expecting the kid to read War and Peace, but he was not mastering even the most basic of words. He was almost six and could do little beyond identifying the letters of the alphabet, whereas George had been reading fluently by the time he was four and probably would be able to read War and Peace.

James’ inability to read was not for lack of trying. The poor child tried gallantly to make sense of the strings of letters. I started wondering if he had dyslexia, like his dad. If this was the case, I wanted to know right away, knowing that early intervention would be the key to success.

I spoke to James’ teacher, who confirmed that he was reading below grade level.

“Let’s see where he’s at by the end of this school year,” she advised.

Immediately, I balked, remembering how George’s autism diagnosis had been delayed because of a doctor who said something very similar. I told the teacher why I was reluctant to procrastinate, and she was quick to reassure me.

“Trust me,” she said gently. “Many first-graders don’t really get reading until close to the end of the school year. And remember, if James had been born just a week later, he’d only be in Kindergarten right now.”

Where every fibre of my being had known that our family doctor was wrong about George, something told me to have faith in James’ teacher. And so I waited.

Within weeks of that conversation, James was starting to make progress – not in giant leaps, but in baby-steps. He was reading simple familiar words. It was highly encouraging, although he still got frustrated when he couldn’t figure out the longer words.

One day about two weeks ago, James’ teacher excitedly pulled my husband to one side when he picked James up from school.

“James flew through his spelling test today and he got them all right! I think something may have clicked!”

James himself was glowing from his accomplishment. All of a sudden, he had the confidence to really try to read. He started spelling words like Wednesday and vegetable. He developed a sudden interest in making words with George’s alphabetic fridge magnets (much to George’s chagrin).

James is still reading slightly below grade level, but it is increasingly likely that he will catch up by the time school lets out for the summer. His teacher was right on the money.

And I get to celebrate the accomplishments of not just one child, but two.

I feel like the luckiest, proudest mom on the planet.

(Photo credit: http://www.flickr.com/photos/bagelmouse/4700001481. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, autism, Children, Dyslexia, Education, Progress, Reading, School, Special Needs Tagged With: , , , , , , , , , ,
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Autism And The Art Of Conversation

May 17, 2012 By

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

Every night, I give my older son George a piggy-back ride to bed. These days are numbered, of course. George is almost nine and he’s all arms and legs. Someday soon, he will too tall and heavy for me to cart around on my back. For now, though, I treasure these last days of being able to pick up my son.

We get to his room, where I dump him unceremoniously on his bed. He tucks himself in while I turn off the light, and then I lie down beside him. For the next few minutes, it’s just him and me, alone in the entire world.

We talk. I ask him questions. He answers them.

Who does Mommy love? She loves George.
Who does George love? He loves Mommy.
How do you feel? Happy.
Did you have a nice day? Yes.
Where did you go? School.
What did you do there? Math.

Always the same questions. Always the same answers.

I follow this ritual for the sense of closeness between me and my son, because it’s a comforting part of our time together. I also do it to help him practice the art of conversation. His verbal communication skills are worlds behind those of typical kids his age. He knows how to talk, how to make requests and the occasional joke. He is starting to make the odd remark for social purposes, and not just when he needs something.

But he does not know how to have a conversation. So I am teaching him.

When George was first diagnosed with autism, he did not know how to point. Over a period of eleven painstaking months, during which I followed the same routine every single night, no matter how futile it seemed, I taught him how to point. I still cry when I think of the first time I was rewarded with him pointing independently.

If I could teach him how to point, surely I can teach him how to have a conversation. After all, they are both forms of communication, right?

From time to time, I switch up the questions during our nightly routine, and ask him something else. When I do that, he never answers the question I ask. He gives an answer to the question he was expecting. I don’t mind. It just shows that he’s not yet ready to move to the next level. There’s no rush. I can wait. It will happen when he’s ready for it to happen.

It’s OK that he has memorized the sequence of questions and answers. Children learn to read in much the same way, rote-repeating sentences that they have heard many times, before making the connection with the printed text. There is every reason to believe that George’s relationship with conversation could evolve in much the same way.

While I’m helping him learn a skill that will be of value to him for his whole life, I am treasuring those nightly moments we spend together.

(Photo credit: Kirsten Doyle)

Filed Under: 2012 Wordcount Blogathon, autism, Communication, Conversations, Moments, Routines, Speech, Speech Delay Tagged With: , , , , , , ,