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beauty without limits

April 21, 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 21 – Health madlib poem: Go to http://www.languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.

When I read this prompt, I thought it would be easy. It turned out to be a lot more challenging than I had expected. The Madlib gave me a poem that was beautiful in some parts, nonsensical in others. I had to throw out the first couple of attempts, and I finally got something that I could edit into something I could like. As tough as this exercise was, it was a lot of fun. Everyone should give it a try!

quietly i have never run, softly beyond my heart
my son, your smile is full of love
in your most happy tears are things which surprise me,
on which i cannot speak because they are too deep

your beautiful look profoundly will move me
though i have tried to understand
you see things in ways that are beyond me
exploring your world thoughtfully, intensely

your potential reaches the stars and sun
i move my world for you so that you may fly
i cross the ocean for you to know no limits
your path is different and the road is challenging

nothing gets in the way of your growth
the strength of your shy wonder: my child
i smile at the beauty of your blond hair
your blue eyes bright and sparkling with life

i would run to the ends of the world for you
so the world can be yours
you are amazing: son, brother, friend
your heart is pure, your smile lights up the sky

By Kirsten Doyle with a little help from e.e. cummings

Filed Under: autism, Children, Health Activist Writers Month Challenge, life, Love, Poetry, Uncategorized, WEGO Health Tagged With: , , , , , ,
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23 Months In One Year

April 20, 2012 By

April 20 – Miracle cure: Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer.

Try as I might, I was not able to get this prompt to work for me. Therefore, I decided to use one of the bonus prompts that were provided at the beginning of this challenge.

Best doctor’s visit or hospital stay: What made it the best? The news you got? The nurse/doctor/surgeon you saw? The results?

On a cool Spring day in 2010, my husband and I drove George, then six and a half, to an appointment with a psychiatrist. The purpose of the visit was to get the results of the assessment that had been done six weeks previously.

The anxiety we felt went beyond normal parental angst. We were both remembering the assessment that had been done a year previously. It had not gone well. George had been agitated and distracted. He hadn’t settled, refusing even to take his coat off. Throughout the assessment he had underperformed on just about every task. In the next room, I had answered questionnaires, checking the “never” or “rarely” box to almost every question about George’s capabilities.

It had been a dismal experience, and the results had shown severe deficits. Now we were back, one year later, to see what quantifiable effects his first year of IBI therapy had had. He had shown almost no anxiety during the assessment this time, and the specialists had emerged smiling from the room, but we knew that we just had to wait and see the numbers.

When she greeted us, the psychiatrist was as charming and soothing as always. She ushered us into her office and gave George some markers so he could follow his favourite pursuit of scribbling on her white board. He surprised us all by writing lists of words instead.

The psychiatrist could tell that we were nervous, and she was kind enough to dispense with that beat-around-the-bush suspense thing that so many doctors seem to take an inordinate amount of pleasure in. She cut right to the chase.

“George has made phenomenal progress,” she told us.

She showed us reports and charts showing gains in almost every area: cognitive, language, fine motor, gross motor, emotional regulation, behavioural, daily living skills… What this child had achieved in the last year was off the charts.

It was literally off the charts. The psychiatrist showed us a graph showing percentiles of progress after one year of IBI therapy, and sure enough, George’s accomplishments went way beyond the right margin of the page.

In his first year of IBI – in a single twelve-month period – George  had made no less than 23 months worth of gains.

That was phenomenal. Far from following the usual model in which autistics develop relatively slower than typically developing children, thereby falling relatively further behind, George had developed at almost double the usual rate. He was still behind other kids of his age, but he was far less behind than he had been, and in some mathematical areas, he had actually started outperforming typical kids.

It’s like starting far back in the pack at a race and being way, way, way behind the leaders. And then, while the leaders maintain the same pace they started with, you put on a hell of a sprint. You probably won’t cross the finish line first, but instead of being twenty minutes behind the guy who wins, you’re only ten minutes behind.

Before getting these results, we had seen changes in George. Progress like that cannot go unnoticed. But it was wonderful to see it in numbers, to see visual proof of what our boy had achieved.

That day, my husband and I truly started to see possibilities for the future, and we made a promise there and then to help our son reach the stars.

(Photo credit: Kirsten Doyle)

Filed Under: Assessment, autism, Autism Services, Health Activist Writers Month Challenge, IBI, Not Giving Up, Progress, Psychiatrist, WEGO Health Tagged With: , , , , , , ,
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Dining With The Stars

April 19, 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 19 – 5 dinner guests: Who are five people you’d love to have dinner with (living or deceased) and why?

When I have people over for dinner, it’s always a very casual affair, from the planning right down to the execution. It usually starts when my husband or I casually mentions someone we haven’t seen for a long time. We call that person up on an impulse and invite them to come over that evening. And since we’re inviting this person, well, we may just as well invite that person. The more, the merrier, and all that. With the phone calls made, the husband goes out to buy alcoholic beverages to suit our guests’ tastes. I go wading in our big freezer and emerge with a giant store-made lasagna, those ones that take about seventeen years to defrost. I throw together a salad and make garlic butter for the bread. I’m not much of a cook, but I make a mean garlic butter. The guests arrive and we all dispense as quickly as possible with the business of eating. I get the kids settled into bed and then spend the rest of the evening drinking wine, which let’s face it, was really the whole point of having the dinner party.

My fantasy dinner party would have to be more carefully planned, simply because the people I would want to invite are kind of busy. You can’t just call them up and ask  them to show up at your house in the next two hours. You have to schedule their time, usually months in advance, and it’s a case of “your people calling their people”.

There wouldn’t be any frozen lasagna, and the whole thing would have some finesse to it. You can’t invite a guy like Nelson Mandela to your house and serve him frozen lasagna on the pretext of having a booze-up. No, I would hire a chef, a posh one who makes things normal people cannot pronounce and who knows what wine goes with what food.

My guests, assuming they all accepted the invitation (and, I mean, who wouldn’t?) would include the following five people:

Nelson Mandela. If you discriminated against most people throughout their early lives and then threw them into prison for twenty-seven years, they’d probably be a little bitter. It takes a very special kind of man to emerge from all of that and become a successful statesman, and to do it with grace, dignity and humility. Mandela is South Africa’s answer to the Royal Family, with one exception: everyone loves him, and with good reason.
What I have in common with him: we share a country of birth.

Terry Fox. The most iconic runner of all iconic runners, Terry Fox ran almost all the way across Canada with a prosthetic leg, while cancer was eating away at his body. His “Marathon of Hope” started a worldwide movement that continues to this day, more than thirty years after his death. If anyone had a reason to give up, it was him, and yet his absolute dedication to his cause and to his sport did not waver. His body was absolutely shattered, but his mind was super-hero strong.
What I have in common with him: I run for a cause.

Ed Mirvish. The world can be a peculiar place. Many rich people just want to get richer, regardless of the cost to anyone else. At the same time, a lot of the true humanitarians of the world are willing to give away what little they have for the betterment of their fellow man. Ed Mirvish was a rich old Canadian bloke with a landmark retail store and a near-monopoly on Toronto’s theatre industry. He had a truckload of money, and he kept giving stuff away to people who really needed it. While many rich people and corporations donate to charity for the purpose of making themselves look good in the public eye, Ed Mirvish did it because he really cared. You gotta love a guy who stands around handing out free turkeys to people who cannot afford Thanksgiving dinner – an annual tradition that has been continued in his memory.
What I have in common with him: I care deeply about making the world a better place.

Drew Barrymore. I’ve never been big on celebrities, but I confess to being totally in awe of Drew Barrymore. Like many people, I first saw her as the adorable child star in E.T. She shot to stardom so spectacularly as a child that her descent into a lifestyle of substance abuse almost seemed inevitable. It would have been so easy for her to live her life in the tabloid media by virtue of her addictions, but instead she went to rehab, sorted out her life, and established herself as an actress to be reckoned with.
What I have in common with her: I have overcome some intense challenges of my own – albeit ones of a different nature – instead of drowning in the events of the past.

Temple Grandin’s mother. Temple Grandin was a child with autism in the 1950’s – a time when autism was barely understood, much less known. She is now a highly successful adult, with a PhD in animal sciences. She done a lot of groundbreaking work in fields relating to animal welfare, and she is an outspoken autism advocate and educator. She puts much of her success down to her mother, who offered her unfailing support and mentoring throughout her childhood. It is a challenge to raise a child with autism in today’s world of IBI therapy and online support groups and autism advocacy everywhere. I cannot imagine what it must have been like for a mom back then, with far less knowledge and support to draw on.
What I have in common with her: I am the parent of a child with autism, who I would move heaven and earth for.

Who would be at your dinner party and why?

(Photo credit: http://www.flickr.com/photos/lisa_nichols/3288476050/. This picture has a creative commons attribution license.)

Filed Under: autism, Celebrities, Health Activist Writers Month Challenge, Overcoming Difficulty, Philanthropy, running, WEGO Health Tagged With: , , , , , , , , , ,
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Mother Knows Best

April 17, 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 17 – Learned the hard way: What’s a lesson you learned the hard way? Write about it for 15 today.

I first started having doubts about our family doctor when he kept telling us that there was nothing that could be done about my husband’s sciatica. It was a very disappointing thing to hear: although not a life-threatening condition, sciatica had been giving my husband a whole new kind of agony for a couple of years, and now we were hearing that he would have to live with it for the rest of his life.

It seemed improbable.  What about physiotherapy, or if we were really pressed, surgery? What about a simple MRI scan or a referral to a specialist?

But my husband’s family had been seeing this doctor for years, and they seemed to have complete faith in him. My husband was resistant to my suggestions to see another doctor.

A few months later, when I was hugely pregnant, I took my older son to the same doctor for his two-year check-up. All of the vital signs looked good. George was in healthy percentiles for both height and weight and he was not showing any signs of illness.

With the main purpose of the visit accomplished, I said to the doctor, “George isn’t talking.”

Indeed, George wasn’t talking. The only words that he used in a contextually appropriate way were milk, juice and jump. Like all new parents, I had practically memorized the developmental checklists, and I knew that George should be doing far more at this age.

The doctor asked a few questions, and then agreed that George did indeed seem to be delayed in his speech.

“But,” said the doctor, “The range of normal development is so broad, particularly where boys are concerned. I will give you some speech exercises to do with him at home, and we will see where we are in a year’s time.”

Every instinct I had was telling me that the doctor was wrong, that waiting was not the thing to do. I knew, had known on some level since George was an infant, that there was something wrong.

Instead of trusting my instincts, I listened to the doctor. I did the speech exercises with George, hoped against hope that he would simply open his mouth and talk one day, and then felt extremely guilty when he didn’t improve. Had I not done the speech exercises right? If I had spent more time on it would I have seen results?

At George’s three-year check-up I finally got a referral for a developmental assessment. When the autism diagnosis came in, all I could think of was how the doctor had told us to wait, and worse, how I had listened to a man I already had reservations about.

I thought about the year that George had lost because of this. The year of speech therapy and other autism-related interventions.

The guilt just about killed me.

And I swore that I would never, ever go against my “mother’s intuition” again.

(Photo credit: http://www.flickr.com/photos/truthout/3901813960/. This picture has a creative commons attribution license.)

Filed Under: autism, Autism Diagnosis, Autism Services, Doctor, Health Activist Writers Month Challenge, IBI, WEGO Health Tagged With: , , , , , , , ,
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Pinning Down Autism

April 16, 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 16 – Pinboard: Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them.

When I was pregnant with my older son George, I had to stop running because my sense of balance went pear-shaped. Over the next several years, I tried to get back into it but there was always something that stopped me. Injuries, time commitments, illness, you name it. One day, an email from the Geneva Centre for Autism got me going again. They were entering a team of runners and walkers in the Charity Challenge of the Scotiabank Toronto Waterfront Marathon/Half-Marathon/5K event. After briefly considering the 5K, I went for broke and registered for the half-marathon. The opportunity to do something for my son and the rest of the autism community turned out to be just the motivation I needed. Although I will be doing my fourth Run for Autism this year, that first finisher’s medal will always take up pride of place on my mantel. Every step I take on my autism runs I dedicate to my amazing son.

Einstein was a pretty awesome dude. As a child he was apparently not the sharpest crayon in the box, but his mom never gave up on him and he turned out OK. He made many discoveries, came up with theories that I cannot begin to understand, and said a lot of profound things. This one is my favourite Einstein quote. It is a perfect encapsulation of the idea that society is enriched by people thinking in different ways. George’s autism comes with all kinds of challenges. There are times when I want to cry with sadness or frustration. Some days are downright overwhelming. I often wonder if George will ever be able to communicate with other people. Despite all of the difficulties, though, George’s autism makes him think in truly unique ways. He can problem-solve rings around the rest of us just because he sees things in such different ways.

Autism is like a kaleidoscope. It can change and evolve over time. The behaviours and challenges exhibited by an individual with autism can be different from one day to the next. There are so many variables – adherence to regular routines, the presence or absence of loud noises, stress levels in the environment, even the weather. Not only does the real impact of autism change all the time, it is experienced in very unique ways by different individuals. I don’t know who it was that said, “If you’ve met one person with autism, you’ve met one person with autism.”

(To visit my Pinterest board, go to http://pinterest.com/running4autism/hawmc/)

Filed Under: autism, Communication, Health Activist Writers Month Challenge, running, Thinking Differently, WEGO Health Tagged With: , , , , , ,
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A Day In The Life

April 11, 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 11 – Theme song: Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?

I confess that I had no idea what to do with this prompt. My writing skills do not extend to the lyrics of songs. That is my husband’s arena. Therefore, for today, I decided to use one of the bonus prompts:

Daily schedule: Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

alarmclock

5:00  I wake up to the sound of the alarm on my phone. More often than not, I am on the futon in my living room with a small kid pressed up on either side of me (although it must be said that the small kids are getting less small by the day). Because I’m wedged in between my kids, I can’t simply grab my phone and throw it against the wall like I want to. It takes effort to extricate an arm. Often, as I’m reaching for the phone, I knock it off the table, and then I have to get out of bed – a supreme effort indeed – to pick it up and turn off the alarm.

5:15 I turn on my computer to check my email. I am dressed in my running clothes and I am waiting for the coffee to finish brewing. While I’m reading my emails my younger son wakes up. I get him a cup of milk and start preparing to leave, knowing that I will be delayed by my son’s constant chatter.

5:25  I kiss my older son goodbye. He is asleep, but he will know if I’ve left without kissing him goodbye. I field a gazillion questions from my younger son and eventually manage to escape. I sprint to the bus stop and make it with seconds to spare.

6:30  I arrive at work and head straight for the corporate gym in the bowels of the building. I dump my stuff in a locker, fill up my water bottle, and head out for a run. I’m still groggy and sleepy, but the first kilometre or so takes care of that.

8:00  I get to my desk, all showered and feeling good from my run. I drop my bag on my chair and go straight back out for coffee and a bite to eat. I bring it back to my desk and work until noon.

12:00 Lunch-time! I curse about having once again left my carefully prepared lunch in my fridge at home. I gather up my notebook computer, buy a random salad somewhere, and sit in the common room writing words.

12:30  Back to the grindstone.

2:45 Arrival of my mid-afternoon energy crash. I go out for coffee, and while I stand in the queue I stare at the display of donuts and cookies wondering if it would be OK for me to have one. By the time I get to the front of the line I’m so undecided that I don’t get anything except the coffee. Which is a good thing.

4:00  I pack up, log off, say my goodbyes to my co-workers and leave. I go to the subway station and position myself on the platform just where I think the train doors will end up. More chance of getting a seat that way.

5:30  I arrive home, lamenting the fact that once again, I did not get a seat on either the subway or the bus. I walk home from the bus stop, and stop to check the mailbox on the way home. I do so much stuff over the Internet these days that I hardly get any actual mail.

5:35  The husband and children, who get home before I do, have been standing at the living room window watching for my arrival. The husband opens the front door to release the kids, who run towards me in that joyous, unrestrained way that only children are capable of. I dump my bags, drop to my knees, and open my arms. My boys come hurtling into my arms and almost knock me backwards with the force of their love.  My cup overfloweth with happiness.

6:00 The kids were fed their dinner before I got home, and now the husband and I are cooking up something for ourselves. I enjoy the companionship as we chop vegetables together and chat about our days. I reflect on how fortunate I am to have a husband who supports me in my writing and my running, who accepts me for all of my weird little quirks, and who is the best dad ever.

7:00  Dinner has been cooked and eaten. I clean up the kitchen but don’t start the dishwasher – not yet. My older son, the one with autism, has a lot of angst where the dishwasher is concerned. I have only just gotten to the point where I can unpack and reload it without him completely melting down. Actually running it would be asking for trouble. Best to wait until he is asleep.

7:30  Bathtime for the kids. George goes in first, because he really doesn’t like being in a tubful of water. I soap him down and then, amid panicky cries of protest, I wash his hair. Like many autistics, he has a big problem with having his hair washed. James dives for cover, only emerging when George is safely out of the tub and in his pyjamas. James’ bath-time is a splash-fest. I have to keep a towel handy for myself, and I’m not even in the water.

8:30  The kids go to bed. George has done his homework (and got it right) in about three seconds flat. Bedtime milk has been consumed, stories have been read, hugs and kisses have been administered. I wait until George is asleep and then turn on the dishwasher. I make lunches for the following day and ensure that everyone has clean clothes to wear. I sit down at my computer and do whatever admin needs to be done.

9:30  My day’s work is done and now it’s time to reward myself. I pour a glass of wine, send my daily email to my mom, and waste time on Facebook. I complete and schedule any unfinished blog posts and start one or two new ones. Sometimes I abandon Facebook in favour of a nice soak in the tub. There’s something very decadent about sitting in a bubble bath with a book and a glass of wine.

10:00 I have a cup of tea with the husband and sigh dramatically as he channel-surfs. Why do men do this? Just as I’m getting into whatever happens to be on the channel gets changed.

10:30  I suddenly remember some crucial email or piece of admin that absolutely cannot wait until the following day. I turn on my laptop again to take care of it.

11:00 I fall into bed in a state of exhaustion, and fall into a fitful sleep that will, at least once, be interrupted by one of the kids needing something. Sometimes, I wake up to find one of them beside me. And I’m completely fine with that.

(Photo credit: http://www.flickr.com/photos/szift/3196084839. This photo has a creative commons attribution license.)

Filed Under: autism, Children, Commuting, Daily Schedule, family, Health Activist Writers Month Challenge, running, WEGO Health, Work, Writing Tagged With: , , , , , , ,
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A Letter To My Younger Self

April 10, 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 10 – Dear 16-year-old me: Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?


Dear 16-year-old me,

I am writing to you from 26 years in the future. I am 42 years old, and a lot has happened in the last two and a half decades. The world is a different place now, and I have grown up a lot since I was – well, you.

I don’t want to tell you too much about the next few years of your life, because as painful as some of it will be, it wouldn’t be right for me to change it. I am who I am today because of some of that stuff. You have to live through it, knowing that you will survive your worst times and come out stronger for it.

However, there are a few things you should know, that will make it a bit easier for you to navigate the next 26 years.

1) You are not fat, no matter what anyone tries to tell you. You are a beautiful young woman, and this body image problem that you have is just going to cause problems for you later in life.

2) When you go to that birthday party that’s coming up and drink a truckload of beers, Mom will smell your boozy breath from a mile away when she picks you up. Especially when you open your mouth to make lame excuses for why you’re tripping over your own big toes.

3) When they bring in the school’s first computer later this year, pay attention to it and learn how to use it. Computers will become a massive part of your life so you may as well start now.

4) That hairdresser appointment you have next week? For the love of God, cancel it. Believe me, you do not want a perm. It will take the phrase “big hair” to a whole new level.

5) If you meet a good-looking guy in the hallway of the medical centre, don’t talk to him. He’ll just cause trouble for you. Don’t fall for his flattery.

6) You’re allergic to mangoes. Like, seriously allergic. If you avoid mangoes, you will avoid anaphylaxis and a trip to an Israeli hospital where they’re very nice but don’t speak good English.

7) Things will happen during your University years that will be very hard on you. You will not be as alone as you will feel, and if you ask for help, you will get it. Don’t try to go through it alone.

8 ) Just because one therapist is mean and judgmental, that doesn’t mean they will all be like that. Don’t try to deal with depression alone for twenty years before you get help.

9) Find out as much as you can about autism and take your first child for screening as soon as you see the signs. The doctor will try to get you to wait for another year. Don’t listen to him. Threaten to sit in his office gathering dust until you get a referral.

10) Post-partum depression is a terrible, scary thing, especially when it goes undiagnosed for over a year.

11) Take care of your feet. You’re going to be getting plenty of use out of them. When you really get into the running, your feet will not be your most attractive feature. Wear your callouses and blackened toenails with pride.

12) You don’t realize yet that you are a runner. When your inner runner emerges, go running with Dad every opportunity you get. Later in life, you will hold onto the memories of those runs like treasures.

13) You deserve happiness, and you deserve to be treated with true respect. Don’t settle for anything less.

14) Enjoy your sleep while you can. When you become a mother, you will yearn for it.

15) In a few years’ time you will go to Israel. It will be one of the best times of your life and you will meet some people who will become lifelong friends. Enjoy it and store as many memories of it as you can.

16) The degree you do at University will have no relation to your eventual career. That does not matter. The degree will be useful to you in other ways.

17) Spaghetti mixed with ketchup does not make a gourmet meal, and you will get some very strange looks if you make it for your parents as a special treat.

18) Don’t try going on antidepressants without the guidance of a therapist. As the depression lifts, some other feelings will emerge that will seem scarier. You will need help managing those feelings.

19) The person who has been your best friend since you were ten will still be your best friend when you are 42. Your friendship will survive a rift and you will be there for each other through many major life events. Treasure this friend, because she really is a gem.

20) Life is too short for bullshit. Don’t bear grudges, don’t procrastinate, and make the most of every opportunity you have.

21) Take care of your teeth. When Mom lectures you about flossing, she’s right.

Enjoy your youth, Younger Me. It will be gone all too quickly, and you want to have some good memories of it to carry you through the darker patches of your life.

I’ll see you in 26 years’ time. Enjoy the ride!

Regards,

Older You

Filed Under: Advice, autism, family, Friendship, Health Activist Writers Month Challenge, Memories, Mental Health, running, WEGO Health, Youth
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Poster Child

April 9, 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 9 – Keep calm and carry on: Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? Then go to http://keepcalm-o-matic.co.uk and actually make an image to post to your blog.

Today I got to unleash my inner artist. There’s no need to mention the fact that my inner artist can barely draw a stick figure. With the Internet being what it is these days, you don’t have to be any good at drawing in order to create pretty posters. All you need is a few photographs and enough imagination to come up with some lines of text.

For today’s post, me and my inner artist made three posters. One about autism, another about mental health, and a third about running.

I’ll probably never be featured in London’s Tate Gallery, but this was kind of fun.

What would you put on your Keep Calm posters?

Autism

 

Mental Health

 

Running

Filed Under: autism, Health Activist Writers Month Challenge, Mental Health, running, WEGO Health 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: , , , , , , ,
post

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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