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Easy Breezy Autism Covergirl?

November 13, 2013 By

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Being an autism parent comes with many challenges. One of them is society’s tendency to sensationalise people with autism who have any kind of talent. Temple Grandin, for instance, is frequently held up as a shining example of what autistic individuals might be able to accomplish. So, bizarrely, is Rain Man, who isn’t even real.

One of the latest autism whiz kids is a young woman by the name of Carly Fleischmann. She is non-verbal, and at a young age doctors predicted that her cognitive development would be limited. She had a breakthrough when she typed a message on a computer, and since then the world of communication has opened up to her. With the help of her father, she has written a book, Carly’s Voice, giving an insider’s view of autism.

My reaction to Carly’s story is a mixture of admiration and skepticism. Admiration because this girl has clearly achieved more than anyone thought she would. She has found a way to communicate, she has co-authored a book, and by all accounts she is now attending college. Good for her. And I don’t say that in a snarky, sarcastic way. I say it with all sincerity.

The skepticism arises from her reaction at being rejected as a Cover Girl model. She seems to be of the opinion that (a) Cover Girl rejected her because she has autism, and that (b) the reason Cover Girl should have accepted her is because she has autism.

Let me pause for a moment to say that I’m not intending to start a big debate about media portrayals of beauty. Yes, I know that the models we see on magazine covers have been Photoshopped to Kingdom Come. Yes, I’m aware that real people don’t look like that in real life.

I also know that physical beauty has nothing whatsoever to do with the presence or absence of autism. There are ordinary-looking people with and without autism, and there are absolutely show-stoppingly gorgeous people with and without autism. As the parent of a child with autism, I have heard many insults and unfair stereotypes aimed at people who are on the spectrum. But I have never heard anyone claim that people with autism are ugly.

This leads me to the following question: should Carly Fleischmann be granted a Cover Girl contract in spite of not meeting their physical standards, just because she has autism? I’m no oil painting myself, but I would venture to say that I have just as much inner beauty as Carly does. Why, then, should she have more entitlement to be a Cover Girl model than me? I’ve also overcome challenges and accomplished great things.

My son George is ten. He is described as “functionally verbal”, which means he has enough verbal communication to meet his needs. He has enough words to make requests and get by, but he cannot have a conversation. He has good academic skills, but lacks the ability to apply the academic concepts to real life. He can independently get dressed and use the washroom, and he can make himself a sandwich or pour himself a glass of milk. But he would not look at the colour of a traffic light before crossing the road, and if you gave him $10 and put him in a store, he wouldn’t know what to do.

I am big on accommodations for kids with autism. My child needs plenty of them, and if I’m to be realistic, he’ll more than likely need accommodations well into adulthood. He’ll probably be able to hold down a career – maybe he’ll even get to go to college – but he will almost definitely need to have his environment adapted in a way that enables him to succeed.

But.

I would not want my son to be on the cover of some magazine just because he has autism – unless it was a magazine about autism, or at least a magazine featuring a story about autism.

Look, if my son turns out to be the fastest athlete in the province but is denied a place on the Olympic team just because of his autism, I will turn into the world’s biggest autism advocate warrior mom. But if he misses the Olympic qualifying standards, would I want him to be given a place on the team anyway, just because he has autism? Hell, no.

I want my son to come by his accomplishments and accolades honestly, by earning them. I don’t want people to say that he got this job or won that award “just because he has autism”.

What do you think? Is Carly Fleischmann right to be upset over not being accepted as a Cover Girl model? Am I short-changing my son by wanting him to be judged by the same standards as other people?

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

 

Filed Under: autism, Carly Fleischmann, Cover Girl Tagged With: , , , , , , , ,
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Autism: Looking Ahead To The Teenage Years

July 14, 2013 By

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A few short weeks from now, my older son George will be turning 10. This is a pretty big milestone for any parent. Not only will it launch George into double digits, it will mean that I have navigated the mysterious world of parenting for a full decade. Not just any old parenting, either – special needs parenting.

In his ten years, George has accomplished some amazing things in the face of his autism. I could go on all day about progress and milestones and potential, and I really am proud of his determination. Whether or not he is aware of his disability is debatable, but either way, he works really hard for every single victory. The smallest accomplishments that would go unnoticed in most families are a giant cause for celebration in ours.

The harsh reality, though, is that George still has some challenges, the most obvious of which is his lack of speech. He can talk – he has the physical ability and the vocabulary – but he doesn’t. His speech is mostly limited to requests, although he does occasionally make mind-blowing (to me) statements, like last week when he showed me his “screaming green angry gorilla”, which was actually a Hulk toy.

We cannot have conversations with George. We cannot say, “So, what did you do at school today?” and expect him to answer. His standard answer to most questions that are posed to him is “yes”, even when that doesn’t fit the question. Of great concern to me, if something bad was happening to him, like bullying or molestation, he wouldn’t  be able to tell me about it.

That’s just the speech side of it. Social communication is an issue big enough for its own blog post. And as much as George has made phenomenal cognitive gains, in many areas he still functions well below the level of typical kids his age.

And so, with his 10th birthday approaching, my husband and I are preparing ourselves for the fact that he may not be as high-functioning a teenager as we have been hoping. When we got his report card a couple of weeks ago – the one that says he is “transferred” to Grade 5, unlike other kids who are “promoted” – I had a moment of pure terror at the realization that 8 years from now, he will be nominally eligible to graduate high school. It wasn’t the normal “Oh, how fast time passes” kind of terror. It was fear for George’s future.

Until now, my husband and I have been swirling these thoughts around in our heads, but today we spoke about them for the first time. We talked about preparations that need to be made and programs that need to be sought out. We talked about what the reality of life is likely to be when George reaches teenagerdom, just three years from now. He will not have a peer support system like most kids, and he will always be quite obviously “different”. He will go through the angst of adolescence without the ability to express himself verbally, and if we don’t keep a close watch on him, he might be the target of bullying. Other teens – or, Lord help us, some adults – might take advantage of his natural sweetness and trusting nature.

Talking about it makes it so much more real and so much scarier. It brings tears close to the surface and makes me feel very emotional. It makes me wonder if I, as George’s mother, have been doing enough for him. Is there something I have overlooked, some possibility that I have not explored, some avenue of opportunity that I have allowed to pass by?

Of course, I could be wrong. We could see George’s speech and social communication skills explode one day. I am not giving up, and I am not losing hope. I am simply being realistic so I can equip myself to provide the kind of support George will need as he navigates his way from here to adulthood.

Today, when I was out for a walk with my family, I kept looking over at George with an aching heart. He is my beautiful boy, with the most tender of souls, and I just want for him to be OK.

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

Filed Under: Adolescence, autism, Childhood, Future, Teenage Years Tagged With: , , , , , ,
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2012: Moments To Remember From Around The World

January 8, 2013 By

When I was a kid, New Years Eve was a family occasion. We would all gather – cousins, aunts, uncles and my grandmother – to ring in the New Year together. Everyone would get sparkling wine (even us kids were allowed a token amount) and beneath the stars in the warm South African summer, we would count down to The Big Moment. As the clock stuck midnight, we would toast each other with the sparkling wine, and then we would stand in a circle, link arms and sing Auld Lang Syne.

My mom always cried during these moments, and when I asked her about it once, she answered, “I don’t know why. I just hate New Years Eve.”

As I’ve grown older, I’ve noticed a curious pattern that I suspect my mom unwittingly followed. As December 31st approaches each year, we tend to be tearfully nostalgic for the good things we are leaving behind, but in fear of the bad things we think will be carried forward.

What if we approached it the other way round? What if we decided to leave the bad stuff behind and bring the good stuff into the new year with us?

In that spirit, I recently asked people to tell me about their best moments of 2012.

Alison from Malaysia had a pretty good year as she gave birth to her second child. It doesn’t get much better than new life, does it? She describes her pregnancy as a race, and she got the best possible prize at the end of it.

Like me, Cheryl is a special needs mom living in Ontario. We share many of the same frustrations when it comes to getting services or funding for our kids. Cheryl hit a sweet spot in 2012 when she took on an insurance company and WON! She got a medication covered for her daughter, who has cerebral palsy, and she helped pave the way for thousands of other parents in a similar situation.

I can also relate to Melanie from Japan, who’s daughter has difficulty making friends. My son, who has autism, does not have any friends apart from his brother, and I know how hard it is to watch your child sitting alone in the playground simply because he doesn’t know how to make friends. Melanie had a lovely moment last year when her daughter made a new friend.

As parents, we bask in the accomplishments of our children, and Purnima from India shares her young son’s success as he played a key role in his school’s Annual Day Program.

My cousin Gillian (a.k.a. “Mug”), who lives in the back of beyond Tasmania, was given that all-too-rare commodity in 2012: the gift of time. She has a job AND a farm, and judging from some of her adventures, farm animals can sometimes be more wayward than children. So when she was able to start working four days a week instead of five, it was a welcome break for her.

(On a side note, I have a confession. Before Mug moved to Tasmania, I didn’t realize it was an actual place. I thought it was a mythical place with a mythical devil.)

Tania from Puerto Rico did a fair amount of traveling last year. When her husband had to go to Paris on business, she went with him. On the day of their arrival, they went to a live performance by their favourite band, Coldplay. Coldplay has never performed in Puerto Rico, so this was icing on the cake for Tania.

For some people, the best moments of 2012 arose from something bad. Margie from Arkansas had a great year that culminated in her obtaining a hard-earned Bachelors degree. As impressive as that was, it paled in comparison to the time she found out that her fiancee was alive and more or less in one piece after being hit by a car.

Karyn from New Zealand had one of those moments as well, when her eldest son had a surfing accident. All three of her boys handled the crisis remarkably well and made Karyn realize that she can enjoy parenting more, knowing that the groundwork has been laid.

My own year was a perfect example of good moments arising from bad events. In February, a beloved aunt died in a freak accident, and I flew to South Africa to be with family. My time there was bittersweet. There was sadness and shock as we all started the process of calibrating ourselves to a life without someone who had been very much loved. But there were also moments of joy and laughter, of peace and togetherness.

One moment in particular stands out for me.

My brother and I went to see a movie together. This in itself was a momentous occasion, not only because my brother and I hardly ever spend time together on account of living on different continents, but because it had been years since I had seen a movie made by someone other than Disney Pixar.

After the movie, we went to the rooftop bar of a nearby hotel for a drink. As we sat there talking and enjoying the last of the day’s sunlight together, I realized that this was one of those perfect moments in life – one of those moments that you want to capture and carry around with you forever.

What was your best moment of 2012? What good stuff are you bringing with you into 2013?

(Photo credit: http://www.flickr.com/photos/kevgibbo/706220224. This picture has a creative commons attribution license.)

Filed Under: 2012 Year in Review, Moments, New Year, Positive Attitude Tagged With: , , , , , , , ,
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Lessons Learned: Getting The Cup To Be Half Full: Guest Post by Phaedra Kennedy

January 4, 2012 By

Almost 12 years ago, I packed my life into checked baggage and moved, by myself, halfway across the world. When I landed in Canada, a country that I had never set foot in, I did not know a single soul. My friend Kane (a truly amazing human being who really deserves a blog post all of his own) put me in touch with his friend Phaedra Kennedy, who happens to live in Toronto. When Phaedra and I met, we discovered to our mutual delight that we shared an interest in running.

Since we met, a lot has happened. We met our life partners several months apart and we are both now married. We’ve moved around, stuff has happened in our careers, and for both of us, running took a back seat to other events that were going on in our lives. Now, we are back in the running scene, and Phaedra is coaching me for the 2012 season. This is truly an honour: Phaedra is the kind of runner other runners look at in envy and admiration.

Today, Phaedra tells us about how she rose above personal tragedy and sadness to have a phenomenal season of running. This is a tale of strength and determination that I for one will take with me as I strive to achieve great things in 2012.

When Kirsten asked me to write a guest blog post for her, I was incredibly flattered.  I was also a little befuddled.  Her goal was to start off the year on a positive note so she approached 5 women she considered to be inspirational.  To be included in that group was high praise.  Me, inspirational?  I don’t know about that.  I thought long and hard about what I should write about.  She gave me no guidelines only that it had to be positive.  Which was challenging for me given that I had been in a bit of a funk as of late.   To top it off, I don’t normally think of myself as a positive person.  That had been cemented by the fact that I took one of those online tests a while ago to determine if I was a pessimist or an optimist.  Surprise, surprise, I was a glass half empty kinda gal.   But, somewhere along the way this year, my mindset MUST have changed a bit because this year has been one of the best years of my life and I chalk that up to me WANTING it to be that way.   Positive thought and determination made it so.

It all started in November of 2010.    I had just run a dismal race at the Scotiabank Waterfront Marathon.  I had decided to do the marathon after spending 1.5 years going through 3 failed IVF cycles.  It was a half-hearted attempt to get my athletic mojo back.  Over the course of the year and a half, my body had become a science experiment.  I had given up control over it in the hopes of starting a family.  I had been poked and prodded, injected with drugs, monitored on an almost daily basis.  My normal exercise routine went out the window.  I became a slave to my cycle.    Instead of early morning swim sessions, early morning clinic visits became the norm.  It took a toll on my body and my emotional state.  We had one last kick at the can in November of 2010.  When that failed, we were devastated.   When you’re used to being able to train your body to do what you want it to do, to have our 3rd IVF attempt fail was frustrating.  Especially when your doctor kept telling you everything looked great.  For whatever reason, my body was not meant to bear life.   It was a tough pill to swallow.  I went back to running to help soothe the pain.  There were some tears shed on those runs.  But there was also a realization that perhaps I had been given a different kind of gift.  The gift of being able to really follow my passion, to really delve into running like I never had before.  I was coming up on 40 and I thought You know what, I’m going to make 40 the best year of my life (to date).  With that simple vow, a world of possibility opened.   I rose to the challenge of taking the knowledge I had and crafting a plan that would get me to my goal.  I set what I thought was a lofty goal:  I was going to run 3 half marathons in 2011, with my last one being run in 1h 40 min or faster.  And I was going to blog about it.  Blogging would keep me accountable and if I managed to reach out and inspire a few folks along the way, then that was a bonus.

My plan was a departure from most traditional distance running plans.  Too much mileage and I will get injured.  This time around I focused on quality vs. quantity (no junk miles!!) And I added more strength training to my routine.  My diet also changed thanks to an amazing program called Precision Nutrition.  Gone were the processed foods and larger than necessary portion sizes.  I did a complete overhaul. I was quite proud of my little plan and my body responded to it well.

My first half marathon was the Chilly Half in March 2011.  It was the weekend of my 40th birthday.  My goal was to run sub 1:50.  No surprise, it snowed the night before so the conditions were horrible.  I didn’t freak out.  The snow was a blessing.  It made me start out slow.  Which was great.  Even with the slow start, I managed to pull off a 1:47 and change.  Perfect.  I was pumped.  I didn’t let the weather get me down.  I just went out and ran.  Lesson learned:  Don’t worry about things you don’t have control over, just go out and do your best.

My second half marathon was the Toronto Women’s Half in May.  I had been really looking forward to this race.  I had finally gotten back out with my running group so I had been getting some good speed work in.  I couldn’t WAIT to see what I was capable of.    The course was rolling and it was on bike paths so I figured it might be a bit challenging.  Bring it.   Race day was muggy and gross, but nothing that a few cups of water from some shirtless firefighters couldn’t help.  I busted my butt in this race.  Went out way too hard and paid for it near the end.  But I pushed through pain that normally would have me backing off.  I came out with a 1:41:39.  A new PB! And 5th place in my age group!  Lesson learned:  I’m tougher than I give myself credit for.

I went on a racing frenzy during the summer. It seemed like I raced almost every other weekend.   With each race, my results were better and better.  I started to get spots on the podium.  I won my age group a few times and then I actually snagged a women’s overall win.  Never in my wildest dreams did I think I’d have a year like this.  It took positivity to a whole new level.  I trained hard and continued to race all summer.  I learned to really listen to my body.   I went into each race with a positive outlook.  And a goal of working hard and giving it my all.   My new motto became leave it all on the race course.   This was a new thing for me.  I was always so cautious when I was racing.  What if I went out too hard?  What if I blew up?  No longer a concern.  I had faith in my abilities.    This was new to me!

As my 3rd and final race got closer, I thought about revisiting my goal time.  I was running the Scotiabank Half and it was flat so my husband said I should aim for 1:35.  In the back of my head, that became my new hard goal.  I recruited a friend from my running group to pace me.   This time I wanted to race smart and not go out too hard.   Race day I was calm cool and collected.  I knew I could do it.   Sub 1:40 would not be a problem.  Could I break 1:35?  If I raced smartly, and trusted my abilities, I figured I could.

In typical fashion I wanted to go out hard but my friend kept me in check.  I made a few mistakes early in the race that would have saved me some panic late in the race but at about 19km, I knew I was going to make it.  It would be close but I knew if I pushed myself I’d be ok.  Before I knew it I had hit the 500m mark.   I was overcome with emotion as I ran towards the finish line.  The culmination of a year of hard work was coming to a head.  The doors were finally closing on an old chapter of my life and opening on a new one.  I could see the clock counting down to 1:35.   I crossed the finish line in 1:34:48.   Amazing.  What was even more amazing was that I managed to place 6th in my age group out of 662 women.  6th!!!   When my husband told me that I burst into tears.  Tears of joy, amazement & thankfulness.

Lesson Learned:  Trust in your ability and most importantly believe in yourself.

I had exceeded my original goal by 5 minutes and I had crushed my PB from May by 6 minutes.    I never imagined I’d have a year like this.   All because I made the decision that 40 was going to be the best year of my life AND I actually did something about it.  I was amazed by the things that happened along the way.  I realized that my mindset has changed.  I’m no longer a glass half empty kinda gal.  I’m not quite at the glass half full point but I’m working on it.  2012 will be the year the glass becomes half full.  Of that I’m certain.

(Photo credit: Phaedra Kennedy)

Filed Under: Accomplishments, Determination, IVF, Personal Best, Phaedra Kennedy, Race, running, Setting Goals Tagged With: , , , , , , ,
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The Beauty Of Autism

May 31, 2011 By

"Peep And The Big Wide World" by George

It was a beautiful moment. One of those moments that autism parents celebrate, that parents of neurotypical children completely fail to notice.

I got home after a long, hard day at work, feeling tired and cranky. As I trudged my way up the driveway, all I wanted to do was grab a glass of wine, collapse into a chair, and never get up again. I didn’t just feel lethargy. At that moment, I was lethargy.

I opened the front door and stepped into the house. Moments later, I heard a pair of feet thundering up the stairs from the basement, and a seven-year-old whirlwind launched itself at me, almost knocking me to my feet. After giving me a ferocious hug, George said, in his sweet sing-song voice, “Hi, Mommy!”

Without me saying hi to him first.

Without me or anyone else prompting him.

This was a social exchange that was initiated completely, 100%, by my child with autism – my child who has, as one of his biggest challenges, social communication difficulties.

Instantly, my energy was back and I was ready to laugh and play with my family, with this amazing child who always seems to give me surprises of wonder.

As a special needs mom, I find that my life is punctuated with moments like this. I remember firsts that I probably wouldn’t even notice if I didn’t have a child with autism.

Like the first time he pointed. What a joyous occasion that was, coming as it did after almost a full year of me teaching him how to point. I blubbed my eyes out that night, all over the Bob the Builder book that had been the vehicle for this accomplishment.

Then there was the first time he made a request using a full sentence. It didn’t matter to me that the sentence was only three words long. This child who said, “I want juice” was streets ahead of the child who, just a few months before, had indicated his need by grabbing my hand and thrusting it in the general direction of the juice boxes.

And what about the first time he pretend-played? It was a simple game that consisted of George crouching down on the ground, and crawling around with his back arched skyward while repeatedly saying, “Turtle.” So what if it was unsophisticated play that included only himself? He was pretending – something he had never done before.

More recently, we celebrated him drawing his first picture. He’d made lots of scribbly-type drawings in the past, of course (and I have kept every single one of them), but this was his first picture depicting an actual scene. That it was an instantly recognizable scene from his favourite kids’ show, Peep And The Big Wide World, makes it even more special.

We have seen the advent of humour, and this is all kinds of significant. Humour is a complicated intellectual process, and George gets it. And let me tell you, he is funny.

All of these moments, when strung together, tell a story of a very special little boy who is making a journey through life that is somewhat different to the way other kids do it. But the point is that he is making the journey and having all kinds of adventures. He may be taking the scenic route, but ultimately, he does pass through the same places that other kids do. He achieves many of the same things, but it takes a little longer and is accomplished in unconventional ways.

I believe that having a child with autism makes me a better parent than I would be otherwise.

It has given me the ability to spot a single flower in a sea of long grass, and more importantly, the power to stop and smell every single flower that I pass on this journey through my kids’ childhoods.

Filed Under: Accomplishments, autism, Children, family, life, Milestones, parenting, Special Moment Tagged With: , , , , , , , , , , , , , , , , , ,
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The Beauty Of Autism

May 31, 2011 By

"Peep And The Big Wide World" by George

It was a beautiful moment. One of those moments that autism parents celebrate, that parents of neurotypical children completely fail to notice.

I got home after a long, hard day at work, feeling tired and cranky. As I trudged my way up the driveway, all I wanted to do was grab a glass of wine, collapse into a chair, and never get up again. I didn’t just feel lethargy. At that moment, I was lethargy.

I opened the front door and stepped into the house. Moments later, I heard a pair of feet thundering up the stairs from the basement, and a seven-year-old whirlwind launched itself at me, almost knocking me to my feet. After giving me a ferocious hug, George said, in his sweet sing-song voice, “Hi, Mommy!”

Without me saying hi to him first.

Without me or anyone else prompting him.

This was a social exchange that was initiated completely, 100%, by my child with autism – my child who has, as one of his biggest challenges, social communication difficulties.

Instantly, my energy was back and I was ready to laugh and play with my family, with this amazing child who always seems to give me surprises of wonder.

As a special needs mom, I find that my life is punctuated with moments like this. I remember firsts that I probably wouldn’t even notice if I didn’t have a child with autism.

Like the first time he pointed. What a joyous occasion that was, coming as it did after almost a full year of me teaching him how to point. I blubbed my eyes out that night, all over the Bob the Builder book that had been the vehicle for this accomplishment.

Then there was the first time he made a request using a full sentence. It didn’t matter to me that the sentence was only three words long. This child who said, “I want juice” was streets ahead of the child who, just a few months before, had indicated his need by grabbing my hand and thrusting it in the general direction of the juice boxes.

And what about the first time he pretend-played? It was a simple game that consisted of George crouching down on the ground, and crawling around with his back arched skyward while repeatedly saying, “Turtle.” So what if it was unsophisticated play that included only himself? He was pretending – something he had never done before.

More recently, we celebrated him drawing his first picture. He’d made lots of scribbly-type drawings in the past, of course (and I have kept every single one of them), but this was his first picture depicting an actual scene. That it was an instantly recognizable scene from his favourite kids’ show, Peep And The Big Wide World, makes it even more special.

We have seen the advent of humour, and this is all kinds of significant. Humour is a complicated intellectual process, and George gets it. And let me tell you, he is funny.

All of these moments, when strung together, tell a story of a very special little boy who is making a journey through life that is somewhat different to the way other kids do it. But the point is that he is making the journey and having all kinds of adventures. He may be taking the scenic route, but ultimately, he does pass through the same places that other kids do. He achieves many of the same things, but it takes a little longer and is accomplished in unconventional ways.

I believe that having a child with autism makes me a better parent than I would be otherwise.

It has given me the ability to spot a single flower in a sea of long grass, and more importantly, the power to stop and smell every single flower that I pass on this journey through my kids’ childhoods.

Filed Under: Accomplishments, autism, Children, family, life, Milestones, parenting, Special Moment Tagged With: , , , , , , , , , , , , , , , , , ,