Archives for January 2013


Ten Little Teddy Bears And Other Echolalic Utterings

About six years ago, when my older son was almost 4, I got all excited when I heard him say the phrase, “Ten little teddy bears.” He had virtually no vocabulary in those days, and he almost never spoke. And here he was, uttering a four-word phrase. This was indeed a cause for celebration.

Of course, this happened in a simpler time, when everyone assumed that my son had nothing more than a speech delay. The word “autism” had only made it into my personal orbit as a possibility to be in complete denial about. What? Autism? No way! He just has a speech delay, he’ll catch up!

When we got the autism diagnosis, we found out about echolalia, defined by Wikipedia as “the automatic repetition of vocalizations made by another person.” All kids do it at some point, but most outgrow it. Kids with autism keep at it with admirable dedication, sometimes for years and years. The words being repeated may change, but the concept remains the same.

Ten little teddy bears stayed with us for some time, eventually giving way to phrases related to Bob the Builder and Mr. Potato Head.

I used to think that as the frequency of George’s contextually correct speech increased, it would edge out the echolalia, but that has not been the case. George definitely talks more. He has an extensive vocabulary, and although he hardly ever talks in a social context and still cannot participate in a conversation, he does make requests using full sentences. There is plenty of room for George’s contextual speech to coexist with echolalia.

Over the years, we have been treated to song lyrics, phrases from YouTube videos, sentences uttered by teachers and things that have been said at home.

“Bob dropped the eggs. What a mess.”

“I need Dizzy, Lofty and Muck.”

“No pushing, no kicking, no hitting.”

“Well it’s a sunny day. I feel brand new.”

Some of the echolalia is charming, and it’s thrilling to hear my child utter any words at all. But it is a little disheartening to know that a lot of what he says does not have any meaning or context behind it.

The latest echolalia is not charming. It takes the form of a single word – a word that I would not use on this blog if it weren’t a pivotal part of the story.


I freely admit that it is my fault. Although I try my best to be aware of my choice of words when the kids are around, from time to time I slip up with the F-bombs. It happens rarely, but the kid only has to hear a word once.

At first it was simple repetition, and we responded in the same way we’ve responded to all other echolalia: by ignoring it. Sure, it wasn’t fun to listen to this word being said over and over ad nauseum, but for a while, the best reaction was no reaction at all. Many autism experts agree that any response at all, even a negative reaction, can be perceived by the child as positive reinforcement.

This tactic lost its effectiveness when George got wind of the fact that fuck is that most tempting of things: a Bad Word.

We are now dealing with a child who gleefully yells, “Oh FUCK!” and then runs away in fits of giggles.

Ignoring it no longer works. You know that persistence and single-mindedness that many people with autism display?

Yeah. George’s ability to laughingly repeat the word is greater than my ability to ignore it.

Reprimands don’t work, and in fact, just aggravate the situation and make it funnier from George’s perspective.

The only thing left is the dreaded removal of privileges. I really don’t want to go this route because there will be a meltdown for sure, but I may not have a choice.

Unless, as someone on Facebook suggested, he actually uses the word in context. If that happens, I might just throw a party.

How do you handle inappropriate language in your typically or not-so-typically developing children?

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


In Pursuit Of A Dream

When I finished high school 25 years ago, I had the idea that I would become a research psychologist. I was interested in the clinical aspect of it, but I did not think it would suit my socially awkward personality. If I went into research, though, I would be able to satisfy my desire to try and figure out what makes people tick. In some small way, I might even be able to make the world a better place.

I graduated high school with good grades and went off to university to pursue a Bachelors degree with a psychology major.

You know how life has this way of barging in and messing up all your plans?

Life barged in and messed up all my plans. During my second year at university, I met someone who I initially thought was charming, but who turned out to be a chaotic and disruptive force. I compare that part of my life with a tsunami. A gigantic wave rushes in and knocks over everything in its path. When the water recedes, the landscape is completely different. Some things have been turned upside down, others have completely disappeared. Virtually nothing is recognizable, and the only way to move forward is through a process of recovery and reinvention.

One thing is clear: after such a disruption, nothing can ever be the same again.

I did finish my Bachelors degree, but I abandoned the dream. I did not have good enough grades to pursue further studies, and even if that weren’t the case, my sense of self had been so completely obliterated that it would not have been possible.

In the 20-odd years since then, a lot has happened. I spent some time drifting, both metaphorically in my own mind and literally through travel, and eventually washed up in a career. I moved to Canada, had children, got married. I have buried my father, been thrust into the role of special needs mom, started running and discovered a passion for writing.

I have a lot to be thankful for, including the fact that in spite of the storm that I endured all those years ago, I have managed to make a life for myself. There has always been an undertone of regret, though. Regret for the poor decisions I made back then, and regret for the fact that I had a dream that got swept away. While the career I did end up in has been pretty good, I have never been able to shake the feeling that this is not what I want to do, that I have been living my whole adult life in response to things that happened a long time ago.

Maybe I cannot pursue the dreams I had back then. Maybe those dreams belong in the past along with all the ugly stuff that happened there.

What about new dreams, though? Is there anything stopping me from pursuing them?

In a move that has surprised absolutely no-one except myself, I have made the decision to go back to school. I have enrolled in a post-graduate certificate in fiction and non-fiction writing, and this will be followed up with a Masters degree in creative writing.

It is daunting. Quite apart from the extra time commitment that this will involve, my mind keeps drifting back to how my first shot at a university education went so wrong. I freely admit that I am scared. A part of me feels like that naive kid who made dumb choices. On the other hand, though, this might be a chance of personal redemption, an opportunity to get it right.

I owe this to myself, and I owe it to that scared, overwhelmed kid of long ago who gave up a dream.

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

Autism And The Ontario Teacher Dispute

Going back to school after a two-week vacation is hard, especially for a child with autism whose routines have been completely turned upside-down by unaccustomed time at home, unaccustomed time in a hotel, and the whole Christmas ordeal.

This week has been rough for both of my kids, particularly my firstborn. George reacts to changes in his routine by not sleeping, which means I haven’t had anything remotely approaching a good night’s sleep since before Christmas. Now that the kids are back at school, and familiar rituals and schedules have resumed, the sleep issues are slowly but surely diminishing. Usually it takes a couple of weeks for the status quo to fully return.

This time round, though, there are a couple of wrinkles that are likely to hamper our return to our own odd version of normality. One of the wrinkles is actually a very positive one: for the next few Wednesdays, George will be attending a social skills program after school.

On the one hand, he gets to go to the therapy centre that was his home-away-from-home for three years. It’s a place he knows and loves, and the program is one that he desperately needs.

On the other hand, he has not set foot in the therapy centre since he was discharged 15 months ago. It is no longer a part of his daily life, and going there is a big change for him. As disruptive as that is for now, his participation in the program represents progress, and we are excited to see where this might take him.

The other wrinkle is a little more contentious in nature. For those not living in Ontario, here’s the short version of the story:

Last year the Premier of Ontario introduced legislation that would have the effect of screwing over the teachers. The teachers’ unions got involved and tried to negotiate a better deal. The inevitable happened – things went nowhere fast and the unions recommended a course of protest action for the teachers.

In December, there was a series of one-day walkouts staged by school boards across the province. By then, pre-Christmas stuff had already started to throw the routines off, so this didn’t really bother us. The biggest effect was that James’ Christmas concert had to be rescheduled to a date that was impossible for me (oh, the guilt!).

The one-day walkouts failed to have the desired effect, and now the teachers are not in a legal position to strike. They can, however, stage a one-day protest (although to be honest, I’m not clear about the difference between the two), and this is exactly what they are planning to do tomorrow.

Looking at the issues alone, my sympathies are with the teachers. They are entrusted with the task of shaping futures, and they deserve some respect. My opinion is kind of moot anyway: regardless of who’s right or wrong, the teachers have to do whatever the unions tell them to.

But speaking as a special needs parent, I have to say that I am kind of miffed at this latest development. At a time when I am trying to get George settled into the flow of a routine that’s already different, an unplanned three-day weekend really throws a monkey-wrench into the works.

That there are issues to be resolved is beyond question. I just wish this could be done in a way that does not impact the kids. I can handle the inconvenience of having adjust our family’s schedule to accommodate the kids not going to school for a day. I can live with them missing out on one day of instruction. In the grand scheme of their educations, a single day is not going to make much difference.

What I find hard to swallow, though, is the fact that special needs kids like George are going to endure an extra dose of stress and anxiety because of this.

I’m not sure what the solution is, but I cannot help thinking that there has to be a way to avoid making children bear the brunt of grown-up problems.

(Photo credit: Pylon757. This picture has a creative commons attribution license.)


2012: Moments To Remember From Around The World

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: This picture has a creative commons attribution license.)


A Picture of Words

There is a site called Tagxedo, where you can go to create a word cloud from tags on your blog. You can choose from a large number of colour themes and shapes, and even upload your own picture to use as a base. Playing around here seemed like a good way to spend my New Year’s morning. It’s a lot of fun, and it allows people who cannot draw to save their lives (read: people like me) to channel their inner creativity.

If you’re looking for a pretty picture made of words, head on over and create your own word cloud. Post a picture of it in your blog, and leave me a link in the comments – I would love to see it!