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Look At The Bridge!

March 27, 2011 By

We had a nice George-vs-Autism moment this afternoon while we were driving down the highway. The four of us were on our way to the tuxedo place to get Gerard’s measurements taken.

George was unusually calm: usually when we are out in the car, he insists on McDonalds, Tim Hortons, Wendy’s, or whatever fast food place happens to be closest to where we are. One thing that he definitely has no issues with is his memory – he only has to pass through a neighbourhood once for the locations of stores and restaurants to be indelibly stamped in his mind. As a result, our drives are accompanied by a running commentary. “I want McDonalds chicken burger, please, yes. I want Tim Hortons cheese bagel, please, yes. I want Baby Burger, please yes.” As we drive past a place, taking it out of the running, he starts targeting whatever place will come next.

Today, though, he was silent but alert. He was quietly observing the world as we whizzed by it, and as we approached a bridge going over the highway, he suddenly and animatedly said, “Look at the bridge! Look at the bridge!”

Parents of neurotypicals who have never been exposed to autism are probably reading this and saying, “Yeah? And?”

This is a big huge holy-crap-that’s-phenomenal deal. A completely spontaneous utterance, appropriate to the situation, made for the purposes of social communication.

It was a beautiful moment indeed.

Funny, the things that have power to bring tears to my eyes.

(Photo credit: http://www.flickr.com/photos/ell-r-brown/3815822976)

Filed Under: autism, life Tagged With: , , , ,
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Spectrum Musings

March 10, 2011 By

Sometimes I wonder if George got his autism from me.

I don’t say that with any sense of guilt. If he did get it from me, I don’t feel bad about it. After all, I can hardly be held responsible for my genetic composition. It’s not as if I had any control over what DNA I landed up with.

I wonder about this question, though, from a purely scientific, curious point of view. Because although I’ve never been screened for it, it would not surprise me one bit if I were to learn that I am on the autism spectrum.

When I was a baby, I cried. I know, that sounds like a ridiculous statement. Of course I cried. That’s what babies do. In my case, however, I couldn’t be soothed. My poor Mom would change me, feed me, rock me, try to get me to sleep. No matter what she did, I cried relentlessly, for hours at a time, for no apparent medical reason. Mom surmised that maybe I was reacting to a feeling of  rejection after my birth mother had given me up for adoption.

Adoptions in those days were closed, and no information was exchanged between the birth mother and the adoptive parents. My Mom knew nothing about where I had come from. She told me in later years that she just assumed there was some factor she did not know about that was causing all this angst in me.

When I was a very young child, it became apparent that I had notable developmental delays. I was a very late talker, and did not show signs of functional speech until the age of five. It took me a lot longer than my peers to learn how to read (although it must be said, once I did learn, it was like a floodgate had opened, and I read everything I could get my hands on).

At the same time, I had issues with motor skills. I was uncoordinated, and stubbed my toes a lot. I did not have the strength to hold a pen, and I didn’t even know, until some species of therapist did some testing on me, that I was left-handed. My hand-eye coordinatin was nowhere and I had to be taught it while other kids seemed to just pick up on it naturally.

There are certain sensory things that I find hard to handle. Flickering lights (although, to be fair, that would probably drive most people batty). The textures of certain foods. Clothing labels have the ability to make me want to chew off my own arm in frustration. When Gerard has the TV on too loud, I actually want to scream. Hearing too many sounds from too many different sources (TV, dishwasher, telephone, whatever) invokes a feeling of intense anxiety.

When I’m stressed I rock back and forth. I find it calming, I find that it can sometimes stop the stressful feeling from escalating.

One of the most telling factors in my musings, however, is my social awkwardness. I have had this problem throughout my life. As I get more comfortable with specific people, my social ineptness becomes less apparent, and I work hard to hide overcome it in my day-to-day life.

Social gatherings can be excruciating for me. High school was just torture – I so badly wanted to fit in, but I couldn’t be social enough and my attempts came across as awkward and embarrassing. The only person at school who I felt completely comfortable with was my friend Jenny, who remains my best friend to this day.

There are certain social situations that make me feel even more uncomfortable: conflict, meeting new people, situations where I unexpectedly have to make small talk, anything to do with telephones.

Gerard has remarked several times that I seem to have a special connection with George. When he is having a meltdown, I seem to have the ability to just know what to do, to know what he needs. It can take a long time to calm him down, but in most cases, I can just know – without explaining how I know – how he needs to be spoken to, held, comforted, soothed.

And I wonder why this is.

Is it a normal motherly instinct?

Or do I, in some ways, inhabit the same world George does?

(Photo credit: http://www.flickr.com/photos/53416677@N08/4972850923)

Filed Under: autism, Genetics Tagged With: , , , , , , , , , , , , , , , , ,
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Lost For Words

January 13, 2011 By

I think the Internet was the best thing ever invented.  OK, make that the second best thing, after coffee, which when you think about it, wasn’t actually invented in the true sense of the word.  One reason the Internet is so great is that it enables me to keep in touch with people without actually having to talk to them.

Lord, that sounds awful, doesn’t it?  It makes me sound like an arrogant, antisocial jerk who doesn’t care about the people in her Facebook friends list.  Let me assure you that this is not the case.  I care about people a great deal, and my friends are very, very important to me.  I realize that this is the kind of thing that anyone would say, even people who would sell their grandmothers to the devil.  But I really do mean it. I have my fair share of faults, but I believe that the people I care about would describe me as a good and loyal friend.

So when I say that I want to keep in touch with people without talking to them, it’s not the actual people that I have an aversion to.  It’s the talking.

Let me pause for a moment to say this: what I am sharing today is a glimpse into a part of my life that I have difficulty with.  It is something that, while not exactly earth-shattering, is not easy or comfortable to talk write about.  And while there are certain aspects of my life that I will never share publicly, I just-about-kind-of-sort-of feel brave enough to discuss this.

You see, all my life I have suffered from pretty intense social anxiety and awkwardness. While I always enjoy being around people, I frequently don’t know what to say when I’m with them.  Or to put it more accurately, I know what I want to say but I find myself unable to say it.

Are you confused yet?

Here’s what it’s like for me.  I often find, when I am talking to people, that I am able to formulate an idea in my head.  I can script the words I want to use in order to verbally express that idea.  But when it’s actually time for me to utter those words, I cannot.  The best way to describe it is that the words get lost somewhere between my brain and my mouth.  It’s as if the synapses in my brain that are responsible for translating thought into speech just aren’t firing.

Picture yourself sitting in your car in your driveway, intending to drive to the post office, and suddenly discovering that all of the roads between your house and the post office have suddenly disappeared.  So you sit in your car at home, at a loss as to what to do.

Or if you’re me, you sit there not taking part in the conversation, and people just assume that you don’t have anything to say.  And you get more and more frustrated because you do have something to say, but you are unable to say it. Or when you can say it, you sound awkward and stilted, and because this whole conversation effort is so stressful, you come across sounding abrupt or disinterested or babbling in an uncomfortable way.  If I’m in a situation of conflict with another person, this problem multiplies a hundredfold.

Some people who know me personally are probably reading this and going “Huh?”  This verbal debilitation I experience is not visible to everyone – a lot depends on who I’m talking to and what the circumstances are.  This problem is a disability of sorts, and people with disabilities learn how to adapt, and how to live life as seamlessly as possible without letting the disability take over.  But even at times when I give the appearance of having a normal conversation, I am capable of feeling a level of anxiety that most people probably cannot relate to.

Although certain events in my life may have exacerbated this issue, it is really something that I have always lived with.  I had a variety of developmental delays as a child, and only developed a reasonable level of functional speech at the age of five.  Throughout my childhood and adolescence, my social development was far behind that of my peers.  At an age where most of my contemporaries were going to parties, acquiring boyfriends, and traveling in large, noisy packs, I was the quiet, awkward one who never said much.  My social anxiety was frequently misconstrued as shyness.

As an adult, this has impacted my life in a number of ways.  Certain events in my life can be attributed at least partly to the fact that I did not have the social skills I needed to deal with things differently.  These events have ranged from the minor events that you forget about the next day to the bigger events that stay with you for life.

My social interactions tend to vacillate between two extremes: one the one end, I kind of clam up and don’t say anything.  On the other end, I talk non-stop, saying inconsequential stuff to cover up the anxiety I feel.  In the middle of these two extremes are the “normal” interactions I enjoy with my family and my closest friends; with people that I have a high degree of trust in.

Telephones terrify me.  Seriously.  I hate the things.  If I could get through life without ever talking on the phone, I’d be happy.  When I do find myself on the phone, I get the hell off as fast as I can.  Again, there are exceptions.  My Mom?  I could talk to her on the phone all day.

I love to write.  Love, love, love it.  My tendency to lose words does not extend to my writing – in fact, I have a theory that my writing skills have developed pretty well in order to compensate for the difficulties I have with oral communication.  This is a good outlet for me.  It is a way for me to share a part of myself with the world, without going through the anxiety that I might otherwise experience.

I find my social anxiety issues to be disabling at times, but being the eternal optimist, I strive for things to be better.  I adapt, I compensate, and I seek opportunities to overcome.

(Photo credit: Flickr Creative Commons Attribution License)

Filed Under: Communication, life, postaday2011, Speech, Uncategorized Tagged With: , , , , , , , , , , , , ,
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Letting Go Of The Training Wheels

January 10, 2011 By

In September, my son George will be making the transition to full-time school.  For two years, he was going to school one day a week (he is in the “mild intellectual disability” program at the public school), and for the other four days he was going to the therapy centre to undergo IBI.  For those not familiar with the term, IBI stands for Intensive Behavioural Intervention.  It is intense, one-on-one therapy based on prompting and rewards.  It can be used to teach social skills, daily living skills, routine, pattern recognition, and many other things.

Under IBI, George’s progress was off the charts.  He did so well in the first year alone that he made 23 months’ worth of gains in a twelve-month period.  The second year saw similar improvements, and the tiny spark of hope that had been present in me and my fiance bloomed into this kaleidoscope of possibility.  George can be held up as a shining example of what many kids can achieve in IBI.

After two years, though, it was time to move him to a new level.  The one area where George was not making significant improvements was in his social interaction skills, and IBI, by its nature, does not address this deficit very well.  IBI is one-on-one, and George needed to be in a placement that would involve group interaction.  He was also having trouble following school routines.

He was placed in his current program, which is called School Stream.  He spends every morning at the same therapy centre where he received IBI, in a simulated classroom setting with four other kids.  There is a teacher, and each kid also has his own one-on-one support person. The kids do school-type activities, like raising their hand to answer questions, participating in circle time, taking turns, and playing interactively in the gym.  At lunchtime, the school bus picks the kids up and takes them to their respective schools, where they spend each afternoon.

It’s a great program.  The School Stream in the morning and actual school in the afternoon are complimentary programs that reinforce each other and allow for a crucial element: the transferrence of skills to different settings.  We are seeing George progress in different ways.  His teacher at school has reported that he is now following school routines with very little problem, and everyone involved with him is seeing a big increase in speech.

The kid’s probably never going to be big conversationalist, but he is at least functionally verbal, and for George that is a step that is big gigantic equivalent to man walking on the moon.  Academically, he is performing so well that his teacher is now describing him as high-functioning.

There are still challenges, and there probably always will be.  George has a resistance to change that is problematic. Picture extreme tearful anxiety when a lightbulb burns out or when the coffee machine is three inches to the left of where it should be.  There are various meltdowns and anxieties that do not make sense (to us; they probably make perfect sense to George).  We would still like to see him talking more, interacting more, coping with sibling rivalry in a way that does not involve him headbutting his little brother.

But as hard as the challenges can be, they are overshadowed by all of the phenomenal accomplishments that we have seen in George, thanks first to IBI, and then to School Stream.

George will be exiting School Stream in August, and from September, he will be spending all of his school time in actual school, and our three-year involvement with the therapy centre will end.

This is causing me a great deal of anxiety.

It’s not that I think George is not ready.  It’s that think I’m not ready.

The therapy centre represents an avenue of support that has been a part of my life for three years.  I have had many, many conversations with the therapists and supervisors there, and they have given me so many great ideas and strategies for dealing with various things.  They have arranged parent education evenings that have given me valuable information and new ways of looking at things.  And to be fair, they don’t just discharge their kids and then forget about them.  They do have a support program that lasts for six months after the transition to full-time school.

But still.  This change, while being necessary and timely, represents a letting go of support.  It’s like finding yourself without training wheels when you still feel unsteady on the bike.

And this Mama just ain’t ready for that.

Filed Under: autism, postaday2011, School, Teacher Tagged With: , , , , , , , ,
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Give me a place to stand…

November 8, 2010 By

Last week I stepped out of the real world for a few days while I attended the 2010 Geneva Centre for Autism symposium, here in Toronto. It was a phenomenal event – it was much more than I had expected it would be. When the conference ended on Friday afternoon, I literally felt as if I had to step out of a bubble back into my life. But I resumed my life with an altered perspective, and a deep new understanding of my son.

For three days, I was in the presence of true greatness. I had the opportunity to listen to presentations by professionals in the field of autism, such as Tony Attwood and Nancy Minshew.  I heard talks by individuals who have lived with autism themselves, who have made successful lives for themselves – people like Temple Grandin and Stephen Shore. I listened to the beautiful music of two people with autism, Michael Moon and Samantha Mutis, which brought tears to my eyes. I was surrounded by hundreds of delegates – teachers, therapists, other parents like myself – who were all gathered together for the sole purpose of learning how to help and support people with autism, and thereby make the world a better place.

Going into the conference, I expected to learn some new stuff. That was, after all, my reason for going. I wanted to get some insights, hear about new research, learn about possible ways of doing things differently and more effectively for George. Did I accomplish this goal? Let me put it this way. Not only did I learn more about autism than I would have thought possible in three days, I actually feel as if I got to step into my son’s mind. Listening to the speakers, many of whom live their lives on the spectrum, I got to step into the world of autism in a way that I have, until now, not been able to accomplish.

I feel honoured that these individuals allowed me into their world and shared of themselves so freely. These people, for whom life has been a series of challenges that most of us will never understand, have collectively turned me into a better person and a better Mom.  They have, through their willingness to share their experiences and give hope to parents of children with autism, created a landscape in which my son can have a better, more productive, more fulfilling life. What an opportunity that is.  What a gift those people have given to me and my family.  I feel truly blessed to have been there.

I learned that in order to teach social communication, we need to teach social thinking, and that in too many instances we focus on the diagnosis – the word “autism” – rather than on the specific challenges of the individual. I heard about how in all of us – especially people with autism – negative emotions may manifest as anger, and that we should always dig deep and look for the real underlying emotion. I have learned to use the phrases “expected” and “unexpected” when describing behaviour because the terms “appropriate” and “inappropriate” imply a value judgment that doesn’t help anyone. I now know that instead of fighting George’s fascination with garage doors and writing it off as an autistic obsession, I should use it as a stepping stone to help him learn and accomplish new things. And much more.  So much more.  I am still internally processing everything.

I left the symposium with the knowledge that so much is possible. I can see a whole new world opening up for my boy.  It is up to me and Gerard to ease the path for him, to help him see where he can go and what he can achieve.

While I was at the conference, I bought myself a piece of autism awareness jewellery.  It is a chain with a puzzle piece on it, the puzzle piece being the universal symbol for autism awareness. Behind the puzzle piece is a circular disk with a quote engraved on it. The quote is a perfect reflection of the possibilities that lie ahead for George, if he is given the right support along the way.

“Give me a place to stand and I can move the world”  ~ Archimedes ~

Filed Under: autism, parenting Tagged With: , , , , ,
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Social uncommunication

November 1, 2010 By

Today is a big day for the autism community.  It is the day of the global communication shutdown, in support of individuals who spend their lives on the autism spectrum.  Those participating in the shutdown are voluntarily doing without Facebook and Twitter for a day. The idea behind this is for us to experience for one day what our loved ones with autism go through as part of their daily lives – the frustration and feeling of lostness that comes with not being able to communicate.

For all intents and purposes, Facebook and Twitter do not exist for me today.  The only thing that will be posted under my name to my Facebook wall will be the auto-publish of this post.  If anyone tags me in comments or pictures today, I will not know it. If anyone messages me – either privately or to my wall – they will have to wait until tomorrow for a response.  I will not find out until tomorrow morning whether anyone helped me win Fast Money in the Facebook Family Feud app.  I have not gotten to see anyone’s Halloween pictures, I don’t know how my Scottish friend’s job interview went, I don’t know what anyone’s up to today. Much of what happens today I will probably never know about, because by the time I get back onto Facebook tomorrow, it will be old news.  Same with Twitter.  If anyone is waiting on the edge of their seats for tweets from me, they’d better settle in for the long haul.

It’s an interesting experience, partly just because of the habit of it. Giving up Facebook for a day is a bit like giving up smoking for a day (actually, there’s an idea: a global non-smoking day in support of those affected by cancer). I remember what it was like when I gave up smoking fourteen years ago. One of the hardest aspects of it was simply breaking the habit of physically picking up and lighting a cigarette after a meal, or as an accompaniment to my morning coffee.  Similarly, it is now my custom in the mornings to pour myself a coffee and drink it while first reading emails, and then seeing what’s going on in Facebook Land. I almost clicked the Facebook icon today just because it’s what I always do.

So what I am I learning from this experience? Do I feel a better sense of understanding for what my son lives with?

To be honest, probably not. Oh, don’t get me wrong. I do feel the frustration of non-communication. I do feel that I am cut off from a part of my life that I have grown to be dependant on, and in a sense, I am feeling a sense of what it is like for George. But I am mindful of the fact that I am doing this by choice.  I know that it is a one-day thing, and that tomorrow I will be able to catch up on much of what I am missing today.

George lives with his social communication difficulties day in and day out. He has not chosen to separate himself from the world. He cannot make the choice to wake up tomorrow and be fully verbal and socially conversant.  Tomorrow, when I return to the world of social media, George will still have autism.

I am still glad that I and thousands of other people have done this. Maybe, in some small way, this global effort will make the world a better place for George and people like him.  Maybe the people who have chosen to be a part of this shutdown will, in the future, be a little more tolerant of children they see having meltdowns in public. Maybe someone will give a job to someone with autism. Maybe a politician, somewhere in the world, will vote in favour of a bill to help special needs individuals.  If a child has trouble getting a point across in a classroom, maybe the teacher will recognize the possibility of autism instead of dismissing the child as “stupid”. Maybe a doctor will finally listen to a mom who has been begging for an evaluation referral for her child. Maybe this shutdown will lead to a lot of little good deeds that will have a ripple effect throughout the world.

Today will not enable me to know what it is like to be autistic. But it does give me hope for a future in which people with autism are recognized as valuable, integral parts of the fabric of human society.

Filed Under: autism, Communication Tagged With: , , , , , ,
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Mister Fidget

October 12, 2010 By

George has been getting into everything lately.  And I mean everything.  He opens and closes doors, peers into the refrigerator, moves the lever on the dishwasher door back and forth, and sends the blender into a fruitless frenzy of activity. He gets into cupboards and removes things.  He finds stuff that can be poured, and he pours it.  He turns taps on and off. He has succeeded in deprogramming the remote several times. He finds things in squirt bottles and squirts them. He jabs the straw into those little cardboard juice boxes, and then gives an almighty squeeze to see the juice shooting up and hitting the ceiling. The light on the fish tank gets turned on and off so often that the poor fish have probably completely lost any circadian rhythm they had to begin with.

As much as George loves to fidget with things, turn things on and off, open and close things, pour things, he hates it when anyone else does anything. My attempts to cook dinner, for instance, are accompanied by this contant commentary.  Close the fridge. Microwave off. Close the dishwasher. Close the drawer. Close the cupboard. Leave the milk. Tap off. And on and on and on.  While all of this is going on, I’m tripping over a lanky seven-year-old who is darting around the kitchen trying to put things away, close things, and turn things off.

Running the kids’ bath last night was an adventure. James picked out two boats that he wanted to play with in the bath.  He put them in the tub, I started the water running.  I did what I usually do, which is to close the bathroom door and then go off to gather towels and pajamas while the water is running. When I went back into the bathroom a couple of minutes later, the water had been turned off, the tub was empty, and James’ boats were nowhere in sight. James, it must be said, was not at all pleased.

After a brief search, the boats were located in a toy box, and we tried again. This time, James stood guard at the closed bathroom door, like a miniature sentry. Gerard worked hard to distract George, who was repeatedly going, “Tap off! Tap off!” After what felt like seventeen hours but was in reality a couple of minutes, the bathtub was ready, and I turned the tap off.  George was instantly calm.

James was happy. He climbed into the tub and started playing happily with his boats, among the bubbles in the water.  George had kicked up such a fuss that I was not really expecting him to get in. But he ran off to get a few pieces of Lego, which he tossed into the water.  Then he calmly got in, sat down in the water, and played with his Lego.

When compared with a lot of the other stuff I have to deal with on a day-to-day basis, this behaviour is really not that bad. It’s just inconvenient and exhausting to deal with all the time.  There is, however, a giant silver lining to it: when George is engaging in this behaviour, he is a lot more verbal than usual. We are trying to look past the messes and spills, the fact that we have to keep replacing groceries that get poured out, and the general inconvenience of it all, to see the potential opportunities offered by the increased use of words.

Sometimes troublesome behaviour is a predecessor to a giant leap of progress. Even while I complain about the fact that it takes me twice as long as it should to get anything done, I recognize that this could mean exciting times for ourselves, and more importantly, for George.

Filed Under: parenting Tagged With: , , , , ,
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Band-Aid solution

August 9, 2010 By

This morning I had one of those little moments with George that I love so much, one of those “Wow” moments that indicate progress. I was engaged in my usual frenetic morning activity – getting myself ready, getting James ready, trying to find time to cram some breakfast into me, trying to keep up with James’ constant chatter and questions about why birds have feathers. George was still in his pyjamas – his morning routine is his Dad’s responsibility – and he was wandering around counting in his sweet little sing-song voice. I noticed him heading towards the stairs, and somewhat absently, I said, “George, where are you going?” George replied, “Upstairs”, and upstairs he went. I continued with whatever I was doing, and it was only about ten minutes later, when I was trying to shoehorn a reluctant James into his socks, that I suddenly thought, “Holy crap! George appropriately answered a ‘Where’ question!”

George’s speech – or the lack thereof – is a source of deep concern to Gerard and myself. We know that he can speak – in other words, he has the physical capacity to do so. We know from the sentences that he constructs out of fridge magnets that he has the vocabulary and the ability to string a decent sentence together.  He simply chooses not to talk. I don’t think he has anything against it, he just doesn’t see the point of it. He doesn’t see speech as a social communication tool, he sees it as a functional tool to be used only when he wants something and is not able to get it himself. This is why, when George answers a question so naturally and spontaneously instead of simply giving me a blank gaze and going on his way, it is a big deal. We are starting to see these little glimpses into a world of language for George, and it never fails to lift our spirits.

We had one of those glimpses about a week ago, when I was in the house doing the never-diminishing pile of laundry (I have come to the conclusion that clothes in laundry baskets actually reproduce) and George was playing in the sprinkler in the back yard. All of a sudden I heard him cry out in what sounded like pain. With James on my heels, I went out to see what was going on, and there he was, sitting on one of the patio chairs clutching his foot.  I asked him what was wrong, and he looked me right in the eye and said, “I need a Band-Aid”.  James, bless his little heart, immediately said, “I’ll get them!” and he hotfooted it into the house. While James was inside, I coaxed George into showing me his big toe, which had a cut on it from a thorn on a weed.

Now, previously, George would have simply freaked out.  The sight of blood, even a little bit of it, scares him a lot, to the point where he can barely function. But this time, he had presence of mind to hold it together for long enough to identify and label exactly what was needed. Once he had communicated it to me, he allowed himself to fall apart a little. He was visibly relieved when James came flying out of the house with the Band-Aids, and once the wound had been covered up, he calmed down completely.

I immediately went through the sequence of events with him. George got hurt. George knew he needed a Band-Aid. George asked for a Band-Aid. George got a Band-Aid, and now George is OK. That simple reinforcement was intended to cement in his mind that when he speaks, things happen that relate directly to what he is saying.

Now, if only that were the case when I try talking to my husband while he is channel-surfing…

Filed Under: autism Tagged With: , , ,
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Why so quiet?

July 16, 2010 By

Some time back, my son James, who is all of four years old, announced that he had a pet monster named Billy. Billy, apparently, is a yellow monster with tall hair.  He is friendly, and judging from James’ descriptions, he is the laziest being on the planet.  From time to time he will sit beside James while he is playing or eating, but for the most part, he just sleeps. Sometimes, rather bafflingly, Billy will perch on my head as I go about my day.  Occasionally, James will yell at me because I inadvertently walk through or stand on Billy. An apology is always called for: I have to stand there apologizing to an imaginary monster, feeling – and no doubt looking – like a complete idiot.

The existence of Billy is a testament to James’ active imagination, and also to his veryu sound verbal skills.  This kid is so good at putting his mental pictures into words that I can almost picture Billy perched on the couch next to James watching him eat his spaghetti. James can talk.  James does talk.  Once James gets going you cannot get him to stop.  His thoughts and stories just run out his mouth – very coherently, but sometimes to the point of exhausting his audience, who has to keep track of increasingly complicated storylines.

James and his dad are in a dead heat for the title of “Talker of the family”. I tend to be somewhat quieter, and George doesn’t really talk at all unless he has to.  This is not unusual for a child with autism, but it is something that we are on a permanent quest to change. In today’s world, people need the ability to talk – or at least, to communicate. George has become remarkably self-sufficient in many ways: he will go to all kinds of lengths to do something himself in order to avoid asking for it.

It is easy to attribute this speech aversion to autism, but that does not really answer the question of why. Sure, George doesn’t talk because of his autism, but why is it that auties have this challenge?  In the beginning the answer seemed simple: lack of vocabulary. By the age of three, George only had about thirty words – ten or so of which he was using in their correct contexts, and never more than one word at a time.  Almost four years later, the vocabulary has been increasing exponentially.  George can label just about everything he sees, and he can correctly identify a number of verbs, adjectives, and emotions. He is able to string together simple sentences now. He uses his alphabetic fridge magnets to construct elaborate, grammatically correct sentences that we have yet to hear spoken. So the vocabulary, grammar, and sentence structure are there.  The comprehension is there too, since George will respond appropriately to most things that are said to him.

Another possibility that was presented to us is that auties frequently have a problem with motor planning. What this means is that a kid might have the physical strength and ability to, say, throw a ball, but if he has never thrown a ball before, he will have trouble figuring out what steps he needs to follow in order for the ball to become airborne. There are a lot of fine motor activities involved in speech, and the theory is that auties just cannot figure out how to translate the thoughts into vocalized sound. George, however, can read. He reads out loud from all kinds of materials. He produces the words and they sound correct. Motor planning is clearly not the issue here.

All we’re left with, then, is the simple fact that George does not see the point of talking. Speech serves a purely functional purpose for him. He uses it to express a want or a need. He will say that he would like milk, that he wants to go and play in the back yard, or that he would like a hug. He will answer questions. But apart from one or two rare occasions, he will not use speech to initiate a purely social interaction. He will not say things like “I love you” unless it is said to him first.

We are starting to see some promising signs, though. A couple of weeks ago, he asked me, completely off his own bat, if I was OK. When his brother accidentally spilled a cup of milk, George reacted with a genuinely spontaneous “Whooooooops!” While he still uses speech mostly to request things, he is at least starting to request things of a more social nature.  He will say, “Let’s run!” to indicate that he wants to play a chasing game, or “Horsey!” to indicate that he wants to jump on my back, ride around on me, and pretty much cripple me for the next four days.

I suspect that George will never be much of a talker.  I think he will always be quiet and shy – and that’s OK – he has to be true to who he is and the rest of us have to respect that.  But little by little, we are seeing him emerge for brief moments into our world, and he is allowing us little glimpses into his.

Filed Under: autism, Children, Communication, Speech Tagged With: , , , ,
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Stop the world, I need to breathe!

May 8, 2010 By

To say that the last week has been a bit eventful would be like saying Hitler was a bit aggressive.  It’s either feast or famine in my life.  Things will chug along, same-old-same-old, for weeks at a time, with nothing changing and nothing really newsworthy happening.  Then all of a sudden, I will have several weeks’ worth of events will flock to me like mosquitoes flock to my husband (seriously, bugs love him and for the most part, avoid me.  Why is that?)

Last Sunday I ran a race, the Sporting Life 10K in downtown Toronto.  It was a phenomenal event featuring more than 14,000 runners and superb race organization.  The logistics of planning something that involves that many people must be akin to a nightmare, but these guys pulled it off flawlessly.  The run itself was a lot of fun.  The route was easy, downhill most of the way, and the weather was perfect.  The predicted thundershowers failed to materialize, but the cloud cover and the gentle breeze were in evidence.  I completed the run in 1:05:00 – fast enough for a personal best time for the distance, but still leaving plenty of room for more personal best times in the future.

A quick word about something Gerard did for me before the race.  When he and James dropped me off at the start line, I gave James a kiss, and then went round to the back of the van to pick up my bag.  Only to see that Gerard had propped up a framed picture of my Dad next to my bag.  Dad, who died five years ago, was also a runner – one of the best in South Africa at his prime – and this was Gerard’s way of telling me that Dad was with me.  I was so touched, it brought tears to my eyes.

Several hours after the race, I started feeling a little off.  I figured that I had pushed myself on the run, not eaten soon enough afterwards, and consumed way too much coffee.  Feeling a little sick made complete sense to me.  But then – there’s no polite way to describe this, really – I started tossing my cookies.  Big time, for several hours.  Many hours, in fact.  Until 4:00 the following morning.  Even when there were no cookies left, the cookies continued to be tossed.  It was clear that I had a bug.  I had felt fine for the run – perhaps the bug was lurking there in the corner, just waiting for its moment to arrive.  Although the throwing-up incidents came to an end after about sixteen hours, I felt weak and drained for several days.

On Sunday afternoon, about an hour after I started feeling sick, I heard from Robert, the brother of my friend Tim.  Tim, who had recently been diagnosed with stomach cancer, had passed away.  Tim and I were friends for years.  We wrote columns for the same e-zine, and Tim was my unofficial tech support guy.  When George was diagnosed with autism, Tim was the guy who recognized my need for an outlet; a place to write and vent about autism and what my family was going through.  He gave me a forum to do so, and he was supremely supportive of everything – my parenting, my running, my writing.  He was also one of the funniest people I’ve ever known.

Fast forward to Thursday afternoon.  I was sitting at work, an hour away from going to the Keg with a few of my coworkers to bid farewell to someone who was leaving to go and live in Abu Dhabi.  I had resolved to drink nothing but water at the Keg – I was still feeling mild effects from the weekend stomach bug.  Work was going smoothly enough, when I got a phonecall from George’s therapy centre.  The news was good and bad.  The good news is that they wanted to put George into something called the school stream.  Instead of receiving one-on-one therapy, he would be in a simulated classroom environment with four other children.  The concept sounded good but the timing sounded bad.  When I expressed the opinion that George would not be ready for this by the proposed start date of September, I was told that if he continued with his one-on-one therapy, he would most likely be discharged in December.  Meaning that by January, he would be thrown full-time into a school system that he is nowhere near ready for.  The one day a week of school that he does get is challenging enough.  What this whole conversation left me with is the feeling that I am having to make a critical decision that could make or break George.  It’s like playing Russian Roulette with my child’s future.  What I decided, there and then, was that we had to fight as hard as we needed to to get the best for George.  Thanks to the advice of someone I know who has been through these fights for her own son and knows the system backwards, I was able to tone down some of the anger and gloves-off fighting attitude that I would have gone in with.

I didn’t only drink water at the Keg that afternoon.

On Friday morning, Gerard and I had a meeting at the therapy centre.  We got to see the classroom that is used for the school stream kids, and we were allowed to observe proceedings.  We asked a ton of questions, and got a clearer picture of the program.  In school stream, a teacher works with a group of five children in a mock classroom setting.  Each of the five kids still has a one-on-one support staff member with them, to prompt them as needed.  It’s kind of like a cross between what George is getting now and school.  The whole idea is get kids used to the idea of following school routines, walking in line, participating in class discussion.  In essence, school stream prepares kids for full-time school.  It’s a half-day program; for the other half-day, the kids are in fact in school.  That aspect of the program is simply to get the kids used to being at a real school every day, even if it’s just for a couple of hours.

Here’s what sold us on this program: social communication.  That is George’s single biggest challenge – one that, by its very nature, one-on-one therapy cannot really address.  The school stream program could be hugely beneficial to George from that aspect alone.  The whole thing is based on group interaction and the need to communicate and participate.  The program typically lasts for a year, but if the child needs it for longer, it can be extended.  It includes regular speech therapy, occupational therapy, and social communication workshops.

We said yes.  On seeing the program in action and getting all the facts, it does seem like the right thing to do.  It is the next logical step in this roadmap that is George’s life, and I am excited about the potential it has for him.  He will be continuing with his current program until September, and then switching to school stream in September.

After this was all sorted out, Gerard and I went on to James’ school where there was another occasion for us to attend.  James is a new inductee to the school system, having just started Junior Kindergarten last September.  With a Christmas birthday, he is the youngest and smallest kid in his class.  He needed special nurturing in the beginning, and his teacher, Mr. T., took him under his wing.  James adored his teacher, who was popular with the entire student body: he doubled as the school librarian and frequently gave the kids a break on their late fees.

In December Mr. T., who had recently celebrated his thirtieth birthday, contracted pneumonia and died.  It was a huge shock for everyone; I found myself with the task of explaining the meaning of this to a kid who was still a couple of weeks away from his fourth birthday.  I had to try and make him understand that Mr. T. loved him very much, but was never coming back.  Over the last few months, James has dealt with alternating cycles of grief, denial, and acceptance.

On Friday, he got to say goodbye.  The school put together a memorial assembly, a celebration of life in honour of Mr. T.  James and his classmates sang a song called “It’s a Great Day”, a cheerful song that Mr. T. would have approved of.  My heart swelled with pride and my eyes filled with tears.  There were more songs performed by other classes, quotes, a wonderful slideshow.  I had the honour of meeting Mr. T.’s family – his wonderful parents, brother, and partner.  Will this be effective closure for James?  Only time will tell.

So now I am in a state of exhaustion and very heightened emotion.  I feel overwhelmed and a little stressed.  I know that I just need to give myself time to wind down from all of these happenings.  I am sure tomorrow’s 19km training run will help!

Filed Under: autism, Bereavement, Medical, running, School, Teacher Tagged With: , , , , , , , , ,
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