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Getting Roped In

January 21, 2011 By

"Peep And The Big Wide World" by George

A few months ago, George went through a phase of tying one end of a rope to his ankle, and the other end to the ankle of a willing or not-so-willing participant.  He would then insist that the other person walk with him to wherever he wanted to go. He didn’t care what the other person was doing, so frequently I found myself trying to cook dinner or do the laundry with a kid attached to my ankle.  He also didn’t mind who the other person was, as long as they had two legs and the ability to walk.  Guests to our home would discover that there was suddenly a child at their feet tying up their ankles.

The rope wasn’t always a rope.  Usually, it was a bathrobe cord, which meant that every time I needed to put on a bathrobe, I would stalk around the house cursing while I looked for a cord to tie it with.  When I got the brilliant idea of hiding the bathrobe cords, my mother-in-law’s measuring tapes started disappearing, much to her consternation.

Initially, we weren’t sure what all of this ankle-tying business was all about. The whole thing loosely resembled a three-legged race, but we couldn’t think where George would have been exposed to that.  We’re pretty sure they don’t do that kind of thing at the therapy centre.  Lord, can you imagine trying to do that with a bunch of kids who all have autism?  But we went with the three-legged race thing because we just couldn’t think of what else it could be.

At around the same time, both of the boys were discovering YouTube videos featuring Peep And The Big Wide World, a children’s TV show that remains a firm favourite with both of them. You should listen to the theme song – it is very catchy.  I have to confess that I find the show itself kind of catchy.  Shut up!  I know I’m 41 but I can still be a kid, can’t I?

[youtube=http://www.youtube.com/watch?v=hqikhlUodC8]

To provide context for the rest of this story, I have to give you a brief outline of the cast of characters in this show.
Peep – a baby chick who has just emerged from his egg, who is very curious and wants to explore the world that he finds himself in.
Chirp – a baby robin who has a strong sense of fairness, and frequently finds diplomatic solutions to a problem.  Her biggest ambition is to be able to fly.
Quack – a purple duck who I think actually looks more like a grape with legs.  He is obsessed with wearing a hat (a characteristic he shares with George), and he is very vain and bossy.  He thinks the sun shines out of his you-know-where.

So anyway, one evening I happened to be passing the kids’ computer while they were watching a YouTube episode of Peep.  And all of a sudden the whole rope-around-the-ankle thing fell into place.  In this particular episode, Chirp and Quack somehow find their legs joined by a rope, so they have to go everywhere together.

All of this time, George had been replicating this episode.

Can we take just a moment to consider the significance of this?  George was engaging in PRETEND PLAY!  For a child with autism, this is through-the-roof HUGE! What made it even bigger was the fact that it was pretend play that required a partner.

Hmmm.  Pretend play that incorporates social interaction. To borrow a phrase coined by my online autism support group, Holy Moly Shit! This represents an exciting chapter in George’s development.  He has outgrown this phase now, and he has not engaged in much pretend play since then, but it’s the potential that strikes me.  The fact that he CAN.  If it’s happened once, it will happen again.

Shortly after the ankle-tying phase came to an end, George drew his first real picture (i.e. the first picture that actually depicted something other than scrawls and scribbles).  I was most amused – and highly thrilled – to see that the picture was an illustration of George’s favourite Peep episode.

This kid astounds me. From time to time, he does these amazing things to remind me of what he can achieve if given the opportunity.

Archimedes said it best: “Give me a place to stand and I can move the earth.”

Filed Under: autism, postaday2011 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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Lost: the sequel

October 14, 2010 By

Two days ago, my vulnerable seven-year-old son who has autism was taken to the wrong school by the bus driver.  Through the miracle of technology, the principal of the wrong school (hereinafter referred to as School A) was able to determine that George was a student of the right school (hereinafter referred to as School B).  School A principal drove George to School B, where he was welcomed with open arms by his teacher.  School B administrator called Gerard to tell him what had happened.  Gerard called me.  Together, we spent a sleepless night thinking of how very badly this situation could have ended.  we had visions running through our minds of kidnapping, assault, and all other kinds of God-awful things.

The following day, we set out to find answers.  Clearly, we needed to know how and why a situation had arisen that could have had potential to severely compromise the safety of our child.

Gerard went to see the principal of School A. He pointed out that since George wears a special seatbelt lock to prevent unsupervised wanderings up and down the aisle, he could not have simply got up and got off the bus.  Who had taken George off the bus and why? The principal explained that although his school did have a new student, that student was not expected until later in the afternoon due to a medical appointment. When the bus had shown up, everyone had been surprised. A teacher had gone out to meet the bus, and the bus driver had told the teacher that George was transferring to School A.  The driver gestured at George and mentioned him by name.  The teacher had no reason to not believe the bus driver – she simply assumed that someone had not passed on some piece of information to someone else.  This is, after all, an administration.  These things happen.

Gerard’s next stop was the therapy centre.  He deliberately timed his arrival to coincide with that of the bus driver, with the intention of getting the bus driver’s side of the story. The bus driver claims that her supervisor had called her late on Friday to tell her that George was being transferred to School A effective from Tuesday (Monday being a stat holiday).  The bus driver, who knows George very well, was surprised enough to verbally confirm, in the same conversation, that George was the child being transferred. In accordance with these instructions, the bus driver drove George to School A on Tuesday, and only discovered the next day that this had been a mistake.

The supervisor is now claiming that she never named George as the child being transferred, that she had named some other child with a completely different-sounding name. The supervisor is removing the bus driver from George’s route, and is quite possibly going to attempt to fire her.

It sounds to me as if this is what happened: The supervisor gave the bus driver the wrong name.  Instead of saying Peter or Simon or whatever the other kid’s name was, she said George. The bus driver followed through on the instruction she was given, not knowing it was incorrect. Thereby unknowingly placing a child with autism in a very vulnerable situation. Now the supervisor is trying to cover up her mistake by blaming the bus driver, and the bus driver could end up without a job because of the supervisor’s mistake.

Is it just me, or is this story disturbing on many, many levels?

Filed Under: Children, School Tagged With: , , , ,
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Turn, turn, turn

September 9, 2010 By

To everything there is, apparently, a season.  There is a time for the sweltering heat of summer to give way to cooler temperatures and later sunrises.  There is a time for the light traffic associated with school vacations to be replaced by the usual mind-numbing gridlock.  There is a time for yellow school buses to reappear, for kids to start new grades and new schools, for parents to high-five each other over the fact that their household has survived an entire summer at the hands of little hooligans.

For families living with autism, there is a time to anxiously ride out the tough times that invariably come with a change in routine.

And for runners approaching their major race of the season, there is a time to kick up the training for the long runs, and there is a time to taper and rest.

There have been a lot of changes happening in my family, many of them typical back-to-school kind of stuff.  For James, our youngest, the changes have been minimal.  He has just started Senior Kindergarten, although I must admit that I have a hard time thinking about a four-year-old as a senior anything.  He is in the same classroom at the same school as last year, he has the same teacher and many of the same classmates.  I can only hope that this year will involve less upheaval and trauma then last year, when the much-loved teacher of James’ class suddenly died.

James himself is taking the new school year in his stride.  In fact, he was somewhat irritated when the previous school year ended.  From the day school let out for the summer, James wanted to go back. For the last two weeks of the school holiday, I had to do a daily countdown thing on the calendar to maintain my sanity and also James’.  Now that school has resumed, he’s as happy as a rat with a gold tooth. Will he be like this five years from now? Time will tell.

Change is also afoot for George. Last week he completed his formal one-on-one IBI therapy. On his last day we attended a graduation ceremony held in honour of George and one other little boy who was completing the program with him.  The two graduates stood there proudly holding their certificates (laminated, to prevent ripping) and wearing their little graduation caps.  I looked at my son thinking of how far he had come during his two years in the IBI program. Gone was the completely non-verbal, isolated, uncertain little boy who started the therapy.  In his place was a smiling, happy child, still not exactly talkative but at least talking to some extent. He savoured the attention being lavished on him, and rightly so.

This week George started a new phase in his life.  We are fortunate that although his routine has changed substantially, the new routine at least involves the same places that he is used to, and some of the same people.  In the mornings, he is going to the same therapy centre where he did the IBI, and he is attending a “school stream” program (a simulated classroom environment where there is a teacher as well as a one-on-one support person for each of the five kids). In the afternoons he is bussed to school, where he is in a special ed class.  Over the next two years he will be gradually mainstreamed, the general idea being that by the time he is in fourth grade, he will be fully mainstreamed in a regular class, but with special support.

So far, the change in routine has not caused that much disruption. George seems to be enjoying school stream and school.  He likes the school bus, and as mentioned, both school and the therapy centre are places that he already knows.  So we may get lucky with this one – we may escape the usual transition angst that hits our household at this time of year.

And me?  Well, my run for autism is a mere seventeen days away. My training is peaking round about now, with intense speed workouts and long runs.  My final long run before the race will be this weekend, when I will be hitting the road for 20km.  After that I am in taper mode.  I will run less, pre-race jitters will set in, and I will be driving everyone crazy by the time race day arrives.

Oh, and George finally lost his first tooth.  He has already announced that he wants to buy another pineapple with the money left for him by the tooth fairy.

Filed Under: back-to-school 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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A whole new world of hope

April 19, 2010 By

On Saturday morning I woke up full of anticipation.  Gerard, George and I were headed to York University to get the results of George’s latest assessment.  It had been a year since the previous assessment, and the results of that had left us feeling bereft and overwhelmed.  We did not need this latest assessment to tell us that George has made progress: we have seen that unfold right in front of us.  Every single new word and every moment of connection, however fleeting, has been a cause for celebration.  However, it is always nice to have these things acknowledged as part of a formal assessment, to receive confirmation that the progress we see is not just the imaginings of hopeful parents.

The psychologist who led the assessment started by talking about adaptive skills – play skills, social communication, daily living skills such as tidying up at the end of the day, going shopping, and knowing to look before crossing the road.  In this area, George has made very little progress over the last year.  He has not actually lost skills, but compared to typical children of his age, he is relatively further behind than he was a year ago.  We discussed possible reasons for this lack of progress: Gerard and I are often so exhausted and worn out by the demands of day-to-day life that sometimes we just take the path of least resistance.  On hard days it is easier to tidy up ourselves instead of going through the whole time-consuming and exhausting process of prompts and reinforcements that would be necessary to get George to do it.  But recognizing that short-term pain so often leads to long-term gain, we have to change our strategy.

As it turned out, that was the only bad-news part of the whole assessment.  We spoke about verbal skills: George’s vocabulary and use of language, whether he can read and spell, how much he understand what is said to him, his ability to follow instructions with and without additional prompting.  A year ago, George had the verbal skills of an eleven-month-old.  Now, he has the verbal skills of a 30-month-old.  He is still well behind where typical six-year-olds are, but the gains over the last year are huge.  He has made nineteen months’ worth of progress in just a year.  So while there is still a sizeable gap, the gap has narrowed.

When we started talking about non-verbal skills, the news got even better.  Non-verbal skills include things like cognitive skills, problem-solving, understanding of what numbers are for, the ability to see patterns and solve puzzles, and all that kind of good stuff.  George has, to put it simply, made a gigantic leap in this area over the last year.  A year ago, he was functioning at about a twenty-month-old level.  And now – I get goosebumps just thinking about it – he is functioning at a 51-month-old level.  That, my friends, is a gain of 31 months – more than two and a half years – over the space of just one year.  Yes, his overall functioning in this area is still about two years below where it should be.  But a year ago, it was about three and a half years behind.  Again, a narrowing of the gap.

Overall, George has moved down on the autism spectrum.  While he is clearly still on the spectrum and has a long way to go, his autism is not as severe as it was.  The therapy that he has been going to has been making an enormous difference, and with continued therapy and intervention, George can move that much closer to where he should be for his age.

I don’t have a crystal ball.  I cannot say for certain what George’s future holds.  Maybe he will never be much of a talker.  Maybe he will never be able to live completely independently.  Or maybe he will – who am I to say something like that cannot ever happen?  But there is no doubt in my mind that he is loaded with potential, and that he will be great at whatever line of work he ultimately chooses as an adult.

Whatever the future holds for George, he is my boy and I am so proud of him that I could just weep.  It is an honour to be Mom to such an amazing little boy.

Filed Under: autism, Medical, parenting Tagged With: , , , , , , , ,
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Autism funding – not a game for the faint-hearted

April 12, 2010 By

When George was first diagnosed with autism, I remember being overwhelmed by many things.  The overload of information, the attempts to separate the good information from the inaccurate yet guilt-inducing nonsense, the diagnosis itself, the fact that in an instant, all of my preconceptions of what my family’s life would be like were shattered, the confusing labyrinth of autism funding.

Somehow I navigated my way through the confusion and the funding.  It’s so easy to say that in one sentence, but the acquisition of funding was a long and painful process, one that was so complex that thinking about it made my head hurt.  Trying to figure out how the funding worked was like trying to memorize pi to 59 decimal places while simultaneously doing long division in my head.  In the end, once I had been told that I qualified to apply for funding (see?  You have to qualify just to apply), I took the application forms and all of my information to the good folks at Respite Services.  The Respite Services guy, with endless patience, helped me fill out the forms.  He wrote down lists of what supporting documentation I would need to send with which forms, where to send them to, in what sequence to send them, and what I would be able to actually use the funding for.  If it hadn’t been for the Respite Services guy, I would still be wandering around in the metaphorical maze looking like a lost fart.

If I’m to be completely honest, I still don’t really have my head wrapped around the funding.  Some of the funding is used for things like educational materials, specialized equipment or support aids, parking costs for medical appointments, anything that I have to actually purchase as a result of George’s autism.  Other funding is used to pay respite workers to come to my house and work with George.  Some funding is deposited into my account on predetermined days, other funding is reimbursed when I submit invoices.  I couldn’t tell you, though, which agency provides what funding or what all the acronyms stand for.

Anyway, I recognize that I am extremely lucky to have any funding at all.  Once our funding was first approved a couple of years ago, we hired a respite worker.  George had actually known her for some time – she used to work at his daycare and kind of transitioned into babysitting for us occasionally.  When the funding came through, she agreed to come to our place every Sunday morning to work with George.  She would play with him, give him some lunch, talk to him – all geared in a way to develop his speech and social skills.

This arrangement worked very well for a couple of years, during which this wonderful lady became a friend to our family as well as a respite worker.  Sadly, she became ill a few months ago and had to step back from respite work in order to focus on her health.  It was a blow to our family, but we completely understood.  We still keep in touch with her, and she has visited us a couple of times to say hello and see the boys.

We did have to get a new respite worker, though.  I had never actively recruited for one – our previous worker kind of came to us through circumstance.  So when the need arose, I called up my friends at Respite Services and told them I needed a worker.  They asked me a bunch of questions.  On what days would I need a worker?  What goals would they be helping George to achieve?  How energetic was George and what kind of things did he like?  Was he allergic to any foods?  Did we care whether the worker was a man or a woman, what age they were, or whether they spoke with an accent?  Some obvious questions, some fairly obscure ones.  In the end, we came up with a profile, and the Respite Services people sent out a notification to the workers they had on file.

Two weeks later, I got sent an email with four matches.  I read through the resumes, and immediately eliminated one because the worker had indicated a preference for working with adults over children.  I contacted the other three and last week, I met Catherine.  You know when you like someone instantly, the moment you first meet them?  That was Catherine.  She was cheerful and outgoing, and both of the boys liked her on sight – and they are pretty good judges of character.  We spoke with her at length, and agreed on regular days and times for her to work with George.  And she will be starting with us on Wednesday, when George gets home from the therapy centre.

We are looking forward to this new chapter in George’s life.  We are looking forward to seeing him interact with a new person, and we are excited about seeing the ideas that Catherine might come to the table with.

The jury will be out for a while, until we as a family have gotten to know Catherine better (and she us – we may be really groovy people, but she could turn out to not like us!), but we are hopeful.  And in the life of an autism family, hope is essential.

Filed Under: autism, parenting Tagged With: , , , , , ,
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Never forget the siblings

March 29, 2010 By

As I work towards my Run for Autism, my inspiration is George.  He’s the only member of my family – either immediate or extended – who has been touched by autism.  I could go on all day about his challenges, his strengths, and the fact that what most “typical” parents see as minor developmental milestones are, to me, gigantic accomplishments that make me want to jump for joy.  I am in the process of starting to work with a holistic lifestyle coach named Brandon: the first time I spoke to him he told me that while parenting in general is equivalent to a full-time job, parenting a child with autism is equivalent to an additional full-time job.  It makes sense.  I have to maintain two completely separate styles of parenting for my two children, because what works for one definitely would not be appropriate for the other.

And in this sense my Run for Autism is inspired not only by my autistic son George, but also by my neurotypical child James.  James, in addition to just being James, a unique individual in his own right, is also the brother of an autistic child.  Although he is chronologically the younger of the two, in most senses he is actually older.  He has the verbal skills, the social skills, the adaptive skills that his brother does not have.  There are times when he is called upon to understand the kinds of things that kids his age shouldn’t have to worry about.  He has a very strong sense of what is and is not fair, and when George’s autism leads to us reacting in a way that James perceives to be unfair, it can be very hard for his four-year-old mind to process.  Being the sibling of an autistic child cannot be easy.  And so when we do something to improve the lives of autistic children, we are also by extension doing something to improve the lives of their siblings.

We are very fortunate that James is the kind of child that he is.  He is a highly verbal, very social child.  He has opinions and he’s not afraid to express them.  Although there is definite sibling rivalry, James adores his big brother.  If he is given a cookie, he requests one for George.  If we do something simple like take George’s hat off his head in a playful moment, James will get upset and demand that we return the hat to its rightful owner.  When George is having a meltdown, James feels sad and says things about how he will take care of George.  He has never used the word “autism” in relation to George, but he is aware of George’s disability. Based on his character, both Gerard and I believe that James will grow up to be friend and advocate to his brother.

I frequently worry about whether I am doing right by James.  So much of James’ life is shaped by George’s autism.  A simple example is Mr. Potato Head.  George loves Mr. Potato Head.  He has about twenty of them, and he has to know where they all are at all times.  If anyone touches his Mr. Potato Heads he gets very upset.  Any Mr. Potato Head that enters the house is automatically deemed to be George’s property.  There have been times when James has tried to play with a Potato Head, and he’s been prevented from doing so, either by George himself or by parents who are too frazzled to deal with a meltdown.  Over time, James has been conditioned to not play with Mr. Potato Head.  I have no idea whether he’d like it or not, and I feel oddly sad that we’ll never find out.  Another one like that is Lego.  We tried getting James Lego that is different in appearance from what George likes, but we have had limited success.  James will still make the occasional attempt to play with Lego, and if I happen to be around, I play with him and fend off George’s intrusions.

I sometimes wonder whether James’ passion for trains and cars is genuine, or if it’s just something he has gravitated to because George isn’t really interested in them.  When these thoughts start troubling me too deeply, I console myself with the knowledge that James truly does love his cars and trains and gets a lot of joy from them.

What I really want to convey is this: autism does not only affect the individual diagnosed with it.  It touches every member of the family.  The autistic child is not the only one who needs special care and attention.  We must never forget the siblings.

Filed Under: autism, family, parenting, Siblings Tagged With: , , , , , , , , ,
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Retrospectively speaking…

March 25, 2010 By

This morning I indulged in a bit of retrospection.  I was looking back at the day, almost three years ago, when a doctor broke the news to Gerard and I that our son had autism.  I remember that moment with such sharp clarity that just thinking about it brings back that stab of pain to my heart.  As I sat in the chair in the doctor’s office, I could almost feel the physical force of my world crumbling; I am convinced that the odd buzzing sound I heard was the sound of my expectations shattering.  In that instant I learned that the phrase “to have a weight on one’s shoulders” is not merely metaphorical: I actually felt a physical weight being placed on my shoulders.

The next half-hour or so was intensely painful.  Gerard and I sat and listened as the doctor told us his prognosis for George.  He may never talk, the doctor said.  He has very limited capacity for learning, and as he gets older the gap between him and his peers will get wider and wider.  He will always have severe cognitive delays, he will not be able to function in the world of “normal” people without constant care and supervision.  He probably won’t complete high school; as an adult he may hold down a very basic job but he won’t actually have a career.  We, the parents, were advised to prepare ourselves for a lifetime of intense hands-on parenting.  It all sounded so hopeless, as if George was doomed to a lifetime of misery.

Once the disabling shock and desperation had worn off, I made a decision.  The doctor would be wrong.  I accepted that George might always be different to other people of his age, but we would do whatever it took to help George reach his full potential, whatever that might be.  I was not going to let the well-meaning but pessimistic doctor dictate what George would or would not accomplish.  I would become an advocate for George, I would learn as much as I could about autism, I would give him whatever opportunities were feasible.

And so the hard work began.  My first mission – on the advice of his speech therapist – was to teach him to point.  It was explained to me that pointing is a crucial precursor to basic speech.  Babies point before they can talk; pointing is a very simple, basic, and effective form of communication.  Most kids learn how to point intuitively; children with autism need to be taught.  And so I taught.  Every evening for nine months, I would sit with George and a variety of books, painstakingly pointing to this thing or that thing, using hand-over-hand assistance to help him point.  Prompting, reinforcing, encouraging, never giving up.  There were days when it seemed as if I was getting nowhere.

Are there words in the English language that can describe the immense, overwhelming emotion I felt on the night when George hesitantly, almost shyly, lifted up his tiny hand, formed it into the shape of a point, and with his index finger touched a picture of Bob the Builder in the book we were looking at?  The memory alone makes my eyes go misty.

Since that day, there have been many accomplishments.  George still doesn’t talk a lot, but he makes requests using full sentences.  He even says please.  In recent weeks, he has tentatively entered the world of imaginative play by pretending to be a turtle.  He can read, he can spell out full sentences using his alphabetic fridge magnets.  He counts to a hundred and beyond, and he is learning to do sums using the big wooden abacus that a relative bought for him.  He finds what he wants on the computer without assistance, even typing his own search strings into Google and Youtube.  He has unique but effective problem-solving techniques.  The teachers and therapists who work with him are united in their opinion that George is a very smart kid.  When it comes to numbers, he outperforms typical kids of his age.

There are challenges, of course.  There are the tantrums, the autistic meltdowns, that originate from things I cannot always identify.  There is his refusal to try foods he has never seen, his phobia of doctors, the fact that I have to cut his hair and his nails while he is sleeping to avoid a panic-induced meltdown.  There are the sleep problems that plague us from time to time, especially when there has been a change in routine.  There is his heartbreaking frustration when he tries to express something to us but does not know how to.  There are the times when I have to spend over an hour physically restraining him from banging his head on the wall or the floor.  There are the persistent social communication delays and his anxiety in big groups of unfamiliar people.

Yes, there are a lot of challenges, a lot of days when I want to tear my hair out.  But that doctor was wrong, damn it!  I wish I had the opportunity to tell him so.  I honestly believe that he would be very happy to know that in this particular case, he was wrong.

George is loaded with potential.  I have no doubt that as an adult, he will be one of many autistic people making a truly valuable contribution to society.  It is truly my honour to be running for him and for people like him.

Filed Under: autism, Medical, parenting Tagged With: , , , , , , , , , ,
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Who am I and what am I doing here?

March 17, 2010 By

I sometimes tell people that I am a normal mom – overworked, overextended, overscheduled, and overwhelmed.  But in my household, we use the word “normal” very loosely if at all.  For a start, I’ve never really believed in the concept of “normal”.  It’s too subjective – one person’s “normal” is another person’s “what the hell is going on here?!?”  And the fact that one of our children has special needs throws a wrench into the whole idea of normality anyway.

To start from the beginning: I am a transplanted South African living in Toronto, Ontario.  I proudly became a Canadian citizen three months ago, on the same day – indeed the same ceremony – on which my partner of eight years proposed to me.  Gerard and I have two children together.  George is six years old, and if I were asked to describe him in one word, that word would be “sweet”.  He may be autistic, but he is such a sweet, gentle soul.  He is touched with a kind of grace that is impossible to put into words.  His mind goes to places that are unreachable to the rest of us – these places are sometimes frustrating, both him and to his family – but at times he is so present, so with us.  He does not talk much and has a lot of trouble with social engagement, but he is a smart kid who can read (although not necessarily comprehend), count, add, and write his own name.  He is full of love.  He is never short of a hug for his family, and has a healthy level of sibling rivalry with his younger brother James.

To describe James, I would use the word “dynamite”.  James is four, and depending on your own personal views, his Christmas Day birthday can be seen as either a blessing or a curse.  We ensure that he gets his full quota of attention by throwing half-birthday parties for him in the middle of the year.  James is loaded with energy.  You know those cartoons in which a series of streaking white lines depicts a character running by so fast that you cannot see him?  That’s James.  The kid never stops.  He approaches life in the same way a bull approaches a china shop – as several visits to the Emergency Room over the last four years will testify.  He is always busy, always talking a mile a minute.  He gets into spats with George, but he is also a wonderful little brother.  He is considerate of George’s challenges – not because he has to be, but because he wants to be.

I am lucky to have Gerard.  He is a truly wonderful father to the boys.   We have been through some very hard times – so hard that at one point, we didn’t know if we would make it.  But we have gone through the fire and survived – and we now know that there is nothing we cannot work through.  We are planning next year’s wedding with lots of excitement and anticipation.  Although getting married isn’t going to change anything in practical terms, it will be symbolic of a new and wonderful stage in our life together.

My passion – apart from my family, that is – is running.  I used to run years ago, but having kids put a kaibosh on that for many years.  For ages, I tried to get back into it, but there was always a reason why I couldn’t.  Then, about a year ago, the right motivation came in the form of an email.  The Geneva Centre for Autism was entering a team in a major Toronto running event.  Parents were invited to register for the race and raise pledges.  All funds raised would go towards providing services for autistic children and adults – people like my son George.

Wow.  An opportunity to do something for my son.  As soon as I saw this email, I knew that I had finally found the reason that I would not give up.  Although I could barely run around the block at the time, I signed up there and then for the half-marathon, six months away.  For the next six months, I trained and rediscovered my love of the sport.  And on September 27, 2009, I stood at the finish line with a finisher’s medal around my neck and a village-idiot grin on my face.  My legs were screaming, but every other part of me was on an incredible emotional high.  I had done it.  I had run this race for my child.  And I knew I was going to be back.

The Geneva Centre is entering a team for the 2010 event, and I have already signed up for the half-marathon.  I am just emerging from three months of illness and injury, but my training is already getting back on track.  I have a busy racing season ahead of me, starting with a 10km event on April 3rd.  All of the training, all of the races that I participate in over the summer, will lead up to this one event – my run for autism on September 26th.

Follow me as I go through the trials and tribulations of training, the early morning solitary runs in the dark, the long Sunday runs with the sun beating down on my shoulders.  Moan and groan with me as I massage my aching muscles, and stand with me at the finish line as we celebrate a triumph for autism on the day of the race.

Filed Under: autism, family, fundraising, parenting, running, Siblings Tagged With: , , , , , , ,
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