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Not Autistic Enough?

July 11, 2011 By

Apparently, my son is not autistic enough to qualify for television documentary stardom.

Several months ago, we were approached by the producers of a television documentary series. They were planning a program about whether or not there was some kind of environmental link to autism, and they wanted to get footage of families living with autism. I exchanged a few emails with the producers, and eventually they came to our home to meet us and see George.

We were perfectly happy to be a part of this. We are strong on autism advocacy and awareness, and we take any opportunity we can to help spread the word about the realities of autism – both the challenges faced and the potential for achievement.

When the producers came to see us, something about their approach to the conversation raised a red flag to us. We got the sense that they were trying to push one side of a particular autism debate without giving any airtime to the other side. What the debate is and what side of the fence we fell on is not relevant. Our issue was with the integrity of the whole thing. It just seemed to us that the agenda behind this documentary was to sensationalize an aspect of autism.

But we kept an open mind. Maybe we were reading this wrong, and just needed more context. After the meeting, we sent the producers on their way and waited for them to get in touch with us.

About three weeks passed with no contact apart from a couple of basic “we’ll be in touch soon” emails. Eventually, I got a message from one of the producers, telling us that George was “not autistic enough” to be included in the program. Apparently, they were looking for a child with very severe autism – one who is completely non-verbal and very low-functioning – so that they could better “demonstrate the challenges of a typical autism family.”

Herein lies my issue: there is no such thing as a “typical autism family”. Autism manifests in so many different ways. There are kids who are fully verbal but go into meltdown when someone tries to touch them. Then there are kids – like my George – who hardly talk at all, but who love to be hugged and cuddled. Some kids are academically sound and socially weak, others have some social skills but do not perform academically. There are kids who excel in math, music, art, or any number of other things, and there are some who don’t. There are the kids with sensory processing issues and the kids without. There are so many elements of autism, and they can be combined in an infinite number of ways, with varying degrees of intensity.

With all of this variation, how can a couple of producers, neither of whom has had any prior personal experience with autism, talk about a “typical autism family”? Every family with a child autism has its own very unique, individual challenges to deal with, and I worry about the media showing only one side of it and calling it “typical”. That, to me, is disrespectful and unfair to the vast majority who are not represented.

The way I see it, our initial reservations had merit: the producers want to sensationalize autism. They want to show only the negative, challenging, heartbreaking aspects of it, and give no airtime to the possibilities, the potential, and the idea that people with autism can and do make valuable contributions to society. They want to profile a theory – a theory, mind you – about what might cause autism in some kids – and present it as something that is relevant to all kids.

I don’t think this kind of reporting does any favours to anyone. Not the families who have to live with autism. Not the public, who are not being informed about autism in a fair, unbiased way. And certainly not the kids themselves, who are being portrayed in a way that is only accurate for a few of them.

I am quite happy for my family to not be the vehicle for that kind of media sensationalism.

(Photo credit: http://www.flickr.com/photos/16961193@N06/2887772100/)

Filed Under: Accurate Portrayal of Autism, autism, Documentary, Sensationalism, Television Tagged With: , , , , , , , , , ,
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The boy on the bus

July 6, 2010 By

Yesterday, while I was in the bus on the way home, a child started to cry. He couldn’t have been older than two, and he cried in that all-out, heart-felt, unrestrained way that only very young children can achieve. It was a scorching hot day and the bus was crowded: the child was stressed and exhausted and there were no seats available for him or his mother. To add insult to injury, the child’s shoe came off and rolled behind a couple of other passengers. This can be a big deal for a small child who’s already having a hard day.  Because the bus was jam-packed, well-meaning passengers were not able to bend over to pick the shoe up, so it had to stay where it was until the crowd had cleared a little.

The crying was relentless, and painful to listen to.  The child’s mother was trying to calm him down while at the same trying to take care of the other child she had with her.  She was clearly overwrought; I had a moment of direct eye contact with her, and she had pure desperation written all over her.  Not surprisingly, people were staring, drawn as they are to focus on loud noises around them. Some were understanding, some were visibly annoyed. One man offered the mother and child his seat: she politely declined, saying that she wanted to remain near the front of the bus, no doubt to make a quick escape without having to fight through crowds.

After a while, the lost shoe was returned to its rightful owner, and the child’s mother succeeded in calming the crying somewhat.  Instead of out-and-out howls of outrage, there were quiet snuffles with the occasional bout of loud crying. Eventually, the mother got off the bus with her two children, but not without being rudely pushed out of the way by a man whose life must have depended on him exiting first.

As soon as the bus doors closed, the woman sitting beside me, who you could tell just by looking at her had issues, loudly proclaimed, “Well! That child needs a good hiding!”

Maybe it was the not-so-subtle waves of disapproval and judgmentalness radiating from her.  Or maybe I was just in one of those perverse bloody-minded moods I get into from time to time. Or maybe I’ve simply become one of those moms who cannot shut up when her view of how the world should be is violated. Whatever the case, I couldn’t just let that remark go.

“Why spank a sweet child like that?” I asked innocently.

The woman looked at me incredulously, and scrunched her face up into a sour expression, earning her the title in my mind of Lemon-Face. She said, “He is so badly behaved.  I cannot believe any mother would let her child get away with that.”

By now, she had the attention of every single passenger on the bus. It was blatantly obvious to everyone, except her, that the child had not been misbehaving.  He had just been very upset and unable to cope with it. None of the other passengers, however, wanted to participate in the dialogue, and I found them all looking expectantly at me.

I stated the obvious, which was that she should give this kid a break, he was no more than two, and then went on to say, “Besides, you don’t even know the circumstances. Maybe he was just at the doctor and had his shots. Maybe he’s not feeling well.  Maybe he fell on the playground and hurt himself.” I paused a beat, and said what was really on my mind: “Maybe he has a disability like autism and is reacting to sensory overload.”

Lemon-Face was nonplussed.  Clearly the type who routinely expresses prejudicial opinions without being challenged on them. Not to be outdone, she said, “Autism is just a fancy way of saying a child is undisciplined and out of control.”

Uh oh.

I had to explain, of course.  I had to tell Lemon-Face how flourescent lights can feel like fire burning directly onto an autistic child’s retina, how the hum of normal conversation can be like shouting, how a gentle touch can, at the wrong moment, feel like nails piercing the skin.  I had to describe my own son’s absolute fear of Wal-Mart check-out lines, triggered by some combination of senses that I cannot understand.

I had to explain how offensive it is to hear strangers remark that my son needs a good hiding – remarks that are always accompanied by the clear but unspoken implication that my child is that way because I’m a bad parent.  These strangers don’t understand what it’s like to be my son, or to be the parent trying to help him make sense of a situation that is scaring him.

I had to make it absolutely clear that spankings are not for everyone – least of all for children with autism who are having a hard enough time as it is coping with whatever sensory overload is getting to them at any given moment.  And yes, I explained that I am in tune enough with my son that I know when he is having autistic meltdowns that he cannot control, and when he is simply being a brat.  Yes, I discipline him if the situation calls for it, but no, that discipline does not involve spanking.

I don’t usually launch into impromptu autism education sessions while using public transit. On the contrary, my commutes to and from work are my “me time”, the only time I can really switch off from everything and just read a book (sad, I know, but we take what we can get). On this one occasion, though, I felt that I had to stand up for autistic children and their parents.  If that woman left the bus with a smidgeon more awareness and understanding, then I believe I did my small part to make the world a better place.

Filed Under: autism, Children, parenting Tagged With: , , , ,
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Empathetically speaking

June 21, 2010 By

Two years ago, while I was home alone with the kids, I sliced my hand open on a broken glass.  I called my husband to take me to the hospital to get stitched up, and enlisted the babysitting services of my mother-in-law. As I sat with a bloody dishcloth wrapped around my hand, waiting for said husband and mother-in-law to show up, the kids stood there gawking at me.  To put it more accurately, James stood there gawking at me.  Then only two years old, he hadn’t yet grown a sense of empathy.  He was intensely curious about why Mommy was clutching her hand and making funny noises. George just laughed.  I guess the sight of me sitting there with a white face and straggly, witchy hair, dripping blood all over my clothes, could be seen as amusing, but at the time I was too focused on whether my hand was still attached to appreciate the humour of the situation.

That George’s reaction was so at odds with the situation is not surprising.  Lack of empathy is one of the hallmarks of autism. When James is hurt or upset, George will stand there laughing at him, much to poor James’ distress.  He has no way of understanding that George is not trying to be mean.  It’s not a case of George deliberately laughing at someone else’s pain. He simply doesn’t have the social cues to know when someone else is actually in distress.  The rest of us know that when someone cries, they’re sad, or when they say “ouch”, they’re hurt. People with autism have difficulty with this.

George has discovered a series of Youtube videos that fascinates him no end.  The videos feature an orange talking to other fruits on the kitchen counter.  The orange is incredibly annoying and makes all kinds of jokes at the expense of whichever fruit is unfortunately enough to be engaged in a conversation with it.  The videos always end by the orange saying something like “knife”, and then watching in horror as the other fruit gets sliced up to the sound of its own screams.  The videos are quite funny in a disturbing, South Park kind of way, and absolutely not appropriate for children.  George finds them absolutely hilarious – or he did before I got wind of them and started an endless campaign to stop him from watching them.

Yesterday, George’s attempts to watch the annoying orange were blocked.  Every time he tried to access them, I would close the browser window and drag him away from the computer.  He was getting very upset and agitated – more so when I announced that his allotted time on the computer was up.  The legs were kicking, the hands were flapping, the little face was wearing an expression of utter distress.  Just as I thought we were getting to the point of a meltdown, he looked directly at me – a relatively rare event – and with supreme effort, he said, “Mad”.

I was bowled over. This was a new development – a milestone to be celebrated, despite George’s state of upset.  In most circumstances, George would have simply exploded in a fit of frustration.  But now, for the first time ever, he had used an emotive word to express how he was feeling.  Instantly I saw the possibilities: if he was able to identify and label his own emotions, surely the next step would be to identify what other people were feeling and react appropriately.

Somehow I was able to divert George’s attention from the violent fresh produce videos.  I allowed him a bit of extra time on the computer, and he clicked onto Youtube videos showing scenes from Toy Story.  There is one scene where Buzz Lightyear and Woody are weaving in and out of traffic as they try to catch up with the family’s moving van.  The other toys band together and try to help them, and during all of the excitement Mr. Potato Head topples over and some of his bits fall off.  At this point in the video, George tapped me on the shoulder to get my attention.  He pointed at the computer screen and said, “Ouch.  Hurt.”

Empathy!  George had just shown empathy!  Who cares that it wasn’t for a real person in an actual situation?  Who cares that he felt empathy for a toy in a fictional tale?  He saw a situation, assessed it correctly, and identified that Mr. Potato Head was hurting.  And he wasn’t even laughing – his face was all seriousness.

They say things happen in threes, and this turned out to be the case yesterday.  After the excitement of the dual milestones in the morning, there was an incident in the evening that capped off the day in the best possible way.  Both of the boys had spent the afternoon in the backyard, and they were absolutely filthy (word of advice: kids + sand + ice cream = not a good combination). Although tempted to simply hose them down in the backyard, I settled for giving them a bath.  George, as is his custom, grabbed his box of alphabetic fridge magnets and dumped them into the water.  He doesn’t play with them when he’s in the bath, he just likes to have them with him.  It makes bathtime a very interesting and noisy event.

When bathtime was over, I let the water out of the tub, and got the kids towelled off and in their jammies.  Then it was time to dry the alphabetic magnets.  If they are not shaken off and dried, George dumps wet letters on his bed and everything gets soaked.  So I was kneeling by the tub, drying off letters and putting them into the empty plastic fish tank that serves as their receptacle, and I dropped one.  I discovered that when those things are dropped in a bathtub, they bounce about a mile.  I was unceremoniously hit in the face by the letter “Q”.

George was standing by, patiently waiting for his letters.  Usually this incident would have brought forth peals of infectious giggles.  But there was silence for about ten seconds.  Then, George tentatively approached me, and shyly said, “Mommy?” I said, “Yes?”, and he said, “Are you OK?”

Not only was this such a wonderful demonstration of empathy, it was the most natural spontaneous exchange I have ever had with George.  It was an exchange that was appropriate to the situation, one that he initiated himself with no prompting.  It was a genuine moment of connection, one that will be with me for a long time.

Filed Under: autism 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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To sleep, perchance to dream

April 16, 2010 By

On Monday night, George had one of his stay-awake-for-half-the-night nights. It happens once every two weeks or so.  He goes to sleep easily enough, aided by the melatonin we give him with his bedtime milk, but then he wakes up in the early hours of the morning – anywhere from midnight to 3:00 a.m. – and he stays awake for about three hours.  He is not upset, he does not cry.  Apart from occasional bursts of laughter (which, to be honest, are a bit creepy at four in the morning when nothing is funny), he is actually very quiet.  He is not still, though.  He gets up and wanders around, or he climbs into bed beside me and starts playing with my hair, or he sits on the end of my bed rocking back and forth.  It is a level of activity that leaves me in an uncomfortable state of consciousness: he is not active enough to force me to just get up and do something useful, and he is not still enough for me to be able to drift back to sleep.  So I lie there in bed in a state of exhaustion, trying to settle him and get him to go back to sleep.  Experience has taught me that I cannot really force this.  When he has these nights, the best thing for me to do is just lie as still as I can, ignore George as much as possible, and wait for him to go back to sleep.

As long as he sticks to his regular schedule – about once every two weeks – I can handle it.  I always feel like the undead the following day, but at least I know that I’ll be getting relatively normal sleep for the next two weeks.  This is just part of his autism that I’ve kind of learned to live with.  Autism and sleep disorders frequently go together, and I reckon that once every two weeks isn’t too bad considering what some parents have to go through.

This time he did not stick to the schedule.  Instead of waiting for two weeks, we were treated to another one of those nights after a mere two days.  On Wednesday afternoon Catherine came.  Catherine is the new respite worker, and this was the first time she was working with George.  For a first encounter, they did OK with each other, but George was definitely stressed out by this change to his day.  After Catherine left, he was prowling around with a mood that could have gone either way at a moment’s notice.  At bedtime he was narky, unsettled, and uncooperative.  We were patient: knowing that changes in his daily routine do tend to reflect on his sleeping patterns, we had kind of expected this.  George eventually settled down in my bed and went to sleep.

At about 1:00 a.m. he woke up in a mood.  He was crying, he was angry, and he was noisily rooting around in his box of alphabetic fridge magnets announcing to the world that he wanted “small letter a”.  Much to his chagrin, we removed his access to the box of fridge magnets, and with some soothing, he settled down with his dad.  To give him more space, I abandoned my spot on the bed and went to sleep on the sofa-bed.  Predictably, George followed.  When he wakes up in the middle of the night, he goes into full-on “Mommy mode”.

For three hours, he was playing with my hair, sitting up on the bed, lying down again, demanding that I scratch his back, telling me he wanted popcorn, getting up to wander around and look for his box.  I was mostly ignoring him, occasionally telling him to lie down, moving his hand away from my hair (the way he constantly plays with my hair sometimes drives me crazy, especially in the middle of the night).  I was watching the clock, and at about 3:30 a.m. I ruefully accepted that I would not be going for my planned early morning run.

George eventually fell asleep at about 4:00, and I fell asleep shortly thereafter.  I woke up just over two hours later, almost weeping with exhaustion.  Somehow I got through the day, helped no doubt by the knowledge that I would be leaving early due to a medical appointment. Throughout the day I was filled with anxiety: Catherine was coming again.  Were we in for another tumultuous night?

George and catherine had a successful session.  When Catherine left George gave her a hug; he was happy and smiling for the rest of the day.  He was contentedly playing with his box of magnets, which had been restored to him.  Although I felt pitifully tired, I went for a run (it was a good one too – I well and truly flounced my target pace).  At bedtime, George was relaxed and cooperative, and he went to sleep right away.  There was a brief moment of anxiety in the middle of the night when we heard him digging through his box.  Once more, I removed the box – this time, George went back to sleep immediately, and I spent the rest of the night in glorious oblivion.

Having had two virtually sleepless nights over the course of three days, I still feel exhausted.  Sometimes a single good night of sleep is not sufficient to wipe out the sleep deficit.  I am looking forward to another night of good slumber and a restful weekend.

Filed Under: autism, sleep Tagged With: , , , , , , , , ,
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Moments of connection

April 14, 2010 By

Last night I had a hot date with the vacuum cleaner.  The boys had come home with a frightening amount of sand in their shoes, which had of course ended up on the carpet.  When I walked into my living room, I had a moment of severe dislocation.  Had I accidentally wandered onto a beach?  The sand was actually getting between my toes and making them all gritty.  Hence the unscheduled quality time with the vacuum cleaner.

I was moving at speed, like a crazed woman.  Before I could vacuum, I had to ensure that toys were picked up and put away, that there were no socks or other items of clothing littering the floor, that there were no cups lying around (my family uses an inordinate amount of cups, most of which get left under beds, beside the couch, or at random points on the floor).  I was barking out orders to the kids to tidy up their things, and they were so startled by this flurry of activity that they actually did what I asked.  Things were picked up, vacuuming was done, linen was laundered and replaced.  While all of this was happening, Gerard was in the kitchen cooking a very nice dinner.  I have to say, it’s great having a man who can cook!

Finally the work was done.  The floor was clean, the sheets were fresh, the vacuum cleaner was unplugged and put away.  Then George caught sight of a tub of Playdough high up on a shelf and wanted it.  I told him he couldn’t use the Playdough on the grounds that I was in no mood to have bits of Playdough ground into my freshly cleaned carpet.  I should mention at this point that I was somewhat cranky last night.  I hadn’t slept the previous night and I was beyond exhausted.  I was afraid that I would not cope with the idea of getting down on hands and knees to dig Playdough out of the carpet.  Besides, it was so close to the kids’ bedtime and it would have been a bad idea to allow George to start a new activity.

But George was not taking no for an answer.  One thing about autistic kids is that they can be very focused on what they want.  We once endured a four-hour tantrum because George was trying to spell a sentence with his fridge magnets and ran out of the letter “a”.  So I was a little worried about the possibility of the Playdough issue escalating.  George kept repeating, over and over, “I want Playdough, please.  I want Playdough, please.” His use of the word “please” was tearing at my heartstrings.  It sounded so plaintive, so imploring.  It made me feel like I was being mean to my child.

Then George, who is nothing if not resourceful, dragged over the little red plastic kiddies’ table.  The table has a gammy leg that keeps coming off – not to be deterred, George reattached the leg, stood on the table and tried to reach the Playdough.  Needing a quick diversion, I decided to turn this into a game.  I ran to him as he stretched up and grabbed him off the table.  I ran with him through the house and dumped him on my bed.  George, it must be said, was quite surprised and momentarily startled.  Then he saw the laughter in my eyes and started giggling.  “Tickle,” he ordered.  I obliged, and was rewarded with the sound of his laughter.  It is the best sound in the world, that laugh.  George has one of the most infectious laughs I have ever heard.

Next thing I knew, he was off the bed and pulling my hand.  He dragged me all the way to the kitchen, him giggling so much he was almost out of breath, me feigning reluctance.  In the kitchen, he pushed me right up against the counter, then he slowly backed away, making sure I was staying put.  Then he turned around and ran away!  I chased him through the house, following the sound of the giggles, and finally caught him on the couch.  I was tickling him, hugging him, and giving him lots of the deep pressure sensory input that he craves.  Then James joined the fray and we were all tickling each other until we collapsed in a breathless, giggling heap.

As I lay on the couch with my two boys, I glanced up at the shelf and noticed that the Playdough had disappeared.  Gerard, taking the opportunity provided by the distraction, had removed it and put it out of sight.  The Playdough was forgotten, a possible crisis had been averted, and my boys went to bed smiling.

This is why parenting is the best thing in the whole world.  All of the stress in the world dissolves during those moments of connection.

Filed Under: autism, 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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World Autism Awareness Day

April 2, 2010 By

Today is World Autism Awareness Day.  This is the day to reflect on people of all ages who are touched by autism.  Wherever they happen to be on the spectrum – whether they are verbal or not, high- or low-functioning – they are important members of society.  They deserve love, respect, admiration for all they have to live with and overcome, and opportunities.  Autism manifests in countless ways.  There are probably as many forms of autism as there are autistic people.  Some auties talk, some don’t.  Some have enough capacity for academic learning to complete high school and go to university, some don’t.  There are auties who are brilliant artists, some who are mathematical whiz-kids, photographers, musicians.  Some become famous.  Some don’t become famous, but manage nevertheless to carve niches for themselves in the communities in which they live.

We had a very good World Autism Awareness Day.  It started with George requesting and wearing a pair of shorts instead of the long pants I had selected for him.  Traditionally, George has a hard time with the transition of seasons.  If he’s used to wearing winter clothing, he doesn’t want summer clothing.  If he is used to shorts and T-shirts, he will not wear winter clothing until he has experienced the freezing cold weather for himself.  So the fact that he transitioned so seamlessly into summer clothing is a big deal indeed.

Once we were all dressed and ready for the day, me, my mother-in-law, and my friend Fran sat at the kitchen table chatting and having a lazy morning.  James was playing with his cars, George was wandering around the room, not really doing anything.  Gradually, we became aware that he was counting while he was wandering.  So far, not really a big deal.  For a long time, George has been rote counting, and even doing mathematical sums, but it’s never really been applied to the real world.  This morning, however, we realized that there was a purpose to his counting.  He was counting how many chairs were in the room, how many tables, how many cups were on the table.  Instead of rote counting, he was counting groups of objects.  He was using the concept of counting for something real.

While I was still celebrating this very meaningful accomplishment, George paused his constant activity to tug at my sleeve.  “Let’s sing O Canada”, he said.  And he started singing our national anthem.  Admittedly, he wasn’t word-perfect, but he did really well for a six-year-old, especially one with autism and limited verbal skills.  He sang sweetly, with lots of heart.  He made me proud to be Canadian, and proud to be his Mom.

Later in the day, we went to the park.  I sat on a bench watching my boys running and playing, I pushed them on a swing and showed James how to go down the fireman’s pole.  I laughed as James grabbed a handful of leaves and dumped them over George’s head, and I smiled when they insisted on holding hands with each other for the walk home.  It was a perfect brotherly moment for the two boys.

And so I wrap up a wonderful day, and I prepare for tomorrow’s 10km race.  I am eagerly looking forward to the race.  It will be a significant and exciting step in my quest to run for autism.

Filed Under: autism, parenting, Siblings 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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