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George’s New Hat

May 14, 2011 By

When my Mom came from South Africa for my wedding, she came bearing gifts for the boys. Among other things, each of them got a new hat. James wears his because it’s cool, and because none of his friends at school has an “Africa hat”. George wears his because he’s weird about hats. For George, a hat is not just a hat. It’s an essential part of his routine, one that he feels completely lost without.

George’s previous hat was provided by my Mom as well. She mailed it over to me about a year ago, and since then it’s been practically glued to his head (except for the times when I sneak it into the washing machine while he is sleeping). The new hat is identical to the old hat. It’s got the same “South Africa” lettering on it, and it has the same animal pictures in the same pattern. The only difference is that while the old hat was cream-coloured, the new hat is blue.

For George, switching hats is a big deal. Imagine what it would be like if someone decided to remove your head and replace it with a new one. It may seem like an extreme example, but that is, for George, what switching hats is like. He got so comfortable with the old one, and so used to it, that getting rid of it was an unbearable prospect, one that resulted in meltdowns and anxiety attacks (mostly on George’s part, but a little bit on mine too).

There were house guests galore for a couple of weeks leading up to the wedding, and that in itself was a lot for my routine-dependent child with autism. Gerard suggested that maybe this was not the time to switch hats on George, and I had to agree. So we left it for a while. By last weekend, things had quietened down considerably. The wedding was a week in the past, and the only guest remaining was my Mom.

During a rough-and-tumble moment of play, George’s hat fell off. On a whim, I grabbed it and shoved it into the washing machine (it was starting to smell a little gamey). I took out the new hat and put it on George’s head. Predictably, he went ballistic. Screaming, kicking, tossing the hat away from him, crying with utter distress.

Fortunately, the old hat was not an option. At that moment, it was wet and sudsy and being tossed around in the washing machine.  So there was no choice but to persevere with the new hat.

As George tossed himself screaming around the floor, I maneuvered him onto his back and sat on his legs, leaving his arms free. The hat was on the floor behind him, but within his reach. I looked into his eyes and started throwing out sums at him.

What’s four times five?

What’s three plus four?

What’s twenty minus six?

And so on. Each time I tossed out a question, George answered it. He seems to have a genuine love for numbers, and this technique is proving to be a surefire way of distracting him when he’s upset.

Sure enough, he gradually calmed down. When he started reciting times tables, I knew we were close. And then, slowly but surely, while he was still reciting his times tables, he reached behind him and casually put the new hat on his head.

It was a minor battle, but it was a battle nonetheless. And we won it, me and my boy.

Filed Under: autism, Determination, Hats, Transition Tagged With: , , , , , , , , , , ,
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The Meaning Of Friendship

April 15, 2011 By

When George was a newborn, I joined an online group for parents of living children who had also experienced pregnancy or infant loss. Having gone through two pregnancy losses, I was paranoid about everything connected with my new baby. Did those sniffles indicate a cold or something more serious? Why wasn’t he nursing? Was that little bump to the head going to cause permanent damage? Was I actually going to be able to keep this tiny scrap of a human being alive?

In the online group, I found a home – a group of women whose experiences, while all very unique, gave us a common ground. We consoled and comforted one another, offered advice and reassurances, laughed and cried with one another. We became friends. And as you find in any group of friends, there was drama. We had disagreements and conflict. Some people left never to be heard from again, others left and came back.

Seven years on, the core group of us are still friends. The online group itself is not as active as it once was, because most of us are friends on Facebook, and we communicate that way. But we are still as much of a support for one another as we always were. Through seven years (and in some cases, more), we have seen each other through births and deaths, marriages and divorces, relocations, bankruptcies, illnesses, post-partum depression, and even a prison sentence. We have been there for each other through everything.

In 2007, George was diagnosed with autism. As I dealt with the implications of this, including my own emotional fallout, my girls were there for me. Their love and support helped keep me buoyant at a time when it would have been so easy to drown. These amazing women, who had already helped me stay sane through relationship and financial problems, the loss of my father, and my pregnancy with James, once again banded together to help me cope.

And then, a little over a year ago, I found another online group of friends – these ones parents of children with autism. They wormed their way into my heart in the same way my first group had. Although the general conversations centre around different issues, the sense of love and support is present in both groups. My autism friends have been part of my life for substantially less time, but they have helped me over so many hurdles. They tell me I’m a good Mom when I’ve struggle to deal with George’s behaviours. They celebrate with me when he achieves a milestone, and they commiserate with me when a stranger in a grocery store says something ignorant about my child.

Both groups of people are brutally honest in their opinions. They have the strength and the integrity to tell me what they really think, instead of telling me what they believe I want to hear.

From the two groups combined, I have met exactly three people in person.

Occasionally, someone makes a distinction between online friends and IRL (“in real life”) friends. To me, there is no such distinction. Just because you communicate with someone primarily through email or Facebook, that doesn’t mean they are any less real. The only word in the equation that means anything to me is “friends”. And that is truly what these people are. I cannot imagine my life without them. I do not know how I would have weathered the storms of the last few years if they hadn’t been there to keep me afloat and give me reality checks when I needed them.

This post is dedicated to my friends at PALC_group and Parenting_Autism. Thank you for being the wonderful people you are. I love you all.

(Photo credit: http://www.flickr.com/photos/ilamont/4329364198)

Filed Under: autism, Friendship, life, parenting, Pregnancy Loss Tagged With: , , , , , , , , , , ,
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The Wheels On The Bus Go… WHERE?

April 14, 2011 By

The start of the next school year in September is going to be a big time for our family, as both boys make the leap to full-time school. In August, George is being discharged from the therapy centre where he currently spends his mornings, and James will be graduating from half-day Kindergarten and going into First Grade. It is a big adjustment for both boys, and although I expect some fallout, particularly from George, I am not too concerned. I have faith in both of the boys’ schools.

It’s the school buses I’m worried about.

For James, this isn’t an issue. We live too close to his school for buses to be in the picture for him (much to his disappointment; James would love to ride in a school bus like his big brother).

George, on the other hand, needs the bus, and four years’ worth of problems in the school bus system have taught us a very unfortunate fact: when it comes to scheduling school bus runs, special needs children are treated as an afterthought. The children who do not have any disabilities – in other words, the ones who as a rule are more adaptable and resilient – have their scheduling sorted out very early on in the school year. And the children who do have disabilities – the ones who are vulnerable, have higher levels of anxiety and more reliance on routines – easily spend six weeks or more being picked up at different times, by different drivers, and spending inordinately long periods of time on the bus, while their parents try to figure out what is going on.

Like most parents of young children, I want to know where my kids are at all times. I want to be able to know that at this time, George is on the bus, or at that time, James is eating lunch at the daycare. I do not want to be wondering whether or not George is still at the therapy centre and why the school is calling me to ask why he hasn’t shown up yet.

Last year, right after the Thanksgiving weekend, there was an incident with George’s bus that, while turning out OK, could have had terrible consequences. At that point, we had struggled with the bus company for almost two months getting George’s schedule worked out, and we thought that it had finally been resolved. George was being picked up at a consistent time from the therapy centre by a driver he knew from the previous year, and he was spending half an hour at most on the bus before being dropped off at school for the afternoon.

On the first day back after the Thanksgiving weekend, George was picked up at the usual time by the usual bus driver. He was driven to school.

The only problem was this: it was the wrong school.

Thank goodness George had on a seatbelt lock, which prevented him from getting up, walking off the bus, and getting lost or worse. Thanks to the seatbelt lock, someone had to actually get onto the bus to remove the seatbelt.

The teacher who took George off the bus didn’t know what was going on. She took the driver’s word that George was supposed to be there. It was only when the driver had left and George was standing in the principal’s office with a confused babble of grown-ups surrounding him that someone realized that a mistake had been made.

For a regular kid this would have been bad enough. For a child with autism who is afraid of people and places he doesn’t know, and who has severe communication impairments, it was downright traumatic.

Somehow the principal figured out who George was, and through a series of phonecalls, was able to figure out where he was supposed to be. A child’s booster seat was dug up from somewhere, and the principal bundled George into his car and drove him to the right school.

It only then, when George had arrived at his own school, that someone thought of calling me and Gerard to tell us what had happened. Up until that point, we had been completely oblivious to all of this.

While we were unbelievably grateful to have our child home safe and sound at the end of that day, we were haunted by thoughts of “what if”. The thoughts of “what if this happens again” prompted us to spend the next few weeks trying to figure out what the hell had happened.

We never did receive satisfactory answers. We do know that the bus driver was not at fault, that she was given the wrong information from higher up. We also know that in said higher-up’s attempt to avoid responsibility, the bus driver was relieved of her duties. There were no attempts made to figure out what had gone wrong so that steps could be taken to prevent it from happening again.

And in a few short months, we are going to have to fight a new battle for a new school year.

(Photo credit: http://www.flickr.com/photos/alextakesphotos/149198520)

Filed Under: autism, Children, School, School Bus, System Tagged With: , , , , , , , , , ,
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The T-Word: A Scary Word For Autism Parents

April 13, 2011 By

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)

Filed Under: autism, IBI, School, School Stream, Therapy, Transition Tagged With: , , , , , , , , , , , , , ,
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The T-Word: A Scary Word For Autism Parents

April 13, 2011 By

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)

Filed Under: autism, IBI, School, School Stream, Therapy, Transition Tagged With: , , , , , , , , , , , , , ,
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My Name Is…

April 4, 2011 By

Yesterday, while I was tackling my mountain of laundry that never seems to get any smaller no matter how many loads go into the washer, George came up to me and said, “My name is Albert.”

My mind did quite a double-take, let me tell ya! I mean, he’s never even uttered the sentence, “My name is George” and here he is, announcing that his name is Albert.

My first thought was, of course, Who the hell is Albert? I don’t know anyone named Albert, and as far as I know, George doesn’t either.

George giggled, I giggled, the moment passed and he ran off and left me to the mercy of my laundry.

This evening the Albert theme was revived when Gerard gave George a hug and said, “Who does Daddy love?”

George got a twinkle in his eye and yelled out, “ALBERT!” at the top of his lungs, and then collapsed in a heap of helpless giggles.

That George made up this little joke of his own volition is hugely significant. It is not the first time we have seen him display his funny, quirky sense of humour – but this is a new theme. It shows imagination and creativity, and the best part of it is this:

It shows an awareness of the concept of “funny” and an intention to make us laugh.

Have I ever mentioned how much I love this kid…?

Filed Under: autism, Humour Tagged With: , , , ,
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There Will Be Hills

April 1, 2011 By

My running has been very much on again/off again throughout this winter, and it’s been causing me some degree of stress. It’s not that I haven’t wanted to run, and I have still laced up the running shoes when I’ve been able to. It’s that life has just gotten in the way lately. We have had an interesting run of illnesses in my family over the last several weeks – hopefully the cold that I have had over the last week will represent the last of the winter ailments.

Add to that the fact that it’s been winter, and the weather has been – well, crappy. Toronto had a very cold winter, resulting in thick sheets of solid ice on the sidewalks that I have wanted to avoid. There’s no point in going running when there’s a good chance of breaking a leg. So much of the running I have done has been on the treadmill. Not ideal, but it’s better than nothing. The thing is that I can only stomach the treadmill for so long. So I have done very few distance runs lately.

Brecause of this cold, I have not done any runs at all for about a week and a half. Usually I would, since the cold has been only in my head and hasn’t affected my breathing or anything below the neck. But I have erred on the side of caution because I have a race coming up tomorrow. I would rather rest and increase my chances of being well enough to participate.

And the strategy seems to have worked. Apart from a few residual sniffles, my cold is gone, and I will be able to run the race tomorrow. I’m not expecting it to be a stellar performance. It’s 8km, which I always find to be an awkward distance. It’s just too long for me to just go hell-for-leather from start to finish, but it’s too short to justify the pacing strategies that I use for longer distances. In addition, there will be hills. Lots of hills.

But still, this is a significant race. It marks the start of my 2011 racing season, and it will kick off my training for the Toronto Women’s half-marathon at the end of May. The Toronto Women’s half-marathon is a stepping stone to my main event of the year, the Scotiabank Toronto Waterfront half-marathon in October – my annual Run for Autism.

And that, as we all know, is the reason I run. It is my way of doing something for the autism community.

What better day to kick it all off than tomorrow: World Autism Awareness Day.

The karma of that brings a glow to my heart.

There will be hills. Every single one of them will be worth it.

(Photo credit: http://www.flickr.com/photos/bazylek/5096924747)

Filed Under: autism, running, Running for Autism Tagged With: , , , , , , , , ,
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There Will Be Hills

April 1, 2011 By

My running has been very much on again/off again throughout this winter, and it’s been causing me some degree of stress. It’s not that I haven’t wanted to run, and I have still laced up the running shoes when I’ve been able to. It’s that life has just gotten in the way lately. We have had an interesting run of illnesses in my family over the last several weeks – hopefully the cold that I have had over the last week will represent the last of the winter ailments.

Add to that the fact that it’s been winter, and the weather has been – well, crappy. Toronto had a very cold winter, resulting in thick sheets of solid ice on the sidewalks that I have wanted to avoid. There’s no point in going running when there’s a good chance of breaking a leg. So much of the running I have done has been on the treadmill. Not ideal, but it’s better than nothing. The thing is that I can only stomach the treadmill for so long. So I have done very few distance runs lately.

Brecause of this cold, I have not done any runs at all for about a week and a half. Usually I would, since the cold has been only in my head and hasn’t affected my breathing or anything below the neck. But I have erred on the side of caution because I have a race coming up tomorrow. I would rather rest and increase my chances of being well enough to participate.

And the strategy seems to have worked. Apart from a few residual sniffles, my cold is gone, and I will be able to run the race tomorrow. I’m not expecting it to be a stellar performance. It’s 8km, which I always find to be an awkward distance. It’s just too long for me to just go hell-for-leather from start to finish, but it’s too short to justify the pacing strategies that I use for longer distances. In addition, there will be hills. Lots of hills.

But still, this is a significant race. It marks the start of my 2011 racing season, and it will kick off my training for the Toronto Women’s half-marathon at the end of May. The Toronto Women’s half-marathon is a stepping stone to my main event of the year, the Scotiabank Toronto Waterfront half-marathon in October – my annual Run for Autism.

And that, as we all know, is the reason I run. It is my way of doing something for the autism community.

What better day to kick it all off than tomorrow: World Autism Awareness Day.

The karma of that brings a glow to my heart.

There will be hills. Every single one of them will be worth it.

(Photo credit: http://www.flickr.com/photos/bazylek/5096924747)

Filed Under: autism, running, Running for Autism Tagged With: , , , , , , , , ,
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Ask me how I feel today…

March 30, 2011 By

Go on, I dare you! Ask me how I feel!

Well, since you ask… I am streaming with a cold, my head is congested, I am sneezing non-stop, and because of my upcoming wedding, I am stressed to the hilt.

And yet…

I feel GREAT!!!

So I have a cold. But it’s only a cold. I don’t have cancer, or multiple sclerosis, or HIV.

So I’m too sick to run right now, and will quite possibly have to miss my race this weekend. But I have two legs that work, and I am physically fit, and I will run again when this cold is gone. I have it way easier than my amazing friend Fran, who has become a runner despite the fact that she lives with cystic fibrosis.

And OK, it’s still a little chilly for my liking, and we’re still getting the odd snowfall in late March. But I live in Canada, not Iraq or Afghanistan or Libya, and all we get falling out of the sky is snow and rain, not bullets.

When I go outside, I have to wear a coat. When people in Japan go out, they have to wear masks to avoid inhaling dust from earthquake and tsumani debris, and they have to worry about radiaion poisoning.

I am stressed from wedding planning. I know people who are stressed from divorce, and other people, like my Mom, who grieve for their soulmates who are no longer here.

While we’re on the subject, every day I grieve for the wonderful Dad who raised me. I have a friend who grew up without a true Dad, but with a child rapist who happened to be her father by biology only.

I spend two hours a day commuting, and there are days when it becomes overwhelming. But I have a job to commute to. I can afford to feed my family and buy birthday presents for my children.

It is true, I do have a child with autism, and every day brings its own unique challenges. But I have my kids, and every time I hug them I think of my other amazing friend Amy, who sat at her baby’s bedside for five months before cradling him in her arms as he died.

So how do I feel?

I’d say my life is pretty darned good, and I am truly grateful for what I have.

(Photo credit: http://www.flickr.com/photos/hurricanemaine/3429008592/)

Filed Under: life Tagged With: , , , , , , , ,
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Ask me how I feel today…

March 30, 2011 By

Go on, I dare you! Ask me how I feel!

Well, since you ask… I am streaming with a cold, my head is congested, I am sneezing non-stop, and because of my upcoming wedding, I am stressed to the hilt.

And yet…

I feel GREAT!!!

So I have a cold. But it’s only a cold. I don’t have cancer, or multiple sclerosis, or HIV.

So I’m too sick to run right now, and will quite possibly have to miss my race this weekend. But I have two legs that work, and I am physically fit, and I will run again when this cold is gone. I have it way easier than my amazing friend Fran, who has become a runner despite the fact that she lives with cystic fibrosis.

And OK, it’s still a little chilly for my liking, and we’re still getting the odd snowfall in late March. But I live in Canada, not Iraq or Afghanistan or Libya, and all we get falling out of the sky is snow and rain, not bullets.

When I go outside, I have to wear a coat. When people in Japan go out, they have to wear masks to avoid inhaling dust from earthquake and tsumani debris, and they have to worry about radiaion poisoning.

I am stressed from wedding planning. I know people who are stressed from divorce, and other people, like my Mom, who grieve for their soulmates who are no longer here.

While we’re on the subject, every day I grieve for the wonderful Dad who raised me. I have a friend who grew up without a true Dad, but with a child rapist who happened to be her father by biology only.

I spend two hours a day commuting, and there are days when it becomes overwhelming. But I have a job to commute to. I can afford to feed my family and buy birthday presents for my children.

It is true, I do have a child with autism, and every day brings its own unique challenges. But I have my kids, and every time I hug them I think of my other amazing friend Amy, who sat at her baby’s bedside for five months before cradling him in her arms as he died.

So how do I feel?

I’d say my life is pretty darned good, and I am truly grateful for what I have.

(Photo credit: http://www.flickr.com/photos/hurricanemaine/3429008592/)

Filed Under: life Tagged With: , , , , , , , ,
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