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Autism Diaries: On This Day…

the autism boy

The Autism Boy

Thirteen years ago I was pregnant. The pregnancy was so new that nobody knew about it apart from me. I remember lying in bed hugging this secret close to me, this secret that I was sharing with no one but the baby growing inside me. I was terrified that my husband and I would experience a repeat of the loss we had been through just a few months previously. Stay with me, I silently begged the baby.

Twelve years ago I was a new mom. I spent time lying on a blanket with my months-old babe, holding his tiny hand in mine. I would look at his little fingers, at the curve of his cheek, and the fluttery eyelashes – and I would marvel at how something so small could be so perfect. I felt as if the future was a blank slate, just waiting to be written by this brand new human being.

Eleven years ago, I was a parent who had recently lost a parent. I held my one-year-old son, feeling immense gratitude that he had spent some time in his grandfather’s arms. I was afraid: when I lost my father, I lost a bit of my security. I somehow became more of an adult, and I wasn’t sure that I was ready for that.

Ten years ago, my little family had gained a new member. As I cared for my newborn baby, I worried about his older brother. I knew that something was not right, but the doctor said, “Wait. Give it some time.” When your instincts say one thing and your doctor says another, you have to decide which one to listen to. I listened to the wrong voice and waited.

Nine years ago, we had finally gotten the doctor to listen, and our firstborn son was on the waiting list for a developmental assessment. We didn’t need an assessment to know that something was wrong, but we were hopeful that whatever it was, it could be fixed. While we waited, we took our son to speech therapy and celebrated every single word that he uttered.

Eight years ago, my husband and I were trying to settle into our roles as autism parents. The initial shock of the diagnosis had worn off, and we were working our way through the labyrinth of government funding and services. At the same time, we were adjusting our dreams and goals to fit the new reality of autism.

Seven years ago, our autism boy was about to start his ABA therapy. It was a world that was completely unknown to us, a form of intervention that works for some kids but not others. Would it work for our boy? We had no way of knowing. A further assessment put him on the severe end of the autism spectrum, but we were urged not to lose hope.

Six years ago, we were one year into the ABA therapy, and we had seen our son make phenomenal progress. His vocabulary had exploded and we were starting to see the emergence of some amazing qualities. A follow-up assessment showed that he had made 23 months’ worth of gains in a 12-month period. Hope sprang eternal.

Five years ago, the boy was slowly, slowly being phased out of ABA therapy and into full-time school. We worried about whether the cessation of therapy would stall the progress we had seen him make. We were advised to expect a temporary plateau followed by slow but steady progress. Anything could happen, we were told. A full decade of school remained. A lot can happen in ten years. I held onto my rose-coloured glasses.

Four years ago, I suffered a devastating loss when my beloved aunt died in a freak accident. For the first time since the death of my father, I had to go away without my family. Leaving my husband and boys was excruciating, but I knew that I was needed on the other side of the world. The autism boy coped well with this big upheaval, helped enormously by his incredible little brother.

Three years ago, my stubborn optimism started to give way to realism. Yes, my son had many capabilities. He was doing well in his special ed program, and he was able to do things by himself, like get dressed and use the bathroom. He had come a long way since the days of his diagnosis. But there was still a lot that he couldn’t do. For the first time, I started to realize that in all probability, my boy would never attain complete independence.

Two years ago, we had to fight for our boy. The special ed programming at his school did not continue beyond Grade 6, and the placement he was slated for filled us with the horrors. The classroom – indeed, the entire school – was overcrowded and staffed with well-meaning but overwhelmed teachers. As I walked the hallways during my one and only visit, I detected an aura of barely contained hysteria. We were not going to risk the years of progress we had seen. And so, with my son’s principal by our side, we started a long series of meetings with the school board. And once again, we waited.

One year ago, the principal of my son’s school called with the news that the battle had been won. A special ed program for Grade 7 and 8 kids was being brought into his school – a school where the general student body forms a protective and loving wall around the special ed kids. I cried with joy, not only for my son, who was getting another two years in this amazing environment, but for all of the kids whose paths we had had a part in altering for the better.

Today, my son is in Grade 7, in his first year of the newly implemented program. He is doing well and continuing to make progress. I am happy with where he is, but I am afraid of where he is going. Because unlike the day of his diagnosis, when we had years of time ahead of us, we are now very close to the future we talked about then.

One year from now, the boy will be months away from finally leaving the security of the only school he has ever known. We do not know where he will be going for high school – that chapter of the story is starting to be written now. In the next few months – a full year ahead of when this would happen for typical kids – we will be starting to visit high schools, interview principals, look at special ed programs.

This year, next year, and for the rest of our lives, we will continue to do the best thing for our autism boy, to give him the opportunities he needs to reach his full potential – whatever that potential turns out to be.

This is an original post by Kirsten Doyle. Photo credit to the author.

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Autism And Mental Health

I'm Blogging for Mental Health 2015.

My son George hops off the yellow school bus and bounds up the driveway with his fingers in his ears – a throwback to last summer, when the sound of the tree-feller’s chainsaw hurt his ears. He shucks off his backpack, removes the hoodie that he will not abandon even during the height of the summer, and kicks off his shoes. Then, and only then, am I permitted to talk to him.

“How was school?” I ask him, as I always do.

“School was fine,” he says, as he always does.

“What did you do today?”

He doesn’t reply. Instead he starts peering at the brim of his hat, or running a finger along the edge of the door frame.

“George?” I ask, needing to engage him before he gets too far into his own head. “What did you do at school today?”

“School was fine,” he mutters.

“Tell me one thing you did today.”

“Played outside,” he says, after a pause.

“And what did you do outside?” I ask, hoping I’m accomplishing the tone of gentle persistence that I’m going for. He cannot feel forced, but he needs to know that I’m not giving up on this conversation. It’s a delicate balance some days.

“Kicked the soccer ball,” he says.

“Wow, that sounds like fun!” I say effusively.

Sensing that he’s fulfilled his obligation to talk, he runs off to turn on his computer. I sit on the stairs for a moment, feeling both exhausted and elated by the fact that I actually had a conversation – albeit a brief one – with my son. For most kids, this kind of exchange would not be a big deal. For George, it is.

George, now eleven years old, was diagnosed with autism when he was three. We had him assessed because he wasn’t talking, and even though he has come a long way since then, his speech and communication skills are far below those of his typically developing peers. This comes with a number of challenges, but there is one challenge in particular that I have never really spoken about.

How do I know if he’s OK?

I’m not talking about “OK” in the physical sense. George is able to tell me when he feels sick, or when a part of his body is hurting. He has even started to identify emotions, telling me when he’s sad or angry.

What I’m talking about is whether he’s “OK” from a mental health perspective. With my younger son, who is typically developing, it’s fairly simple. I have conversations with him, I talk to him about how he’s feeling, and from his natural expressiveness I can get a sense of whether everything is all right or not. I am well aware that childhood depression is a very real problem, I know what signs to look out for, and I have a reasonable degree of certainty that I would recognize it in my younger son.

With George, it’s a little more complicated, and from a statistical standpoint, it’s more of a concern. Individuals with developmental disabilities are more likely than the general population to experience mental illness, but they are less likely to be diagnosed, because it’s less likely that the people around them will realize that something is wrong. George, with his speech delays, does not have the words or the cognitive functioning to describe depression in a way that would enable me to recognize it.

Even the behavioural cues present in typically developing children may be different for those with special needs. It is easy – far too easy – to blame everything on autism. When a child with autism has a meltdown, or starts to cry for no reason, or gets lost inside his or her own head, everyone assumes it’s because of the autism. That is not unreasonable: in many cases, it is because of the autism.

But what about those times when it isn’t? What about the times when a child is banging his head against the wall because his mind is in a dark, desolate place and he doesn’t know how to express it? What if the other-worldliness is not symptomatic of autism, but of withdrawal? What if no-one realizes that depression has become the child’s companion, because in their well-meaning attempts to manage the autism, they just haven’t thought to consider anything else?

These concerns are part of what drives me to try to have conversations with George. Every single thing he can tell me – no matter how small it might seem – is like a golden nugget that I treasure. I lavishly praise his attempts to communicate, and every day, I encourage him to tell me something – anything – that happened to him that day. It is my hope that if, at some point, anything is going on in his life or in his mind that he needs help with, that will be the thing he tells me about that day.

This is an original post by Kirsten Doyle, written for APA’s Mental Health Blog Day. Picture attributed to the American Psychological Association.

 

 

 

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Autism Advocacy: 8 Survival Tips For Parents

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Yesterday, I shared my family’s recent success at securing a good Grade 7/8 program for my son, who has autism. The short version of the story is that my husband and I knew immediately that the program George was slated for would be very bad, not only for him but for his classmates. And so we went to bat for the kids. Over a period of seven months, we had meetings and phone calls with all kinds of people in the school board. A couple of weeks ago, George’s principal called to tell us that a Grade 7/8 program was being introduced in his current school. The news could not have been better. We would have been OK with a good program at any school, but George’s current school, which is fantastic in so many ways, was definitely the prize we were hoping for.

George was diagnosed with autism seven years ago. In that time, I have learned a lot about what works and what doesn’t work when it comes to fighting in his corner. Here are some of the big ones.

1. Know what your child’s rights are. Don’t go into any meeting with your child’s teacher, principal or any school board representative without having a clear idea of what you are entitled to ask for on behalf of your child. A few pointers: in Ontario, you cannot be forced to homeschool, you cannot be forced to relocate and you cannot be forced to accept a shortened school day. Your child is entitled to an education in a public school in his or her neighbourhood, with the same number of instructional hours as any other student, regardless of what his or her abilities or disabilities are.

2. Have a clear idea of your desired outcome. This is not always as easy as it sounds. Sometimes we simply want things to be different, or better. You have to ask yourself what that looks like. Perhaps you love the teacher but feel that extra assistance is needed. Maybe you simply want clearer IEP goals or better support during transitions. Or maybe you need a completely new direction for your child. Whatever it is, you have to know what you are aiming for. Ask yourself what the outcome would be if you got to be in charge of all the decisions.

3. But be prepared for compromise. This means knowing what you are prepared to settle for. In my case, first prize was a new program for George in his current school. There was always a chance that that wouldn’t happen, so we were prepared to settle for a good program at a different school. Aim for what you are really, really hoping for, but have some acceptable alternative scenarios kicking around in your mind as well.

4. And know what you will not accept. Sometimes, you may be offered a “solution” that just doesn’t work. You are not compelled to accept anything just because you’re told it’s the only option. What we were not prepared to accept was the program George was originally supposed to go to. We made that crystal clear early on in the discussions, and we did not budge. Negotiation is always key in discussions like this, but you have to be clear on the points that you will absolutely not move on.

5. Don’t go in looking for a fight. If you walk into the room assuming that the people you are meeting with are on the same side as you, the entire tone of the meeting can swing in your favour. The thing is, most of the time they will be on the same side as you. Advocating for your child does not always have to be a battle. Principals and teachers are caught between a rock and a hard place. On the one hand, they genuinely care (or they should) about the best interests of your child. On the other hand, they have to operate within rules and procedures that they cannot control. Show understanding towards them, and more often than not, they will show understanding towards you.

6. But don’t let anyone intimidate you. Look, from time to time you will encounter ass-hats. That’s just life. Smile serenely, know that if someone is being an ass-hat to you, they’re probably an ass-hat to everyone, and identify who your allies are. If there’s no ally in the room, politely tell them you need to reschedule the meeting, and go out and find an ally. You can bring anyone you like. You can even hire an advocacy consultant to accompany you. We were fortunate in that George’s principal was firmly on our side right from the start.

7. Remember that the special education community is small. No matter how frustrating the process is, no matter how badly you want to scream and swear, try your best to take the high road. People in the special education field tend to crop up again and again in different capacities. The person sitting opposite you today, whose head you badly want to rip off, could be in a position to help you three years from now. Don’t let anyone walk all over you, but keep your cool and stay polite.

8. Be persistent. If a meeting doesn’t yield acceptable results, call another one. If you agree on a course of action but something isn’t working, go back and see if something can be adjusted or tweaked. You are never obligated to just accept something for your child that is not working.

This is an original post by Kirsten Doyle. Photo credit: Woodleywonderworks. This picture has a creative commons attribution license.

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5 Diversions That Keep Me Sane

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Several years ago, shortly before George was diagnosed with autism, I realized that I needed a life. I can trace this realization to the exact moment it struck me. George, who was three, was at daycare, and one-year-old James was taking a nap. For all intents and purposes, I was alone. I was wandering from room to room picking up toys and gathering dirty laundry with only the background noise of the TV for company. The TV was tuned to TVO Kids because I had been too lazy to change the channel. An episode of Max & Ruby came on (for the uninitiated, Max & Ruby is an immensely annoying kids’ TV show featuring two child bunnies with unaccountably absent parents), and I actually sat down to watch because it was an episode that I hadn’t seen.

About three seconds later, I was struck by how ridiculous this was. Here I was, a grown woman with a university education, making a conscious choice to watch a TV show aimed at three-year-olds. What had happened to me? Clearly, I needed to take urgent action to prevent my brain from turning to mush. I decided to resurrect old interests that had gone by the wayside, and to start investing more time and effort into my friendships.

Since then, life has become more complicated for a variety of reasons, and so it has become even more important for me to have my me-time. Here are my five favourite things to do when I need to disconnect from the responsibilities of parenting.

1. Go for a run. I’m not sure whether it’s the fresh air or the motion, but there is something magical about the way running restores my mental equilibrium. This weekend, I was feeling an incredible amount of sadness. I went out for a long run, and when I got back I discovered that I had left the sadness out on the road somewhere.

2. Book, wine and bubble bath. This is my favourite way to unwind after a long day. When the kids are asleep, I run a bubble bath, and then I retreat from the world with a glass of wine and one of the Indigo Books new book releases.

3. Time with friends. The trouble with most of my friends is that they live in other countries. I don’t get out socially very much, but I still take whatever opportunities I can to grab lunch or coffee with friends. And for the friends who don’t live in the same city as me, there’s always Facebook. I have some amazing friends who I’ve never actually met in person, and those friendships are just as important to me as my “real-life” friends. While some people might criticize me for “wasting time on Facebook”, what I am actually doing is spending time with friends.

4. Learning new things. I am enrolled in a post-graduate writing certificate program, that I’m hoping will lead to a Masters degree program. Since enrolling in the program and successfully completing the first two classes, I have been reminded of how much I love to learn. Yes, it’s hard work, and I bitch and moan about deadlines and so on, but my complaints are really just hot air. I love being in school, and I love the feeling of accomplishment that I get from it.

5. Nocturnal TV time. I have bouts of insomnia from time to time, and there are few things worse than lying awake in the middle of the night worrying about stuff like whether your child with autism will be OK after you’ve shuffled off your mortal coil. When it feels as if the anxiety will overtake me, I get out of bed and curl up on the couch sipping wine and watching my Friends DVDs. Sometimes, all I need is a bit of solitude combined with feel-good comedy.

What are your go-to methods for escaping reality?

This is an original post by Kirsten Doyle, published in accordance with my disclosure policy. Photo credit: jonathanhoeglund. This picture has a creative commons attribution license.

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The Gift Of Summertime Chaos

The kids enjoying summer fun

The kids enjoying summer fun

Since entering the ranks of the unemployed two weeks ago, my daily routine has changed dramatically. The idea of abandoning routine altogether is tempting but dangerous. I am forcing myself to wake up at the same time, get dressed in respectable clothes, and do productive stuff. I am keeping more or less the same working hours that I did before, only without the long commute. Being unemployed is surprisingly hard work.

That being said, I am enjoying some flexibility that I didn’t have before. I can go running without getting up at an ungodly hour of the morning. I can wear sweats every day. They’re nice sweats that I’m perfectly comfortable being seen in public in, but they’re clothes that wouldn’t be allowed at my previous place of work. I can turn on the TV when I want to take a break.

Above all, I am making the most of getting time to myself, without coworkers, kids and the husband. Don’t get me wrong, I liked my coworkers, and I love my kids and my husband. But I kind of like myself too, and I’m finally getting to spend more time with myself.

That will be changing very soon, of course. The kids only have two and a half weeks before school lets out for the summer, and at that point, my period of blissful solitude is going to come to an end. I will still keep my working hours as best I can, but I anticipate frequent breaks – both voluntary and involuntary.

The kids generally never have a problem with the transition from school to summer. I try to keep the semblance of a routine in place for them. They get up at more or less the same time each day, they are expected to get dressed instead of lounging around in their PJ’s, and things like mealtimes, snacks and bedtimes remain unchanged. We do plan some activities for them over the summer, but for the most part, their time is their own.

The bigger challenge comes when it’s time to go back to school in the fall. At least, it’s a challenge for George. James takes to the new school year just fine. He is excited about seeing friends who have been away for the summer, and he likes the thrill of being in a new grade.

For George, though, it is very difficult. He doesn’t mind school too much, and going from this school year to the next, he will be in the same room with the same teacher and for the most part, the same kids. But the summer break is long, and by the time it’s over, George has to be reacquainted with the whole school routine. It’s hard for a child with autism who likes to have things just so.

One of our most important summer activities is therefore the back-to-school social story: a personalized book that tells the story of George getting onto a bus and going to school. We read the book with George over and over during the last weeks of the summer break, with the hope that the new school routine won’t come as a complete surprise to him.

And what does the summer mean to me, now that I will have to spend time focusing on the next steps in my professional life? It means additional chaos, for sure. It means that I will have to repeatedly stop what I’m doing to wipe up a spill, mediate a dispute or set up a game in the back yard.

It means that I will be here, with my children. It will be the best summer ever, and I cannot wait.

 

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Emerging Into The World Of Books

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

My younger son James was just over a year old when his big brother George was diagnosed with autism. As we adjusted to our new reality and tried to figure out what we were supposed to do for George, we anxiously – almost obsessively – watched James for signs of a delay. We scoured developmental checklists and asked George’s speech therapist how James’ speech should be progressing.

Thanks to our family doctor’s initial refusal to give us a referral, George’s diagnosis came a full year after it should have. Every time I thought about the year of missed interventions, I felt sick. I did not want history to repeat itself: if James had autism or anything else, I wanted to know about it right away.

Fairly early on, it became apparent that we didn’t have anything to worry about, at least from an autism point of view. James’ speech development was slightly ahead of the curve. He hit the “terrible twos” right on target, and his interactive play skills showed up right when they should have.

When James started going to school, it felt kind of strange to just install him in a regular classroom instead of having to go to special ed review meetings and haggle over the wording in IEP’s (Individual Education Plans).

School was not without its challenges for James, though. In Ontario, the age cutoffs run on the calendar year. Children start Junior Kindergarten the year they turn four, whether they celebrate their birthdays in January or December.

James, being a Christmas Day baby, was very young when he started school. He was almost four months shy of his fourth birthday, by far the youngest and smallest kid in his class. He had not developed the coping skills that most of his classmates had, and for the first few weeks he cried almost every day.

The Kindergarten teacher was a kindly man who took James under his wing during that initial period of adjustment. He made sure the other kids weren’t too rough with him, and found imaginative ways to help James not only adapt to school, but to enjoy it. James adored the teacher, and by Halloween of that year, he looked forward to going to school every day.

Along with a number of his classmates, James suffered a setback when the teacher unexpectedly died just before Christmas of that year. He didn’t even really know what death meant, and he seemed to take it a bit personally that the teacher had “left” him.

But James is as resilient as the next kid, and he bounced back. By the time he reached the beginning of Grade 1 he was on track again.

Or was he?

Shortly after James started Grade 1, I noticed that his reading did not seem up to scratch. It’s not like I was expecting the kid to read War and Peace, but he was not mastering even the most basic of words. He was almost six and could do little beyond identifying the letters of the alphabet, whereas George had been reading fluently by the time he was four and probably would be able to read War and Peace.

James’ inability to read was not for lack of trying. The poor child tried gallantly to make sense of the strings of letters. I started wondering if he had dyslexia, like his dad. If this was the case, I wanted to know right away, knowing that early intervention would be the key to success.

I spoke to James’ teacher, who confirmed that he was reading below grade level.

“Let’s see where he’s at by the end of this school year,” she advised.

Immediately, I balked, remembering how George’s autism diagnosis had been delayed because of a doctor who said something very similar. I told the teacher why I was reluctant to procrastinate, and she was quick to reassure me.

“Trust me,” she said gently. “Many first-graders don’t really get reading until close to the end of the school year. And remember, if James had been born just a week later, he’d only be in Kindergarten right now.”

Where every fibre of my being had known that our family doctor was wrong about George, something told me to have faith in James’ teacher. And so I waited.

Within weeks of that conversation, James was starting to make progress – not in giant leaps, but in baby-steps. He was reading simple familiar words. It was highly encouraging, although he still got frustrated when he couldn’t figure out the longer words.

One day about two weeks ago, James’ teacher excitedly pulled my husband to one side when he picked James up from school.

“James flew through his spelling test today and he got them all right! I think something may have clicked!”

James himself was glowing from his accomplishment. All of a sudden, he had the confidence to really try to read. He started spelling words like Wednesday and vegetable. He developed a sudden interest in making words with George’s alphabetic fridge magnets (much to George’s chagrin).

James is still reading slightly below grade level, but it is increasingly likely that he will catch up by the time school lets out for the summer. His teacher was right on the money.

And I get to celebrate the accomplishments of not just one child, but two.

I feel like the luckiest, proudest mom on the planet.

(Photo credit: http://www.flickr.com/photos/bagelmouse/4700001481. This picture has a creative commons attribution license.)

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Child, Paper, Scissors

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 25 – Third person post: Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue.

The little girl struggled with her craft project and prayed for the bell to ring. Unlike her classmates, who were happily making creations out of coloured construction paper and bits of glitter, she didn’t really know what she was supposed to do. She didn’t want to ask Miss H, the teacher, for help. Miss H hated her and would only yell at her.

Sighing inwardly, she picked up her scissors and tried to cut a triangle out of a piece of bright yellow construction paper. But the scissors were too blunt – made that way for the safety of ten-year-olds like herself – and they were hard for people like her to use. Sometimes it was hard being a left-handed person in a right-handed world.

The little girl found herself close to tears as she tried to get the scissors to comply. She had a hard enough time at school. She had “learning disabilities”. She didn’t know exactly what that meant, but she did know that she had to work really, really hard just to keep up with her classmates.

Sensing someone standing behind her, the little girl looked up and saw Miss H regarding her sternly. She started to quiver. She was afraid of Miss H. She almost cried with relief when the bell rang, signalling the end of the school day. But when she started to gather up her things, Miss H pinned her to her seat with a glare and said, “You’re not going anywhere until you cut that piece of paper properly.”

The little girl watched helplessly as her classmates filed out of the room. I can do this, she thought. It’s only scissors. I’ll cut this paper and then I’ll be allowed to leave.

Under Miss H’s hostile gaze, the little girl picked up the scissors with her left hand and prepared to cut.

“The scissors go in your other hand!” barked Miss H.

“But I’m left-handed,” said the little girl timidly.

“Not in my class! Now pick up those scissors – in your right hand – and cut!

The little girl tentatively held the scissors in her right hand. She tried to cut but the paper just bunched up awkwardly. The little girl looked up imploringly.

“My mom is waiting for me,” she whispered.

“She’s just going to have to wait! You’re not going until you get this right! Are you so stupid that you can’t cut a simple piece of paper?”

The little girl tried again, but this time she was shaking so badly that she accidentally ripped the paper. Miss H whipped the paper away and slapped a fresh sheet down on the desk.

“Do it!” she snapped.

As the little girl tried desperately to use the hand she was not designed to use, the pile of discarded paper grew. Fat tears started rolling down her face and plopping onto the paper.

All of a sudden a new voice pierced the terrible atmosphere: the little girl’s mother had come looking for her and was witnessing the events with horror.

“Miss H!What is going on?” asked the girl’s mother, furiously.

Miss H, caught off-guard by a mother protecting her young, said something incoherent about acting in the best interests of the child.

The little girl’s mother lowered her voice menacingly and said, “Now, you listen to me. My daughter has a learning disability that you are well aware of. And you have just destroyed five years of confidence-building work in fifteen minutes. I hope you’re happy!”

With that, the mother swept up her little girl and whisked her away to safety.

She took her home and immediately started the process of building up her broken child.

(Photo credit: Kirsten Doyle)

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Home Is Where The Hat Is

I cannot say for sure when my firstborn son decided that he had to wear a hat at all times. Looking back at old pictures, it seems apparent that he spent most of his toddlerhood in a hatless state. I don’t remember him ever being resistant to wearing a hat, although from the get-go he was picky about the style of hat that he would allow onto his head.

All I know is that at some point – I’m pretty sure it was during one summer or another, the hat became a permanent fixture. It wasn’t even a gradual progression, like his preference for insistence on striped shirts was. It was an overnight thing. One day, he could take his hat or leave it. The next day, it had to go everywhere with him, even into the bathtub. Even to bed. The absence of the hat became an instant source of extreme distress for him. Taking it away from him would make him scream as if the world was ending. One day, when we forcibly removed the hat to throw it into the washing machine, a complete stranger called us from New Zealand and said that the noise had woken him from his slumber, and had we just removed our child’s kidney?

OK, I made that last bit up, but you get the picture. George will defend to the very last his right to have his hat with him no matter what.

On the surface of it, this may not seem like a big problem, but it is amazing how the full-time presence of a hat can encroach on real life. And so we had to work with George’s teachers and therapists to wean him from the hat, or at least get him to the point where he could do without it for brief periods of time.

Several years later, George is still into the hat. Whenever he outgrows a hat, my mother sends a bigger one from South Africa. We do have hats in Canada, of course, but the ones provided by my mom are so cool, so she is in charge of upgrading the hats.

We are able to persuade him to remove the hat at certain times. At bathtime it comes off his head, and remains out of his reach but always in a place where he can see it. When he is at school, he takes it off and hangs it on the hook in his cubby, only putting it on for lunch and recess. And at bedtime, the hat sleeps on the pillow beside him. To our eternal relief, he now consents (with just a little bit of protest) to having his hat taken  away for the purpose of being washed.

Although he takes it off when he absolutely has to, George still loves his hat and he always has to know where it is.

So if you’re ever in my neighbourhood and come across a shy, sweet boy who doesn’t say much and wears a striped shirt and a hat from Africa, chances are that you’re looking at my beautiful son.

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No More Teachers, No More Books!

George doesn’t want to go to school.

Big deal, I hear you say. He is, after all, an eight-year-old kid, and if I got a dollar for every eight-year-old kid who didn’t want to go to school, I’d be signing up to be the next space tourist.

His reluctance to go to school has escalated, though. It started mildly enough about five weeks ago. I was getting him ready for bed one evening when he said, “School is closed.”

“No,” I said. “School is open.”

He went to school without resistance the following day, but this became a nightly ritual. Each evening, the frequency of “School is closed” statements would increase, but as far as I could tell, there was no anxiety associated with it.

Then March break happened and everything changed. Over the course of the week-long break from school, both of the kids were sick. James recovered fairly quickly, but George had a bad cough that lingered, so I got him some natural-remedy cough syrup.

And what has cough syrup got to do with this story? Well, George hates taking cough syrup. In order to give it to him, I have to wrap him up in a blanket and give it to him with a syringe, a tiny bit at a time so he doesn’t spit the whole lot out at me. So when he reached for the cough syrup on Monday morning, indicating that he wanted that rather than school, we knew that this school aversion was serious business.

The following morning it got worse. George woke up very early and for over two hours, he constantly said, “School is closed. No school. School uh-uh.” All the time, his anxiety level was steadily rising. The pinnacle of all of this was George going into the bathroom and trying to force himself to throw up.

Despite all of this, when the school bus arrived, he got onto it without resistance, albeit looking absolutely miserable.

I sent an email to the school describing George’s behaviour and asking if anything was going on at school that I needed to know about. I didn’t think so: this is George’s third year with the same teacher, and she’s been absolutely fantastic for him. But there is, in all likelihood, something behind this and I needed to either rule out or confirm problems at the school.

Because she is so awesome, George’s teacher called me back within an hour of me sending the email. She reassured me that everything was fine, and that she would not have known that George was having a problem if I had not gotten in touch with the school.

Then she said something that was so obvious that I felt stupid for not having thought of it immediately. She said, “Did this start after you returned from your trip?”

Of course! I had been to South Africa for two weeks by myself, leaving husband and kids to hold the fort at home. The last time I had been to South Africa, when my dad died, George was 15 months old and James wasn’t even a gleam in my eye. My absence was a highly unusual state of being for both of the kids, and George, with his autism, must have had a very difficult time processing it.

And within a few days of my return, he started his nightly “School is closed” routine.  The idea that he is working through some separation anxiety makes perfect sense. The break in routine resulting from March break would have exacerbated the problem.

On the one hand, I am relieved to know that everything at school is fine. But on the other hand, I feel guilty about having been away, even though my presence in South Africa was so badly needed at that time.

I can only hope that with a bit more time and many more hugs, George will feel reassured. And if I ever have to go away unexpectedly again, I hope he will know that I am coming back.

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Bullying: Is There A Solution?

In the wake of Monday’s tragic school shooting in Chardon, Ohio, I find myself wondering why we as a society have so much trouble dealing with the problem of bullying. I asked this question on Facebook on Monday night, and more than one person accused me of blaming the victims.

I want to make it clear: I am not blaming the victims, nor am I condoning these acts of violence. I am merely making the point that in spite of the fact that bullying has been blamed for a number of tragedies over the last fifteen years or so, we have made little progress in addressing it.

It would be unfair for me to say that nothing has happened. I would be willing to bet that there were no formal anti-bullying policies in place when I was in high school. That at least has changed: it took me about fifteen seconds on Google to find my local school board’s policy. This does represent a start, even though the wording of the policy is frustratingly vague. It places the onus on schools to figure out ways in which bullying incidents can be reported and dealt with. When I called my son’s school to find out what their school-specific policy is, I got an expected but highly unsatisfactory answer: It depends on the circumstances. I also got the platitudes that schools think are sufficient for parents: We do not tolerate bullying in our school. We take this issue very seriously. Instigators of bullying are dealt with severely.

That’s all great, but what does it actually mean? We don’t need policies that are there primarily to make parents happy enough to sit down and shut up. We need action plans that are followed through on. Here are a few things that I would like to see in place:

  • Education sessions for parents that will teach them to recognize (a) that their child is being bullied, or (b) that their child is bullying.
  • Anti-bullying education in the curriculum for the kids. Right from the get-go, children need to be taught what their rights are and how they can ensure that they are being respected. They should also learn about what behaviours constitute bullying. While this is more intuitive for most older kids, young children may not recognize the potential harm of certain behaviours.
  • Support for the victims of bullying. They should have a way to report their experiences without fear of reprisal, and they should be assured that action will be taken. The onus should not be on them to “stand up to the bullies”.
  • Support for the instigators of bullying. These kids could have something going on in their lives that’s making them do what they do. They shouldn’t just be suspended from school and given a warning not to do it again. Steps should be taken to find out why they are doing it in the first place and what help can be provided to them.
  • Open lines of communication between students, teachers and parents. Teachers and parents should be working together to ensure the safety and wellbeing of our kids, and our kids have to know that there is someone for them to go to when they need help.

Bullying is not a problem that can be solved by letting the kids sort it out. We cannot tell one person to stop doing something, or another person to retaliate. Bullying is a social problem that can only be solved by everyone involved working together in a constructive way, to do what is best for the kids.