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Autism Doesn’t End At Five – Jolie-Anne’s Story

May 25, 2016 By

Our “Autism Doesn’t End At Five” series continues today, with the story of Jolie-Anne. In spite of steady success with IBI, Jolie-Anne is no longer eligible to receive services, simply because of an arbitrary age cut-off imposed by the Ontario government. If you have a story that you would like told, send an email to kirsten(at)runningforautism(dot)com.

autism doesn't end at five - jolie-anne

When Jolie-Anne was just twenty months old, her mother suspected that she might have autism. After spending eighteen months on a waitlist for a developmental assessment, she was formally diagnosed when she was a little over three years old.

For the next three years, Jolie-Anne was on the waitlist for provincially funded IBI services. During this time, her mother dug deep into her bank account to pay for whatever early intervention she could afford – speech therapy, occupational therapy and ABA social groups.

Jolie-Anne’s fifth birthday came and went, and she was still on the IBI waitlist. Her parents were no longer prepared to wait – they decided that until the government came through, they would find a way to foot the massive bill for IBI themselves. They felt that they had little choice: in the months leading up to this decision, Jolie-Anne had made virtually no progress in spite of being in a special needs classroom with a full-time EA.

Almost immediately, Jolie-Anne’s family and IBI providers started to see a difference. For the first time, she had a voice. She started using words, making eye contact and forming friendships. She learned how to state her name, age and address. She acknowledged her grandfather for the first time and gave him a hug.

The progress came at a tremendous financial cost to the family. Jolie-Anne’s parents were overjoyed and relieved when they were finally granted government funding for IBI services in September last year. Jolie-Anne continued to acquire new skills and meet the therapy goals that were laid out for her.

Sadly, thanks to the Ontario government’s new policy to deny IBI services to children aged five and above, Jolie-Anne will not be able to continue with IBI therapy unless her family is able to stretch themselves financially, even more than they already have.

Jolie-Anne’s mom is thinking not only of her own daughter, but of other children who are impacted by this new policy.

“I think of all the kids, who like my daughter could start IBI at age five or later and benefit from the same life-changing results, but they will not have that opportunity. I am heartbroken.” – Tia, Jolie-Anne’s mom

It is more than a little disturbing that any government can decide that children are no longer deserving of life-changing therapy simply because they have reached a certain age. It is cruel to give the families of children with autism hope only to snatch it away. It is short-sighted to deny a child services that would enable him or her to ultimately get a job and contribute to the economy.

By Kirsten Doyle. Photo courtesy of Tia, Jolie-Anne’s mom.

Filed Under: autism, Autism Services, IBI, Therapy Tagged With: , , , , ,
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Autism Doesn’t End At Five: George’s Story

May 23, 2016 By

This is the first in a series of stories in response to the Ontario government’s announcement that IBI services are no longer available to children aged five and older. This disgraceful, discriminatory policy ignores the fact that autism doesn’t end at five. If you have a story that you would like told, send an email to kirsten(at)runningforautism(dot)com.

George: autism doesn't end at five

My son George was diagnosed with autism when he was almost four, a full year later than he should have been (the doctor’s initial refusal to refer him for an assessment is another story for another day). By the time he had gone through the government assessment and been deemed eligible for services (yet another story for yet another day), and served his time on the waitlist, he was a couple of months past his fifth birthday.

You know, that magical cut-off beyond which, according to the Ontario government, kids can no longer benefit from IBI therapy.

When George entered IBI at five years and three months, he functioned at an eleven-month level on verbal abilities, and at sixteen months on non-verbal abilities. His overall level of functioning was fourteen months.

He had a follow-up assessment at the age of six years and five months, a little over a year after starting IBI. The results were staggering. On verbal abilities, he was now functioning at 35 months, and on non-verbal abilities he was functioning at 51 months. Overall, he was at a level of 39 months.

Can we do the math here? My son gained almost two years in verbal skills and almost three years in non-verbal skills. Overall, he made gains of 25 months in a fourteen-month period.

These gains translated into an explosion of progress that was visible to everyone. George started to learn simple skills like getting dressed and using the washroom without assistance. He spelled out full, grammatically correct sentences using alphabetic fridge magnets, and for the first time, he was making his requests verbally. When he was six, he made his first deliberate joke, and we started to see his funny, quirky sense of humour.

There are no words to describe how grateful I am that George was born at the time he was, that he turned five in 2008 and not 2015 or 2016. Because in the new reality created by the Ontario government, he would have missed out on that rocket-like trajectory of progress. He would not be where he is today – a happy twelve-year-old who, while still clearly autistic, shows incredible amounts of potential.

I feel a sense of survivor’s remorse. I feel devastated for all of the parents who will not get the experiences with their kids that I had with George. My heart breaks when I think of the potential that is being flushed away, the kids who are being left behind, the parents whose hopes have been shattered.

IBI can and does benefit children of all ages. Nobody should be left behind because of an arbitrary age cut-off, because autism doesn’t end at five.

By Kirsten Doyle. Photo credit to the author.

 

 

Filed Under: autism, IBI, Therapy Tagged With: , , , , , , ,
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Autism Diaries: On This Day…

February 2, 2016 By
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.

Filed Under: Assessment, autism, Autism Diagnosis, Education, School, Special Education Tagged With: , , , , , , , , , , , , , , ,
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Autism, Advocacy And Hope

April 12, 2015 By

George writing wordsMy son George started Kindergarten just four short months after being diagnosed with autism. It was a bit of a terrifying time for me: I felt as if I had been thrown into this mysterious world full of mazes and obstacles with no map, no compass, and no fixed destination. I didn’t know where I was supposed to be going or how I was going to get there. I had no idea how to navigate the terrain of special education.

Over the seven years between then and now, we have had to do our bits of advocacy, but for the most part, George’s time at school has been very positive. He has had a series of compassionate, competent teachers and every year, we have seen progress. We have kind of breezed through the K-to-6 years feeling good about George’s education.

In recent months, this sense of security almost came to a screeching halt. George, currently in Grade 6, is in a K-8 school that we love. The teachers are fabulous, the principal encourages open dialogue with parents, and the kids in special needs classes are treated with kindness and respect by their typically developing peers.

The only problem with the school is that it does not have a special education program for Grade 7 and 8, so we were facing the prospect of sending George to a program in a neighbouring school. When we went to visit the program last year, when George was finishing off Grade 5, we were not happy with what we saw. We just knew, with that instinct that parents have, that if George went into that program, we would start to see a regression within days.

And so we started the process of advocating for a better Grade 7/8 placement, not only for George, but for all of his classmates. Starting with the principal at his school, we escalated the issue, insisting on meetings with trustees, superintendents, and anyone else who might have any kind of influence in deciding my son’s future.

About seven months after our first meeting with the principal, we got word of the school board’s decision: George will not be going to the overcrowded, under-resourced program that we saw and hated. Instead, a special education Grade 7/8 program is being introduced in his current school. George and his classmates will stay in the environment that they know and love. They will continue to be a part of a student community that is caring and supportive, with a principal who has been firmly on our side all the way.

Advocacy can be difficult and frustrating. It can be time-consuming and, at times, heart-breaking. But when it results in a better future for many children who need other people to fight for them, it can be the most rewarding thing in the world.

Come back tomorrow for some tips on advocating for your children.

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

Filed Under: Advocating for Another, autism, Education, School, Special Needs Tagged With: , , , , , , ,
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The Flea In The Bottle

June 17, 2014 By
George and his dad, enjoying the concert

George and his dad, enjoying the concert

A long time ago, I heard a story about a flea that was put into a bottle. Since fleas are capable of jumping something like 30 times their own body length, the lid had to be put onto the bottle in order to contain the flea. Whenever the flea jumped, it dinged itself on the bottom of the lid, and eventually it figured out how to jump to a level just below the lid. After a period of time, the lid was removed, and the flea was free to go. But by now, it could no longer jump high enough to escape from the bottle. The physical capability was there, but the flea had the expectation that if jumped any higher, it would get hurt.

The story is a metaphor, of course. It’s supposed to illustrate the idea that we perform not according to our abilities, but according to the expectations we have, that are put there by ourselves or by someone else.

When George was diagnosed with autism seven years ago, I promised myself that I would never put a lid on my expectations of him. I would ensure that he had whatever opportunities he needed to learn and grow, and to discover what he might be capable of.

This strategy has not always been easy to follow, but it appears to have been reasonably successful. Over the years, periods of rapid progress have alternated with disheartening plateaus. Lately we have been experiencing the latter, and my husband and I have been having some depressing conversations about George’s limitations.

In the midst of all of this, my other son James has been preparing for his school’s spring concert, which happened this evening. In the past, we have left George at home with his grandma on occasions like this. Sometimes crowds and excitement overwhelm him, and we don’t want to stress him out or wreck things for James. Tonight, however, Grandma was unable to watch George, so we had to bring him with us.

While we were standing outside the school waiting for the doors to open, George was already getting antsy. My husband and I spoke about which one of us would leave with him, and which one would stay behind to watch James. In the end, we decided to see how long George would last for, so we went in and took a seat.

The concert started with the 8th Grade band. As soon as the music started, a huge smile appeared on George’s face, and he started swaying in time to the beat. He briefly clapped his hands over his ears when the drumming started, but for the most part he stayed calm. He even started singing along when the band played We Will Rock You.

The folk-dancing act that James was participating in was quite late in the program, and throughout the whole concert, George was sitting calmly, listening to the music and clearly enjoying himself. From time to time he would bop up and down in time to the music.

When James and the rest of the folk dancers came out, I scooted to the other side of the auditorium to get a clear shot with my phone’s video camera. While the dancing was going on, I turned my head to see how George was doing. To my astonishment, he was standing beside his seat, trying to imitate the moves of the dancers. As his hat-bedecked head bopped and jived in time to the music, my husband caught my eye and gave me a thumbs-up. For a few moments, I swung the camera around to capture some of his dancing.

We left soon after James was done with his performance. George was brimming with happiness, but we could tell that he was ready to leave. We took the boys to McDonalds to reward both of them for a job well done.

Now, as they settle into bed for the night, I cannot help reflecting on the fact that if my mother-in-law hadn’t had a prior appointment, George would have stayed home and we would have missed the opportunity to see him having such a wonderful time. This has renewed my resolve to keep testing his limits and pushing him beyond his boundaries. I don’t want to put a lid on my expectations of him, or his expectations of himself. I don’t want him to be that flea that is conditioned into lowering its potential.

I want George to dream big, and to fly as high and as far as he dares to go.

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

Filed Under: autism, Children, Expectations, parenting, Potential Tagged With: , , , , , , , , , , , ,
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Santa and Autism: A Special Brand of Magic

November 23, 2012 By

This morning I was faced with a minor dilemma, brought on by the fact that it was Pajamas and Stuffed Toy day at my son’s school. If it had been my younger son – the one who doesn’t have autism – it wouldn’t have been a problem. But since this is my older son we’re talking about, I had to make a choice. Do I encourage him to take part even though the idea of wearing pajamas instead of clothes to school could make him feel seriously disoriented and possibly distressed? Or do I let him just wear clothes even though that would mean yet another thing that sets him apart from the typical kids in his school?

See? Dilemma.

As an autism parent, I constantly have to make tradeoffs of this nature on behalf of my child. On the one hand, I want him to have as many “typical kid” experiences as possible, but on the other hand, I don’t want to cause him to be upset.

It always come down to the idea of choosing my battles, and by now I know that I should only pick the battles that really matter. And let’s face it – wearing pajamas to school does not exactly count as an essential life skill, especially when he’s part of a class of special ed kids who probably wouldn’t be into the whole pajama thing either.

And so I decided to let him exercise his preference in the only way he knows how. I would dress him in a clean pair of pajamas and then see what happened. And what happened was that he promptly crawled back into bed. It was only when he realized that he was actually going to school that he started to resist the pajamas idea. Within seconds the pajamas were coming off and George was rummaging around for clothes to wear.

Surprisingly, though, he did want to take a stuffed toy. I say “surprisingly” because George has never really been into stuffed toys. This is a kid who sleeps with about a dozen Mr. Potato Heads and a pineapple. But not only did he want a stuffed toy today, he wanted two. In an intriguing fusion of holidays, he selected an Easter bunny and a stuffed Santa.

I was sure he’d lose interest in the whole thing by the time the school bus showed up, but he went off to school with Santa and the bunny, and by all accounts he had a great day.

Friday is always Show & Tell day in George’s classroom, and from time to time we send him in with something and his teacher gets him to “participate”. In a dramatic break with tradition today, he independently – independently! –  joined the Show & Tell circle and proudly showed off his Santa.

This moment of progress proves to me that although Santa is not real, he is capable of producing magic.

(Photo credit: Kirsten Doyle)

 

Filed Under: autism, Choices, Easter Bunny, National Health Blog Post Month, Pajamas, parenting, Santa Claus, School, WEGO Health Tagged With: , , , , , ,
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Body for Life: Week 1

November 11, 2012 By

A week ago today, I started the Body for Life challenge. I completely revamped the way I eat, ditching the carb-heavy lunches from the cafeteria-style shop downstairs from my office in favour of meals brought from home, consisting primarily of lean proteins and salad. In the evenings, I started making more of an effort in the kitchen, selecting dinners based on nutritional value rather than convenience.

At the same time, I have started getting myself into something resembling an exercise routine, following my post-half-marathon hiatus.

So, how has this all gone? Has my week been a success?

Well, in terms of hard numbers, I haven’t seen as much of a change as I would have liked, but the change I have seen has been in the right direction. I have dropped two pounds, and I have lost an inch from my waist measurement. I am off to a start, so yay!

I have had a surprisingly easy time where discipline is concerned, and I believe this is the result of planning. Last Sunday night, I meticulously planned out and wrote down what the week’s meals would consist of. Once I have a written schedule, I tend to follow it quite rigourously. I have not been tempted by all of the Halloween candy in the house, nor by any of the processed junk food in grocery stores.

In fact, I have been having something approaching fun in the kitchen, as I have tried out new recipes. To my astonishment, none of my cooking experiments ended in disaster, although there are some that I clearly need to practice.

The thing that killed me was time, and this makes me realize that the obesity epidemic can, at least in part, be blamed on the fact that many people just do not have enough time to accomplish everything. I don’t care what you tell me, eating healthily is a lot more time-consuming than the alternative. When I’ve just worked a nine-hour day and spent an hour and a half commuting home, it is so tempting to just throw some processed crap into the microwave instead of taking the time to prepare something that’s actually good for you. It is so easy to blame people for the poor eating choices they make, but honestly, in this day and age it is not easy to maintain a healthy lifestyle.

Lesson learned: do more prep on Sundays to save a bit of time during the week. Even if I do that, it may take a while for me to adjust and do things as efficiently as I need to.

With Week 1 done, I am looking ahead to Week 2. The menu is planned, and I have some specific goals with regard to runs and workouts.

Check this space for another report-back next Sunday.

(Photo credit: Andy Roberts. This picture has a creative commons attribution license.)

 

Filed Under: Body for Life, Exercise, National Health Blog Post Month, Nutrition, WEGO Health Tagged With: , , , , , ,
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23 Months In One Year

April 20, 2012 By

April 20 – Miracle cure: Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer.

Try as I might, I was not able to get this prompt to work for me. Therefore, I decided to use one of the bonus prompts that were provided at the beginning of this challenge.

Best doctor’s visit or hospital stay: What made it the best? The news you got? The nurse/doctor/surgeon you saw? The results?

On a cool Spring day in 2010, my husband and I drove George, then six and a half, to an appointment with a psychiatrist. The purpose of the visit was to get the results of the assessment that had been done six weeks previously.

The anxiety we felt went beyond normal parental angst. We were both remembering the assessment that had been done a year previously. It had not gone well. George had been agitated and distracted. He hadn’t settled, refusing even to take his coat off. Throughout the assessment he had underperformed on just about every task. In the next room, I had answered questionnaires, checking the “never” or “rarely” box to almost every question about George’s capabilities.

It had been a dismal experience, and the results had shown severe deficits. Now we were back, one year later, to see what quantifiable effects his first year of IBI therapy had had. He had shown almost no anxiety during the assessment this time, and the specialists had emerged smiling from the room, but we knew that we just had to wait and see the numbers.

When she greeted us, the psychiatrist was as charming and soothing as always. She ushered us into her office and gave George some markers so he could follow his favourite pursuit of scribbling on her white board. He surprised us all by writing lists of words instead.

The psychiatrist could tell that we were nervous, and she was kind enough to dispense with that beat-around-the-bush suspense thing that so many doctors seem to take an inordinate amount of pleasure in. She cut right to the chase.

“George has made phenomenal progress,” she told us.

She showed us reports and charts showing gains in almost every area: cognitive, language, fine motor, gross motor, emotional regulation, behavioural, daily living skills… What this child had achieved in the last year was off the charts.

It was literally off the charts. The psychiatrist showed us a graph showing percentiles of progress after one year of IBI therapy, and sure enough, George’s accomplishments went way beyond the right margin of the page.

In his first year of IBI – in a single twelve-month period – George  had made no less than 23 months worth of gains.

That was phenomenal. Far from following the usual model in which autistics develop relatively slower than typically developing children, thereby falling relatively further behind, George had developed at almost double the usual rate. He was still behind other kids of his age, but he was far less behind than he had been, and in some mathematical areas, he had actually started outperforming typical kids.

It’s like starting far back in the pack at a race and being way, way, way behind the leaders. And then, while the leaders maintain the same pace they started with, you put on a hell of a sprint. You probably won’t cross the finish line first, but instead of being twenty minutes behind the guy who wins, you’re only ten minutes behind.

Before getting these results, we had seen changes in George. Progress like that cannot go unnoticed. But it was wonderful to see it in numbers, to see visual proof of what our boy had achieved.

That day, my husband and I truly started to see possibilities for the future, and we made a promise there and then to help our son reach the stars.

(Photo credit: Kirsten Doyle)

Filed Under: Assessment, autism, Autism Services, Health Activist Writers Month Challenge, IBI, Not Giving Up, Progress, Psychiatrist, WEGO Health 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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