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Autism Doesn’t End At Five – Xander’s Story

May 24, 2016 By

Today we continue our series of stories about children with autism in Ontario. The Ontario government’s recent announcement that IBI services are no longer available to children aged five and older has had devastating consequences for many families, including the family of six-year-old Xander. If you have a story to tell, send an email to kirsten(at)runningforautism(dot)com.

autism doesn't end at five - xander

When Xander started provincially funded IBI services in December 2015, his family breathed a sigh of relief. He was two months shy of his sixth birthday, and he had been on the waitlist for three years. His initial baseline assessment showed delays in several areas: he was not consistently responding to his name, his vocabulary was extremely limited, and he struggled with tasks like tracing letters and using scissors. Back then, he could not even tolerate sitting at a desk for any length of time.

Xander’s IBI team identified fourteen therapy goals for him to work towards. That is a lot for any child to accomplish. But Xander quickly became a poster child for the effectiveness of IBI therapy.

Within three months, he had accomplished – and in some cases surpassed – every one of those fourteen therapy goals. He was responding to his name and he could recite his home phone number. His vocabulary was growing steadily and he was learning to make requests verbally. He developed the ability to follow simple instructions, and he could now sit at a desk working for up to ten minutes.

In other words, IBI had given Xander the building blocks, a solid foundation upon which to build. In the next phase of IBI, he was going to build on that foundation and learn how to use his newfound skills in a functional, meaningful way.

That, at least, was the plan. Then the Ontario government came along with its announcement that IBI will no longer be provided to children aged five and older. Children of that age who are already receiving IBI services are going to be phased out of the program.

This news has been a devastating blow to Xander’s parents. In just a few short months, they saw their son start to blossom. Now they are faced with the prospect of him losing access to a method of intervention that has unlocked all kinds of potential in him. The future, that was looking so full of promise, is once again uncertain.

The Ontario government is trying to sugar-coat this by saying it is in the best interest of the kids. They are offering affected families one-time payments that do not come close to making a dent in the expense of IBI therapy. The alternative services they are offering to older children is not nearly as effective as IBI.

Xander’s story is one of a myriad tragedies affecting Ontario families in the wake of this announcement. He is living proof that IBI can and does work for older children, and unless some kind of miracle happens, he could become living proof of what happens when you remove such a crucial service from a child with autism.

By Kirsten Doyle. Photo courtesy of Xander’s mom, Shannon.

 

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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Five Early Signs of Autism: My Family’s Experience

November 8, 2012 By

My boy at the Autism Centre family day

When I tell people that my son has autism, the first question many of them ask is, “How did you know there was something wrong? What made you get him assessed?” Many people asking this question are having concerns about their own children, weighing up the idea of taking them to a pediatrician.

It would be so easy to point worried parents to websites listing early childhood development checklists and signs of autism, but that would only help a small number of people. The trouble with autism is that it is so individualised. It manifests in so many different ways. You get the kids who can’t string two words together but can rebuild a computer in two minutes flat. And you get the kids who are fully verbal but never learn to look both ways before crossing the street.

Here, I share my experiences with my son. Some parents will read these and nod along knowingly, identifying with every point. Others will wear a perplexed expression and say, “My child doesn’t do that.”

So, how did I know something was wrong?

1. Lack of speech or any other meaningful communication. By the time he was two, George was not talking. He had about thirty words in his vocabulary, but he was using fewer than ten of them in the right context. They were used as single words only, always for the purposes of requesting. Juice. Milk. Chee’s (Cheerios). He also did not have any kind of repertoire of meaningful gestures. He couldn’t point, and if he wanted something he did not know the word for, he would take my hand and move it in direction of the object he wanted.

2. No desire to play with other kids. When other kids his age were starting to play collaboratively with each other, George was still in parallel play mode. He did not object to the presence of other kids as long as he had the space to sit on his own and do his own thing. He did not see other people as potential playmates, but as functional beings: if he needed help to manipulate an object or separate stubborn Lego blocks, he would seek out an adult and shove the object into their hands. That was the extent of his interaction.

3. Not using toys for their intended purpose. Unlike some parents who say that their kids “became” autistic at a certain age, or after a certain event, I had a feeling fairly early on that there was something not quite right with George. One day, when he was at the age when babies are just learning to sit unsupported, I put him in the middle of the floor and propped him up with a nursing pillow. I surrounded him with all kinds of toys, just to see if he would respond to anything. There were stuffed animals, Lego’s of various sizes, fabric books, and a variety of planes, trains and automobiles. There was all kinds of stuff. He didn’t care for any of it. His attention wasn’t caught by the brightly coloured balls, and he didn’t make any attempt to grab at or swat any of the dangly things I tried to entice him with. He pushed a big red button on a train, and then grabbed a piece of string that was caught on my shirt and spent the next half-hour staring at it from different angles.

4. Prone to sensory overload. As a toddler, George hated going to the store. He would tolerate the grocery store for short amounts of time, but by the time I was at the checkout, he was usually having a meltdown of epic proportions. In those days before the autism diagnosis entered my orbit, I couldn’t understand what he was making such a fuss about. The only way for me to stop those meltdowns was by taking him out of the store. Looking back, I now realize that he was simply overwhelmed by everything that goes on in a store: fluorescent lights, lots of people, lots of displays, lots of sounds. Wal-Mart in particular set him off. Something about the checkout area sent him into a state of absolute panic.

5. Instinct. Ahhhh, there’s nothing quite like a mother’s gut feel. I have no idea if there is any science behind it, but mothers have this uncanny ability to just know there is something wrong with their child even though all looks fine and dandy to the outside world. This is why I always tell mothers that if they have a feeling something might be amiss with their child’s developmental progress, they should park themselves in their doctor’s office and insist on a referral for an assessment. There are doctors who will tell you to wait, that the range of development is broad, that boys reach milestones later than girls. Don’t listen to that guff. Don’t take no for answer. If you have to tell your doctor that you will sit in his office gathering dust until he gives you a referral, so be it. Listen to your instinct and don’t let anyone talk you into acting against it. I made that mistake and to this day, I bitterly regret the year of early intervention that my son missed as a result.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Autism Diagnosis, Developmental Delay, Early signs 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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A whole new world of hope

April 19, 2010 By

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

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

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

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

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

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

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

Filed Under: autism, Medical, parenting Tagged With: , , , , , , , ,