Therapy Archives - Running for Autism

Autism Doesn’t End At Five: Aaron’s Story

May 26, 2016 By Kirsten

Today’s “Autism Doesn’t End At Five” series features the story of Aaron, who is four years old. Even if he reaches the top of the IBI waitlist before his fifth birthday, which is unlikely, he will only receive services for a short time before his age deems him ineligible.

Aaron was diagnosed with autism when he was just two years old. His mother had done the research: she knew that an early diagnosis followed by early intervention would improve her son’s chances of a good outcome. She was hopeful that now that Aaron had been diagnosed, she would be able to access services for him.

Instead, she found herself and her son being placed onto one waitlist after another. While Aaron is waiting his turn for IBI services, he is missing the developmental window identified by the Ontario government. Now almost four, he still technically qualifies for IBI, but considering that most children spend two years or more on the waitlist, he is unlikely to get to the top of the list by the time he turns five.

Aaron has been identified as being on the severe end of the autism spectrum. He has many challenges: among other things, he is non-verbal, he has limited eye contact, and he is not able to use the toilet independently. Many children have made tremendous gains in all of these areas thanks to IBI therapy.

In spite of his challenges, Aaron has many strengths for IBI service providers to build on. His mother describes him as a “puzzle wizard and builder extraordinaire”. This indicates the presence of strong problem solving skills and solid learning capabilities. Everything points to Aaron being an ideal candidate for IBI, and that is not going to magically change on his fifth birthday.

A year from now, Aaron will still be highly likely to reap enormous benefits from IBI therapy. But a year from now, the Ontario government will cut off his access to this critical therapy simply because of his age.

Aaron’s parents, who also have five-year-old twin girls, are now talking about private therapy. They refuse to give up on their son, but helping him is going to result in upheaval for the family. They are listing their home for sale in an attempt to pay for IBI therapy themselves. No family should have to go through this kind of stress – especially in a country like Canada, which prides itself on human rights and equal opportunities for all people.

“My heart aches for my son and I need to stay strong to be his voice in any way I can.” – Kelly, Aaron’s mother

By Kirsten Doyle. Photo courtesy of Aaron’s mother, Kelly.

Filed Under: autism, Autism Services, IBI, Therapy Tagged With: autism doesn't end at five, diagnosis, early intervention, IBI services, Ontario government, private therapy, upheaval

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

May 25, 2016 By Kirsten

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.

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: autism doesn't end at five, developmental assessment, financial cost, IBI services, progress, waitlist

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

May 24, 2016 By Kirsten

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.

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: assessment, delays, foundation, IBI services, Ontario government, therapy goals, vocabulary, waitlist

Autism Doesn’t End At Five: George’s Story

May 23, 2016 By Kirsten

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.

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: assessment, autism doesn't end at five, IBI therapy, non-verbal skills, Ontario government, potential, progress, verbal skills

Autism Doesn’t End At Five

May 22, 2016 By Kirsten

It has been a long time since I have posted here. I have been dealing with the stress and chaos of life. This is nothing unusual, and it certainly does not set me apart from other people. Lack of time is a symptom of twenty-first century life. Several weeks ago, though, something strange happened in the Ontario autism community. The provincial government announced that it was cutting off IBI services to children with autism aged five and older, and while other autism parents organized and attended protest rallies and made YouTubes, I was shocked into immobility. I decided to use my platform as a writer to send the message that autism doesn’t end at five, and I collected stories from autism parents. But then I was attacked by a massive case of writer’s block. This news is so big and so devastating, and I was struggling mightily to process it.

For those who are not familiar with IBI, it stands for Intensive Behavioural Intervention. It is one-on-one therapy that is administered for several hours a day, usually over a period of two or more years. It is based on a system of prompts and rewards, and it is tailored for each child that receives it. While there are some exceptions, IBI is highly effective for children with autism. When I say “highly effective”, what I really mean is “potentially life-changing”.

The Ontario government is telling parents that IBI is not effective for children aged five and older. There are many of us who know better. This week, I will be sharing stories of children whose experiences defy what the government is claiming. I will also share stories from parents who have suffered the devastation of having their children removed from the IBI waitlist.

The first story, featuring my son George, will be posted tomorrow. If you have already shared your story with me, it will be posted this week. If you have a story that you would like to have told, send an email to kirsten(at)runningforautism(dot)com. I promise to publish every story that I receive. No voice should be left unheard.

The Ontario government needs to get the loud and clear message that autism doesn’t end at five.

By Kirsten Doyle. Photo credit: QUOI Media Group. This picture has a creative commons attribution license.

Filed Under: autism, IBI, Therapy Tagged With: autism doesn't end at five, IBI services, Ontario government

Mental Illness: Don’t Be Ashamed

May 3, 2012 By Kirsten

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

Today’s post is written in observance of Mental Health Awareness Month, which runs through May.

Several years ago, as I sat nursing my newborn baby, I watched a talk show in which Tom Cruise said something to the effect of post-partum depression not being a real condition. All these moms needed, he said, was to follow good exercise and nutrition plans, and they wouldn’t have a problem. He was convinced, he said, because he had done research.

The timing of this talk show, with its rantings by someone who by definition will never know what post-partum depression is like, could not have been worse. I was in the thick of post-partum depression myself at the time, and although my particular brand of it never included a desire to hurt my child, fantasies of my own death were a very real part of my life.

I did not seek help for my condition, and in fact I would never have been treated for it had my family doctor not noticed that something was amiss during a visit for something completely unrelated. I had a whole set of issues with that particular doctor, but I fully credit him for saving my life. That’s how close I was to the edge of the cliff.

The fact that I suffered from post-partum depression at all was no surprise to me. If anything, I had been surprised when it hadn’t struck after the birth of my first son.

Even as a teenager, I was prone to bouts of depression. My parents were not really aware of it, and on the few occasions when someone actually noticed that I was not OK, it was always put down to adolescent hormones.

“You’ll grow out of it,” people told me.

Except I didn’t. My depression continued into adulthood, coming in waves that sometimes threatened to drown me completely. It would hit completely without warning, hang around for weeks or months or even years, and then disappear just as suddenly.

During my teens I blamed hormones. For two decades after that, I blamed myself. I blamed the fact that some unwise choices I made during my college years led to trauma that had a lasting effect.

I didn’t seek help. Of course I didn’t. My depression and everything that went with it was my own fault, right? I didn’t deserve to be helped.

When it came down to it, the mental health issues that I have experienced throughout most of my life – be it post-partum depression, good old garden-variety depression, anxiety, and everything else – have been a source of shame to me.

And that, my friends, is a big problem in our society. Too many lives are destroyed and lost because people suffering from mental illnesses feel too ashamed or embarrassed to seek help. Feelings of unworthiness and self-blame act as barriers to the pursuit of inner peace and happiness.

Tom Cruise sitting on his high horse effectively blaming mothers for a debilitating and often life-threatening condition did not help the cause of the mental health community one little bit.

Eventually, just over a year ago, I finally made the very difficult decision to seek professional help. The road since then has not been smooth. With the guidance of my therapist, I am reliving past traumas and undergoing oft-uncomfortable introspection in search of the roots of the conditions that plague me. But I at least know that I am heading somewhere other than a dead end.

My quest for mental health is by far the hardest thing for me to write about. Because in spite of the steps that I have taken to get help, I have not quite managed to shake the decades-old conviction that this is something for me to be ashamed and embarrassed about.

If I stay silent, though, I remain a part of the problem of the stigma associated with mental illness.

In starting to speak out, however tentatively, I hope to become a part of the solution.

(Photo credit: http://www.flickr.com/photos/militaryhealth/3485865665/. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, Depression, Mental Barriers, Mental Health, Mental Illness, Post-Partum Depression, Therapy Tagged With: ashamed, depression, mental health, mental illness, post-partum depression, seeking help, stigma, therapy

Autism: Seeing The World From A Different Angle

April 26, 2012 By Kirsten

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 26 – Health tagline: Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!

Seeing The World From A Different Angle

A couple of years ago, George had a block of Occupational Therapy appointments. He needed help with some sensory issues he was having, and he had virtually no fine motor skills. My husband and I were always present at the sessions, mostly to observe and learn techniques we could use at home. We didn’t actually do anything during the sessions. We just let George and the therapist do their thing.

One of the tools in the therapist’s toolbox was a board full of evenly spaced holes that went with a bag full of coloured pegs. George would be asked to fill the pegboard with pegs. He could choose whatever colours he wanted: the point of the exercise was to strengthen his hands. It was not a task George enjoyed, because he struggled with it so much. He didn’t bother to select colours – he would just take pegs out of the bag at random and try mightily to get them into the board.

One day, he deviated from this way of doing things. He emptied the bag and separated the pegs into piles according to what colour they were. And then, for the first time, we saw him systematically select his pegs and make a pattern on the board. My husband was seated beside George, and I was on the opposite side of the table. The therapist was behind George, helping him correct his grip on the pegs when needed.

As George filled the board, the pattern became clear. It was oddly soothing to watch him make his little design, knowing with each turn which peg he would use next. I felt comforted by the predictability my son had created.

All of a sudden my sense of calm was jarred when George picked up a yellow peg and put it where I’d been expecting a blue peg. This wasn’t right! What about the pattern? I looked at my husband, who seemed surprised at this unexpected turn of events. However, he didn’t look quite as horrified as I felt. I’m not sure why I had placed so much stock in this pattern, since that wasn’t an objective of the exercise, but I really felt disturbed.

A few pegs later, the pattern was history, and George appeared to be placing the pegs randomly. My husband got up to stretch his legs, and he walked around to the side of the table. He stopped dead and as he stared at the board, a look of astonishment spread across his face. Not wanting to disrupt George, he whispered in my ear.

“You have to look at this from over there.”

I stood up and went to where he had been standing, and immediately, I saw what had amazed my husband so much.

Changing my perspective of the board by a mere ninety degrees made me see that George had not abandoned his pattern at all. He had simply been shooting for a pattern completely different to the one I had expected. What he was creating was complex and utterly unique. It was one of those things that needed creative thinking and planning. At that moment George reminded me of those chess players who can plan the next twenty moves and know that they are going to skewer their opponent at the end of it.

The pattern was quite, quite beautiful. And it was something that needed George’s own unique brand of thought.

Individuals with autism do not look at the world the same way we do. And that is a good thing.

Because if it weren’t for autistic thought, I would not have gotten to see that beautiful pattern that day.

The tagline I chose is not one that I created myself. I borrowed it from the T-shirt I wore when I ran last year’s autism run. The T-shirt was designed by my friend, whose name is also George, from the Geneva Centre for Autism. I could not think of any tagline that so perfectly encapsulates that day at the O.T.’s office.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Health Activist Writers Month Challenge, O.T., Patterns, Therapy, Thinking Differently, WEGO Health Tagged With: autism, motor skills, O.T., patterns, peg-board, therapy, thinking out of the box

The T-Word: A Scary Word For Autism Parents

April 13, 2011 By Kirsten

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: anxiety, autism, communication, George, IBI, planning, postaday2011, progress, school, School Stream, skills, social interaction, speech, therapy, transition