Running Giant Steps For Autism

A Kindergarten class at Giant Steps school for children with autism

A Kindergarten class at Giant Steps school for children with autism

My son was diagnosed with autism when he was almost four years old. He had fewer than five functional words, and his favourite pastime was lying on the floor examining a piece of string. The diagnosing doctor did not give us a great prognosis: our boy, he said, had limited capacity for learning, and he was likely to fall further and further behind with each passing year.

Not to be deterred, we persevered with the speech therapy sessions that he was already enrolled in, and we put him on the waiting list for occupational therapy. These services, combined with intensive behavioural intervention (IBI) turned out to be life-changing interventions. Within weeks, we started to see an explosion of skills. My son did not have a limited capacity for learning. He simply needed to be taught in a non-conventional way, by people who understood the challenges faced by kids with autism.

Now thirteen, my son has blasted most of that doctor’s predictions out of the water. He has his challenges, and he may never be able to live completely independently, but the skills he learned all those years ago created enormous amounts of potential for him.

It is imperative that children with autism be given opportunities to learn as early on as possible, no matter how bleak their diagnosis looks. Without the services that my son received, he would not be the same child he is today. The world would not get to see how bright and funny and amazing he is.

Autism families find hope in all sorts of places. One such place is Giant Steps, a school and therapy centre that is dedicated to helping kids with autism develop skills that will last them a lifetime. Through an intensive program that includes various forms of therapy, the staff at Giant Steps facilitate the unlocking of potential that might otherwise be hidden away forever. In so doing, they are not only helping the kids, they are helping the entire community.

This weekend, I will running the Scotiabank Toronto Waterfront Half-Marathon in support of Giant Steps. All of the funds raised will go towards the following hands-on therapies that are so crucial for these kids:

Speech & language therapy: Children with autism are all over the place with regard to their communication abilities. Some can hold conversations but experience verbal “tics”. Others are completely non-verbal. The speech therapists at Giant Steps work with kids of all communication abilities, and they make use of tools like augmentative communication devices and PECS (picture exchange communication system).

Occupational therapy: Giant Steps has therapists who can help children who struggle with fine or gross motor skills, sensory challenges and proprioceptive difficulties. This in turn helps them develop independent living skills, like dressing themselves, being able to write and coping with sensory overload.

Behavioural therapy: Kids with autism often experience intense anxiety and sensory difficulty that comes from their neurological differences. For many, frustration at not being able to communicate is combined with an inability to regulate emotions. The result can be meltdowns that are traumatic for the child and his or her caregiver. Using ABA (applied behaviour analysis) techniques, therapists are able to teach children how to cope with their challenges.

Giant Steps does not receive funding from the government or from the school board for the therapy they provide. The provision of services is dependent on donations and fundraising endeavours. I am asking friends, family and supporters to sponsor my autism run, so that Giant Steps can continue the work they do.

If you would like to sponsor me, please visit my fundraising page. The difference you make will last a lifetime.

This is an original post to Running For Autism by Kirsten Doyle. Photo credit for all pictures: Giant Steps Toronto.

Book Review: Beyond Rain Man by Anne K. Ross

beyond rain man

When my son was first diagnosed with autism nine years ago, I went to my local bookstore in search of help. I was looking for books that would tell me how to deal with the sensory eating issues, the grocery store meltdowns, the head banging incidents that left dozens of holes in our drywall. I wanted to know how to get my son to talk, to make friends, to play with toys instead of spending hours staring at a piece of string.

What I didn’t realize at the time was that I didn’t need an instructional manual. I needed to know that I was not alone, that there were people out there who knew what I was going through as the parent of a child with autism, and above all, that my family and I would survive. We would figure out all of those things that I was so desperately looking for, and we would, in time, adjust to our new version of reality.

While I was enduring this phase of post-diagnostic angst, psychologist Anne K. Ross was going through experiences that she would later capture in the pages of a wonderful book. Beyond Rain Man tells the story of a woman who, having devoted her life to helping children with developmental disabilities, was thrown for a loop when her son was diagnosed with Aspergers Syndrome.

With compelling bravery, the author tells the story of her son’s childhood. She describes his struggles, the tears and the triumphs, and the ups and downs of the relationships within her family. As an autism parent, I can relate to so many of the stories Anne tells in her book: the impact of her son’s Aspergers on his younger brother, the challenges of keeping a marriage healthy when there’s so much going on, and the endless concerns about the future.

I do not feel as if I read a book. I feel as if I sat on a couch chatting with the author over a cup of coffee, learning about her experiences and how she and her family got through them.

If time travel was a thing, I would toss a copy of Beyond Rain Man to that earlier version of myself who was desperately searching bookstores for answers. I would make the book magically appear in front of her, and I would tell her that this is the book she needs to make her feel less alone and more hopeful.

Kirsten Doyle was given a copy of “Beyond Rain Man: What One Psychologist Learned Raising A Son On The Autism Spectrum” by Anne K. Ross, in exchange for an honest review.

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

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.

autism doesn't end at five - aaron

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.

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

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.

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

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.