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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.

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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.