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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.

 

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January Goals: Laying The Foundation

launchpadSo, now that I have started 2012 off with a week of inspiration from guest bloggers, it is time for me to solidify my own goals for this year. In short, this year is going to be about me. That does not mean that I will ignore my children, refuse to cook dinner for my family, and let everyone go around in dirty clothes. It simply means that I will do a better job of taking care of myself.

Since becoming a mother, I have put the needs of my family first. Which is fine – the truth is that ultimately, everything I do is for my kids. The problem is that I have been taking care of everyone else at the expense of myself. This has led to me being overwhelmed, exhausted, and in many instances, frustrated and unhappy. In a way, I have allowed the essence of me to get lost, to be buried underneath all of the layers of responsibility that I have imposed upon myself.

And so, this year, I am going to find some balance. I am going to pursue some dreams that have been in the horizon of my mind for some time. I believe that being more balanced, less tired, and more in tune with myself will benefit everyone around me.

In 2012, I am aiming to make great strides in my running. With the help of my friend and coach Phaedra Kennedy, I am going to break 2:10:00 in my Run for Autism in October. I am going to make inroads in the world of writing. And come hell or high water, I am going to develop a positive relationship with food that allows me to build good nutritional habits. The old pattern of alternating binge eating with starving myself is going to come to an end. Sometimes I’m thin, sometimes I’m fat, sometimes I’m in between. I’m tired of the yo-yo, and it makes clothes shopping impossible.

My focus in January will be to lay the groundwork for success. This is my plan:

  • I will realign my sleeping habits to go to bed earlier, so I can wake up early in the mornings to run without feeling like I’ve been hit by a Mack truck. When I start my training program on January 30th, I will be used to getting up at five in the morning. My body will have already made that adjustment.
  • I will learn how to do the strength training exercises that Phaedra gave me, so I can incorporate them in my training program right off the bat.
  • I have ordered my Precision Nutrition kit (thanks, Phaedra, for the tip). When it arrives, I will not just dive into it like an overexcited puppy. I will take the time to look over it properly, learn how to use it, and plan appropriately.
  • I will contact a web designer about revamping my site to incorporate both my blog and a general writing component. That will make it easier for me to market myself as a freelance writer.
  • Since I already have a day job, I will start to use my commutes for writing. That’s exactly why Santa brought me this nifty little ’puter that I am writing this post on.

By the end of this month, I will have built myself a launch pad, and I will be able to spend the rest of the year in pursuit of my goals.

Hop on, it’s going to be a wild ride!