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Suzanne's Story

Alex captured my heart the very first time I saw him, just ten minutes after he was born!  He was my first grandchild and I loved holding him in my arms and just being with him.  I am an active grandmother and delighted in being able to take my grandson a couple of times a week so my daughter could ‘get some rest'.  But, eighteen months later, I was worried.

I could be right next to Alex while calling his name and he would continue playing as if he hadn't heard me.  We couldn't get him to engage with us. He didn't use any words.  We thought he might be deaf, but a hearing test showed his hearing was fine.  He had difficulty eating.  Then he started banging his head.  The family doctor wasn't concerned … kids tantrum, eat strangely and get engrossed in their play.  While still concerned, we weren't sure what to do next.

Two months later, at a drop-in playgroup, an Infant Development Worker became very concerned while observing Alex play and referred him to the Ottawa Children's Treatment Centre (OCTC).

The assessment and confirmation that Alex had autism came 9 months later.  His first OCTC therapy began two months after his diagnosis but it was not until two years after his diagnosis (at four and a half years of age) that he began Intensive Behaviour Intervention (IBI) services at CHEO.

I was very concerned about the long waiting times.  Everything I read said that early intervention was key, and yet nothing was happening.  I would wake up in the middle of the night in a panic knowing time was working against us. We needed to do something now.  Our family decided to enroll him in private therapies even before he received his diagnosis.

I know that by providing early intervention for Alex we helped to give him the best possible start - an opinion that is supported by research studies around the world.

We were fortunate that we could afford private therapy.  But what about the parents who can't?  Their stress levels had to be even higher than mine.  I felt I needed to do something because every child deserves the same opportunity, whether or not their families can pay for private treatment … and so I began QuickStart.

QuickStart, in partnership with OCTC, raises money to fund the new Getting Started Services.  The clinic opened its doors in October 2008 and currently operates one day a week.  There is no charge to attend this unique clinic.  It provides a preliminary screening to determine each child's needs.  It offers one-on-one consultation and group sessions, which give children and their families the support and guidance they need.  It also provides parents with ideas to work with their children at home while they wait for a diagnosis and treatment.

Alexander had his fifth birthday this May.  He is now beginning to speak and interact with us!  I can't describe the excitement of hearing his voice for the first time, knowing that some children with autism never speak.  He is learning to read and loves to sing.

Alex also has a younger brother, Nathan.  The chance of a sibling having autism is 1 in 20.  Nathan was diagnosed with autism last February at 21 months.  Due to the early intervention he is receiving, we know he will achieve his full potential!

Suzanne Jacobson - Founder of QuickStart (2009)

 

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