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After her son’s autism diagnosis, Susan Cosgrove said she realized: ‘It’s me who has to change … not him.’

Lorrine Peruzzo Photography

This is part of a series that looks at extraordinary experiences in personal health. Share yours at health@globeandmail.com.

When my youngest son Phoenix was diagnosed with autism spectrum disorder at 21 months, it was hard because I knew what I was getting myself into.

My oldest son Liam, who's 10 years older, has autism. When Liam was little, it was easy to see him as not disabled, but just different. But as Liam got older and I watched him struggle – there were nights of crying and insecurity and calling himself names – you can't deny that it's a disability.

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So I had a feeling of dread. I had just had a really big job interview at the time for a really awesome full-time job that I really wanted, and now, that wasn't going to happen. There was no way I was going to be able to work full-time because I knew we were going to be starting speech and occupational therapy and intervention.

And even though my mom is the greatest help ever, with me being single, I knew that autism was about to be my full-time job and the centre of my existence for the next few years again. I was outnumbered now.

I do a lot of mentoring of other families going through the diagnosis, and one thing I tell them that I had to keep reminding myself was: take some time to grieve. Because although you haven't lost a child – I'm very lucky my children are healthy in body and mind – you've lost what you imagined your life was going to be and what their life was going to be in a single day. Being such an advocate, it's hard sometimes for me to say, "Yes, this does suck. Yes, this is hard."

With Liam, it took a long time to get a diagnosis. So by the time his diagnosis came, it was like validation. In Phoenix's case, I wasn't expecting it. I didn't have that same feeling of validation. When you're actually in the room and you hear it and you get the diagnosis, it's not like a sentence, but it's like, "Here it is. Here's the rest of your life."

On the way home that day, I took a picture of Phoenix. And I put it side by side with a picture of him from the day before. I would frequently look at it to remind myself that's the same kid. He hasn't changed. How I deal with him and what I do for him has changed, but he's exactly who he was the day before.

He's the same kid I already loved. He's the same kid who has these amazing talents and great abilities. It's me who has to change. My priorities have to change, my vision, my views. That's what has to change. Not him.

Susan Cosgrove is an early childhood educator and an autism advocate in Toronto. She has three children, Liam, 12, and Phoenix, 2, who are diagnosed with autism spectrum disorder, and Kaya, 10, diagnosed with attention deficit hyperactivity disorder (ADHD).

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As told to Wency Leung

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