A special interview for World Autism Awareness Day

Lisa Wilson is mom to Jonathan, who was diagnosed with autism almost 10 years ago. Lisa is also a media consultant and the Community and Media Relations Coordinator for Grandview Children’s Centre. Grandview offers outpatient clinical treatment, specialized programs, and support to thousands of children and youth with special needs and their families in the Durham Region, east of the Greater Toronto Area. I had the opportunity to meet Lisa in person when I spoke at a Grandview event this past December and we became fast friends although we’d been pals on Twitter for a long time!

AK: Tell me about your family.
LW: My husband Blair and I have been married for almost 25 years! We live in Uxbridge, Ontario with our four sons. Samuel is 23 and an architecture student at the University of Toronto. Benjamin is 21 and a business administration student at Trent University. Daniel is 17. He is a professional actor and a musician, headed to university for psychology in September. Jonathan is 11. He is in grade six in a local public school. He takes horseback riding lessons, and is passionate about the NHL.

AK: Describe each of your family members in one word.
LW: 
Blair: my rock
Sam: insightful
Ben: compassionate
Dan: intuitive
Jon: determined

AK:How does Jonathan’s diagnosis impact his life?
LW: Autism affects every aspect of Jonathan’s life, except his personality. Anyone who knows Jonathan can see that he is a loving, kind and thoughtful boy with a great sense of humour. When Jonathan was younger, the greatest impact of his autism was on his ability to communicate. He didn’t learn to say “Mommy” until he was four-and-a-half years old. I’ll never forget that day! As we learned more about autism we learned that you also have to focus on social, behavioural and sensory needs and understand how it is all intertwined with communication. We were fortunate to receive expert guidance from a developmental paediatrician at Grandview. That doctor helped us understand the importance of early, intensive intervention — and that the best approach is multi-disciplinary (speech, occupational therapy, behavioural therapy, play therapy, etc.).

AK: How has Jonathan’s diagnosis impacted you?
LW: There is a saying, “You’re only as happy as your saddest child.” This has certainly been true for me as a mother of four children and, in particular, as the mother of a child with special needs. There is a lot of guilt that comes with having the concerns over one child dominate the family dynamic, but the challenges of autism can be that demanding. Having autism in my life has also had an impact on my career path. In the first few years after Jonathan’s diagnosis, his therapy schedule was so intense it required one of us to manage it full-time. Those were difficult days, but our attitude was, “You’ve gotta do what you’ve gotta do”, and for us, that meant we would do all we could to help give Jonathan a chance to reach his full potential, even if that required me to put my career on hold.

AK: How does Jonathan’s autism impact your family?
LW: Before autism became part of my personal experience I had rules for everything. When it became clear that Jonathan was not developing as he should, my focus had to shift from micro-managing every unimportant detail, to a much bigger picture. I remember apologizing to the older boys and explaining why I was so distracted in that first year after Jon was diagnosed when we were coping with our grief while trying to get all his therapy organized. They surprised me by saying, “Mom, it’s been great! We’re getting away with all kinds of stuff and you’re not even noticing!” But I also think they’d say there have been times when Blair and I have been too distracted by the autism crisis of the day to be fully present for them when they needed us. The best I can do is to be honest about it when that happens because this is our life with autism. As a result, we are not helicopter parents and the boys are proudly independent.

AK: How did you deal with Jonathan’s diagnosis?
LW: We made a decision very early on to be transparent about it. I have known families that have tried to "hide" their child’s autism diagnosis from school staff, neighbours, friends, family — and even from the child himself — fearing judgment and stigma. We believe the more people know about autism and how it affects Jonathan and our family, the better it is for all of us. Jonathan has an Autism Assistance Dog (AAD) Guide. Cagney wears an official service dog vest that identifies him as an AAD dog. It’s a visual cue for people that although Jonathan may look like other kids his age, his behaviour and needs may be quite different.

AK: How do you cope with tough days?
LW: I have learned to cry when I need to and face my grief when it surfaces, but I make a conscious decision not to stay sad for long. When I’m sad, I can’t be proactive or productive, and that’s not good for me, or for my family. If you don’t advocate for your child, no one else will. I also accept who Jonathan is and realize his definition of happiness might be different than mine. He doesn’t have to live the dreams I had for him before he was born.

AK: What worries you about the future?
LW: We worry about who will look after Jonathan when we’re gone. As his parents, we will always be champions for him, but we can’t assume anyone else can continue in that role when we’re no longer able to do it, including his siblings, because we made a choice to raise them to have lives of their own. Therefore, we work hard to help Jonathan become as independent as possible. This dilemma represents a key difference between parenting a typically-developing child, and one with special needs. Although you always have concerns about the well-being of your children even when they are adults, you naturally worry most about the one who may not be able to fend for themselves.

AK: What do you do to recharge yourself?
LW: There was a time when mindless television was a welcome reprieve from my most stressful days. For the past 15 months or so, Jonathan’s school experience has been very stable thanks to an amazing school team, so I’m finding I don’t need to “zone out” as much. Instead I want to become even more connected to my family and friends.

AK: What advice would you give to other parents who have a child that has received an autism diagnosis?
LW: Love your child. He needs that more than anything. The world can be a tough place for a kid who struggles to communicate, or is overwhelmed by sights and sounds. Our goal was to find ways to help him cope, and the people who could teach him (and us) how to do it.

AK: What would you like people to know about Jonathan?
LW: Jonathan just wants to be a kid like any other kid. He wants to have friends, he wants to be part of the group.

AK: What else would you like to share?
LW: If there is a child in your community affected by autism, reach out to the parent, because they are the experts on their child. Ask them what you could do to make a playdate with your child successful for their child. Sometimes the answer may be as simple as, “Let’s keep it short — 30 minutes or less. And let’s play with the kids, instead of sitting in the kitchen with our coffee.” When you have a child with autism, you often don’t have the luxury of chatting with the other moms while your kids play independently, because your child may not have developed the ability to interact appropriately with the other kids yet, and needs direct adult support to learn how to navigate peer interactions successfully.