Updated: Aug 23, 2022
Denial in the face of challenge only delays results. When we overcome our fear and the stigma we put on the truth, that’s when progress begins…
Mike Gatopoulos has been visiting Lansdowne Children’s Centre with regularity for nearly ten years. His young son Jack was born with Williams syndrome, a developmental condition that occurs when someone is missing a small piece of chromosome 7. It’s not a condition he inherited from his parents, and not something you could easily point to a cause. It’s a twist of fate that starts a change in a family’s journey.
Seeing Jack enter through the doors at Lansdowne is an experience. He is highly social, quick to offer hugs and tell you he “loves you,” even if you just met. His nickname with front desk staff is ‘the Mayor’ because of his confidence and ownership of the space. And why not? Lansdowne is a safe space for Jack, a place he’s been visiting since he was a toddler to receive occupational therapy and physiotherapy to help with muscle development and coordination.
“I remember when Jack first started at Lansdowne, I pushed back against the label of him being special needs. I was saying he just needs a little help swallowing his food, he’s just spitting it out after he chews it. It’s not a big deal. He’s sitting late and he’s not crawling yet, but it’s not a big deal. He’s not talking, but he’ll catch up, he’ll be fine… etc.”
Mike credits Jack’s mom for her strength and pushing the referral process to get Jack into Lansdowne. The self-referral for swallowing issues propelled their intake experience, a “blur” to Mike this many years later.
“I do remember that Jack’s HITs team coordinator, Sandi, came out to our house. We talked about what the process was going to be like and answered a lot of questions. When you have a kid who needs additional help suddenly there’s information coming at you from everywhere. I can say that Lansdowne was incredibly thorough. Some of the questions they asked and things they did were things that would never have crossed our minds. They were very involved with Jack right away. It was nice, it was comforting to feel like we had somebody in our corner.”
A young family still making discoveries as new parents, Mike shared how his early denial was wiped from reality. It was about six months after Jack started services at Lansdowne when the family was confronted with his Williams syndrome diagnosis. This wasn’t a case of catching up on missed milestones. Jack’s genetic condition meant he would need assistance for much of his life.
“It was kind of the world came crashing down. There was definitely a grief process, because all the thoughts and dreams of your kid’s life and all the amazing things they’re going to do – some of those things are gone. And that’s a lot to deal with as a parent.”
Once special needs become part of your child’s identity, your eyes open wider to inequity. Opportunities for participation and access to activities become far more elusive. As Mike put it, Jack is already missing a part of his seventh chromosome, why should he have to miss out on camps and teams and other kid experiences too? It’s just not fair.
Outside of recreation, there are many other tasks that once seemed routine but now become far more complicated. Simple things other families might take for granted, like a trip to the dentist.
“Jack needed dental surgery. Bad teeth is a symptom often associated with Williams syndrome. What’s terrifying about that is another symptom of Williams, the risk of sudden death associated with the use of anesthesia. So instead of a short trip to the dentist to check for cavities, Jack had to wait months to eventually get into Sick Kids for a life-risking treatment.”
Mike was brutally honest about the emotional impact on he and his family. On top of the anxiety of the unknown new parenting challenges that that he would face, there were feelings of fear, grief, and self-loathing for thinking himself selfish for worrying about how becoming a parent of a child with special needs would impact his future and his family’s future.
“There’s a lot of guilt that comes with thinking, what about my retirement? Is my kid going to live with me now for the rest of my life? What does that make my life look like? There’s a lot of shame for having those thoughts…There’s a lot to unpack, a lot of stuff as a parent you keep inside because you don’t want to share those feelings. You don’t want to be that person who gets labelled as a ‘Bad Person’ because I thought these natural, grieving type things.”
At Lansdowne Mike found support for his family and opportunity to talk openly about the feelings he, and they, were experiencing. They were welcomed into a community that shares the same challenges, realizing that tens of thousands of parents have already walked the same path. There’s comfort in knowing you are not alone.
“That experience was a big part in why I joined the Family Support Network. Knowing that there are other parents, going through the same denial and facing the same stigmas. I really wanted to join the FSN to be an outlet for other people having those same feelings and be able to talk about it in a safe space. We’re all allowed to feel bad in our way, and that’s okay. It’s part of the grieving process.”
As Jack’s journey with Lansdowne evolves, so does Mike’s involvement. In 2020 he joined the Lansdowne Children Centre board of directors, adding the voice and perspective of a parent and family currently active in services.
When Jack became school-age his pre-school services with Lansdowne ended, not because he no longer needed the help but because his age moved him. Jack was able to attend private physiotherapy to continue his progress, eventually getting a new school-based referral back into Lansdowne – where it took nearly a year on the wait list to get back into service. Mike is aware of the capacity limitations of the current Lansdowne building at Mount Pleasant Street in Brantford and the growing wait times as demand for services and supports increases. He hopes that he and other families can raise their voice to help advocate for change.
“Lansdowne champions kids. They champion parents, and families like ours. The things that we go through. I felt that the amazing things they’ve done for Jack and our family, I wanted to give back. To be that champion for other families.”
Asking Mike about the waiting period for service and any opportunities to engage with alternative resources, he shared a parent’s challenge with relying on books, websites and instructional videos.
“There are some very good resources for parents, but we’re not trained to identify the problem. For example, I might interpret Jack’s symptom as being an issue with the strength of his left leg, so I would follow exercises to work on his leg. But a professional at Lansdowne might see the same symptom and immediately recognize it’s not his leg, it’s his core strength. So as a parent, working from resources, the help I’m trying to give isn’t doing anything to help Jack, and may even cause him discomfort and frustration. That’s why it is so important and impactful to see a professional in-person and get instruction.”
Advocating for the needs of children is an important parent skill. Whether talking to medical staff, school personnel, politicians or community members, it can be uncomfortable and intimidating. Reflecting on a decade of learnings Mike can identify a change that he believes all families go through, some faster than others.
“Our first couple medical appointments were overwhelming. Even the start at Lansdowne. People are throwing a lot of terms at you, a lot of acronyms. Saying a lot of things, you don’t understand. You just kind of step back, take in whatever you can. It takes a bit of time to find your voice as parents, as advocates for your kid. To find a way to balance ‘whatever you say, you’re the expert’ with realizing that you’re an expert of your kid, and that your kid is an expert of his/her needs.”
If you are looking for someone to speak with, and the support of other parents, please reach out to the Family Support Network. We are here for you.
On Facebook: Lansdowne Link Family Support Network
Join this private group for Lansdowne parents and families, where you can ask questions, share experiences and connect with friends.
By email: LansdowneLink@gmail.com
Contact the Family Support Network directly, monitored by volunteers.
Contact the Family Engagement Coordinator: Renee Cochrane is a Lansdowne employee and is dedicated to helping families connect with each other for mentorship and support. You can reach Renee by email at email@example.com
THANK YOU MIKE and JACK and FAMILY for sharing your story with all of us.