This story is part of Amy Bell’s column Parental Guidance that airs on CBC Radio One’s The Early Edition.
Parenting can be an overwhelming endeavour filled with chaos, doubt and daily fears for your child’s well-being. But if you are a parent to a child with a disability of any kind, you might feel those battles more keenly than others and face fears most parents can’t even begin to fathom.
Through no effort of my own, I have been blessed with two remarkably ordinary children, but for parents with more extraordinary children — who have disability and needs unique to them — parenting can be a time filled with confusing lows and incredibly rewarding highs.
White Rock resident Leslie Stoneham wasn’t expecting to give birth to a child with Down syndrome 31 years ago. When she had Kierra, she was provided with outdated information and was still presented with the option of giving her newborn up for adoption — in 1988!
But she knew instantly that she was going to raise Kierra just as she had been raising her older daughter, and that meant plenty of love — sometimes tough love — compassion, and joy. It also meant focusing on Kierra as a whole person and not just someone with special needs.
Leslie has also had to fight and advocate for Kierra to get the assistance and government funding she is eligible for, and wishes that it wasn’t such a battle for parents to get the support their children deserve.
Can there be too much support? Not really— it takes a village, after all — but as any parent knows, there are times you need to push your child so they can fully realize what they are capable of .
‘Give her that opportunity’
Lucia Arreaga is a Bowen Island resident and the mother to a brilliant, boisterous six-year-old girl named Maya. Maya has ADCY5-related dyskinesia — an incredibly rare genetic disorder that causes uncontrolled movements and greatly affects Maya’s mobility.
Yes, she needs a great deal of assistance from her family, friends and community. But her family is very conscious of the fact that while Maya does faces many challenges, part of what will ultimately help Maya is knowing when to take a step back.
“It’s that fine line of staying close but not too close”, said Arreaga. “Give her that opportunity to prove to herself that she can do it.”
Parents such as Leslie and Lucia and countless others just want their children to be seen as people first — regardless of any special needs they might have. That they not be defined by their disabilities and that everyone realize just how lucky they are to have these children in their lives.
“She’s been my teacher. She’s taught me to be a better person, ” said Stoneham.
Arreaga has the same praise for Maya: “She’s an incredible, incredible human being … who has changed so many people’s perceptions in life.”
All too often, we view people with special needs and disabilities by what they can’t do, instead of celebrating all that they are capable of and capable of becoming.
Young kids are often most open to children with disabilities, but somewhere along the line to adulthood, we forget that natural acceptance and focus too much on what people are lacking.
As parents, we need to work hard to instill and keep this kindness and openness in our children.This will only continue to make a more inclusive community for everyone, which ultimately benefits those with disabilities and those without.