Children’s centre offers mentorship for parents
Program matches families based on diagnosis, specific resources, expertise
When Michelle Sanders first came to Niagara Children’s Centre, what she needed was support.
Her son, Everett, had sustained a brain injury at birth, leading to a diagnosis of cerebral palsy. He was immediately connected with the centre, and since 2016 has taken part in its services, including occupational therapy, physiotherapy and augmentative communication.
But for his mother, the experience was difficult. There were no programs offered for parents or caregivers to walk them through their child’s life-changing diagnosis — no one to connect to or speak with.
“I needed to talk to other parents and other caregivers who were living different lives than typical parents. I needed to see that other families were sharing in differing experiences, just like I was,” said Sanders. “That was something that I was really craving.”
She got that support in other ways, by meeting families through children’s programs, but there was no official service. Years later, when the centre developed its family mentor program, Sanders was eager to take part, understanding the need for it.
The program matches families based on a number of factors including their child’s diagnosis, specific resources or expertise or similar situations.
“When you’re starting new to service — maybe somewhere in the middle of their journey — it just helps to be able to bat ideas off other caregivers. You pick up tips and tricks along the way from (others) that have navigated the system or navigated social situations,” she said.
“It’s just incredibly helpful and it lends a perspective that you can’t get anywhere else. You don’t know this perspective until you walk the walk … it comes from living and breathing it 24-7.”
When Dyane De Lima Pinto first heard about the centre, she was living in Stoney Creek. Her daughter,
‘‘ It lends a perspective that you can’t get anywhere else.
MICHELLE SANDERS PARENT
Joannah, was born with the rare Cornelia de Lange syndrome. Joannah requires a feeding tube, is very petite — at five years old, she’s 8.16 kilograms (18 pounds) — and is nonverbal. She doesn’t walk, crawling everywhere, and requires a hearing aid and glasses.
“She is very funny … she’s the class clown,” said De Lima Pinto. “She’s very happy, she’s very stubborn, but she’s very determined to learn and do things in her own little way, even having limb differences, she can grab and pick up everything. She is definitely our pride and joy.”
When the family moved to Grimsby, they were able to join the children’s centre — and immediately there was a difference. Welcomed in “like a family” where “everyone knows you,” De Lima Pinto felt comfortable in the initial meeting with a social worker to speak about her struggles as a mother feeling unsure and lonely.
When she heard about the mentorship, there was no hesitating in joining. She was matched with Sanders, and soon afterwards they were bonded beyond just mentee and mentor — it was a friendship that extended outside the program.
The two mothers connected over similar shared experiences, with both their children being nonverbal. Sanders introduced the new-to-niagara family to accessible playgrounds and kid-friendly farms. She offered life-experience guidance. For De Lima Pinto, even advice as small as introducing a calendar or bringing activities to playdates was what she needed, but didn’t have for the first years of Joannah’s life.
Sanders also opened her eyes to advocating for their children, by having accessible playground equipment installed in local parks. As a parent, she saw herself becoming more optimistic, less angry and less alone.
But just having someone to talk to was huge, to have a conversation with someone that “gets it, they don’t think I’m crazy.”
“I feel like some of us, going through this, we isolate ourselves because going places, people don’t understand, they don’t get it if our child is throwing a tantrum. Having this program, having someone to talk to that understands, it really helps,” said De Lima Pinto.
“Joining the program, it helped me realize I’m not alone. There are people out there that are going through the same struggles and we can help each other.”
But the program is not a oneway street, and Sanders often wonders who is getting the most benefit. For families with medical needs, it can be difficult to find others facing similar challenges — even now, years after joining the centre, topics still come up that she struggles to deal with.
Now, however, she has friends by her side.
“Nobody has all the answers, that’s not what the program is about … it’s not about delivering the secrets and the truths of everything,” she said. “It’s about navigating and finding the best way for each individual and that looks different for every family.”
The family mentor program is part of the centre’s family partnership program, which includes a Parent Talk support group Sanders co-leads monthly. For the community of caregivers, it is about being the best they can for their children, and striving to give them the best life possible.
Connecting with people who offer no judgments and simply listen is “absolutely essential to the success of those caregivers helping those children.”
“Some of the loneliest hours are the hours of the night, in the dark,” said Sanders.
“Most of our conversations happen after hours because that’s the quiet time of the day and being able to speak to somebody when there’s nobody else around to talk to you is incredible.”