Support group stems from mother’s love

For Jennifer Frost and husband Cam, having a baby with Down’s syndrome was not a reason to be depressed, but rather a call to reach out to others in the same situation and bring change to the system.

In November, Frost gave birth to her son Logan. Not expecting any problems, it came as a shock that the baby had Down’s syndrome. She hadn’t done any prenatal testing, she said, because she was young and her husband already had a son by a previous marriage.

“When Logan was born, it was pretty clear that there was something wrong,” she said. “The doctors told us that they thought he had Down’s syndrome.”

That was the beginning of a journey that led the young family, searching for support and answers, to instead start a support group themselves. Frost describes the situation just after having her baby as overwhelming, with people coming in and out of the room with information.

“Everyone was so supportive about the fact that he had Down’s syndrome, but everyone was missing the fact that he was a baby,” she said. “It was extremely overwhelming. That’s the last thing you want to do, read a bunch of papers after you’ve just had a baby.”

Frost’s husband, Cam, had a hard time dealing with the situation in the beginning. He wanted to talk to somebody that had a child with Down’s syndrome so he would know what to expect.

“He had a lot of questions that no one could answer, because they’re just giving us folders and books,” Frost said. After heading home with the latest addition to their family, they found another couple, whose one-year-old also has Down’s syndrome.

Talking to them helped, but the Frosts decided to do something to help other parents in similar circumstances.

“Both my husband and I have decided that while it was really tough for us, we wanted to be there for other couples going through the same thing,” she said. To help, they left a letter at the hospital for new parents in similar circumstances, expressing their willingness to come in and talk about what they can expect.

Six months down the road and two months after Logan had open heart surgery at the Children’s Hospital in Vancouver, the Frosts have taken it a step further and started a new support group for parents of babies with special needs.

The group held its first meeting two weeks ago, and Frost was surprised at the turnout. Besides themselves, there were five other couple who showed up for that first event at the Penticton Boys and Girls Club, representing not only different age groups, but different special needs as well.

“Everyone has the same fears, regardless of whether it’s Down’s syndrome or autism or whatever,” she said. “You still worry about your child and the future. You don’t know.”

One thing that made the meeting special, Frost said, was the inclusion of fathers as well.

“It wasn’t just a mom and baby group,” she said. “Everyone just shared their story and what they’re worried about and their fears and concerns. It was really nice to have the camaraderie with everyone at just the first meeting.”

Frost found that the parents all had a common concern over what the future holds for their children, wondering if they are going to be able to live independently and look after themselves or will always need someone to look after them.

“It makes you feel like you’re not alone out there,” she said, adding she’s made a lot of contacts with people over the Internet. “I’m talking to people but they don’t live here in the Okanagan.”

Karen Brough, from the Okanagan Boys and Girls Club, said she’s impressed with the Frosts determination to help other parents. She’s working with the couple to help organize the support group.

“This particular parent is amazing,” Brough said. “She’s going to be a force regarding advocacy and support.”

The new group is continuing to meet on the first and third Wednesday of the month at 5 p.m. While the parents are chatting and enjoying a group dinner, there’s a nearby area for the children to play. Parents interested in participating can contact Brough at 250-487-8511.

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