Fort St. John couple Liz and Paul Kalas were understandably taken aback by the number of medical and child development specialists who came into their lives in the first weeks after their daughter Chloe was born.
First on the scene were the doctors who kept Chloe alive after she was born with serious health challenges in November 2011.
Then came the lactation consultant to help with Chloe’s feeding problems. Then an infant development worker from the Early Intervention Program. Then an audiologist when it became clear that the infant had hearing problems. Then a pediatrician, and a speech pathologist.
“And this was all before she was even three months old,” recalls Liz of that traumatic period. “She started getting physical therapy as well not long after that. It wasn’t until she was 18 months old that we knew she had lost all of her hearing, and they had discovered that both myself and my husband had the recessive gene for Pendred Syndrome.”
Pendred Syndrome is a genetic disorder that affects the thyroid gland and causes hearing loss due to changes in the inner ear. While the months leading up to Chloe’s diagnosis were extremely stressful, Liz is deeply grateful that the Fort St. John Child Development Centre was there for the family throughout it all.
“Anyone can self-refer to the child development centre for services if you think your child is not where he or she should be. It’s a really amazing thing,” says Liz. “You can just go there and someone helps you, plus they know about where to find funding and other support.”
Chloe is four now and a bundle of energy at her preschool, which is also operated by the child development centre. “If it wasn’t for support of the child development centre, our family would have had to move to a bigger centre,” says Liz.
But she notes that the speech pathologist has a caseload of 200 children and can only see Chloe once a week. The family has growing concerns that Chloe may have other developmental delays unrelated to her hearing loss, but face a 16-hour drive to Vancouver for additional services.
The child development centre has been a support for the entire family. Staff helped the family find an on-line signing coach through the B.C. Family Hearing Resource Centre, which also gave signing lessons to Chloe’s preschool class. They supported the family through the stressful 10-hour surgery for cochlear implants that Chloe had at B.C. Children’s Hospital when she was two.
And now Chloe’s younger sister Elise is getting some help with a crooked foot that the therapists spotted in the course of monitoring the younger sibling for hearing loss. (The two-year-old hasn’t shown any sign of hearing difficulties so far.)
“Nobody plans on having a special-needs child. It was a complete surprise to me,” says Liz. “None of what went on for us after Chloe was born was the picture I had in my head.
“I did everything right in my pregnancy – vitamins, yoga, drug-free birth, all by the book. As a parent, you blame yourself, and while I didn’t realize it at the time, I was angry. You beat yourself up over how this has happened, and find 100 ways to blame yourself. I think the child development centre was a big help with all of that.”
As a teacher, Liz sees other children with special needs in her classroom “slip through the cracks,” and that makes her fearful about what the future holds for Chloe. But the early interventions Chloe continues to receive in the all-important years between birth and age five are providing a vital foundation for her development.
Liz acknowledges that her attempts to give Chloe the best start sometimes made her forget in those early years that the little girl also needed just to be a child.
“I was so focused on therapies, sometimes I needed to be reminded that yes, Chloe needs those, but she’s also a baby. ‘You need to play with her,’” the therapists at the centre would remind me,” says Liz.
“And we did that, and it was wonderful. The staff at the centre would remind me that things were going to be OK - that Chloe would grow up and if there were problems, we would manage them.”
How you can help: Learn more about child development and early intervention in British Columbia at www.bcacdi.org, and the work of the Fort St. John Child Development Centre at www.cdcfsj.ca/. The centre is a member of the B.C. Association for Child Development and Intervention, which represents 30 agencies that deliver services to 15,000 children and youth.