Twice the work, twice the rewards for parents of twins with disabilities
When one of Rachel’s identical twins runs towards her smiling and maybe wanting a hug, she sometimes has to stop her and ask, “Wait, which one are you?”
Rachel and her husband, Adam, live in Toronto and have three beautiful children – seven-year- old, Nora, and two five-year-old identical twins, Audrey and Daphne. “I don’t think I can quite understand the connection they have to one another,” said Rachel, who works as a teacher. “They are the first person the other thinks of.”
Born prematurely, Audrey and Daphne spent six weeks in the hospital after they were born.
“They had a host of problems due to their prematurity,” said Rachel. “They both had brain bleeds. Daphne had a liver clot. Audrey had a hole in her heart. So it wasn’t an easy start. We hoped that once we got home we would be home free, but that didn’t turn out to be true.”
At six months old, Rachel and Adam started noticing the twins were missing milestones; not sitting up, not attempting to crawl, and not making typical sounds that babies make. “My husband and I were reticent to accept that anything was wrong,” admitted Rachel. “As a parent, it’s difficult to come to terms with believing something is different. Everything seems fine, and then it’s not fine.”
Soon after, the twins were diagnosed as having global developmental delays that affected their speech and motor skills. That led the family to arrive at Holland Bloorview three years ago. “My husband and I call it the happiest place on earth,” beamed Rachel.
Audrey and Daphne have taken part in speech therapy, the hospital’s feeding clinic and physiotherapy. Initially, Rachel and Adam struggled with the demanding schedule. Having twins is challenging, but having twins with disabilities is something entirely different. “It’s twice the work. It’s probably not even that, it’s more than twice the work,” said Rachel.
She admits she doesn’t recall a lot from those early years simply because she was constantly in a state of exhaustion. “It’s a blur to me. We were so tired,” she said. But she was awake enough to be amazed at the remarkable gains Daphne and Audrey have made since coming to Holland Bloorview.
“When they started speech therapy we would spend an hour with the therapist and they might make two sounds,” said Rachel. “Now they never stop talking.”
And their personalities have really shone through.
“Daphne and Audrey both have very giving natures,” said Rachel. “Daphne is the first person in our family to share anything. She will give, even if she wants something. If she sees that someone else wants it she will give it away. She’s incredibly thoughtful.”
“Audrey is always looking for ways to help out and to help others whether it is setting or clearing the table, tidying up things in the house or giving her sisters a hand,” Rachel added. “We think that she has learned that value, the importance of helping others at Holland Bloorview.”
Next fall, Rachel will be holding the twins’ hands as she walks them to their new class in a community school when they will begin Grade 1. It’s a big step for the twins, and for their parents. Mom and dad are a little nervous, but know that the girls are ready.
“They’ve come so far in their development,” said Rachel. “They’ve become more confident. They’ve become talkers. They can move their bodies in ways that appropriate for kids their age. They’ve become critical thinkers. That wouldn’t have happened without Holland Bloorview.”