When Faige Oppenheimer’s sixth child was unexpectedly born with Down syndrome, she wasn’t sure what to do next.
Despite numerous pre-natal sonograms, her doctors didn’t detect that Shira, now three years old, had Down syndrome because she doesn’t have a heart problem – one of the most common markers.
In addition to coping with the life-changing news, Oppenheimer said she received very little support and guidance from the hospital staff about what to do next.
“No one said anything to me. I didn’t get a booklet or a pamphlet from the [Canadian Down Syndrome Society], a where-to, a how-to… nothing. Not a social worker came into my room, not a doctor. They ignored me,” she recalled.
When she brought Shira home from the hospital, she was inundated with phone calls from well-intentioned friends about what she should do.
“I had one person tell me, ‘I have a child with Down syndrome – you have to start therapy right away!’ And then another said, ‘You must do this therapy,’ and another recommended another therapy and I remember saying, ‘Thank you so much, but for right now, for one month, until I recuperate from having a baby… if I decide not to do therapy for the first one month of my baby’s life, as a mother, that is my decision.’”
But when she heard about Zareinu Educational Centre’s Infant Intervention Program, she decided to meet with Ellen Babbin, the program’s infant interventionist and co-ordinator.
Oppenheimer met with Babbin when Shira was just a few weeks old, and learned about the program, which caters to children with a variety of developmental disabilities, including Down syndrome, cerebral palsy, and global delay.
The program runs twice a week with a team of seven professionals: an infant interventionist, a speech pathologist, an occupational therapist, a physiotherapist, a music therapist, a social worker and a program assistant.
Although Babbin insisted that the earlier therapy begins the better, Oppenheimer opted to enroll Shira at Zareinu when she was about five months old.
“I wanted my kids to enjoy the baby and be happy with the baby and have a good time and I wanted my husband to have time to adjust,” Oppenheimer said.
She said her daughter thrived in the program, and it became apparent to her very quickly that early intervention is key.
“There is a lot of research on this now that says the brain is capable of being shaped and molded by experience.
So of course, the big push is, let’s get them in there as early as we can [in] the critical period,” said Babbin, who has held her position with Zareinu for the past 17 years.
“The plasticity of the brain is maximal during the first two years of life. It doesn’t mean that the brain can’t change later, but I think what the research shows is that the peak effect on development and learning happens during the critical period.”
Zareinu staff work with the children to improve their fine motor skills, gross motor skills, communication skills, cognitive and social skills.
“When you come into our classroom it’s a busy place, it’s bright, it’s noisy, there are parents, there are therapists, there’s music, so they get used to being in a group [setting]. The earlier the exposure, obviously, the better,” Babbin said.
Oppenheimer said she is grateful for the Zareinu program and its staff.
“Every therapist, teacher and assistant is hand-picked. They are so warm, they are so giving. They focus on each child, giving them what they need,” Oppenheimer said, adding that the program is also beneficial to the parents.
“Mothers also need time to process what we’re going through, talk to other people about what they’re going through, get ideas, connect. As much as friends can be there for you and try to be helpful, they just don’t have any idea,” she said.
She said the advice she would give to other mothers coping with a special needs child, is not to forget to take care of themselves.
“If you’re not taking care of yourself, you can’t give to your child. You’ll feel burnt out, stressed and depressed. It doesn’t mean you have to take hours and hours of self-indulgence. If it means that at the end of the day, when the baby is sleeping and you want to take the phone off the hook and sink into the tub with a book and be unavailable, you’re not available… You have to do things that re-energize you.”
She also emphasized the importance of being your child’s advocate and trusting your instincts.
“If you’re not going to stand up for your child, no one else will. This is not a time to be shy. If you feel like it’s not working well with your therapist, speak up. You are entitled, just like anyone else, to get the best care.”
But most important, she said, is to remember to enjoy your child.
“Don’t forget to hug them, love them. Be the mommy also, don’t just be the therapist all day.”