Down syndrome is a challenge and a joy for families.
“Of course they’re different and that’s OK. Different doesn’t mean less,” said Amy Johnson, whose four-and-a-half-year-old son, Jovan, has Down syndrome, which is known medically as trisomy 21.
Johnson and her husband Seth were looking forward to having a brother or sister for their daughter Ebe, now seven, when an ultrasound alerted them to some concerns.
“The doctors thought the baby was too small and could have a minor heart defect but that it didn’t look like Down Syndrome,” she said. “We decided that if this baby was going to be with us for two minutes after birth or a lifetime, we were going to preserve and appreciate every moment with him.”
The family was living in Fort MacMurray at the time and Johnson spent the last part of her pregnancy in hospital in Edmonton in case the baby would need immediate heart surgery. Jovan was delivered eight weeks early by caesarean section.
“He was two pounds six ounces. I was shocked at how small he was. They took him to assess him right away and we didn’t even know if he’d be alive. My husband went with them and came back with a little bundle and there was Jovan with his tiny face, breathing and looking around, his spiky hair sticking out. He was a fighter from the get-go. We were overjoyed.”
Jovan spent two months in care, fed with pumped breast milk and formula as the extra chromosome in Down syndrome made him metabolize food very quickly and he needed a lot to grow.
“His name means ‘God is gracious’ and we saw that grace through the pregnancy and with the support of family and friends. We didn’t know anything about Down syndrome, what to expect. I wish I had known to relax more and that most of his developmental milestones will be unusual. He’ll be on his own journey. It will come,” said Johnson. “He started walking and mimicking words at two-and-a-half and he’s talking really well now. It’s fun to see him communicate.
“We had lots of help from professional services in the first couple of years and now here in Vernon and we appreciate that so much.”
Down syndrome occurs when there are three copies of the 21st chromosome instead of two. This gives the body messages to do one-third more of what the chromosome typically does and the responses are different in each child. One effect can be that the body is told to make more of certain brain chemicals leading to imbalances.
Johnson said there are ways to help, with modified diet and vitamins and that research is finding other ways to compensate for where the body is overcompensating.
“To us Jovan is a normal kid, a younger kid. He is ahead of kids his age in some areas and behind in others. It doesn’t make any difference to our family. He’s just Jovan. He’s a lot of fun, very expressive, a real jokester and he loves music. He knows the whole alphabet and a lot of numbers. He’s stubborn but he needs to be to meet his challenges and make breakthroughs. He’s very social.”
Jovan is in pre-school with an aide and will be in kindergarten in the fall with an aide.
“What I tell parents with a child with Down syndrome is that their kid’s going to be awesome. They have the ability to do anything. There’s extra work you’ve got to put in but they’re more normal than not. We are hopeful for Jovan. Things are changing quickly. We know many stories of people with Down syndrome who have very good lives.
“I used to not know how to respond to children or people with special needs. It’s scary from my side to see how people might look at Jovan. It’s too easy to see limitations. Some differences are more evident than others but different isn’t wrong, it’s just different.”
The family has since grown with the birth of Ailielle, two, and the Johnsons plan to have more children.
One thing Johnson missed was a support group so she decided to start one, T21 Connect, for families to meet. She and other members will have an information table at The Village Green Centre from noon to 4 p.m. March 21, World Down Syndrome Day. For more information, email t21connect@gmail.com.
