Helen Van Sligtenhorst always looks at her daughter’s capabilities.
“I like to say what she CAN do. My goal is to remove the ‘t from her life. People may look at her and say she can’t do that. I say but she can.”
Van Sligtenhorst’s daughter, Sydney Vrolyk, 19 was born with Down syndrome.
People with Down syndrome are born with an extra chromosome. This extra chromosome leads to a broad range of issues that affect individuals both mentally and physically. Down syndrome can have many effects, and it’s different for each person. People with Down syndrome tend to have certain physical features in common. Their mental abilities will vary, but most have mild to moderate issues with thinking, reasoning, and understanding. They’ll learn and pick up new skills their whole lives, but may take longer to reach goals like walking, talking, and developing social skills. Down syndrome occurs in approximately one in 700 births in Canada.
“I remember being in shock when I found out in the delivery room. I never held my child without a diagnosis. She was never just a baby. She was a baby with a diagnosis,” recalls Van Sligtenhorst. “I’ve since changed that mindset in that I now have a daughter with Down syndrome. I do not have a Down syndrome daughter.”
When Sydney was six months old, Helen and her husband, John Vrolyk, became involved with the Down Syndrome Association of Lambton County (DSLAC). DSLAC is associated with The St. Clair Child and Youth Centre. Van Sligtenhorst is currently DSLAC’s vice president.
Jan Fairbairn-Burr is the liaison between DSLAC and The St. Clair Child and Youth Services. Fairbairn-Burr is an infant and child development specialist who visits the hospital when new babies with developmental disabilities are born and helps provide information and resources to the parents.
DSLAC provides a lending library, leg bands to strengthen hips, helps fund parents to attend conferences, and provides information, support, friendship and socialization. They are also involved in letter writing campaigns to various levels of government on issues affecting people with Down syndrome.
“Number one is having other parents to talk to about what your child is going through at a certain age,” says Van Sligtenhorst. “We are parents who share stuff that is going on with no judgment. Every child is different and every experience is different. There’s no cookie cutter. We’re just here for each other.”
She says the group has helped her learn about navigating doctor’s appointments, government funding sources, the school system and local organizations that can be of assistance such as St. Clair Child and Youth Services, Pathways Health Centre for Children, Family Counselling Centre and Community Living Sarnia Lambton.
Learning how to advocate for her daughter has been a big job for Van Sligtenhorst and her husband. For example, Sydney loves baking and cooking but many people believe that individuals with Down syndrome should not handle knives because they may get hurt.
“Haven’t you hurt yourself using a knife?” argues Van Sligtenhorst.
Most people have as well, so why should this prevent Sydney and others from helping in the kitchen, she reasons.
She has heard similar arguments about people with Down syndrome using power tools. She says DSLAC recently teamed up with retirees from the Carpenters Union Local 1256 and together they have provided opportunities for individuals with physical or developmental disabilities to use power tools to build three projects. A snowman and a birdhouse were finished earlier this year and a reindeer is planned for November.
DSLAC teamed up with Holly Wenning to offer an Expressive Arts program for children with Down syndrome.
There is also a speech camp once a month for members of DSLAC. Camp attendees pay a nominal fee and DSLAC fundraises the balance. Individuals learn about muscle tone, learning to make eye contact, role-playing conversations and much more.
At 19 years old, Sydney attends St. Pat’s High School. Her best friend is Morgan D’Hooghe. They spend time together like any other friends. Sydney has a boyfriend, Owen Holubeshen, and they have attended prom twice. Sydney has a very active social life. She is involved in Special Olympics, bowling, weight training, basketball and much more. She is an honorary deacon at Redeemer Christian Reformed Church and helps with the collection. She serves juice after church and helps in the nursery.
This May, the Vrolyk sisters, Sydney, Paige (17) and Abby (15), started a Snacks for Summer program and raised over $10,000 to purchase snacks for local children and youth. The girls raise the money, grocery shop for the snacks, sort it and deliver it to St. Vincent de Paul Society. Sydney is active in this program by sorting, counting and bagging the snacks.
Sydney also helps out at her mother’s business, Harbour Bay Clothing. Her parents have money set aside for when Sydney is ready to go to college. In many ways, Sydney is like any other 19 year old.
“That’s what I want for her – to have the same opportunities as every one else.”
October is Down Syndrome Awareness Month. It is a chance to spread awareness, advocacy and inclusion throughout the community.