Ahead of World Down Syndrome Day on March 21, a father in Toronto is shedding light on the importance of sharing and educating scholars, as well as the general public about the genetic disorder.
Down syndrome is known as a condition in which a person has an extra copy of the 21st chromosome. According to the Down Syndrome Association of Toronto (DSAT), this extra chromosome causes issues that affect both the cognitive and physical ability of an individual.
“Down syndrome is the most frequently occurring chromosomal congenital anomaly in Canada. In Canada, approximately 1 in every 781 babies is born with Down syndrome. There are an estimated 45,000 Canadians with Down syndrome,” reads the DSAT’s website.
The DSAT says there are three types of Down syndrome. These include: Trisomy 21, the most common type, where there are three copies of chromosome 21, Translocation, when the 21st chromosome breaks off during cell division and attaches to another, and Mosaicism, when the nondisjunction of the 21st chromosome takes place in one of the initial cell divisions after fertilization.
David Goodman, along with his wife, have a seven-year-old son named Matteo with Trisomy 21 Down syndrome. He says they learned of the diagnosis right after birth and were completely unprepared for what was to come. Seeking guidance, they reached out to the DSAT for support.
Since then, Goodman has been advocating for his son and actively trying to open his door to opportunities.
“Matteo has taught me about patience and understanding. To truly look inside his head and understand his experience,” Goodman said in an email statement to Now Toronto.
In 2022, he made a short film for Matteo’s school for World Down Syndrome Day. He shared the video with six different classes and taught students about the disorder. In response, he received positive feedback from staff, students and parents.
“The purpose was to build a bridge, to help students understand better how kids with Down Syndrome learn, and in general help foster the spirit of inclusivity, equity and learning differences – celebrating who we are – all of us,” Goodman said.
This year, Goodman has created a new video with the intention of sharing it around the world.
“I am actively working on expanding the reach of the project beyond Toronto and Ontario, through media coverage and outreach. Former teacher colleagues have invited me to screen the video at their international schools in Indonesia and Sweden, and speak with students who are working on projects related to disabilities,” Goodman said.
Goodman says his goal is for Matteo and other kids with disabilities to be fully included and functional in society. He believes there is a lack of resources for those with disabilities and it greatly affects their day-to-day lives. He hopes that by educating and sharing Matteo’s story, he can inspire action and change.
However, this has not been an easy road for Goodman. Throughout his journey, his family has been met with challenges and difficulties. For instance, he says the pandemic has created new problems for people with disabilities. As a consequence of virtual learning, kids like Matteo were held back from further developing their physical skills.
“Where typical kids are set back, kids with disabilities are set back 10 times more. Virtual school was a disaster and pushed Matteo back considerably as he could not connect to it,” explained Goodman.
In addition to pandemic-born problems, Goodman says extensive wait lists for publicly funded therapy has also been a long-standing concern. Crucial therapies such as Occupational Therapy and Speech Language Therapy have to be paid out of pocket for parents and families like the Goodmans.
These are only some of the reasons why he continues to advocate and inform everyone about Down syndrome. This year, the theme for World Down Syndrome Day is “With Us, Not For Us” sharing the message that supporters should work with people with disabilities, rather than make decisions for them.
“I am trying to create a world that understands my kid – with knowledge comes tolerance.”
