This article first appeared in the Summer 2019 Breaking Barriers. Since then, we have had the pleasure of working alongside Jeannette as she advocates for more inclusive communities and events. She is a constant voice, reminding those around her that everyone has a place at the table. We are thankful for people such as her who have the courage and strength to continue to speak up for those who are not being heard.
by Jeannette Versteeg, Bethel CRC, Listowel ON
Having a child with Down syndrome sends you on a lifetime journey of advocating. Although our son Evan is now in his later teen years, we have found that our church is still not prepared for a child with Down syndrome.
From the moment a child is born with special needs, time becomes consumed with doctor and specialist appointments. Every next step—finding day care, preparing for school, or entering a new church program—means more time advocating for your child. I am willing to advocate for him, but I had hoped that our church would take the initiative with our family. When he started Sunday school years ago, I did not mind making a plan for the leaders to set up a class that would work.
We’re frustrated that there has been only one year for Sunday school we did not have to advocate. As parents, we get tired of the process, and find it difficult to send Evan to any church activities except those he attends with us. A few times leaders have encouraged our child to be more active in the church programs, but they have not worked to accommodate his needs within the programs.
Our church has done a great job of addressing problems for people with physical disabilities but not for those with intellectual disabilities. Now that Evan is in his teens, we want him to have a close, constant connection to the church that is independent of us, his parents. The church needs an advocate so the next children do not get left behind.
Individuals engage and encourage Evan, but the church and its youth programs are missing out on the joy that full inclusion could bring. Our child is missing out on friendships, mentoring, and youth events others experience.