In my blogging, speaking and networking a hot topic is always “The Church” and inclusion. Almost every time I do a speech or a workshop, questions arise. I am a person of deep faith. While I try not to hit people over the head with it in presentations and such, I also do not hide it. It is a huge part of our family, our journey and of my inner core. I am not a religion expert, but I believe that inclusive practices should be welcomed in any church. I am Christian and more specifically, I have almost always been a part of Baptist church. Therefore, organizationally I am most familiar with how Baptists operate. We as Baptists believe in local church governance so there is some difference from church to church. Whatever your denomination, religion or faith preference I believe we can share some ideas that will support a person with an intellectual disability being meaningfully included in your church experience.
That said, many people wrongly assume that “The Church” welcomes those with disabilities with open arms. From what I have heard from families and my own observations, I do not believe this is accurate. I do think we are making headway. I also believe that many church leaders recognize the need to make progress in this area. So I do not want my blog to be a forum for throwing darts at anyone. Please do not misconstrue stories as an indictment of anyone or organized religion. Instead let’s allow this to be a platform for educating and where we might initiate conversation and generate ideas. Remember we call carry our own baggage. I am sharing from mine!
Overall, we have had positive church experiences and Rachel has been included. I have done a bit of research to get input from those who have worked with us and Rachel through the years. I want to share a couple of ideas today from our experiences. More will follow. I also want to tell you that while it has been positive overall, I too have experienced wounds.
As a starting point, I want to encourage those of you who want your child included with typical peers in church (for us that is all Sunday school, all activities and worship) to try inclusion. Two immediate thoughts come to mind. One is to meet with the leadership. It depends on the age of your child but start with the minister or director for that age. I had a prenatal diagnosis and knew our preschool minister prior to Rachel’s birth. There was never any question but that she would go to the church nursery and do the same things as the other babies. Rachel was healthy so I didn’t have that component to deal with. Rachel went to the special activities for her age group and participated in Christmas programs, Easter programs, children’s choir and hand bells. She played Baby Jesus in the Christmas program because she was such a sweet baby. She always had very patient adult workers and fully participated. Her smile lit up the stage, even when her voice was off-key, from an early age.
Hand bells were one of my favorite things. They color coded them for the children so Rachel didn’t have to have any adaptation at all. She had so much fun and has loved church choir her entire life.
At each stage and transition, I would meet with the leadership, paid and volunteer. I wanted them to know our expectations. I wanted them to know Rachel’s needs. I wanted everyone to be successful. I basically knew nothing about Down syndrome before Rachel. I have had a crash course on Down syndrome. I don’t think it is reasonable to always expect people to know what to do if we don’t tell them or help them.
Even though we never needed a special friend or buddy in her church activities, I’ve always appreciated that our ministers offered. Some children and teachers need the extra good hands guys for safety or for helping with activities. Talk with them openly about your desire for your child to be a part. This is not just for your child. It is for the other students and the adults as well. We learn from each other.
Second tip is to educate. Offer to do part of a training to help teachers and helpers know how to work with your child. If they won’t or can’t allow you to do this, provide them with written materials, resources and videos or Internet links. Make sure to meet the adult volunteers who will be working closely with your child and give them information. For example, we would tell them that we expect Rachel to follow rules. She needs extra time to process instruction. Fine motor skills such as writing are not her strength. She is a good reader and will want to read out loud. I like to do some education of staff, teachers, etc, if at all possible. My next step would be to help you find peers who could be a buddy in the student events, students who would work to include her. You may need adults to help monitor in the beginning but before long, they students will do the work. One observation I have always had is that many of her teachers comment on the fact that Rachel can read better than some of her peers. I think this alone is a beautiful example of this church inclusion thing. It promotes this idea of high expectations.
I strongly recommend peer presentations at church, too. When Rachel was younger we did one for her class every year. We did a little PowerPoint just like we would for school. “Just Like You – Down Syndrome” has provide us with an easy educational tool. When we are having a weekend discipleship retreat, I find out who Rachel’s leader will be and send them an email. I invite them to spend 13 minutes watching “Just Like You.” Most often, they do and it makes a huge difference. JLY is specific to Down syndrome but it has great points (as does “Just Like You – Autism”) for working with kids of all kinds of abilities.
I guess I have more than two suggestions here but I want to leave you with this final thought. Have courage. A long time ago I decided I would never allow my own fears to prevent Rachel from being a part of something. I know it’s a fine line but do the best you can to educate everyone who will be with your child. Seek out a few positive peers/mentors to assist. Don’t give up at the first wrong turn. It is hard. It is exhausting, but this picture is worth a million words. #Inclusionworks. It’s worth it for everyone.
NOTE: I know there are people who have health limitations and other limitations. I am not all-knowing. I am simply sharing from our experiences and philosophy. “For I am confident of this very thing. He who began a good work in you will be faithful to complete it.” Phil. 1:6.
We need open dialogue to address this multi-faceted challenges.