By Rev. Leanne Burris, Trinity UMC
Photo right: Little Joel Burris shows off his big smile.
Seven years ago, Joel entered our lives and changed our world forever. That makes him like most babies. But one of the things that makes Joel unique, including his infectious laugh, is his ability to extend compassion when it is needed most, and his green eyes (since all his siblings have blue), is his extra 21st chromosome. The day he was born the doctors explained that Joel has trisomy 21 or more commonly, Down syndrome. I remember staring out of the window in the hospital room on the first full day of his life in our world and wondering so much. I had so many questions and very few answers. And yes, I was afraid. But then the nurse brought Joel in after his morning checkup and he snuggled down into my arms, and the entire world tilted in a very different, but oh so delightful way.
Joel's first "outing" was to our church's Christmas Eve service where I was the children's minister. I was still on maternity leave and I was still terrified by this new journey we were on. I snuck onto the back row of an over-filled room to take in the wonders of Christmas Eve along with the 500 other weary souls gathered that night. I had never sat behind them all. I had stood in front, told stories, made announcements, and prodded these lovely sheep along the way. But never had I sat behind and watched what they watched, and observed how they worshiped.
And the tilting continued. I sat that night from the perspective of a nervous new parent of a special needs child, wondering if I could trust these people to love my child, to show him the love of Jesus, to accept him as he is, to make sure there was a place for him at every table (communion, fellowship hall, Sunday school). My fear was palpable! I trembled as I lugged his carrier forward to receive the gift of that open table. Keeping his blankets over him and not making eye contact, I received my portion and hurried back to my seat. How would I ever do this? How would I put him in the nursery; entrust him to the volunteer teachers; sit him on the front row for all to see when I returned to work?
Like all things, I learned to take them one at a time and as they came. No use hurrying, not with Joel. We will get there when we get there.
I was able to leave him in the nursery. I was able to wave goodbye at the Sunday school classroom. And this Sunday he will sit in the balcony with his older siblings. We have made one step at a time. But I have done so with a very different perspective.
Looking back, I was not so proud of my effort to include the children who came to our church with special needs. And so the spring after Joel was born, I went to each parent one by one and said, "Tell me your story again. I wasn't listening well the first time."
I met again for the first time the little boy who was prone to violent outbursts and could turn any object into a weapon, but who had amazing ideas and was frustrated by his expressive speech delay. He was 8. His mom suggested that I take a few extra moments before and after the class to listen to his ideas, patient listening had a calming effect. He came up with one of our most successful No More Malaria/Nothing but Nets fundraising ideas.
I met again for the first time the little girl who much preferred to participate from underneath the table. Having overcome fetal alcohol syndrome in the loving arms of her adoptive family, her ADHD was frustrating her, and the attempts to discover which medications would work best rendered her nearly incapable of controlling her behavior. But the confined space under the table felt safe. And she sang beautifully there. So for the Christmas pageant we built a "stable" using a table and she sang from there.
And while I was getting to know these children all over again, the most amazing thing happened. Every small accommodation I made for these children or my child (we worked on nursery procedures a lot that first year!), more and more special needs families began attending. I think they were already there, but they were not coming regularly. One by one I asked, "Tell me how I can make this experience good for you and your child."
It was around that time that I met my angel, the momma with her own extra-chromosome-carrying bundle of sweetness. She was about five years ahead of me in the journey. Together, and with the help of many other brave and kind mothers and fathers (both with and without special needs children), we began to really revamp our children's program. Nothing was incredibly expensive to change or difficult to implement. It took time. Time to listen to the parents, and the kiddo! Time to train volunteers until they felt equipped and confident. Time to make mistakes and try again.
And then one of our sweet girls at the church was involved in a drowning accident. She was revived, but suffered severe brain trauma and was left with moderate physical impairment. Fortunately our building was a newer one, and it already had an elevator. But she did not want to go on the elevator to the upstairs classrooms and be different from all the other kids. She wanted to walk up the stairs after prayers and snacks just like everybody else. The problem was that it took her a significant amount of time to mount the stairs. If we sent her with the first group, all the other groups had a long wait (remember it was about 75 kids that had to get upstairs). If we sent her last, she and her group were several minutes late for their class. Now you may be thinking this didn't sound like a big deal. I know. It didn't appear to be a problem to me at all. If the other kids have to wait or if she is a few minutes after others arriving, that's ok. She'll get there in her time and we can all be patient. But it bothered her. She knew the other kids were waiting on her. She knew she was late for class. So we simply altered our beginning schedule so that her group did snacks and prayer requests in their room instead of in large group downstairs. She didn't feel isolated, rushed, or left behind. And it wasn't long before she was climbing the stairs faster than anyone. But she needed our acceptance to get there.
We didn't have to build anything new. We didn't have to purchase special equipment. It didn't require a long workshop or special training. Not that there is anything wrong with those things. And eventually all of those things will prove to be a blessing as we seek to be more inclusive and accommodating. But it first required listening, adapting, and making sure each family knew we were beside them.
Over the next year, your congregation is going to be invited to take steps of inclusivity for differently-abled brothers and sisters. Before anyone begins to feel overwhelmed by the task of rebuilding buildings or installing ramps and elevators or hiring special teachers, let me propose a first step. Ask that mother or father, "What can I do to make sure your family's experience here is a good one?" Ask the brother in the wheelchair or the sister with profound hearing loss, "Is there anything we are overlooking in order for your experience of worship to be positive?" Then listen. Really listen. Don't listen as one with all the answers. Rather, listen as one straining to hear the sounds of the earth tilting ever so slightly. Then take one step at a time. And don't worry; your new differently-abled friend will be with you every step of the way!