Many churches have left a need unmet for those of us who have children with disabilities.
“I’m not leaving my church!” I thought to myself as my social worker, Jane Schmit, suggested I visit First Church of God in Oak Lawn, at 4600 W. 111th Street.
Jane was just trying to help after I expressed my frustrations over not being able to take Rhonda-Rene, who has special needs, to church. My husband Don and I have tried everything short of a dog and pony show to keep her still and quiet. Her disruptions left me so embarrassed; I’d break into a cold sweat.
Our remedy for the past two years has been to leave her home with a respite care provider. However, as of July 1, respite was suspended due to the Illinois state budget crisis leaving us unable to go at all.
Leaving Rhonda-Rene home never sat well with Don anyway. “It’s not right to exclude her from the family like this! You and Donae go. I’ll stay with Rhonda-Rene.” He’d say.
So, off to church I’d go, oftentimes alone.
How could a Sunday morning worship service be the cause of division for a faith-filled family? We decided to take Jane’s suggestion.
Dan and Nadia Marler of Oak Lawn have been pastoring First Church of God for 22 years. Dan said he actually grew up in the church. He and Nadia have been married 30 years and have two children, Rachel (26) and Taylor (24). “Our kids were raised in this church as well,” said Dan.
There are about 300 members divided among two Sunday services and in each, there’s a visible presence of various ethnicities of people with different needs. And, to our delight, we found them to be very inclusive of those with special needs.
“Our mission is to help hurting people.” Dan said, “We try to be a place of accepting anyone that’s hurting.”
Perhaps their hearts are full of compassion for those hurting due to their own pain.
“I was DES exposed. It’s caused lots of medical problems throughout my life.” Nadia said, “I was told I couldn’t conceive. Rachel was a surprise, a miracle to us. I had a full term baby, whom, at first, seemed healthy.”
DES was the first synthetic form of estrogen. According to the Department of Health and Human Services, those exposed to DES are associated with reproductive complications as well as increased risk of certain cancers.
Dan and Nadia explained, as Rachel began developing, they noticed she was delayed.
“People don’t realize how hurtful their curious inquiries are,” said Dan. “I had become so uncomfortable with their line of questioning I stopped wanting to respond.”
Rachel was almost nine when she was diagnosed with Smith–Magenis Syndrome (SMS), a developmental disorder that affects many parts of the body. The major features of this condition include mild to moderate intellectual disability, distinctive facial features, sleep disturbances, and behavioral problems. Each person with SMS is affected differently, with Rachael it’s also manifested grand mal seizures, that are being controlled by medication.
The first time I met Nadia, I was dropping off Rhonda-Rene in their children’s ministry. I was a little nervous about leaving her because we’d only left her in a church ministry twice in her four years of life.
The first time it went well. The second time, not so much!
“She has special needs. She may have trouble staying seated and she’s unable to speak. Is this going to be a problem?” I asked.
Nadia smiled. “Not at all!” she said. I was shocked Don and I were able to sit through a service together, uninterrupted and still had a happy child upon retrieving her.
Was it beginners luck?
We decided to go back, several times, and by golly, they’re consistent! It wasn’t just Nadia with the special touch either. Andrea Rodman of Gary, Indiana, is the children’s ministry director.
“Andrea loves children,” Nadia said. “She has five of her own. It’s her and our volunteers that keep our youth programs going.”
I could tell when I met Andrea that, that was true. She told me, “Rhonda-Rene is fine. We’ve got her. Don’t worry.”
I almost cried. I do worry. I don’t want her to be a burden to others.
Dan’s sentiments were, “We don’t have a special needs children’s ministry, we have a children’s ministry. We want all children and all people to feel accepted and welcome to worship with us.”
Don and I are enjoying worshipping at First Church of God. We’ve been members of our own church for nearly 20 years. However, for the sake of our family staying together, perhaps, with prayer, we may consider changing.
I hadn’t thought of how Rhonda-Rene felt about going to church before. I just wanted a place to take her where she wouldn’t feel rejected.
But after visiting First Church of God again this past Wednesday for Bible study I got a sense she liked to worship. Nadia said, “She was really humming and singing along with ‘Down in My Heart’ she even continued long after we finished.”
Sure enough, Rhonda-Rene, in her own word approximations, sang, “Joy, joy, joy, joy, down in my heart,” the entire car ride home.
Nadia had me in tears. She told me, “God has a heart for all kids. Keep bringing Rhonda-Rene to church. God has a purpose for her too.”
For information about First Church of God and their services visit http://www.visitusonline.org/