Special Needs Spotlight

Written by: Martha Davis, County Road 9 Campus Kidway Assistant (Preschool and Special Needs)

Five years ago, we sat in the office of the neurologist department at Nationwide Children’s Hospital. We had walked in knowing that there was something different about our child, and walked out with a diagnosis, a binder of resources, a video to watch, and a lot of questions about the future. 

I wasn’t new to the world of special needs. I had taught 16-21 year olds who were diagnosed with moderate to severe disabilities for 11 years. I knew the signs to look for. However, it is different when you are the parent of a child with a special needs diagnosis versus a teacher writing a report. To be honest, everything changed that day. Getting an actual diagnosis brought a heavy weight to our hearts. How we spent our time as a family changed. We now had therapy appointments to go to, books to read, videos to watch, and research to do. Our finances were now different due to therapy appointments, changes in diet, and tools that were needed to help our child. Our relationships with friends changed, as their children grew and met developmental goals, our child wasn’t meeting those goals at the same time. Our relationships with our family changed, requiring them to adjust their plans around our child’s needs. Our marriage changed, as we now needed to put in more time and energy into our child’s needs instead of our marriage. In order to take a date night, we needed a babysitter that understood our child’s needs and would be patient with her. We needed someone we could trust. Our relationship with our other 3 children changed, as more time and energy was being spent on her needs and less time and energy was being spent on them. Life changed and we readjusted!

One more thing also had to change - our church. Our church was a church where everyone was welcome, including families with special needs. But as I looked around, making accommodations and having a culture of inclusion was not at the forefront of many people's minds. I looked around and didn’t see any children or teens on the autism spectrum, with ADHD, Down syndrome, cerebral palsy, or any other disability. According to the National Center for Education Statistics, students ages 3-21 served under the Individual Disabilities Education Act (IDEA) in the state of Ohio is 16%. That percentage was not being reflected at our church. Why was that? One parent of a child with special needs described it to me like this. “Coming to a large church can be very overwhelming. Coming to a church that doesn’t understand our child’s disability and is not able to meet him where he is in life is difficult. We spend more of our time dealing with our child, and less of our time concentrating on the sermon.”

In the parable of the Great Banquet in Luke 14, we hear Jesus speak of another time a portion of the community was excluded. The master of the house invited many friends and neighbors to his banquet, but they had excuses about why they couldn’t come. So he instructed his servant to “Go out quickly to the streets and lanes of the city, and bring in the poor and crippled and blind and lame.” The servant said, “Sir, what you commanded has been done, and still there is room” (Luke 14: 21-22).

The master may have looked around his home and knew who was missing, much like I was looking around our church at the time of our child’s diagnosis. Children like our child were missing from the worship center, the church gym, and our children’s classes. As Sandra Peoples states, “our mission is clear-invite them in, and make them welcome. Then we will experience the truth of what the servant told his master-when we make room for those who need accommodations, those who are often neglected, ignored, or ostracized, we will realize there is room for everyone. When a child, teen or adult with special needs pulls up a seat at the table and joins them at the banquet-when they actually see him or her-the entire church culture can change in miraculous ways.”

When our church begins to actually see and take the time to understand people who have special needs, they will see them as people made in the image of God, and they will learn to see the image of God in everyone they meet. When our church sees children, teens, and adults participate in corporate worship or bible studies using accommodations that have been put in place, it is my prayer that they will make room for new children, teens, and adults with special needs, such as sensory processing disorders, obsessive-compulsive disorder, visual impairments, social anxiety, or physical disabilities-the list goes on. 

When our church sees people who have different abilities than us, it opens up the door to reflect on God’s purpose for the church and its beauty in heaven (Sandra Peoples).

I asked 5 questions to families who have a child diagnosed with a disability and who also attend our church. These were some of the responses that I received.

Tell me how you discovered your child had a different ability?

• We noticed that he was having more melt-down’s than a child his age should have and a lot of them seemed to stem from anxiety or being overstimulated. He was also super high energy and couldn’t focus for long periods of time. 
• Early onset at the age of two and half years old where it was apparent with significant signs of Autism. It was noticeably identified by an older brother who was having the same condition.
• We learned that Juliana was different when she was 2 years old and diagnosed with 1p36 deletion syndrome. She had displayed global developmental delay before that and was in therapies to help her after her open heart surgeries at 8 weeks old and 13 months old, but it wasn’t until she was older that we learned of her official diagnosis.
  

What things have you found to enjoy about having a child with special needs? 

• One of the things he hyper-focuses on is reading, and he loves to read non fiction books. I love to hear all the facts and things that he is reading about. He is always so excited to tell people what he has learned.
• He is 100% genuine of not wanting to hurt other people's feelings. He  thoroughly enjoys pizza and movies and he never argues.
• Juliana is so FUN. She is a super happy, playful, loving, silly girl. We have a blast with her. She also is incredibly smart. She amazes us with the new things she is willing to try, how she loves to be challenged (on her terms), how opinionated she is, and yet how go with the flow she is as well. She gives the best hugs and kisses!
  

What has God taught you through having a child with special needs?

• After a melt-down, he is ready to move on and play and be happy again. I have really learned from him to be the same way. God does not want us to harbor anger and my son demonstrates that really well.
• To serve others and to define my purpose in life to give of oneself. To have Patience and love. 
• We have been humbled so much through God’s blessing of Juliana in our lives. I often say I need her more than she needs us. God has used Juliana to make it so clear that he values all life and that all lives are created by him on purpose, for a purpose. God has used Juliana to give us more patience and grace for others. 

What are some challenges you face as a parent with a child who has special needs?

• Being out and about is sometimes a challenge. He wants to always be moving and he gets overwhelmed and overstimulated quickly which can lead to melt-downs from not being able to process his emotions.
• Communication! It is very challenging to understand his personal feelings or wants because it's not always verbally known. Being a single dad and not having an immediate support group or significant other that follows church doctrine to share in everyday life happenings can also be a challenge.
• As Juliana grows, it is getting harder to take her places due to a lack of accommodations. Juliana is not yet potty trained, so a major challenge we face is not having a place to change her diaper, as she is too big for an infant changing table. It can also be lonely to be special needs parents as we sometimes feel that people are afraid to talk to us about Juliana’s unique care and needs. 
  

How can we as a church support you?

• My son has had some wonderful Kidway teachers who understand his special needs and work with him, and I greatly appreciate that support. However, it would be helpful for all the Kidway volunteers to have some training in ADHD, Autism, and other special needs so they all can see it and understand. Things are already harder for my son compared to other kids and I hate to see him getting in trouble because people just don’t understand how to help him. Gateway Church does have a lot of people who do understand and we have gotten amazing help from them and I am so appreciative. Training for all just might help everyone. 
• The church does quite a few things already by having a facility to assist with special needs. It would be nice to have a focus group that mentors families with disabilities that share the word of God together.
• We are so grateful for all the ways Gateway Church has come alongside us to help us with Juliana. We specifically want to thank Rebecca Heft and Molly McKanna for going above and beyond their call as volunteers to be one-on-one buddies with Juliana during her time in Kidway. It would bless our family incredibly, if Gateway Church could provide adult-sized changing accommodations at both campuses, so that we can care for Juliana while protecting her privacy and upholding her dignity. We love all the ways Gateway has included special needs children, from Sunday morning to VBS. We would ask that as Juliana grows up at our church that those efforts would continue to expand so she always has a place in our congregation. 

It is my prayer that we, as a church family, would come to realize that we have a unique opportunity to come together to listen and support families with special needs. We can create a welcoming community where, if they are weary and confused, we can bring hope - a place where we are not trying to fix things but listen, empathize, support, and speak truth in love as brothers and sisters in Christ. 

*Sensory bags are available at both campuses, located at the Resource Center.