Special Needs: Understand the Diagnosis, Understand the Individual

by Amy Fenton Lee

This article is part of a series of articles on Special Needs by Amy Fenton Lee. See the first article, Special Needs: Your Best Resource May be Outside the Church and the second article, Special Needs: The Volunteers’ Blessings.

Many churches lack formal programs that reach or intentionally include children with special needs. However, the vast majority of children’s ministries, often unknowingly, have children with disabilities or developmental delays participating in their programs. Understanding the traits, symptoms and characteristics of common special needs is imperative for any children’s ministry team. Not only will church staff and volunteers grow comfortable accepting children with disclosed diagnoses, they’ll also become astute in handling behavior challenges and employing effective teaching methods that can apply in every education setting.

The Value of a Manual
In 1999, Tonya Langdon was a parent and children’s Sunday school volunteer in Skyline Wesleyan Church of Rancho San Diego, CA. Langdon began to notice her elementary school age son was struggling in his weekly Sunday morning classroom and frustrating the volunteer teachers along the way. Langdon’s son had recently been diagnosed with Attention Deficit Hyperactivity Disorder, Tourette Syndrome, and Oppositional Defiance Disorder. Realizing the majority of the church’s Sunday school teachers were parents of typical children, she knew that the average Sunday school teacher was out of his or her element as soon as her son entered the room. “My son was the square peg trying to fit in the round hole during the Sunday school hour in our church,” explains Langdon. Langdon knew with a little understanding for her son’s diagnoses and unique traits, he could thrive in the church’s programming. Once her son’s teachers became educated on his trigger points and learning style, the Sunday school hour was beneficial for everyone involved.

Soon after Langdon embarked on her own journey as a parent of a child with multiple diagnoses, she began recognizing the different issues with similar solutions that existed inside Skyline’s children’s ministry. “As I was pondering my own child’s situation, I discovered that we had a number of children in our midst who were not typical. Our church volunteers didn’t know what to do with the student who refused to sit down during story time or who exhibited a strong aversion to sound, let alone the child who continuously flapped his or her hands.” In response to the increase in “unique” situations, Langdon developed a manual of common diagnoses the children’s ministry could expect to encounter or was already experiencing. Ten years after the manual’s development, Skyline Wesleyan Church’s Teacher’s Manual for Children with Special Needs is still distributed and reviewed every teacher training session. Langdon notes, “The manual was the marking of a big culture shift in our church children’s ministry. No longer was the question ‘will we admit this child?’ into Sunday school or Vacation Bible School, but it became ‘how can we make the church experience success for both the child and the volunteer?'” Today, Skyline Wesleyan Church serves approximately thirty-five children with various diagnoses in different areas of the church’s children’s ministry.

Jackie Mills-Fernald, Director of McLean Bible Church’s Access Disability Ministry in McLean, Virginia echoes a similar perspective and church story. “On any given Sunday you’ll find a copy of the Access Ministry Differently Abled diagnoses manual in the hands of a ministry volunteer.” The volunteers have come to rely on the manual for understanding common characteristics, causes for peculiar or challenging behaviors, and techniques for successful engagement with the students. Volunteers also appreciate having the manual when a parent uses special needs acronyms or lingo while informing the child’s teacher of pertinent information. “We can’t always spend adequate time equipping lay servants in a formal training setting due to their time restraints. But we’ve found that our volunteers take advantage of the manual, reviewing it and educating themselves, especially as they encounter a child with certain symptoms or a specific diagnosis,” explains Mills-Fernald. McLean Bible Church’s Access Ministry hosts an estimated 500 families and children as a part of their special needs programming.

One Size Doesn’t Fit All
The same diagnosis may affect two children in drastically different ways. “It is important to remember that each person is uniquely made, and the emphasis on ‘unique’ is even more important in the special needs community,” McLean Bible Church’s Jackie Mills-Fernald reminds her volunteer team. A statement that starts with “All children with X diagnosis do this” is never true. This is especially important for volunteers to recognize because a child with a given diagnosis may actually have more in common with a typically-developing peer than another child with the same diagnosis. Responding appropriately to a child’s needs hinges more on the individual’s traits than the diagnosis. While one child diagnosed with Down syndrome may have limited verbal communication capabilities and struggle in social settings, others may thrive and even grow spiritually during their time in church programming. Special education teacher Sara Cloud of Newark, Deleware proudly shares stories of her twenty-two year old brother, Greg. Greg was diagnosed with Down syndrome shortly after birth. Today, Greg is a black-belt in Tae Kwando and runs the snack bar and cash register for a local athletic club. Is Greg capable of developing social relationships and understanding Bible teaching? You bet!

Autism is probably the diagnosis with the greatest variance. Allen Meisler, founder of Mitchell’s Place, a Birmingham, Alabama based Autism Intervention Center, explains a common misperception is that all children with autism have the same behavior nuances and incapability. So often when people hear the word “autistic” as a diagnosis associated with a child, an immediate picture of Rain Man comes to mind.” Meisler chuckles as he refers to the popular 1988 film featuring the unforgettable autistic character Dustin Hoffman portrayed. Indeed many children with Autism Spectrum Disorder do exhibit similar traits; however, the degree to which a child is affected and the behaviors shaped by the disorder may be radically different between two children with the same diagnosis. A tremendous number of children that fall on the autism spectrum are “high functioning and capable of thriving in a setting among typically developing children,” observes Meisler. While a child with autism generally requires more assistance in reaching his or her full potential than does a typically developing child, many are capable of mastering skills and absorbing information being taught. In a church setting this may translate to a lower child-to-teacher ratio and/or offering additional teaching techniques for different learning styles. Relatively minor adjustments to church programming may yield great benefits for the child diagnosed with a mild form of Autism Spectrum Disorder, Pervasive Developmental Disorder, or Asperger Syndrome.

Understand the Individual
Grasping a full understanding for the individual child is far more important than becoming an expert in any area of physical, emotional or intellectual disability. In addition to placing the child in the appropriate setting, successfully handling a single idiosyncrasy for a child may be the difference between a positive and negative experience inside a church’s children’s programming. Up-front conversations with parents to learn about a child’s nuances are imperative. Meltdowns over any number of changes (e.g. snack, routine, color of hand soap), can all be avoided and/or managed if church staff and volunteers are prepared. Similarly, when the ministry team is aware of a child’s strengths and passions, they can successfully redirect and/or convey the Bible education in a learning style most conducive to that particular child.

When All Else Fails, Love Prevails
Alyssa Barnes, M.Ed, Special Education and PhD student in University of Georgia’s Special Education program with an emphasis on public policy, shares a story from her own church volunteering experience. While serving in the infants’ room of First United Methodist Church of Marietta, Georgia, Barnes began caring for a child with profound physical and developmental disabilities. The child was age four yet functioning on the level of an infant. The longer-serving nursery workers familiar with the little boy quickly explained to Barnes that the child’s parents were still pursuing an explanation and diagnosis for the child’s condition and that they (the workers) assumed the child had few if any cognitive abilities. One Sunday, Barnes walked over to the child and told him to touch his nose if he understood what she was saying to him. To every nursery worker’s shock, the child touched his nose. Barnes continued with instruction allowing the child to give non-verbal responses to her simple questions. The child answered each command. As Barnes continued serving in the room she developed a relationship with the child. Once when she was holding the little boy, the mother entered the room and noticed the child making a distinct physical gesture. The mother reacted in surprise and delight explaining that her little boy was trying to tell Barnes he loved her.

Amy Fenton Lee enjoys equipping churches to receive and minister to families of children with special needs. For more on Amy’s writing see www.amyfentonlee.com 

Discussion Starters for Children’s Ministry & Parents:
– My child has received the following diagnosis/diagnoses: __________
– My child has an Individualized Education Plan (circle) Yes/No
– If answered yes, please describe child’s IEP: __________
– My child’s main mode of functional communication is: _____________
– My child comprehends instruction best in the following form (circle one) visual/auditory/kinesthetic
– My child currently receives therapies and instruction in: ____________
– The goals I have for my child’s development this coming year include (behavioral, social, academic, etc) : __________
– My child has the following area(s) of interest:__________
– My child can do these things independently: __________
– My child needs assistance with: ___________
– My child is uncomfortable with or has an aversion to: __________
– A trigger-point for a meltdown is when: ___________
– When/if my child experiences a melt-down he/she calms when we: ___________
– Doing/seeing/experiencing this one thing is an important part of my child’s routine: __________
– My child (circle one) does/does not enjoy music
– My child seems most relaxed in settings of (circle one) Alone, 1-3 children, 4+ children
– My child (circle one) would/would not enjoy a large group worship experience
– My child is really picky about: __________
– My child’s behavior may indicate a medical problem requiring immediate attention when:__________

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