Bridging the Gap for Special Needs
Susanna (Edden) Zekas (B. S. Secondary Education ‘97) loves her role in Kaleidoscope, the special needs ministry of Trinity Baptist Church.
A native of Jacksonville, Florida, Susanna is married to Larry Zekas (TBC alumnus ’97) and mother to three sons (Wesley, Andrew, and Larson). She has been serving in Kaleidoscope since 2012, and she especially enjoys the opportunities it has provided for her to meet families of special needs individuals.
Susanna hopes to bridge the gap between special needs families and the general community by fostering that relationship through the safe and welcoming environment of Kaleidoscope.
Susanna understands by personal experience the unique challenges and joys that are part of the special needs lifestyle.
Her own sons each have a special needs diagnosis and story. In 2009 her youngest was unexpectedly diagnosed at birth with Down Syndrome. A few years later her eldest son experienced a brain aneurysm at age 14. In between those two life-altering events, her middle son received a diagnosis of ADHD and high functioning autism.
Through these experiences, the Zekas family as a whole, and Susanna Zekas as a mother, have embraced a lifestyle that highlights the beauty of unconditional love and the hope that is available in Christ.
Susanna says that her focus in special needs ministry as well as her inner strength is grounded in the hope found in Christ and the encouragement found in community.
In many ways, Kaleidoscope ministry is a practical living out of Romans 12:15, “Rejoice with them that do rejoice, and weep with them that weep.”
Weeping and rejoicing come hand-in-hand with special needs. She says that God has shown Himself to her family to be Emanuel, God With Us. She describes Him as being with her family through the difficulties – not distant and watching from the sidelines.
As a result, she cites II Corinthians 1:3-4 as what her personal role in Kaleidoscope is all about: “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.”
Susanna oversees Kaleidoscope under the leadership of fellow alumnus Jason Brown (’11), Children’s Pastor at Trinity Baptist Church.
Using her personal expertise and understanding of special needs, she has a passion to continue developing Kaleidoscope as a thriving ministry that bridges societal gaps for the local special needs community.
Kaleidoscope seeks to provide personalized assistance to its attendees. To do this effectively, Susanna routinely seeks to help identify and implement effective ways to integrate special needs ministry into other areas of ministry. This can vary greatly from offering headphones for use in the main worship spaces and a buddy system-style volunteer structure, to ensuring separate quiet spaces are available and an effective communication strategy with each individual’s legal guardian.
Susanna emphasizes that there is no one-size-fits-all method to special needs ministry.
The broad spectrum of special needs requires individualized considerations. Every ministry venue may not be able to accommodate every type of special needs. However, it is important to identify accommodations that can be made to better include special needs families. One of the most important ways she works to bridge the gap between the world of special needs and other ministries is by encouraging everyone to purposefully interact with and welcome special needs families.
“The biggest thing is acceptance… it can’t just be special needs volunteers who see and greet the families. It can be as easy as being friendly and saying hi! Pastor Jason is great at this; he knows all of our kids by name and comes into our class and purposefully connects with each individual.”
The unique and varied complications within the special needs community can be isolating.
In addition to medical and developmental challenges, families of special needs experience all of the typical family issues except that they are generally magnified.
“…there tends to be more financial issues, more marriage issues, more stress, more sibling issues because you may have one child who (by necessity) receives a seemingly unfair share of attention. Additionally in some cases, there are medical issues and behavioral issues… schedules can be highly complicated with multiple schools and appointments. The emotional toll is intense, combined with the impacts a diagnosis may have on hopes and dreams.”
Because of this, creating safe environments where special needs families can meet and enjoy time together is a priority for Susanna.
One way this is being realized through Kaleidoscope is the organization of family-style social events with special attention to accessibility and accommodations.
So far, Kaleidoscope has hosted two special needs family socials for all ages.
Most recently, 40 families (130 people) attended in addition to 25 volunteers. More than half of the families were visiting for the first time. Two families started attending church regularly because they found a safe place where they could attend as a family.
This Easter, Kaleidoscope is organizing a special needs-oriented family service on Saturday, March 30.
The service will be held in the children’s ministry building, offering best access to facilities, parking lots, and quite areas. Various outdoor activities and refreshments will be available to all who wish to participate.
Susanna is especially interested in connecting with and providing support to mothers of special needs.
Knowing by experience the unique challenges these women face, she hopes they will feel seen and understood in Kaleidoscope.
“I try to connect personally with every mom I meet through this ministry. Sometimes its just a text during the week, but we try to meet up in person.”
Additionally, she is helping to organize a retreat this summer for mothers of special needs individuals.
The event will be offered on campus with the goal of providing like-minded friendship and encouragement. It will be held in coordination with the Tennessee-based special needs ministry ‘Rising Above’ who will provide the curriculum and content. The first retreat was held last summer and welcomed 15 moms in attendance.
Susanna says that even though there are hard days she has experienced many joys as a special needs family.
What she treasures the most is how it has brought into focus the immense joy that can be found in small victories because they represent overwhelming triumphs.
“…things that may be mundane development markers to others are milestones and worth celebrating! There’s also what I call ‘the flip side’ — you learn to find the humor amid the challenges. It all comes back to Emanuel. Circumstances may remain difficult. The diagnosis may feel overwhelming. But He is WITH us IN our trouble! He is God With Us!”
If you have questions or would like to learn more about special needs ministry at Trinity, you can find their Facebook group here.
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