Special Needs

Our Experiences with a Special Needs Child in the Church Community

Jenny Perkins is a mom to 4 kids, Zachary, Ethan, Brady & Ainsley, and Student Pastor at Bethany Congregational UCC while studying at Lexington Theological Seminary. She previously taught in schools as a Special Education Teacher. Today, she shares with us from her personal experience with Zachary, her special needs child, and the Church community. Thank you, Jenny, and welcome.

Zachary with his service dog, Buster, on their first day of 8th grade!

My 14-year-old son, Zachary, is a child with a hearing impairment, Asperger’s Syndrome, and very disabling anxiety. He has spent his life as an active member of a community of faith. We have had a variety of experiences throughout his life as Zachary’s needs have changed and as we have been a part of different congregations. I hope to give you some insights as to what has been a blessing for us as well as some areas where I can see needed growth for churches in general.

Throughout his life Zachary has been fortunate to have interacted with many individuals in the faith community who have loved him (and our family) very, very well; well enough to do the sometimes hard work of really getting to know him, well enough to see beyond the obvious disability, and well enough to know how to be welcoming and patient, even when (especially when) things were hard. Just as God has a special heart for the powerless and vulnerable, we have seen that special heart in action through the love and work of those who ministered to Zach in this way. We are all extraordinary grateful for this measure of grace.

Often when children’s ministers or ministry leaders have a child or group of children in their midst with special needs, they might become overwhelmed with the need to create a specific ministry or program to serve these children. The magnitude of starting such a program can be daunting and at times it may not be the intervention needed for the kids. No two special needs children—even those who might share a common diagnosis—are ever exactly the same. While there can be common principles in play, the approach to each child will need to be tailored to the specific needs of that child in the specific moment. This individualized planning might seem daunting on the surface, but in actuality the approach is remarkably simple: treat these children (and their families) with love. This is what makes the difference that matters.

I think the greatest blessings that have had the greatest impact for me have been those individual Sunday school teachers or children’s ministers who would come to me and say “I noticed this __________ was difficult for Zach. Do you know how I might be able to make it easier?” or “I was thinking about trying ______________ with Zach. Do you think that will help?” These communicated such love and commitment…and what parent doesn’t want that for their child?! But there were other blessings too—the various members of the congregation who went out of their way to be present for me as a mom when times were particularly hard, or those who whisked away my other children when Zachary required my sole attention, or quietly supported me in ways that I was too preoccupied to notice in the moment. These were seemingly little things, done with great love, but things that communicated grace and acceptance and mercy in extraordinary—yet simple—ways. Things offered in ways that made all the difference.

So maybe a children’s minister or ministry leader who might feel overwhelmed or unprepared for creating a space and program for children with special needs, just needs to gather up individuals in their congregation who are willing to delve into the life of an exceptional child and their family. They don’t have to have grand experiences or answers…just an open heart and a willingness to meet a child (and their family) where they are. I have never hoped or expected to find ‘experts’ in special education at church. All I ever hoped for is a community of people who will love and accept Zachary as the fearfully and wonderfully made child of God he is.

Zachary has gone through phases where his disabilities have had a greater impact on his daily life and functioning than others. These phases often involve an increase in difficult and disrupting behaviors. Anxiety and depression can cause people to act in very unpleasant ways. In all candor, the church has not always been a place where I felt I could openly discuss these struggles. As we all know, there is much stigma surrounding mental illness. The church should be the first to break down these barriers, and yet our own fears and prejudices often get in the way. Several years ago, when Zachary’s mental illness became severe enough to require hospitalization, there was no mention of it in the public life of the church, as if the topic was not to be openly discussed. I was approached by many in leadership privately, and I was grateful for that support, but the public silence was both deafening and disheartening. Especially since others with more ‘acceptable’ illnesses were put on the prayer list and spoken of with regularity. I understand that we are uncomfortable with mental illness, and that this discomfort leads to our wanting to put our heads in the sand, but that serves no one well; especially not those whose loved ones are afflicted through no fault of their own. The community of faith has been ordained by God to bind up the wounded of all stripes.

This fear causes us to judge. We see a chronically disruptive child in the assembly and immediately want to cast blame—about the same time we wish they would just disappear. Since mental illness is not a possibility we are comfortable entertaining, we diagnose the cause as inadequate discipline, or poor parenting. These thoughts are rooted in ignorance and not in love. Extravagant love, particularly love for the wounded, needs to be at the heart of caring for children like Zachary—and caring for the families in which these children exist.

It’s that simple, and that difficult, all at the same time.

Beginning a Special Needs Ministry

My sweet friend, Whitney Hardy, joins the conversation today. I am so proud of her for following where God called to meet an important need in her church. I’ll just let her tell you her story…

Last year, I embarked on an adventure that I never saw coming. I, along with a good friend, started a ministry. Now this was way out of my wheelhouse- God calls unexpected people to accomplish His will sometimes! I am a mom, a foster parent, and a good, southern, church going girl. But ministry leader? Um, maybe not.

However, when you are called, sometimes you can’t help but go. So began my journey from apprehensive and reluctant “helper” to co-leader of a church ministry.

It started so simply, so sneakily. I was walking to the sanctuary from checking on my youngest daughter in the nursery (helicopter mom to the rescue!) with my friend and we walked past another mom with her precious little boy. He had on noise-cancelling headphones and a harness with a leash and he was on the verge of a meltdown. He has autism, and his mom spent a lot of time walking the halls with him because there was nowhere else for them to go. My friend innocently said to me after we passed, “That is exactly why we need a special needs ministry.” I was intrigued because I had almost no awareness that a special needs ministry was even a thing that churches had. I told her, “And you’re the perfect person to start one!” This is true- she’s a pediatric occupational therapist and she works with special needs kids every day at work. Her husband is even a special education teacher. Obviously she was the perfect candidate. Obviously. And yet, she was as willing to volunteer as I was. Neither of us is a person you’d pick out of a lineup as a natural born leader. Or public speaker. Or ministry starter.

Some time passed after that Sunday, and the idea kept nagging at me. I randomly sent her a text message about it and she, in essence, said, “I’m in if you’re in.” So, for some unknown reason, my unqualified self agreed to help start and lead a ministry. To this day, when someone has to make announcements or lead anything, we have to coin toss over who will have to do it. WE ARE NOT LEADERSHIP MATERIAL, PEOPLE. But God calls who He calls.

We started by just planning and dreaming and shaping our vision. We talked about it, read about it, prayed about it, and pinned every single pin on Pinterest about it. Eventually, we decided we needed to talk to the Shepherds of our church about it to see if they would even go for it before we got in too deep. We set up a meeting with two men who are part of the leadership at our church that deals with the children’s ministry. We went in expecting to pitch our idea, be heard, and then have them get back to us after it had all gone through the proper channels (weeks, months, never?). What we got was these leaders saying, “This sounds in line with the vision and mission of our church, – our motto, after all, is ‘Helping People See Jesus’ – and the need is already here. Let’s pray about it and get started.”

Well, that was way more than we bargained for! What now?!

We decided to prepare ourselves. We went to conferences, we read ALL the books, and we visited other churches who had functioning special needs ministries. When we visited a local church that has a HUGE special needs ministry, we got the courage to finally take the plunge and BEGIN. The minister there told us that we were ready, and it was time to let go of our fear and jump. No more doubting, just trusting and doing. So we did.

That very day we asked the leadership for a room. A room that was near the Children’s Ministry (not off in a corner, not hidden- a room in the midst of the children’s classrooms) that we could use as a classroom, a worship area, a decompression room, and a safe, familiar place for these kids to unwind after a very overstimulating Bible class time. While our dream is for these kids to stay in classrooms with their typically developing peers, we know that sometimes they need a quiet and calm space to get away and reset. Real estate is in high demand at our church- we are not very far from outgrowing our facility- even so, our request was again granted on the spot.

We have intertwined our church mission with starting a special needs ministry. That mission is to make our church a special needs church. This means that not only do we have a space for special needs kids to learn, but we are also building a church culture of acceptance and welcome for these kids. We lead a panel during the Bible class hour of people who are advocates for people with special needs- nurses, advocates for vulnerable children, mothers of children with special needs, siblings of special needs kids. This panel addressed the things they have experienced at churches relating to their loved ones with special needs (good and bad), opportunities to involve yourself in the special needs community and serve them, how to talk with your children about people with special needs and myriad other topics that help to raise awareness and tolerance and acceptance within the church.

We are a fledgling operation, and we by no means have it all figured out, but we heard the call and we responded. Everything that has fallen into place since then is totally God moving through His Church. We have been blessed by this ministry and by the people that it serves. I personally can’t wait to see what God has in store for us!

It is easy for those of us without training in this specific area to feel overwhelmed and unsure of how to meet these families’ needs. Please share in the comments below how you intentionally include those with Special Needs in your ministry.