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.
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.