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When the Pastor’s Family has a Child with Special Needs

I am honored to feature the following guest post by Gillian Marchenko.  As a pastor’s daughter, I can attest to the fact that there are certain expectations and dynamics that are unique to the family of a church leader.  I love how Gillian provides insight into a pastor’s family that is also impacted by disability.

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The other day someone asked me what the church my husband pastor’s thinks about our two young daughters with Down syndrome. “Oh, they love the girls. We’re very blessed,” I replied right away without hesitation.

“That’s great,” the person replied. “How?”

“Excuse me?” I asked.

How do they love the girls? What does your church do to serve you specifically as a family with kids who have special needs?

It’s easy to assert that people in our church genuinely love our kids. They ask appropriate questions about their therapy regiments and health. If one of our girls is sick, someone shows up at our house with a meal. If I can’t make it to a church event due to a therapy appointment or a doctor visit, everyone understands. Evangeline, our fourth daughter, is adopted fromUkraine. When God called us to adopt, the church rallied around us. They prayed for us, and helped in practical ways, like locating notary publics free of charge, and donated financially to the adoption. When Evangeline finally came home, we had a dedication service at church to welcome her into the fold.

It’s more difficult to answer the second question. “What does your church do to serve you specifically as a family with kids who have special needs?” I have a list of desires and concerns regarding my kids and church that I don’t usually share. I would love for Polly to have a buddy on Sunday mornings to participate in Sunday school, not something she can do without an aid, and not something I can do with her every week and still support my husband and participate in other ministries.

And then there are potlucks. Full disclosure: as a mom to four kids and as a pastor’s wife, I hate potlucks. I struggle to get my daughters with Down syndrome to eat pre-arranged food brought from home while my husband pastoral works the room. I want to talk with people and catch up but I can’t, because I am pulled away by a kid. I worry about what’s next for Polly and Evangeline at church, too. Right now they are both in the nursery on Sundays. When will they move up to Children’s Church? And how will that work?

Our church family is loving and supportive, but I don’t think they serve us specifically as a family with special needs. Here’s why:

1) They don’t know what to do. Polly and Evangeline are the only kids in our congregation with special needs. We are just starting to build a strong children’s ministry in general. The added layer of kids (and adults) who are differently-abled and who may need a little extra assistance isn’t even on peoples’ radars. They aren’t aware of programs and places like this blog that help churches start ministries for individuals with special needs and their families.

2) We don’t ask for help. After ten plus years of ministry, it has been ingrained in me that our job is to serve others. If a couple needs marriage counseling, we give it. If a single mom needs help with her kids, we try to help. If my husband or I know a family in our church is struggling, we meet with them and pray, and seek out tangible ways for our church body to serve them. But when it comes to our family and our kids with special needs, we don’t ask for help. When I think about finding a buddy for Polly I quickly convince myself that our faithful congregants are maxed out with ministry. It’s uncomfortable to suggest a new ministry initiative that primarily benefits my family.

But I can’t expect people to guess that I could use an extra set of hands during potlucks if I haven’t made the need known. I am probably most interested in special needs ministry at church because of my kids but that doesn’t mean others don’t want to participate. I don’t know because I haven’t asked. It is a disservice to the congregation not to bring it up. Even if it seems self-serving, in actuality, it is Christ-serving. It is Jesus’ very heart to care about those around us. Matthew 25:40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

Recently we had our church’s semi-annual business meeting. When it opened up for questions and comments, I timidly raised my hand. “I think we should pray about ways to be more inclusive on Sunday mornings for individuals with special needs.” I wasn’t sure what to expect with my suggestion, but thankfully my comment started a great discussion. Several people even approached me afterward with excitement and ideas about starting a special needs ministry in our church.

If your pastor’s family has a child with special needs, this is my request: Don’t assume they have enough support for their family because they are leaders in the church. I can say from experience that they need help. Be mindful that they may not ask but they still could use it.

If you are a leader (or a congregant) in your church and have a child with special needs: Please, make your needs known. If the church could better minister to your family, share your ideas with your people. Remember, it is not a self-serving request, but rather, a Christ-serving command from scripture. – Gillian Marchenko

Gillian Marchenko is a writer, speaker, and advocate for individuals with special needs.  Her writing has appeared in Mom Sense Magazine, EFCA Today, The Four Cornered Universe, and is forthcoming in Chicago Parent. She is a Chicago Special Needs Parent Examiner for Examiner.com and contributed on-line to Chicago Moms Blog and Grown in My Heart, an adoption network. She is also an administrator on Facebook for the Evangelical Free Church of America Special Needs Network page. Gillian lives in Chicago with her husband Sergei and their daughters Elaina, Zoya, Polly and Evangeline. Connect with Gillian on Facebook or Twitter, check out her website at GillianMarchenko.com, or follow her family blog Pocket Lint.

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afentonlee@churchleaders.com'
Amy Fenton Lee is a writer and speaker focused on helping churches successfully include children with special needs. She is a regular contributor to children’s ministry publications and a variety of other Christian and secular magazines. Amy is a passionate children’s ministry volunteer and the daughter of a church senior pastor. Amy is a frequent speaker at children’s ministry conferences. Amy blogs about special needs inclusion at The Inclusive Church.