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.
The Inclusive Church 
well said dear Gillian!
Oh…And as a pastor’s wife and mom of 3 (one with Autism) I hate potlucks too. 🙂
I am so happy to hear that your church is a bit clued in well a bit more than mine.. as a mom of special needs children okay one still is young… who I am going to forever be her external brain for I find they just don’t get it because my daughter looks perfect… I find it frustrating to an extent and the children are often mean to my daughter saying she can’t play with them and such and YES this is at church. Breaks my heart!
I think I am going to bring up the same question at our next church meeting in February how can we better serve families and children with special needs as we have quite a few at our church already.
Great post and well said. As a sibling to someone with special needs and a former pastor’s daughter I can somewhat relate to where you are coming from. Although I don’t attend the church, I greatly appreciate all that my parent’s church does for my brother and those with special needs. It’s a wonderful ministry and they’ve seen the church grow as a result.
I think it’s great that your church family seems willing to start looking into doing more for those with special needs. Have you thought of also maybe providing some disability awareness. I find so often people what to help, but they are not sure how/what’s appropriate and do not understand enough about the disability to be of service to the individual/family. I’ve found that education people goes a long way.
Thank you Aiden’s mom for understanding :).
Morgan, great point. We actually are in contact with Joni & Friends and plan to have them come out to church to do some training.
I will think more about ways to educate our congregation. Thanks for the encouragment!
wonderful article… i have 2 wonderful sons with autism and my husband is a pastor… both boys have aged out of nursery time and we are working on transitioning… it’s hard sometimes to ask for help, because i don’t even know what to do…. totally agree with pot lucks, i just groan when i see them on the calendar… i usually end up giving them their favorite junk food to keep them happy…my oldest likes to get toys and sometimes we just offer him money (luckily he thinks 50 cents is a lot 😉
thanks for sharing
Thank you Gillian for this post. You have put into words the things I am sometimes afraid to say out loud. I love our church & they love & support our son who has autism, but there are still difficulties. Thank you for being so honest. It’s so nice to know that we are not alone in our feelings.
Thanks everyone, for your comments. It’s nice to know I am not alone with these issues too.
As a pastor’s wife and mom of 2 (one with Autism). I hate potlucks too! Glad to know I’m not the only one that feels this way.
Gillian,
I read your post with tears in my eyes. I am a father of three adopted children under 6, all with special needs, and the pastor of a church. (Yes, I put them in that order.) I have been the pastor of my current church for more than 10 years; half of which has involved my children – the oldest is 5. Our church loves the children, but struggles with ministering to them – particularly when one of them melts down, refuses to eat at church outings, or when typical PK expectations are placed on them which they are incapable of meeting. They struggle with how to minister to me and my wife when she can’t make it to activities or Bible studies or misses a mid-week service due to mothering the kids. Sure, they’re kind. They’ve graciously allowed me to keep an office at home so that my wife can work and I can care for the kids while pastoring, but resentment creeps in when I can’t drop everything and attend to what is, of course, a major trauma from their perspective. Thank you for being so candid. Some time ago, I went through the course by Cloud and Townsend, “Boundaries.” It has helped me greatly in this realm. Thanks again for posting this. I think the Church has a long way to go in learning how to properly minister to their pastors and families, and much further in learning how to minister to our special needs children.
Thanks so much Lisa. And David, thank you for sharing your experience. It’s nice to know we are not alone, isn’t it?
As a mother of an 8yo daughter with autism and one of a pastoral partnership, I have had to adjust my expectations on my involvement in ministry. This has been difficult. I have gifts that are not ‘Sunday focused’ so with some adjustment I can serve in those capacities, but ministering with my husband is now limited. Attendance at events is problematic. During after church coffee, I sit at a table with my daughter to minimise stimulation and, like Gillian, watch my husband work the room. Social situations are always tense for me as I need to keep close to my daughter to ensure she doesn’t do something inappropriate to others. I’m not complaining, but as this is the first place I have found people that truly understand the issues for a church leader with an autistic child I’m able to share without judgement. Thanks for The article and thanks for your posts. It is good to know we’re not alone. Does anyone know of an online forum or support group for ministers with children with special needs, that I could join? God bless us all as we face the challenges of parenting an ASD child and serve Him in his church. Fiona
Oh! Healing oil for this wounded heart. I feel blessed by the simple fact that I am not the only pastor’s wife with a special needs child. I don’t know if my boy will ever diagnosed with anything, but my guess is SPD and possibly ADHD. I have had to tell people to not play with him during service. (Shouldn’t that be obvious?) My husband rearranges his service responsibilities to get us through potluck line. I go to church every week and I feel judgement and scorn, because my child cannot be quiet until kids church. I am envious of those children who sit quietly through the whole thing. I have often wondered why I even go. God sees it all.