DEAR KRISTEN: My church doesn’t welcome my special-needs son

by Kristen Howerton

ask kristen
Hi Kristen,
I have a young son with Down’s Syndrome, almost three years old, and it makes it so hard to go to church, as you can imagine. The church that we attend is the only one that we really enjoy in town, the only one that we align with theologically, but they don’t really make us feel welcome when we bring our child to worship services.
James (our son) doesn’t do well in the all-kids ministry, and the volunteers never know what to do with him, so we bring him into the worship service with us. We are always told when we enter the door that “Children’s ministry is around the corner, you can check him in there!” We politely tell the ushers that we’ll be bringing him with us, and we’re always given a somewhat stern look with mention of the lobby being open for disruptive children during the service. I don’t know what to do. I want to be a part of a church that we enjoy and agree with, but it’s hard to go to church when your child doesn’t feel welcomed.
Do you have any advice on speaking to the leadership of the church about this issue? What is the best way to bring up our concerns?
Thanks
Kristine
Dear Kristine,
I am so sorry to hear that the church that you most enjoy is failing to provide a good children’s ministry experience for your son. Churches can vary greatly in terms of their culture and group norms towards kids, and it sounds like the one you attend is letting you know that they would prefer children to be out of the sanctuary during the service. If this is where you want to attend, you probably need to do some problem-solving with the church to figure out how to make children’s ministry a welcoming place for your son.
I would recommend meeting with the children’s ministry staff to address your concerns. You said that he doesn’t do well and that the volunteers don’t know what to do with him. I’m not sure how old your son is, but I would go in with a list of very specific suggestions. Does he need a shadow or a mentor? A volunteer dedicated to helping him out? Is he over-stimulated or overwhelmed? Would he do better in a different class? You know your son best – think of what they could do to facilitate a good experience for him. I have found that most churches are receptive to helping kids with special needs integrate into their programs, but they may need some guidance from you as to how to implement a good plan.
I’m concerned about your current plan because it’s making you feel like your child isn’t welcomed, when it’s likely that you are breaking some unspoken rules. If your child is the only child in the service, and you’ve been told that the lobby is the alternative, then you may also be sending a message . . . that you don’t respect this particular church’s values of keeping the sanctuary distraction-free.
If you really feel like your son needs to be with you in the service, you might want to find a congregation where this is the norm, instead of trying to push against this church’s culture.
But first, I would try really hard to figure out if the children’s ministry staff can offer you a solution that is a win for everyone involved.
Kristen
Your turn: Do you have any advice for Kristine?

 

20 Responses to “DEAR KRISTEN: My church doesn’t welcome my special-needs son”

  1. Amber February 11, 2014 at 6:13 am #

    I’ve never quite understood the churches which expect children to be quiet during service, or where they aren’t welcome.

  2. JessieLeigh February 11, 2014 at 6:52 am #

    Unfortunately, I don’t have any wonderful suggestions, though Kristen has offered some great advice already. Honestly, stuff like this just makes me sad, though. Of all the churches I’ve ever attended, not a single one has expected us to drop off our babies or children elsewhere. They are ALWAYS with us. We hold them, nurse them, try (and sometimes fail) to keep them quiet and busy. I don’t know if this is a “Catholic thing” or what, but it’s just all I’ve experienced. I certainly know there are many other welcoming churches/denominations, but I always feel really saddened to read about churches not welcoming children (and nursing mamas) with open arms.

  3. Heather February 11, 2014 at 7:34 am #

    As the mother of three special needs children – Aspergers, Trisomy 18 and Autism – we have struggled with ‘what to do with our children in church’ for many years. In our experience, we have found three types of churches: those who are accommodating when we sit down and explain the needs our children have; those whose volunteer resources are already at capacity, who find it difficult to take on the added stresses of our children; and those who, for whatever amazing reason, have actively sought to figure out the best way of not only accommodating our children’s needs but pushing them to grow their faith at the level that each of them is capable of achieving.

    Given that you are already having these issues with your 3-year-old son – and the gap will continue to broaden between him and his peers as he grows – I would recommend that you arrange a meeting with the leadership of your children’s ministry program and possibly the leadership as a whole, and gauge your next steps from there. If they come across as clueless but happy to learn, then I would strongly encourage you to partner with them, and to work together to determine what Christian discipleship in community will look like for your son. If, on the other hand, they come across as resource-stretched (wanting you to volunteer above and beyond the usual expectations of parents, for example, or to pay for a respite worker for your son during services) then, from experience, and as hard as this is to write, knowing the pain this can cause, this is likely not going to be the church for you as a family. In that case I would recommend writing a polite letter to the leadership letting them know the steps you have attempted and the reasons for why you feel you need to leave – a good church needs to know so that they can make the appropriate changes down the road. Then I would recommend asking around the special needs community in your area for recommendations, or calling some of the other congregations in the area and asking what plans they have in place for accommodating the needs of those who have special needs children.

    Either way, both your son and you and your partner are going to need a close-knit group of Christians surrounding you in community to walk the road that will be raising your son. There is no way to raise a child without a village – there is definitely no way to raise a special needs child without a community!

    • Dot B February 12, 2014 at 1:17 pm #

      Absolutely beautifully written, and very good advice. I raised a child with a sensory processing disorder and a son with Dup15q, which is an extra chromosome made up of mirror images of chromosome 15; it causes autistic-like behaviors, seizures, and developmental delay. I also have 2 other children, very bright but with ADHD. Church services were difficult, to say the least. No one ever sat still.

      It does take a community to raise a special needs child. We found a group of close-knit friends within our church (Catholic) who helped us. I also attended a non-denominational church and found help there too.

      Every bit of Heather’s advice is right on. Kristine, I will keep you in prayer that you are able to make the best decision for your family.

  4. Lana Vaughan February 11, 2014 at 8:54 am #

    I understand churches that separate the children services from adult services. I also understand restaurants that are adopting an adult only format and would gladly pay extra to travel on airplanes that are child free zones.

    • Carrie February 11, 2014 at 10:02 pm #

      Lana,
      “Jesus said, ‘Let the little children come to me and do not hinder them, for the kingdom of a Heaven belongs to such as these.’ ” Children are a part of our society and should not have to be separated just to make things more peaceful for the adults. I find the idea that they have to be completely separated–in church, in a restaurant, or on a plane–quite sad.

    • S February 12, 2014 at 11:54 pm #

      I agree

  5. suzannah | the smitten word February 11, 2014 at 9:16 am #

    i wouldn’t respect a church’s value of keeping the sanctuary distraction-free, either. jesus didn’t model a seen-and-not-heard policy with children (or anyone else), and i have to believe there is a middle ground somewhere honoring of all the parties involved. no person in the Body of Christ is merely a distraction.

    i really hope your church is amendable to finding a workable solution. everyone, regardless of age or ability ought to feel welcomed, valued, and included in a worshiping body of believers.

  6. brenda February 11, 2014 at 9:59 am #

    well, I am still in a quandary over this issue with our granddaughter who has Down syndrome. she definitely has a mind of her own and decides what and when she will go along with the program. this is of course disruptive to her classmates and basically unfair. the special needs program at our church is a room with special closures to prevent escapes and with the wide varieties of challenges there is nothing spiritual going on in there. it is a waste and challenging and often frightening experience for her. she attends school so the idea of being in a classroom is not foreign to her. I can see the volunteer teachers and aides frustration at having prepared lessons and activities and suddenly having all that go up in air because one child decides to dominate the session with deciding what she will or will not do like it is not time to go outside for the break when they want to and the assistant has to go out with her. so lets get everyone settled back down while she is gone. oh no everyone did not follow me out and I am all alone – well lets go back inside and see what we can stir up and sit with arms folded refusing to join the class. or walking around talking about what she wants to talk about. and engage in a craft well here comes some real frustration because she will do what she wants and maybe get back to trying to escape.and this behavior is going to work in the sanctuary ???? we talk about spiritual issues at home and read from her childrens bible at home. there is no continuation of things spiritual at her mothers home because she is Down syndrome.

  7. Dawn February 11, 2014 at 10:50 am #

    As a single mom of teen twins who are unique and being a unique person myself, I know it is hard to find a church that welcomes and accepts us. I find that it is difficult to balance accepting people as they are and encouraging them to become all that God intends for them to be. My children teach me so much and one of those lessons has given me an illustration that helps people understand our needs at least a little bit. My kids appear normal, but tying shoes is still difficult for my son and my daughter can get be completely overwhelmed by any one of her senses by things that other people didn’t even register. I have chronic pain so I frequently am advised to “have your children do the housecleaning”, but my children were 12 years old before the brain figured out that the left and right side could both work at the same time and in a coordinated fashion. That means that before this “aha” moment, they couldn’t jump rope- their hands didn’t turn the rope at the same time and with equal speed and tension as the other hand. They couldn’t sweep until their brains figured out how to put both hands on the broom and work together. Their appearance allowed people to conclude that nothing was wrong with them, but until the foundational skill of brain coordination was laid, they couldn’t begin to do things that many of us only need to be shown how to do.
    The math challenged adult may look like she can balance a checkbook, but it doesn’t mean she could ever understand accounting principles. The brilliant architect may look like he should be able to understand what it means to love his neighbor, but he may not have learned how to communicate concern without stalking his neighbor!
    My point is to say that we must stop making assumptions. A church may genuinely want your family to attend there, but have no idea how to help you. A church may be trying to meet the needs of people who are in need of a quiet rest along the river or the youth who need constant stimulation. All of these are real needs, but it is not possible for any group to meet all of these needs. Understand that a group may be missing foundational skills of what a special needs family is going through on a daily basis or they may be in need of a wake up call.
    I know my kids need something different from a church than I do. No church is perfect and no person is perfect, either, but the trick is to communicate what your needs are, what your wishes are, find a workable solution or find a different church.
    I’ll be praying for your family.

  8. Kathryn February 11, 2014 at 12:00 pm #

    There was a post at Sarah Bessey’s about this kinda thing. The comments are good too.
    http://sarahbessey.com/can-feel-like-attend-church-tinies-guest-post-anne-bogel/

  9. linda marie February 11, 2014 at 12:36 pm #

    Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.” I’d check with “leadership” and if the stern look was what they wanted given to my child and me, I’d be finding another church. Church is NOT like going to the theater… and there are more important things about church-life than “theological alignment”…

  10. Melinda February 11, 2014 at 3:50 pm #

    http://www.joniandfriends.org/ This is a great site about making church more accessible for those with disabilities and special needs. Could be a helpful resource! We have refused to attend churches that are not welcoming to children…ALL children.

  11. Susan February 11, 2014 at 4:56 pm #

    Fair disclosure, I am a PCUSA pastor and probably a bit more theologically liberal than many of the readers here, but here’s my opinion FWIW:

    First, spend a week in the children’s ministry with your child, perhaps even without your son. See what happens there. What’s working for him or her and what isn’t. Then go back with specific suggestions about how the program might be modified to work for your child. Could he participate if he had an aide? Could he participate for half the service and then you come get him for the second half?

    Second, talk to the pastor. Children should always, always, always be welcome in worship. Find out what’s going on there. Is the pastor on board with the discouragement from ushers? If not, can he or she work on that? A conversation with lay leadership might be worthwhile. What we’re talking about here is not just a practice but a theology.

    Third, I think we all have seasons in life, and it may be that this church was the right place for you when you didn’t have a son with special needs. There might be other churches that work better for your family right now, even if it means not a perfect alignment with your theology. When I was in high school, our church offered a special Sunday School class for kids with Downs (it was the 90s–full inclusion was not the norm, then). We got dozens of families from all across the theological spectrum that joined us because their kids were included. While that program has been phased out in favor of full inclusion (with Sunday buddies–volunteers that help out in classes with special needs kids, where needed), we still have a huge population–many of them from other denominations. Maybe there is a church near you that does something like this? Are you in community with other parents of special needs kids? Can you ask any of them if they’ve found a particularly welcoming church? Your son deserves a place where he is cherished as a child of God, and not treated as a problem to be solved.

    Fifth, I think this is a wonderful opportunity to start a conversation about welcome in your congregation–not just special needs children but anyone who is different.

    Sixth, here are some resources:

    http://www.amazon.com/The-Special-Needs-Ministry-Handbook/dp/1419665472
    this book is from a more evangelical/non denominational perspective

    http://theinclusivechurch.wordpress.com/2013/05/07/leading-a-special-needs-ministry-book-update/
    This book is from a more mainline church perspective. It includes the buddy model that I referred to earlier

    And the Joni and friends book as well—also from a more evangelical perspective.

    A baptismal promise made on the behalf of children is to educate and nurture and love them—without reservation. Churches can and should make whatever moves they can make to have this happen.

    • Suzannah February 12, 2014 at 8:24 am #

      susan, thank you so much for all of this.

  12. Ashley February 11, 2014 at 4:58 pm #

    I completely understand where you’re coming from, Kristine! I have a 5 year old with Down syndrome. Our church is small, and we have limited programs for kids. My husband and I have figured a few things out and I have a couple tips for you! First, find a helper. For us, it’s a close friend of the family who also attends our church. She is in high school and uses her hours spent with our son as her required community service hours for school. If you don’t have someone like this, reach out to your local high school or community college/university. There are probably many young people who are in need of volunteer hours that would be willing to spend a few hours on a Sunday morning or Wednesday night with your child! Once you find that person, have them spend a few hours with your child. Maybe even go with them and your child to the children’s program. Show and explain to this person what you expect from your child. It may seem like a lot of work, but I feel that it’s WELL worth our efforts to enjoy a peaceful worship service/Bible study/whatever.

    Secondly, I would definitely have a sit-down with children’s ministry leaders. Lay out your child’s specific needs, and then create a plan together. Sounds a little bit like an IEP meeting :) But also take it as an opportunity to get to know these ministry leaders. Ultimately, they will be the ones to have eyes and ears on your child during children’s services.

    Lastly, please don’t be offended by the apparent lack of care/understanding on your church’s part. It’s very, very likely that they just don’t know what to do or how to help you. Before our son came along, I would have also been clueless. Or afraid of stepping on toes, offending the parents, or doing/saying something wrong. Take this opportunity to teach them and open their eyes to what they might be missing out on.

    I hope that helps – good luck to you!

  13. SMGibson February 11, 2014 at 5:30 pm #

    This makes me so sad. Our kids are now 15 and 17. When they were 1 and 3 we started training the oldest to be in the worship services. If he started to get noisy we promptly took him out to discipline and calm him and then returned quietly to the service. If it happened a second time in that service we took him out and sat quietly in an empty classroom to listen to the rest of the sermon. We never took him to the nursery after acting up as we didn’t want to reward bad behavior. Any time he had to be taken out of the service he always had to go and apologize to the pastor afterwards. When our daughter was about 15 months or so she decided one Sunday morning that she wanted to be like big brother and be in the service. So we brought her out and followed the same procedures.

    Several months later we were told by an elder that if our kids started to make the slightest noise we were to remove them immediately. This from an elder who had a young child himself so he should have been more understanding.

    The day we were told this we spent the entire morning service in an empty classroom stunned at how we had been talked to. This was a church we had been at for several years. We were very active in the church, I was in the choir and in charge of the nursery while my husband ran the sound and recording systems and watched several children, without being asked, while I and other parents were at choir practice.

    We asked to meet with the session of the church to express our confusion and, to be honest, anger at the way we had been singled out and spoken to. This was a church where the teens made multiple trips in and out at almost every service.

    In the meeting another elder actually told my husband that if our kids acted up during church we needed to “beat their little a—es more.”

    I ended up starting a childrens church program, with the blessing of the church because it was a way for them to get rid of the little kids. My intention with the program was to gently help parents train their 3 year olds up to kindergarden age to sit through an hour long service.

    This incident started our wondering if this church was where we should be since our children did not seem to be welcome. We left about 2 1/2 years later after another incident involving our son and the first elders child where the elder was angry over his son getting kicked and dragged our son to my husband demanding a spanking and followed my husband into the mens room to make sure it happened. (It turned out that another child had done the kicking).

    It really saddens me to hear that there are still churches who don’t want these precious little ones in the services. How sad is it that the comfort of adults is soo important that little ones aren’t welcome.

    It makes it extra hard for the family that this church is in line with them in everything else. If you stay in this church, work to show them that your son is able to be in the services. It sounded to me like you are respectful of others and would not let your son become disruptive if at all possible. I don’t think you should give in unless you truly feel that putting your son in the childrens program is in his best interest, then it wouldn’t be giving in.

    Stay strong and pray for the leaderships attitudes towards children.

  14. Patricia February 11, 2014 at 7:51 pm #

    My brother has always sat with us in church. Mike is now 47 and has had cerebral palsy since birth. Mike sings the worship songs loudly and out of tune. He thinks all the questions asked in the message should be answered and does. We have never had an issue with our church family save for the occasional stare. I am sorry you child doesn’t feel welcome and I wish you lived by us because that wouldn’t be an issue.

  15. Claire February 11, 2014 at 10:10 pm #

    I think it’s great when churches offer children’s ministries and nurseries, but parents should not be forced to use these resources. Even for children without special needs, there could be many valid reasons for a parent to want their child with them during the service. Certainly, parents should remove their kids if they are being disruptive, but otherwise the children should be welcome. And kids in church certainly aren’t the only potential distraction…

  16. Amy Fenton Lee February 12, 2014 at 8:18 am #

    Kristine (& Kristen),

    Many churches are trying to do a better job of including kids with special needs. Churches that care about remaining relevant certainly need to care — since the rate of autism in boys is now approximately equal to the rate of boys born with red hair.

    I blog about special needs inclusion in the church at http://www.TheInclusiveChurch.com.

    My book for church leaders, Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families, was published last year: http://www.amazon.com/Leading-Special-Needs-Ministry-Practical/dp/0985411686/ref=sr_1_1?ie=UTF8&qid=1392217998&sr=8-1&keywords=leading+a+special+needs+ministry

    I also work with an organization called “Orange” where we train family mininstry leaders for special needs inclusion. Below is more information about the Special Needs Ministry track at the upcoming Orange Conference. I share this to encourage you….slowly but surely, American churches are catching on!

    http://theinclusivechurch.wordpress.com/2013/12/02/orange-conference-2014-special-needs-track/

    (Praying now that your church will soon catch on.)

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