Friday, October 8, 2010

Why your church doesn't have special needs children

(10/08/12--I am including some updates, as two years have passed since I originally wrote the post.)

About 90% of families with special needs children are thought to be unchurched. (10/08/12--I have tried to track down the source of this oft-cited statistic and have never found it. Nonetheless, I strongly believe that the percentage of families who attend church with their special needs children is much lower than the percentage of families who attend church and have no special needs children.)

Of the 10% who do go to church, I have to wonder how many are getting their needs, and their children's needs, met. Unfortunately, I ask this out of my personal experience.

Our first unpleasant experience in church came shortly after adopting Vera. I had chosen to put her in a Sunday school class with Anna, who is 10 months younger. I was a helper in the class already, Vera obviously didn't know English, and a preschool class with mom seemed like a better idea than a kindergarten class alone. The situation was ideal and Vera enjoyed her time in church.

A couple of weeks prior to promotion Sunday, however, I received a letter in the mail from the long-time kindergarten Sunday school teacher, outlining the rules for her class. I am not exaggerating when I say that she expected total and complete quiet and obedience from her kindergarteners and those who could not comply would not be welcome. Further, acts of disobedience would result in the entire class being penalized by virtue of beans being removed from the class jar, the filling of which (due to good behavior) would result in a class party.

I was gutted. How on earth could Vera live up to those standards? I knew good and well that if she needed to go to the bathroom, ask a question, make a comment, she would do it exactly when it crossed her mind. Thank God! A child in an orphanage often doesn't do those things because their initiative has been taken away from them. Over the months she had been home she had found her voice. We were still training her to use it appropriately, however, and we certainly weren't there yet. Still aren't, sometimes!

I tried to talk to the teacher and was completely rebuffed. Eventually, the children's minister got wind of what was happening and was outraged on our behalf, not to mention on the behalf of all the other kids in the class! Shortly after this happened we left that church (not really because of that, although it didn't help).

The next church we visited was even worse, if possible. It was very small and the impression we received from day 1 was that children were to be extremely well-behaved because those are the only type of children welcome in a true Christian family. On one of our first visits, we were sitting on the next to back row (the only place we felt safe, frankly) and the person on the back row told John to get Vera under control because she was distracting his perfect children. Vera, for reference, was sitting next to John and stroking his hair. Not speaking, not turning around, just playing with his hair.

Vera's teachers, a childless couple, also did not want her in their class. They tried to act like they did, but these people (and the whole church) were quite serious about the children learning every possible fact before they turned 12 and Vera was not doing that and sometimes even required extra help that took away from the smart kids. I'm not kidding. Learning was everything in this church. Putting into practice what they were learning was not even an afterthought. I've never seen anything like it. Not once did anyone (one sweet family was a wonderful exception) think that they were supposed to minister to the least of these. I can't begin to say how many church services I spent walking Vera and Emma around the outside of the church because they were showing signs of restlessness after an hour-long sermon which would have made a wonderful seminary class because the only application ever offered was to study more.

We've had mixed results at our current church. There are actually many children with special needs that attend the church, and the church has both a severely handicapped class and a Special Friends ministry that finds helpers for those children who need them. Nonetheless, within the last year I took Ella to her class where she promptly sat on the floor and refused to color with the other children. Her teachers looked at me and said, "What are we supposed to do with her?" Not even kidding. Gee, I don't know, how about bend down to her level, speak kindly to her and see what happens. (10/08/12--other than that, Ella has been beautifully accepted by the teachers and children, two of whom have personally shouldered the responsibility for Ella's inclusion in the Sunday school. The sweetness of those two girls humbles me greatly.)

I've gone to pick up Emma from her class and watched her say goodbye to every girl in her all-girls class and watched every girl completely ignore her. Not one said goodbye. Not one teacher acted like they should have said goodbye. I guess rude is completely okay if the object of your rudeness is a sweet girl with Down syndrome. (10/08/12--Song and Anna tell me that the situation has completely reversed in middle school. Emma greets and is greeted by everyone. I should have known that her fetching and friendly personality would win out.)

Can you imagine why 90% of families with special needs children are unchurched? Can you imagine the bravery it takes to even show up some weeks? Honestly, when we have a sick child on Sundays we often have our Downsie girls stay home, too, just to reduce the stress of the parent who is taking the well children to church. The stress isn't from taking them to church; they are usually well-behaved. The problem is just not knowing if they will be accepted or even treated kindly.

My hope, my big, pie-in-the-sky hope, is that Christians would remember that we all have eternal souls. We all need a Savior. Our Savior did not just come for those who can beautifully explain the doctrines of grace, who can eloquently express their hope in a risen Savior, who can expound on the doctrine of the Trinity. He came for Vera, Emma and Ella.

I Corinthians 1:26:31~~Brothers, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. He chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, so that no one may boast before him. It is because of him that you are in Christ Jesus, who has become for us wisdom from God—that is, our righteousness, holiness and redemption. Therefore, as it is written: "Let him who boasts boast in the Lord."

Luke 14:12-24~~Then Jesus said to his host, "When you give a luncheon or dinner, do not invite your friends, your brothers or relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous."


Anonymous said...

Jill, This is so beautifully and thoughtfully written that it should be published. I just don't know where. Ignorance is just that--ignorance. Meanness of spirit and discrimination are learned behaviors, in my opinion. I am so sorry that you and your family are witnesses to this type of behavior. One thing we do know is that Vera, Emma, and Ella will not hold on to this behavior...God has given them special grace not to dwell on it. And there are so many people they know who love them wholeheartedly and who will not hesitate to speak on their behalf if needed. Count me among those.


Julia said...

I just ran into this wall this week with Aaron. Home 2 weeks and I have been told that the Christian Homeschooling pre-school class where he is registered might not be the 'best fit' for him - this from one of the pre-school teachers - the other two want him but he has to spend 2 periods with the first teacher in the 5 period day. What do I do with my child for two periods??? I teach there!! She says they are not equipped to handle a disabled child. What?? I teach at that homeschool Co-op and currently have 2 autistic kids, 1 nearly blind disabled child, several socially behind children and very many learning disabled... along with all the perfect ones. I don't dismiss the disabled from my class!! UGH!!

NDMom said...

Wow, Jill, this hits home with me on so many levels!

You would think that church would be the safest, most welcoming place for our kiddos w/Ds....not so!!!

Just a few weeks ago, a mom at our church came up to me before service and said "I just wanted you to know that we can no longer sit by your family in church because your girls are so distacting." WHAT??? Our little muffins are like your little girls, stroking hair, kissing, "singing" off key, but never doing even half the stuff all the "typical" kids around us do. If she needed to move to the other side of the church, just do it. There was no need to tell me that!

We have not been welcome at events or invited to people's houses. We have been members at this church for over 20 years....It makes me sooo sad that it is just easier to stay home.

Thank you for this post....Bella's & Grace's Mama

Ruby's Mom said...

Another excellent post!

Anonymous said...

I am sorry that happened to you. We have had one instance when visiting a church when Carson was young. However; our church that we attend is wonderful to kids with special needs. We have always been welcome. Carson goes in the regular class for his age group, but for children that can't, there is a special friends class where they have one on one attention and have lessons geared for them and how they can learn. I hope you will find a welcoming church very soon- it is heartbreaking to think that anyone would not be, but I do know it happens.


Cheryl Graham said...

There's a group on Facebook promoting acceptance of special needs kids and their families into churches:

A lot of great ideas and understanding there. I wish you luck!

(mom of a child with autism)

Carissa said...

I have moved all over the country and only been in ONE church that had an actual separate ministry just for the families and their kiddos with special needs. That's not to say that they separated those families from the others. Heaven's no! They were included!! They were welcomed! The ministry provided buddies for the kids in Sunday school classes with their peers and the buddies were paired with their own kiddo that they got to know on a personal level. We also got to know what the parents expected out of the class for their children and we learned how to adapt the activities to their needs. It was wonderful!! I was a buddy the whole time we were at that church. I loved it so much. I wish more churches had a ministry like that. Once we started it and they started advertising this ministry specifically (because they learned the same statistic you quoted and felt like they needed to do something about it!), the families flowed in.

Shelley said...

This hits close to home for me too! My family no longer goes to church as a family because of our boys. I go and take my girls every other week...when Robert is off work to stay with the boys. Church has been, without a doubt, the area of our lives that have been the most impacted by the addition of our boys to our family. It's sad. But, it is our reality.

Melanie Hollis said...

sobbing....because I can so relate. We finally gave up and don't go to church anymore. We have three older children we drop off at the door every Sunday morning and Wednesday evening, then my husband and I drive back home with our two little ones who have Down Syndrome. Thanks for sharing...hopefully your post will resound with someone's heart and change will occur. With you, we just keep "faithing". Blessings! Melanie Hollis

Robert Bedford said...

As a father with 3 (soon to be 4) kids w/ds..this makes me sad and angry all at the same time.

Charissa said...

Oh Jill....this makes me so sad. And we've been having this conversation the last few weeks. "Home church" is sounding better and better all the time. Most people just look at us like we are freaks of nature. We don't know where our kids belong. Our homeschool group would not accept our special needs kids in the nursery, during coop time, because 'they weren't qualified' to care for them. What the....??? I didn't realize so many others were experiencing this. :(

Tracey R said...

This breaks my heart. My brother was born with spina bifida and other problems, and we went to church throughout my childhood. However, my mom felt completely isolated. No one else could really understand what it was like to deal with all his therapies and problems. My dad helped start our church, or I don't know we could have gone.

The only other family in the area I knew that had kids with special needs was a family of 12 where 10 of the kids had delays. Their family also started their church.

There were other kids in my brother's class at school, but none of them that I knew of went to church.

That's very sad about that "teaching" church. I wonder what they thought the purpose of teaching was? I love the song our church often sings "It's All About Love". Or the newer one with the chorus that starts "More like falling in love/less something to believe in."

Anonymous said...

And when they do accept your child with special needs they then tell you that they will pray and will heal your child. One can never live up to the expectations of Christians. That is a fact!
Christians are the ones that make me question Jesus not God but Jesus.
I will never ever walk into a church for the rest of my life. My children don't need healing they don't need fixing if God didn’t want my child to be a line and look they way he doesn’t that he wouldn’t’ be here. Almost ALL Christians are bad people they just don't know it yet. I’m a believer and will never refer to myself as a Christian they isolate you

Shari said...

We have a special needs child who is mentally ill. We have to keep him with us because no teacher wants to try and deal with him. He can learn just like the other children, but with more one-on-one support.

Jeannette said...

First time here..brought by another blogger and mother of two Down's daughters (one adopted!)
I am appalled that this happened to you and your family! Your post is beautifully written! I will be back to visit. Educate if possible..acceptance can never come without awareness.

Kelli said...

great post. you should try our church. The LDS church, we (mormons) have so many children its always loud. hehe. Sorry that happened to you and your daughter

schoolmother said...

This just makes me sad. People do not realize that when they treat 'special' kids in un-special ways, they make Jesus look terrible (as shown by some of the responses to your post) Jesus would NEVER act this way and we as Christians are supposed to be reflections of Him. Jesus said "Let the little children come to me and forbid them not, for of such is the kingdom of heaven"

Faith said...

I wish y'all could come to my church!! We are very involved in disability ministry. Three people on our child care team are special ed teachers and one more is student teaching this year. We also have teams that do short term mission trips with Joni and Friends Family Retreats.

There MUST be other churches out there like us some where! I pray that y'all will find a place that you and your family can call home.

Anonymous said...

I'm so very sorry for your experience. I must be honest that in most of the churches we used to go to I wasn't really aware of any special needs kids. Maybe the specific area didn't really have or maybe because these people had the same experience as you had which is just so sad. I must say that one of the churches they had 3 sets of kids that I was aware of all with autism (not sure about Down Syndrome because we weren't there all that long, my oldest was then diagnosed with leukemia and we had to avoid all public places for most of the first part of her treatment). Anyway, the one boy was only ever interested in reading his map book. That's what he did as he sat next to his mum during the service. The other was a little girl that freaked out each time she saw strangers and despite this was always included in Sunday School. The other boy would suddenly jump up, swear, shout and run around. What I noticed though was how all 3 children were accepted. People didn't blink, they didn't stare, they knew and accepted and I suddenly thought to myself, "wow, this was the first church I actually saw special needs kids being part of it".

It is a shame that so often people are not open minded, willing to accept others when they might be different. I pray that soon you will find a place that will be fully accepting.

Lea White
New Zealand

Lu, Poppies Blooming said...

I never realised this. We miss a lot of church due to allergies. I guess I can be thankful for them once more... the times we have gone, I stay out in the hallway or playing somewhere but I only do that because I want her not to be bored. Ok, I do that so I don't get bored as well lol!

My heart is breaking, yet a bit more, over this... I was going to use the Corinthians Scripture for a post I never finished awhile ago. It is one of my favourites. I like the other one as well. The whole post is brilliant. Going to share you on facebook.

:D Love you!!

Anonymous said...

This makes me sad. And then ppl wonder why my family doesn't want to attend church or even be pulled into the whole religion thing. The one place I think special needs children would be accepted and a family given support with open arms, would be church. It really spoils the whole look of religion to those of us that don't necessarily believe. I hope your family finds peace and acceptance.

Tami and Bobby Sisemore Family said...

That was an amazing post and sent me to tears! It is crazy what the world has come too. We have found it hard to find programming for children period and especially preschool children here. And then special needs just another thing to make it harder. Thank you for sharing your heart and your story! :)


Alana said...

Hey Jill! I agree with Kelli!!!! ;)

I love you, and am so sorry for the unfair and uncaring in way your sweet children have been treated. I do have to say that I have seen this in our church once as well. However, it was handled really well, and both "sides" found a solution so that the CHILD's needs were best met. It is so great when leaders actually pray and listen to counsel of the Lord to best meet the needs of the members.

Heather Laurie said...

My husband and I started a ministry to help special needs christians. We are blessed with 5 children with special needs and we have felt first hand exactly what you are talking about. God bless you for opening your heart to your extra special children!
The christian community as a whole needs to do more to encourage, support and minister to families dealing with special needs.
Thank you for your wonderful post.
God bless
Heather Laurie

Jill said...

OH, Jill thank you for sharing your heart! This is so true and it makes me so very sad. The body of Christ can do so much more!

Your children are just beautiful!

Jill from The Glen

Beth Gore said...

So, so true. We're pastors of a small church in Tampa, Florida and we have 6 kids - all with SN, all adopted. If we weren't the pastors, we would have no place to worship either. NONE of my friends (non-local) are attending churches because of this very reason. I'm a motivational/ keynote speaker and THIS is my "favorite" topic to the Church. They just don't "get it" until it's explained to them. I find it ironic that people do Matthew 25 and then are not allowed in church because of it. Thanks for sharing.

Dr. Beth Gore

Arizona mom to eight said...

We stopped attending church when my 2nd son was born, he has Aspergers, and ADHD and could not sit still, hence I was relegated to the "mommy room" where I missed the entire service. Everyone accused me of being a bad mom for not being able to control him, even my grandparents, who were avid churchgoers blamed me for his behavior. It got to the point that it was too adversarial for us, and everyone resented our presence. My poor son tried, but he had some tics that made it hard for him to go unnoticed.

I had assumed it was different now, since that was a while ago, and I am so sad that so many people follow God's calling to adopt and then those children are not welcome in the house of the Lord.

Recovering Noah said...

I just found your blog via FB link... I can so relate! We don't go to church anymore, either. One church we visited actually wanted to put my son with autism in a broom closet. But it's okay, because they said they'd clean it out for him and have someone sit outside the door while the church service was going on.....yep. They also wouldn't let him go in the 3 year old class with his brother b/c he'd be too distracting. Really? Have you seen a class of 3 year olds?

We finally stopped going altogether because it was just too stressful. Our latest church was great with our son with autism, but couldn't really handle our other son with emotional issues and pretty much didn't even believe us when we were struggling with our daughter who has RAD.. because, of course, she was an angel at church.

I hate to say it but our stress levels dropped by about 50% when we stopped going to church. And it's sad... because it shouldn't be that way.

Anonymous said...

Hello! This really struck home also.My daughter, 15 with D/S "was" in the youth group for Sunday school. I finally took her out for it was embarassing to the 4 boys and 1 girl in the group.My daughter is a bit boy crazy and socially does things not appropriate.So, I did this on my own, because I felt she was a distraction to the teaching part. She liked to hug out youth director and I could see that was so uncomfortable to him and I do understand that, but there was a youth who was very well favored and she received hugs all the time and my daughter would see that. My daughter did try to be friendly and say hi and she was stared at or ignored or the hi was said back in such a manner that I would feel quite sad if someone said it that way to me. My daughter cries and says she has no fiends and she does not. I cannot remember the last time she was invited to a birthday party,or just to come over. I do try to take her to youth events, but I stay and help her understand what is going on. I asked the youth director if he could do special needs ciriculum with her or someone else..nothing done. Could there be a buddy for her to help her? No, nothing done. So, she is out of Sunday school and I teach her her Bible lesson.There is such a critical need for this. I suggested this to our Pastor once and he said wouldn't be me(he meant me) teaching it.? Wow that hurt.

Rosie said...

Wow, just when I think again, "there must just be something wrong with me and the way in which I perceive things," I read this. 90% unchurched?? It's no doubt. I tried many different churches, wanting to "plant the seed" for my children, as my mother would have said. The very last church I attended is the last I will EVER attend, because of what the PASTOR's wife said to me. "I don't really know how to say this," she said, "except to just come out and say it. My daughter really doesn't like it when your son tries to talk to her. She's scared of him. Would you please talk to him and ask him to leave her alone?" Mind you, my son and her daughter are the same age... and my son who has CHARGE syndrome, is also completely deaf. Her daughter is the only child in the church who knows sign language. And here is a missed chance for the pastor's daughter to practice KINDNESS for ONE HOUR a week. Whatever... And when I tried to "talk to him" as she suggested, he responded with a few tears and the comment, "God made me wrong." But here's the AMAZING thing. HE continues to go to that church, though he's completely ignored and blamed when things go missing or something is broken. I always vowed I wouldn't be one of those mothers who let's someone else take their children to church, but I simply can't do it any more. His nanny attends there anyway and drives him with her every Sunday. He WANTS to be in God's house. He WANTS to worship. HE is the best Christian I know. The kindest, the most gentle, loving, forgiving, and accepting person I have ever known. Too bad the church-goers don't take a lesson from him. How blessed they would be.

Wendy said...

Hi Jill,
I found your blog because a friend posted about your blog on FB. I have a daughter who has autism, and I can certainly understand what you are going through! It took us many months to find a church that would welcome my daughter, and it was a heartbreaking process. Thankfully, the church we are part of now welcomes and loves her. The situation isn't perfect, but at least I know she is accepted and loved just as she is. Thanks for this heartfelt post.

Leah said...

I'm curious where the 90% came from? Can you post where you got that? We've also had similar problems with church, and frankly, I just gave up putting in the effort of finding a new church.

Heather - said...

I also found your blog via a link on Facebook (go FB! :) ) -- you can repost this blog at and get it out in front of a bunch more eyes... I think you just have to sign up and then you can post a blog to whatever category you want and it shows up in the feed there. Just a thought!

Larkinsmom said...

I would rather have an off the blog conversation about this. Do you have an email or I can leave comments but you not publish them?

I have questions about this post.


Wyatt's Mom said...

This is one of the reasons I am no longer a Christian. The followers show me what the religion is about as much as the scripture, and I cannot in good consciousness be part of something this hateful. I tried as a community leader to host training for churches regionally in special needs ministry, bringing in Amy Rapada and her book. Attendance was $25pp. From 5 counties we got 2 registrants and subsequently couldn't afford to complete the mission - no one cared. I am so sorry for your experiences but need to share that your children's mere existence will teach you so much more about life and the human race than those churches will. Love them for every ounce of their souls. I wouldn't be who I am without my little Wyatt and for that I am eternally thankful.

Anonymous said...

Where do you get your statics for Special needs parents not attending Church?

momtofourgirls.Kari said...

Interesting post! I had no idea there were churches who were not accepting and understanding of our kids. I belong to the Church of Jesus Christ of Latter-Day Saints (Mormon). I work with the kids 18 months to 12 years and their teachers. Not only does our church encourage our kids to participate- we have several resources on the church website that help teachers and parents support our kids. Thank you for sharing this information. Hopefully we can all see the importance of unconditional love and that we are all God's children.

Dr. G. said...

Hi Jill,

Thanks for posting the link to your blog when you were responding to a post on my blog this morning. This should keep our ministry team motivated for the rest of the year.

At the same time, I'm encouraged that God is spontaneously moving through many different churches and multiple ministry organizations in diverse locations to help the church rethink the way they minister to families of kids with disabilities.

I'm Board President of an organization (Key Ministry) that provides free training, consultation and resources to churches looking to more effectively minister to families of kids with "hidden disabilities." We know other like-minded ministries across the country who are also committed to helping churches do a better job of serving, welcoming and including families affected by disabilities. We'd be honored to help any church looking to address this need or connect you with a colleague if their ministry is better positioned to help.

Thanks for bringing this issue to the attention of the church.

Stephen Grcevich, MD
President, Board of Directors
Key Ministry
Twitter: @drgrcevich