I consider it an honor to be a pastor’s wife. It is a privilege to be allowed into people’s lives: their hurt, pain, devastation, joy, celebration, transformation. This Church, this body of Christ – with all of its broken pieces along with its many gifts and talents – is beautiful. But it can also be so ignorant that it pushes away the most vulnerable.
Recently, I was talking to a friend who attends a large and thriving church. She wanted to ask me about a comment her pastor said from the pulpit, because she felt uneasy as soon as it was said.
“It saddens me to see people with disabilities in our church, it is a reminder that we do not have enough faith.”
Now let that sit with you for a minute.
And how would you feel if you came to church and this sign greeted you in the parking lot?
I wish this was the only time when well intentioned church leaders show their ignorance on disability, or their lack of understanding that all life has value and purpose. I wish this was an isolated incident in which someone failed to recognize that we are all flawed, all of us. Because what about the man that carries lust in his heart? Or the woman who is full of bitterness and jealousy? Are those not more damaging to our souls than a physical or intellectual disability? Do we not all need healing from the addictions, selfishness, and pride that we carry?
Perhaps we have forgotten that life is a journey, and the ultimate healing will come as we stand before the Lord, our bodies restored, our brokenness gone. All of us, every single one of us: healed!
My heart breaks as a member of this beautiful Church when I see us failing the most vulnerable. When I see our ignorance crush a people group that needs us to come along their side and offer support, rather than judgment, of what we perceive to be a lack of faith.
So what do we say when someone prays, and prays, and prays for healing? That they don’t have enough faith? That there must be hidden sin in their lives? Isn’t that ultimately what we communicate? And what does that say about God? Doesn’t this attitude foster a perception of an uncaring, detached, judgmental God?
When my daughter was born with Down syndrome, one of my friends confessed she thought I deserved it. She said that I must have done something wrong for God to give me a child with a disability. Sadly, this is the message she had heard from her church, the same church I had attended growing up, the same message I’d heard. Thankfully, at that point in life I had personal experience with children with disabilities. I also had a real, deep relationship with God, the same God that whispered to me, I don’t make mistakes.
So I clung to this verse:
Oh yes, you shaped me first inside, then out;
you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
all the stages of my life were spread out before you,
The days of my life all prepared
before I’d even lived one day.
Psalm 139:13-16 (The Message)
So how does the church receive us, families living with disability?
Here is a sad reality, 80% of families that have a member with a disability do not attend church. Yes, eighty percent!!!
Edited to add: Some of you have asked about the 80% statistic of families and adults impacted with disability that do not regularly attend church. This statistic came from Joni and Friends. A few years back I had a series of phone conversations dreaming with them how to bring disability awareness to our Christian denomination. I wrote down a lot of information, and the 80% came from their statistics (I was shocked to hear that). I searched their website to link it here, but they do not have the statistics posted. They do, however, provide those if requested, and I have requested their disability information and statistic resource.
Someone mentioned that this statistic is also found in The Center for World Missions in CA. I was unable to find that on their website as well.
But here is another way to look at this: 20% of the population has a disability (and this is a true statistic, you can find it in government sites). So at the average church, are 20% of their members people/children with disabilities? No? Where are they? They are certainly not sitting in church!
Why?
There are several reasons, and I will let you hear from other families.
- My child is not welcomed in any of the children’s activities, they said he is too disruptive.
- I took my child to Sunday School class, but they wheeled him to the corner and he sat there until I came to pick him up.
- They said I had to keep my child with me because they had nobody that could help care for her during Children’s church. I tried, but she can be noisy, so an usher asked us to please leave the sanctuary because she was disrupting the service.
- I asked the pastor if we could possibly have someone help my child during Sunday School, they told me they were not responsible to find me babysitters.
- It’s not worth it, my child cannot handle the sensory overload.
- When my child is loud, people stare at us and shake their heads. I even had people tell me that my child needs discipline, my child has autism and they know it! I’m not going back.
- My child is welcomed, but almost very Sunday they call me and I have to go get her from her class. Why bother.
- I tried starting a special needs class for kids, the church leadership did not support me, they said there was no need.
- For 20 years my wife and I took turns going to church. One Sunday she would go and I stayed home with our son, the next one we switched.
Sadly, there are many more stories like these and I often wonder, “Why is it that nobody offered to babysit their child during the service? Or in their home? Nobody thought it would be good for the parents to go to church?”
I am especially astounded when I hear people say, “There is no need for a special needs focus in the church.”
I’m going to switch gears just for a second here.
There is a strong Homeschooling Christian movement, where parents are concerned about the negative influence their children receive attending public school. Yes, it is a scary world out there, and I have considered homeschooling myself. What our children get exposed to is devastating. Thankfully, there are so many Christian churches that fully support the Homeschooling movement, investing time and resources to help this little community.
So isn’t it sad, isn’t it puzzling, that the only classroom where our kids with special needs are fully included is the public school classroom rather than the Sunday School class? Isn’t there something wrong when the public school setting is more accepting, loving, and supportive to kids with disabilities rather than the church?
Take a moment, think about it.
Did you know that 80% of marriages end up in divorce when there is a child with a disability in the family? So shouldn’t the church support these families?
Did you know that special needs families feel isolated? So shouldn’t the church be the place where they feel included?
Did you know that special needs families feel constantly judged? So shouldn’t the church be a place where there is no judgement?
Did you know that people with disabilities are the largest minority in the world? Yes, the largest minority!
Disability ministry is a huge need!!!
Let’s wake up! We are The Church!
Disability is a part of life. It has nothing to do with faith, it has nothing to do with healing. It has everything to do with being human, it has everything to do with being the body of Christ. People with disabilities are part of the Body, and we need them. We need them just as much as they need us. We are all connected in this journey, all of us. All of us!
We have an unreached people group in our own backyard. A people group that has been marginalized by society for too long. It is time that as a Church, we embrace them, we accept them, we celebrate them!
Instead of praying for healing, let’s pray for God to open our hearts and our eyes to the needs of people and children living with disability. Let’s figure out how to do life together. And let’s embrace, forgive, celebrate, accept, and love unconditionally.
And let’s never forget that people/children with disabilities are people first, fearfully and wonderfully made.
***
This beautiful Church has much to learn about disability. We need to create awareness and educate our leaders, and in doing so, it is important that we extend grace and forgiveness. You and I can be a part of the solution. Grace and forgiveness…we all need it.
I also want you to know, there are many, many churches that have amazing ministries to children, families, and adults with disabilities. These churches are trailblazers for many more to come. My next post will provide you with great resources to start a special needs ministry, and connect you with great organizations that help churches achieve just that. If you have any questions, send me an email or leave a comment, I will do my best to address those.
Here is the follow-up post about church and disability with resources.
Keep your stories coming, your voice and your experience matters!
And since sharing this post I have started an organization, Disability Matters: Encouraging Every Church to Embrace Disability. Check out our website and find us on Facebook.
Special Needs Parents, Are You Surviving?
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After reading your examples at the top of your post, I literally became sick to my stomach. It literally sickens me to think that pastors who are charged with leading a flock to become more Christ-like would send such disgusting, uneducated, unloving messages.
My family attends an Episcopal Church. I don’t know if we are the exception or the rule for that denomination, but our Priest sends a consistent message – to spread the message of Christ, love one another. Love one another, love the world, go out and be present with others as they are, where they are. My daughter is accepted. Another boy, more visibly disabled and more severely impacted, is embraced. When it becomes too much for me, someone is there to assure me that my child is loved and accepted and cherished as a child of God. We are safe, we are loved, we are included.
In my mind and in my heart, that is the message of Christ and that is how I want to live and that is how every church should be.
Elise, there are MANY churches doing a fantastic job, and yours is one of them! But this is a real issue, and it needs to be addressed. it is heartbreaking. This is my passion, this is “my call.” These are my people. I have cried so many times listening to people share their experiences with me, my heart breaks, as I know God’s heart breaks too.
Truly heart breaking. I have heard parents being turned away because of their special needs child. I know we were, once because they don’t have enough volunteers. Their church is now dissolved. I am not saying, cursed but God knows better.
One thing for sure, my son brings sunshine & blessings to those he hugs.
Joyce, yes, it is heartbreaking, especially because some families walk into a church hoping for rest and comfort, yet they walk away feeling defeated and crushed.
It is okay to long for a body that is whole and perfect. As a person born with cerebral palsy, I long for that sometimes. I love how the bible encourages us in this: “Therefore do not lose heart. Though outwardly we are wasting away yet inwardly we are being renewed day by day for our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal.”
If all we see when we look at a person with a disability is a body that has yet to be restored, we fail to see the whole picture. Disability comes with real needs that need to be met with love, care, and compassion by the church. Many of these needs will be lifelong.
Disability also forms a person. We would do ourselves a favor as a church if we spent time listening and learning to the ways in which God has formed and transformed people through their experiences.
Jenny, thank you so much for your response. I value what you have to say, and your book will be a resource for so many people!
Nailed it! Thanks Ellen!
What’s bugged me most isn’t church. Yes, they don’t understand, yes, I get the “why is your 12 year old having a tantrum like her 2 year old?” comments. But we also randomly have friends delivering meals to our home, just because they thought of us. And a pastor who asks how he can meet our kids’ needs periodically, not assuming that what worked 3 years ago still does. We’re super blessed at church. But school? That’s another issue. I wanted so much to have my girls go to Christian schools — to have that Biblical teaching, that extra nurturing (one would assume), after their history as foster kids. No luck there. One of our daughters with attachment disorder was asked to leave her preschool because they believed I wasn’t being faithful in my parenting. The local Christian elementary said it would be best if we didn’t send our older daughter with learning disabilities and bipolar disorder, because parents pay money so their kids don’t have to “deal with that kind of disruption.” I wanted to throw up when they said that. But, fortunately, we can raise up our kids knowing Jesus. That on evenings and weekends, when they’re at home with us after days at public school, we’re talking about God and his word, and helping them engage culture with a Christian worldview. At least that takes the resentment edge off…
“But, fortunately, we can raise up our kids knowing Jesus. That on evenings and weekends, when they’re at home with us after days at public school, we’re talking about God and his word, and helping them engage culture with a Christian worldview.” Thank you for this comment Laurie, I hope people read this.
great article, spoke to me personally in so many ways. But the great thing is that our church is in the midst of just starting a stronger special needs ministry. Can’t wait to read the next article with listing resources. thanks for posting this
So great that your church is involved!
What people see as a disability is truly just a difference more than a disability. My experience is that each person with what we call a disability is truly gifted by God in some other aspect. Sometimes the most able of us are truly disabled by our blindness toward the value of others who carry a label.
Yes Daphne, we are all disabled in our own way, we are all broken. Just because some disabilities are more obvious than others, it does not make anyone less of a person. Thanks so much for leaving a comment.
Thank you for this post. As a father of 2 boys of special needs, I couldn’t agree more. It’s refreshing to see the words you wrote which so eloquently explains what my wife and I have felt but were unable to formulate the thoughts effectively.
Peter, thank you for taking the time to leave a comment. I hope that you have either found a church that has embraced your family, or that you can soon get connected to one. There are some great churches out there!
Wonderful post and touched on some of the church struggles we have had over the years. My little boy has complex medical needs, is nonverbal, and uses a wheelchair. When he was younger we were able to attend church more frequently We had been going to a church for several months when I was told if I would just pray harder and have more faith my child would be healed, in other words his disabilities were my fault. I never went back to that church and left feeling that they actually were the ones who had no faith. No faith that God has a perfect plan and does not make mistakes.
Heidi I am so sorry this was your experience. Faith is so much more than believing that God will heal, it is believing and trusting in Him regardless of what comes our way.
Ellen – Thank you for writing this. I do wish however you would name the church you are speaking of in your article. As you’ve stated there are some churches working very well with individuals with special needs and I would not want people to read your article and feel all churches do what the one you described does or that there needs to be a war on the church. I also encourage you to look up http://www.pure-ministries.com as they are working very hard to educate the church. Lastly read the book of John chapter 9 verses 1-5. As Jesus himself explains a person is not disabled because of their parents sin. Any preacher who would state otherwise is wrong. Thank you for being bold and I pray you will continue expressing the importance of the church ministering to families with special needs.
Lindsey, that story is one of my favorites and I share it when I speak on disability. Disability is not a result of sin, but rather God is able to use it for His glory. I am not speaking about one particular church, but rather The Church in general. Every single example here came form different people, from different churches, from different places. It is a sad reality, but the reason why most people with disability do not regularly attend church. I truly believe the reason this is happening is because there is a lack of awareness in the church. I know before I had a child with a disability I was not aware of the need. We were already in ministry, and even had a few kids with disabilities in our youth group. Still, it wasn’t an obvious need until I become one of the parents. And I mention that many churches are doing it right because like you, I don’t want people to look down at the church, I love this Beautiful Church, which is why I am passionate to bring awareness to this issue. Thank you so much for taking the time to leave a comment and share your resource, I will check it out.
I think the majority of churches mean well but are not educated in what to do– especially when the disability is not as “obvious” like autism. I have many friends with a broad spectrum of disabled children and I often have a difficult time balancing treating them with compassion while not seeming condescending. Does that make sense? Churches making statements connecting faith and suffering like you mentioned need the gospel– the Jesus they’re preaching is not the Jesus of the bible. Thank you for this post– I look forward to reading your practical ideas on how to help.
Sam, stayed tuned, lots of great resources. And disability is not easy, it can be challenging. Now imagine, you only deal with the kids for a couple of hours, for these parents, that’s their life. They need a break, they need help, they need support. And I really do believe we will get there 🙂
Thank you for your article its 100^% true.. I was asked several times not to bring my daughters with disabilities back cause they didn’t listen keep shoes on eetc. till I found 2 amazing churches that opened there loving arms to us but sadly I had to move do to medical reason and haven’t found a church where I moved to that accepts us.. and I’ve been hurt so many churches part of me is scared to try a church cause I don’t know how they will react to my girls. I’m a single (divorced) disabled mom raising two disabled daughters .. We worship at home till we can find a church.
Bea, I responded to your other message, sorry it took me a while to get back. I am not just responding to comment but really praying for all of you.
This is so true. I have three kids with special needs and am now divorced. On the Sundays that their dad has them, I have to work–there is no way around that–I need money to support my kids. On the Sundays I have them, I choose not to battle the transitions that I face the other six days. Getting them up, dressed, and breakfast without conflict on a time crunch just isn’t worth the damage it causes to our relationship–not to mention the damage it does to my spirit. My ex will take them to church. At least he does…but he picks them up after I have gotten them up, dressed them, fed them, and gotten them ready for the day. Sometimes I feel defeated because he floats in and looks like the hero. But I know God knows my struggle and that my intentions are truly for His heart and not for show. So I stand above the judgements (at least I try too). Judgement day is for Him and I hope I have done Him right with the choices I make and the reasons why I make them.
I wish I could give you a big hug. I see you, and more important, God sees you, he sees your heart. I will pray for peace and assurance for you. You are not alone!
We don’t go to church often. My daughter is nonverbal, tube fed, in a wheelchair, etc. She is fully aware and knows what is going on around her though. I worry that she will be loud and disruptive during service. We were at a friends church one Sunday awhile back. The pastor knows us, he had visited my Sara and prayed for her in the hospital once before. So he is up there preaching and my daughter was happy and smiling and started laughing every time he spoke. He said “Well it sounds like at least one of you is happy to hear the word of God this morning!” We all laughed. But I think she would be doing that every time.
Tonya, our church is loud 🙂 We have several kids that get vocal during the service, nobody cares. We want them there!
Ellen, Your blog post was referred to many in our congregation by our Pastor – and I am so glad. As I read your post, it occurred to me that the reason God chose your daughter for you and your husband is because you would love her, nurture her, and bring this wonderful message to so many of us who want and need to hear it. It was not a lack of faith, but rather your strong faith that brought her into your life. We try so hard to live in the Theology of Glory so we do not have to experience any pain and suffering in our lives when we are called by Christ to live in the Theology of the Cross and draw hope from the pain and suffering we experience or see in our lives. I can only say that the smile and joy of seeing the picture of your beautiful daughter when I read your post was a highlight for my week! Thank you for sharing your wisdom.
Louise, thank you! And you are absolutely right, there is a great purpose in this. Someday of you have the time, I hope you get to read my story. God called me to this, even before she was born, I just did not recognize what the call was at the time. We have an amazing God.
I’ve experienced all this and much more with my disabled son. The final straw was his younger sister getting made fun of IN FRONT OF STAFF AND MY SON because she had a “retarded brother.” Thankfully he’s not really aware of this kind of stuff, and thought they were laughing with him and everyone was having a good time, bless his heart. We stopped going to church after this incident and after being told that there was “no need” for any kind of special needs classes by the Children’s Ministry director. We were invisible, we were laughingstocks, we were scapegoats.
Several years later we are tentatively attending another church; they have a class for special needs adults but our kiddo didn’t like it. That’s fine, because getting hugs during service every couple of minutes is just fine with me!
I don’t believe in God anymore, and I think the Church is one big machine. I go to church because of my memories of how awesome youth group was and I want my daughter to experience that. And that’s it.
Wendy, I want you to know that my heart aches for you and your family. I am praying for your heart and for your children’s hearts. I do want you to know, that this is not God turning His back on you, these are people, and unfortunately, these were people that did not understand what love, compassion, and acceptance looks like. I wish I could reach out and give you a hug. You are not alone!
Awesome article! As someone with CP who works in disability ministry, I’m glad to have you as a fellow partner. Have you refered this church to someone who can train them? My website and books are full of info that they need!
Tait, these are examples from different people and from different churches. I am really using “The Church” as in the global church. Thank you so much for commenting, and I would love to connect with you more. And for those reading the comments, Tait’s website is taitberge.com
I am a single divorced (my marriage ended casuse my ex could not accept my being disabled and both girls being disabled. I have been rejected from churches cause of my wheelchair (being asked to get out of my elec wheelchair so they can move it to a closet out of the way. because of my children and their autism and melt downs they have had. when they were younger cause they wouldn’t keep shoes on in the nursery. one church told me that if my daughter had one more melt down we would be asked to leave and never comeback we left. the Lord led me to two amazing churches that I was very involved in for several years till we had to move out of state for medical care.. went to one church was made to fee like a out cast cause I was in the wheelchair my special needs daughters were told they had to have long hair and ware dresses and were lectured and told they were not saved if they wore pants and had short hair. moved to a new town and now looking for a church but so afraid to even try any.. been looking on line and cant find any that say they have a special needs class… but was told about one but they only offer either sunday school or church not both.. still looking.
praying God can lead me to a church.. but in the mean time I will continue to worship God and teach them the bible from home. Wish more churches were accepting of special needs families.
Bea, I did get your other message, I have so many I have not had a chance to respond to all of them, and I am taking the time to pray for each one of you. That said, I am praying for you to find the right place. My heart aches for what you’ve gone through. There are some great churches out there. On Friday I will be sharing some resources, Joni and Friends has a great tool where you can find churches in your area that have a special needs ministry.
On the mean time, know that I am praying. Hugs to you and your family.
Houses of worship are exempt from the ADA, too. You can be certain there was lobbying involved in getting that exemption!
I am not sure what you are referring to, but the first thing that came to my mind is the separation of Church and State. Ultimately, what is important is that there is a real lack of awareness of this need, and many churches are willing to be part of the change.
Nah, nothing to do with the first amendment, because it’s not favoring any religion over any other or enforcing anything belief-related. Houses of worship have to be up to code on sturdy floors, sturdy walls, and safe wiring, right? They’re subject to the building code, just like any other building open to the public. Saying they have to put in a ramp when redoing the doorway is no different than saying they have to have a licensed electrician sign off on the work when redoing the wiring.
When the ADA was passed, the religion-based lobbyists formed a coalition lobbying in favor of it passing. I know one of them. Some of the members of the coalition had the house of worship exemption as a sticking point for them to back the bill.
Hi Ellen,
I appreciate the concerns you mentioned and it makes me sad to hear the comments you posted about what families say about the churches they attend. I help run a preschool ministry and am very challenged by students who need specialized attention. We are very sensitive and want to include all children as best we can – everyone needs to hear the gospel message taught each week. But when our programs are run by volunteers who are simply parents and often college students who do not have schooling in education or special needs training, how can we avoid making some of these families feel this way? I often ignore the disruptions caused by kids who are challenged with sitting still for a short lesson. I do the best to keep them involved in the lesson while trying to help the other kids ignore the disruptions so they can hear the Bible message. But there are students who get violent when they don’t want to comply with the directions. I don’t have enough volunteers to be able to assign one directly to those kids to prevent them from hitting others or throwing toys at others or be able to remove them from the other kids when they become violent. I hear from other families that their kids don’t want to come to church because they don’t want to get hurt and I hear from volunteers that they are not willing to help out if those kids continue to misbehave in that way. When a program is run by volunteers and there isn’t funds from the church available to pay a specialist, what can we do to make every child welcome. Fortunately I haven’t refused to let any student in and the kids who do suffer continue to return because the rest of their experience is good enough. Your posting describes a problem, but we know the problem, what is the solution?
On the positive side, we have one very handicapped student in our elementary program whose parents for years had to attend services separately or watch from the lobby at their previous church. We were blessed to have a volunteer step up to be his one on one aid every week to sit by his side in the children’s service to be available when he needs healthcare attention and help him move to the various locations used during service. I’m very happy that God has allowed this family to be blessed in this way so they haven’t felt isolated or unwanted.
Kiersten, you are describing a very real problem, and yes, there are solutions! I wish I could thank every single church volunteer, they do so much. I will not get into options here as I will be sharing some great resources at length on Friday. I would love to talk to you more, but my first thought is that if possible, your church could really benefit from a sensory room. The main thing is that church needs to be a partnership between church leaders and parents, lots of open communication, open hearts, and understanding. Both ways! And even at a young age, it helps when we explain disability to kids, so they understand that some of their friends have different challenges form theirs. Your heart is in the right place, and with the right resources, your children’s ministry will continue to blossom!
Here’s a unique twist on the problem.
Our church provides a program for special-needs children, but we also struggle with parents of a special-needs child who refuse to accept that he can’t function in a mainstream class. Rather than place him in the group tailored to his needs, the parents demand that he be with the regular group (while supervised by an older sibling). It’s always disruptive, thus tarnishing the experience for the rest of the group. And the child does not benefit either.
Even worse, of course, is that this child is the victim of the same “denial” at home, 24/7/365.
Yes, unfortunately, this does happen. So first of all thank you for supporting the family’s wishes, really, thank you. have you asked the parent to come and observe so they can make some suggestions? Perhaps once they see the dynamics, they might consider trying a class designed for their child, or perhaps they will have good ideas. I don’t like the idea of a sibling taking care of the child, it should not be their responsibility. Is there a way to do a one-on-one helper? Okay, now I am just brainstorming, yes, we special needs parents can make it a little more challenging sometimes. 😉
This really spoke to my heart. I am currently writing a book on dealing with life when healing doesn’t happen on this earth. Because it is mainly my story I didn’t think about having a section about people with disabilities. I will be praying about how and what to add along those lines. I appreciate being made aware. God bless you in your struggle.
Susan, Jenny Hill wrote a book about this subject (specific to disability) you can search her name here on the blog, or see the comment she left here. I recommend you read her book! And wishing you the best as you work on your book. I hope to join you soon in the book writing endeavor. 🙂
Oh how true! This spoke volumes to my heart and words that took place of the thoughts in my brain. You see my medically fragile son is almost 21 and I’ve become so hardened to stares and words. I remember all the caring my church did for us when my son was born. But when it came time for pre-school- there suddenly was not room. My son had medical issues and I would take a nurse with him to care for him medically. Even offering to sign waivers of no liability – there was not room for someone like him I was told. Again when we applied for him to attend the “christian” school that his brother attended. Again I was told ‘ we don’t have room for children like him’. You see my son only had medically disabilities, he was cognitively normal and on grade level with his peers in school.
It is so true as we have tried to attend church, the people in front turn and look down our nose at us as my son would cough. Oh if only they knew what a small miracle it was that we got out of the house and to church on time- only to be looked at like leopards. Thanks for your words and bringing attention to this! I assume there are some churches that are open and welcoming- we have had a hard time finding one.
Julie, I am so sorry you had to go through this, but yes, there are some great churches out there. Joni and Friends does a good job at helping people find these churches, and I will be sharing more about this tomorrow when I share the resources.
A few years ago, I was a Sunday School teacher. There was an autistic boy in my class. I taught the Kindergarten class, and although this boy was also in Kindergarten, he was over a head taller than the other children and nearly as tall as me (I’m only 5′). The only time he sat still was during snack time. He would flail, hit, crawl under the table, steal things from the other children, yell, cry…I could get nothing accomplished in our class when he was there. Over and over, I would wish that I knew the answer that would bring some sort of order to the class – where we could learn to handle this boy and also manage to teach class at the same time. His mom would often stay with him, which was often more disruptive as she had a very loud voice and when she would speak to him, nobody else could be heard. For awhile, she wanted him put into the 2 year old class, as she felt that was more his level – but he had the tendency to be violent and the sunday school leaders would not permit that move. They did end up leaving our church and I don’t know where they are attending church now. Although I felt for the family – as a Sunday School teacher with no special training…I was at a loss on how to handle him.
Did I mind him coming to my class? No…and also yes. I felt bad when I was relieved when he would not be there. I felt bad for his parents and just did not ever learn how to walk that tightrope of keeping my class together. What I thought would have worked out best would have been someone who had some sort of training on autistic children and could have had him in a classroom by himself…but that never happened.
I just wanted to point out that it is often a lack of education on the Sunday School teachers that leads to these happenings. We go through seminar after seminar on handling the “tough kids” but none on how to deal with the really tough situations.
I would fully support a special needs Sunday School class – even if it only had one student.
Amy, I think your situation happens often. Most churches run thanks to volunteers, and there is no training for them. It would be helpful if churches invested to provide that type of training, or sought out people that do have the training. It is a learning process, for all of us.
So put the special need child in a class by himself is the solution? Maybe a sound-proof closet or something so nobody else will be bothered?? Ah yes the true spirit of Jesus. When people say stuff like this I can’t help but wonder if they would feel the same way if it were their own child. And is there any wonder why families who have a member with special needs feel isolated?
I posted a link to this article on my facebook and someone from my church asked if I was streamlining the service at home. I did say, well, that is great and all, but still a little isolating–like hey, our church is only good enough for you if you watch the service at home. 🙁 I have a very strong faith and always will…my faith is in Jesus…not so much in humankind.
I have never seen your page before until someone shared this post.
I was pushed away before my children with a list of educational medical and physical differences, was in my womb. They told me it was because I did IVF to have a baby . I was playing God and GOD wants you to deal with your child this way.
I walked away saying thank you and telling myself. Faith is not always church based it is from the heart that was over 15 years ago.
Your words are powerful and true. Thank you for your honesty, your work as pastors wife and a leader of the community.
Kathy, my heart breaks for you. It is God, and only God, that gives life, no matter how that life came about. Wish i could give you a hug.
This article is excellent. My son is autistic and severe ADHD though he is high functioning, he can not make it through even 1 hour at church. My husband and I have had to start attending church separately – one taking our daughter then one bringing our son later. We only make him stay about 20 minutes (seems to be his max) before one of use takes him back home. We haven’t attended church together as a family since before Christmas. Our church is smaller and doesn’t have a special needs program, even though the leadership has been very kind and tried to work with us. It just isn’t an environment that meets his needs. We keep going to church but it feels harder each week and lonelier. I can relate to so much of your article – the comments from the parents, the comments from others in the church, etc. Thank you for writing this and for trying to bring more changes to and more awareness for special needs to the churches.
Kathy, small churches face the problem of not having the people to run these ministries. Hopefully though, someone will volunteer to help you with your son. Thank you for sharing your experience. I have been praying for every person sharing their story, and I have prayed for your family too.
Love to you all. Be blessed and know that God is an amazing God!
http://www.christianpost.com/buzzvine/blind-autistic-boy-brings-church-to-its-feet-singing-i-can-only-imagine-leaves-you-in-tears-of-praise-video-117270/
Thanks for the articles! Don’t forget about some of the great organizations that pioneered this field. They have many resources and international trainings. Friendship.org ministries and SpecialTouch.org. More seminaries are finally addressing this too.
Blessings,
Rev Marvin J Miller D.Min (cand)
Father of daughter with DS
Marvin, my follow-up post is the one that has the resources!
Thank you for this article. I agree that disabilities are ignored by the churches, and I’d like to add another group to your list of who needs to be noticed. I have a chronic illness that leaves me in so much pain and fatigue that I’m unable to attend church the majority of the time. I was in a prominent ministry that I’m having to let go of because of being so sick. Yet every week I’m stuck at home, no one from the church contacts me. No one asks how I’m doing or says they miss me. No one asks if there is anything they can do to help. No pastor comes to visit or bring communion. I’m simply forgotten. If I can manage to show up, then people are supportive and say they’ve missed me and pray for me–but I can only get that encouragement if I’m well enough to attend services.
I shouldn’t say no one ever has contacted me. I think in the last year that I’ve been so much sicker, three people have contacted me to check on me. Three people, total, in a year, after four years of giving hours of my life to the church in ministry.
I’m not bitter. I don’t blame people for forgetting or for not knowing how to help. But I do want to actively encourage the church to support their disabled members, much as you are doing here. I’d like to see the leadership make an effort to find out who in their community is unable to attend but would want to if they could. Knowing that we homebound people exist is the first step. Then I’d like to see them encourage and train the healthier members of the church to know how to reach out. A text message is awesome. A meal or hour of cleaning is awesome. It can be as small or large as people are able to give. But it needs given. Living every single day in physical agony is hard enough to bear without adding isolation and thoughtlessness.
Thanks for understanding and for your message.
Amy, yes, it’s like we make church be just church (a service) and we forget that Church is about relationships, doing life together, caring for one another not only inside the building, but in the every day. Such a true statement. We need real and authentic relationships at church. Thank you so much for mentioning this!
Ellen, this is just so true. My godchildren are special and their mom had to leave – but thankfully found one that would embrace her children. As a pastor, i have been struggling as my special child is letting church members down it seems – i “should get healing or manage better” is the quiet message I sense.
..O.our human nature cues us into condemnation mode (http://jennihh.blogspot.sg/2014/04/i-married-non-believer-is-god-mad-at-me.html)… but our New Life in Christ should be opposed to that. It is Grace, grace, grace.
Well, i have to offer Grace as i receive it from Him. And just let Him provide what my family needs.. thank you.
Jenni, so often it is the criticism from people that don’t understand what our lives are like that really hurts, especially when you are in ministry and people already have high expectations of who you are supposed to be. In our church, one of the first things I told the ladies was that I was a broken person that needed much grace, I make mistakes, I say the wrong things. It actually has allowed a level of vulnerability in our women that I love (There are only 40 people in our church).
I can relate all too well. The thing is I used to be involved and active in this one church. Until they learned I have autism. As soon as they learned that, they used it as an excuse to exclude me and isolate me. They used it as an excuse to abuse me and bully me. They used it as an excuse to not show the grace they talk so much about. They used it as an excuse not to exercise biblical church discipline. And then the missions pastor who was a friend was told I was “too dangerous” for him to continue to be friends with me and he lied about things that happened and spread those lies around to other people. I tried to show them grace and I got abused and bullied. I tried to resolve conflict on a biblical manner and I got abused. And why? Because I have autism. The missions pastor acknowledged I writing that what they had done was wrong, but he did nothing to stop it. He also mistakenly called it an attempt to mainstream me. No it wasn’t. They excluded me. They said it was because of the autism. They treated me as though autism was a sin and. God as though He was a sinner for creating me. They had me under a “care team.” Two thirds of them not only said hurtful things regarding me because of the autism, but they were trying to change who God created me to be. When they couldn’t change me, they isolated me. They then asked me to sign a document agreeing to further abuse and discrimination. They called it an agreement yet I didn’t get any input into what was in it or else it would have been written in such a way that it would have offered greater protection. All I have been praying since then is that someone be willing to help me get a meeting with them to go over it and to see if we can work through conflict, or at least get me a meeting with the missions pastor so I can either have restoration or closure. But no one seems willing to help. They just say I am sorry that happened to you and that’s it.
Susan, I am so sorry this happened to you. If you don’t mind me asking, how old are you?
35 now
Thank you for posting this. This particular blog was posted on our autism facebook group.
For the record I absolutely despise that sign “Soon to be healed.” Really? We are in a fallen world. Healing is in Heaven…but I digress.
I have a young adult son who has autism spectrum disorder. Some of the most awful things that have been said to me as a mom were from Christians in churches I attempted to attend.
One pastor’s wife decided that she should take my son in hand rather than get me from church as I requested and scared him while holding his face and forcing him to look at her. The church was involved with the Growing Kids God’s Way program. She told me that my son, who has autism with well-documented sign of autism being the child does not make eye contact, was not look at her because “he didn’t want to obey.” Grrrrrrrr. And her husband decided that the best way to help me was to hand me a bibliography on spanking. Seriously?
Then there was the I suppose well meaning mom on a message board who told me that she was hoping to have a disabled child (as in born to her) but then her child was born “normal” so God didn’t trust her with such a special child so I must be so special since God ***made*** my son disabled and trusted me with him. I didn’t answer the e-mail.
My son has suffered so much from autism itself and from people in the school system, churches, stores, relatives, I could go on and on. And this mom WANTED her child to be born disabled so SHE could feel PRIVILEDGED or whatever at the price of years and years of her child’s suffering?
Then there was Harvest Bible that steered me into a women’s home group instead of a home group that was married couples because my husband would stay home with my son so I could get some respite…wow…I was still married but yeah…no hubby by my side so I was shoved aside. This was pretty much the rule in all the churches I tried…me…the lone wife attending church and groups…a real pariah…no hubby by my side…no family in a row in the service. I was very involved in church before my son was born. Afterwards, I tried but it was not possible.
Then there was the time that after years, a church staff set up for my son to attend Sunday School and my husband and I could finally attend church together. My husband was layed off after the 9/11 attack because his company’s main customer was in one of the towers. So I had sent in lots of prayer requests about praying for a job. We got a letter from the staff about coming to a meeting about finding our place in the church…you know the shape thing. So we went. This is at the pastor’s house with the finance staff guy. So they said to us, remember how we are taking care of your son during the service and how you can attend together now? We said yes and we are so thankful for this blessing. Then they said to us so now how much can you give the church $$$? My husband had lost his job. My son requires high $$$ therapies…no job. And they are asking us for money because they decided to help us? No one gave us job leads or let us know about job openings in their companies. Not a single call about how are things going etc. even though I was helping with vac bible school and in other ways that I could. Why? We were so quiet and so nice. So Why?
Then there is a whole movement toward pastors grooming flawless families with $$$ to give and ignoring …um…let’s call us high-need families. Shame on us for needing anything or causing them to us resources that could be used to build their empires. They are interested only in people who will build ***their*** ministry/church.
It is a good thing that Jesus keeps looking after us and that His Words have not failed us even though the church and staff have failed us over and over and over again. And in spite of all this my son has grown up to be a very calm, kind, self-controlled, sweet, wouldnt hurt anyone, responsible hardworking young man who believes in Jesus and His Words with the help of Jesus helping our family … but not the church.
I would challenge church staff people to look at their congregations and then look at the national averages for major disabilities and see if they can come up with those percentages in their church. They won’t be able to do it. So then I ask them…where are all those lost sheep and why isn’t any one looking for us?
I am sorry you had to go through this. And thank you so much for sharing, our voices are important, and they need to be heard.
I think you nailed it. After my divorce…I was isolated even more. I felt like the one group I had connection with started to push me out…so I just decided to stop going. I don’t need my three special kids feeling even more judged and set up for failure and low self esteem because they can’t do exactly as the church group expected. sigh. My fellow church goers were nice enough to let me know I could watch the service via my computer at home. People I trusted my weakest moments with. And seriously, they didn’t see that as isolating. It is a hard hard world.
Forgiveness for whom? Only thing that didn’t seem clear….
This may literally be the best thing I’ve ever read on this topic!
Emily, forgiveness both ways, between church and disability community. And thank you! Book proposal is submitted and waiting to hear back from a the agent 🙂
A hearty AMEN to this post!
My son has autism and I too have written about this topic that is being ignored in many faith communities. The more people that speak out against this willful oversight, the more attention it will bring, which will hopefully bring about change!
Good luck to you and your church with the starting of your sensory room! 🙂
Thank you Tonya, we are really excited about it and hopefully we will get it done soon!
Wow. I can’t believe what I am reading! This has been on my heart for such a long time now. I wrote a blogpost about it 3 years ago. The pastor at the church wasn’t really interested. He has since gone on to have a severely disabled son himself. We no longer live in that town, so I don’t know if he has learned from the experience, or whether being the pastor means that the church meets their needs anyway.
I tried to read what I wrote in a small group at our new church last week. I was shut down, and taken to see the pastors, where I was told I was ungrateful for all they had done for my daughter. Here are the 3 posts I wrote. The initial one, the one I wrote after trying to share it with the pastor, and the one I wrote last week.
Please feel free to share if you think they will help in spreading the message. It means so much to me. I have all but given up on Churchianity.
http://just-juniors.blogspot.com.au/2011/07/open-letter-to-church.html
http://just-juniors.blogspot.com.au/2011/09/calling-or-mandate.html
http://just-juniors.blogspot.com.au/2014/05/what-should-church-be-doing-to-reach.html
Carolyn, it is unfortunate that the Church is taking longer to notice, but I do believe that God is moving, and more and more, as we gently educate, people in the Faith community are beginning to see the need. Thank you for doing your part and trying to bring awareness!
Just an update, I received an email from church yesterday saying that in future Samara will only be able to attend Sunday School if she has a full time carer with her.
Honestly I am speechless. This is the email I received.
Hi there Carolyn
How are you all! I understand you have had a busy month or so with moving and travel etc. I hope you have all been keeping well with the number of viruses doing the rounds also.
I just wanted to update you briefly on some changes in Nexus Kids should you be planning to come back to visit Nexus again soon.
In response to our increased general attendance on a Sunday in Kids Church, and therefore needing to respond to the ministry growth with more leaders and team, we have had to review our policy for the children with additional needs who attend on a Sunday. We have a number of families already who this applies to. I wanted to let you know of our change in policy as it does effect Samara’s attendance in Nexus Kids.
Under these new arrangements the family of the child (with additional needs) will be required to provide a 1 on 1 carer / assistant to be present (for the entire service) with the child attending Nexus Kids. A child deemed to fall into this category is one who:
Has additional needs (behavioural, physical, social, health, developmental etc) that require 1 on 1 supervision for their entire time in our program;
Has needs (behavioural, physical, social, health, developmental etc) that require special care, management skills, training, knowledge and capability outside of those skills and capability that our volunteer team are equipped with.
The carer to be supplied by the family has to be either a:
Parent of the child
Full time carer of the child
Blue Carded adult (supplied by the family)
The carer would attend to their child only, and work with the Nexus Kids Team to ensure their child is included in the larger groups teaching and activities.
We want to ensure every child that attends Nexus Kids has a fun and safe experience and we recognise that a supervision strategy and additional needs policy needs to be in place to ensure that can happen.
I am very happy to chat about it if you would like.
Kind regards
RM
Carolyn, I am speechless with you. And they wonder why special needs families are isolated? The place that should embrace us, is the place that pushes us away. Heartbreaking! (Hey, move and come to my church!)
I would love to! But I have already moved countries once and that was hard enough when it was just New Zealand to Australia where we already have the right to live permanently. Would hate to go through the whole visa thing again (we had a huge battle because of our Australian born daughters disability – but that’s a whole other story! )
I love your post! I have a one year old son with Down Syndrome. At my previous church they actually made me believe that I/we didn’t had enough faith and that’s why my late husband passed from cancer just 2 months after my son with Down Syndrome was born. After my late husband passed I kept going anyway, but i felt so judged like I did something very wrong. I was in shock when I learned they were praying to heal my son from Down. I was very confused. I just wished they showed more love instead of praying for healing. I got discouraged and left. I visit another church now, and even though there is a lot they dont understand, they have showed me unconditional love and therefor I am grateful. I was told that my son is the first kid with Down Syndrome that ever visited that church. He is still small now, but I’m looking forward for the future and what I can do so my son don’t feel isolated or left out in church activities. I would love some tips. Greetings from Holland.
I am so sorry for your loss, and for the experiences that you have had. I wish I could sit with you and talk about the pain, and the hurt, and the feelings. I am glad you have found a better place, where they can be a gift for your family, and where your family can be a gift to them, and perhaps even change that church “culture.”
The comments from parents of children with disabilities saddens me. My oldest is autistic and he is welcomed with open arms by the congregation. As all children with or without a disability should be. I get self conscious because I feel like he is making too much noise, or not doing things as the other kids would. But my congregation rolls with his quirks and always find something living and positive to say about him.
What a gift to be where you are! And don’t feel bad, your son is uniquely gifted and created, and they are able to see that, quirks and all (and don’t we all have something that makes us a little different?)
I’m reading this with tears streaming down my face. We are new to our church and community, and feel God brought us here. Everyone has been really nice, but there is not a place for our adult son who has Down Syndrome. When I mentioned to our small group about a class for special needs adults, two people said, “well, it would be SO HARD to find someone to do that.” 🙁
It made me and my family feel even more isolated.
Like I told our small group, we just want what they have…the option to come to church as a family and know that, for 45 minutes or so, our (adult) child is safe, well-cared for, and learning about Jesus.
I just know that life is hard enough, and it would be nice if Church was a refuge for families like mine.
Marty you are exactly right, the kids will grow up, then what? And it is indeed sad to think that it would be hard to find people wanting to do it, it speaks of a lack of understanding of personhood. Have you heard about the 5 stages? Google them, every church needs to go through this training, you’ll love it!
Hi Ellen! Thanks for the great article! I have a son who was diagnosed ADHD, but there seems to be a lot of underlying issues as well. We have been to three churches in his lifetime, we left the first in a mess of politics. The second Church we were regulars at had a great program for physically and mentally disabled people, but for someone on the adhd spectrum, well, it was a bit hit or miss. We found a great support in our adult Sunday school class, but when it came to the worship service we ran into problems. The pastoral staff and board increased the length of the service time to a point where my boys could not sit through the whole service. After asking a couple times for a shorter service (and getting told to just come late) we left. Our current church home has shortish services, but no group in place for my husband and I to fellowship with. I spend Sunday after service times chasing my child to make sure that he behaves. When we have spent time with other families, I find myself doing more apologizing for his behavior then interacting with the other moms. One benefit our church offers is a program to allow members to call a local “mental hospital”.
Thanks again for saying this in a meaningful way. 🙂 (we moms don’t always have time to write this nicely!)
Heather, no church will be perfect as you already know, but the hearts of acceptance sure make a difference!
Thank you so much for this! I cried reading it because it rings so true in many ways. I have a son,, born with Spina Bifida. He uses a wheelchair for mobility, as he is unable to stand and walk like a “typical child”.
When he was little, I heard things like the following while at church. “You must have done something really wrong to have a child like that” “You need to stop being a lazy mother, and teach him to walk the RIGHT way.” “If you pray hard enough, he will be healed”
And then as he has gotten older and joined the kids class. There has been some bullying and teasing. A few of the older kids even told him “Wheelchairs aren’t allowed at church, so why are you here?” After that he’s been afraid to go to church. So we haven’t been able to go much.
I know that that statement was a learned behavior from their parents, but it doesn’t excuse it. It’s so hard, as a parent, to watch your child feel unaccepted.
Oh Star, I am so sorry that you have gone through this, it leaves me speechless. Sending you hugs, that is not a reflection of the heart of Christ.
Thank you so much for this comment! I have shared the article link on my facebook page. It is the ONLY article I have seen on this subject. I am disabled and sometimes get the oh well GOD will heal you. You can be healed the natural way. I DO pray for God’s healing. Yet I also live to be at peace in my situation with thankfulness for what I can do. When someone says these things it is almost like an attack on my position of peace. Like I don’t have faith!
When I was younger, my then husband and I attended a church with friends who had a daughter with cerebal palsy. They had attended the church for years. Yet every Sunday, they had to pick up and carry their daughter up a flight into the church to attend.
Churches should put disability ramps in the front of the building. Not make the less fortunate go around the back to enter, if they have a special entrance all. YET……..
If churches had disability ramps in the front of each and every church welcoming those who could not walk……it is like saying the scriptures…they will do healings….like where Paul raised the dead and lame to walk…..then why is our world filled with so many disabilities? The power of the church is hindered. THIS is prophecy. I do believe in miraculous healings. I once prayed for a lady over her aching knees. She was healed of her color blindness she had since birth. Yet I have my disease not yet healed. God is the author of life.
HE provides reason for every situation. Sickness can be healed..or prayer be a catalyst to healing and we should ALWAYS pray for it and encourage it.
YET……the church has to accept and love the ones with disabilities and strive to let them know God loves them. HE MADE THEM WITH LOVE AS THEY ARE.
Whether they ever receive healing in their life or not….they are HIS.
This message you have shared is SO NEEDED! I was not aware of the statistics of percentage of disabled persons in church. Yet to think of it….yes….20 percent is a generous number. Thank you for sharing this!
Thank you so much for writing this. Our 8 year old daughter who has Rett Syndrome is has a special friend on Sundays so that we can all go to church together. Even having her included in the Sunday school we feel a little isolated. Just reading this I feel less alone. Thank you for putting out there what so many feel.
Hi Ellen, I have only recently found your blog. As mother to three beautiful children with special needs, this particular post resonates with me. I am grateful that our church has been wonderful in trying to provide for our family’s needs. For years there was a rotation of men in our church who took turns watching our oldest special needs son during services while we attended. For the last year, my husband and I have been going to different services because our son lost both his vision and his mobility and quite frankly, it’s too exhausting to try to get him there every Sunday and without his vision (he is deaf also) he is easily agitated because he is unsure of where he is and what’s going on around him. Our middle special needs child passed away several years ago before she was old enough to attend Sunday School. Our youngest special needs (we have 4 typical children also) child is now two years old and goes to church when I go and stays in the nursery, which is more developmentally appropriate for him. The volunteers adore him. Our church is currently working on building a special needs ministry.
While I am grateful for our church and all that they have done for us, we still feel isolated. Outside of church, we have virtually no social life. We are the family that everyone avoids including because “they probably couldn’t come anyway” or “I don’t know what they would do with their son” or “they’re too busy with all their kids.” Because our special kiddos are adopted we hear alot of “oh how nice of you”, ” I couldn’t do that”, “your children are so fortunate that you took them” but most people view us as off limits because we dared to do something hard. And I confess that as result of some of the unbelievable things people have said to us, I have developed a hard edge (I’m working on that). People view us in one of two ways….. they think we are saints or they think we are stupid for adopting 3 children with profound disabilites. In reality, we are just normal people doing what God has called us to do and our children have done more for us than we will ever hope to do for them.
Karol, I hear you! Are you familiar with Key Ministries? They recently did a series about how the church can support adoptive parents, especially those who adopt children with disabilities. it does see the church praises adoption, but when it comes down to it, few parents get tangible help and support. Here is the link to their adoption category, but I think you will really like this! http://drgrcevich.wordpress.com/category/adoption/