Why do we do what we do at Key Ministry? Why do the gifted and passionate people who came together recently for our Inclusion Fusion Web Summit do what they do?

Doing church is hard for far too many families impacted by disability. The one place where families should feel welcomed and supported all too often isn’t!

As we did with prayer requests, we included an optional space on the Inclusion Fusion registration form for those who wanted to share their stories related to disability and church. Where appropriate, we sought to remove identifying information. We think the stories are an accurate reflection of the progress the church has made…and how far we have yet to go…

Our story is the same as so many others of being asked to leave numerous churches because of our daughters genetic condition of Down syndrome. What these families must come to understand, as we have, is this rejection has nothing to do with God, so they must pray very hard during this time that they are not lead astray. God created all beings. His plan is not to harm them in any way but to prosper them and give them a hope and a future. They must persevere and trust God has provisions in place for them. They must work hard at separating their personal feelings of shame and loneliness and place their focus instead on where belonging is available welcome within the community of God’s people. If they cannot find it in their area, maybe God is calling them to step out in faith and start something new of their own. Their are many groups like this one that can come alongside them and help them raise up an Access Ministry to serve their needs as a family and community. We pray all these things in Jesus’ name, Amen.

Our church recently added free valet parking for people that needed that assistance. It has been a tremendous blessing. They also added the buttons at each door to assist with entering and exiting the building. We have seen slow and steady changes and have tried our best to promote those changes without being obnoxious. The people on staff listen and have made tremendous strides to enable us to worship.

I work with our children’s ministry and have seen more and more children who are diagnosed with Autism or ADD or ADHD and have felt we need to address it. Which in turn has led me to find parents of children with other disabilities.

Recently, our associate pastor and his wife had a son who was born with multiple heart deformities. He has been in the hospital for the first couple months of life, will require lifelong care, and will not likely live to an old age. Suffering and disability can happen to any church at any time. Are church leaders preparing the saints to handle suffering and disability with a biblical foundation? Waiting until it happens is too late.

Please omit identifying info. We recently left our church of 20+years, in part because of difficulty our daughter had in tolerating the worship environment. She has anxiety and sensory processing disorder. Even with hearing protection it was difficult for her to tolerate being in the worship service. Sometimes she would have meltdowns that required one parent to take her out of the church building to our vehicle to help her calm down.

Church did try to make an accommodation – video/audio feed of worship in the foyer where we would stay with her until her Sunday School class started. It wasn’t really helpful to us, difficult to enter into worship in that setting. Even though we spoke with both the head pastor and women’s/children’s pastor about our needs and requested someone to be with her so we could worship and/or someone to pray with us/for us when she was going through a meltdown nothing ever was offered.

Our church utilizes small groups/home groups for fellowship and since our daughter could not tolerate the stimulation and schedule of those environments we progressively felt more isolated and less cared for and able to contribute to the body. We’re at a new church now where she tolerates worship better (smaller congregation, closer to our home) and are hopeful this change will help our whole family be in fellowship in a more comfortable, accepting setting.

While my church does not have a disability ministry per se, our pastor has a special needs son and so do other church members, and these special needs children have grown up among us, going to services and sharing our lives. Also, some my special needs students are made welcome, any time they attend our church service. We are small in number, but I am proud of our love and inclusion of all God’s children.

We were recently invited to church by our son and wife and attended with my adult intellectually disabled daughter. The junior pastor addressed parishioners who gave testimony of the hand of God in their lives. A number of them thanked God that their child who at first they thought would be born with a disability, ultimately was not. It was their testimony that God had essentially spared them and their child from this fate.

I wanted to speak but was unable to when my daughter turned to me and said, “Mom, why dont you tell them about me.” I emailed the junior pastor as I did not want to embarrass my stepson and his family and cause a scene, but did speak with the senior pastor’s wife the second and last time we visited and told her how difficult that day had been.

The pastor missed the opportunity to give a great lesson if he had affirmed Gods goodness in that His grace and blessing would have been with them no matter what the outcome.

We recently did a multi-church food packing with GAiN in our area and invited some folks from Special Olympics to join us and had 19 Special Olympians join us; was a great success. As we plan for our next one in the spring, we are actively looking at more ways to encourage folks/families with special needs to join us with the prayer of 30% or more workers being those with Special Needs praying this could be a door to encouraging folks we need to go beyond our comfortable Christianity.

I am thankful for our church. We have a children’s pastor who is very receptive to ministering to kids with special needs. I have been able to get church members to sit with Hannah so that she is able to be in her junior church classes.

My husband and I had our eyes opened to the need to be proactive for inclusion in the church regarding disabilities when we had our son, Eric. He has Down Syndrome and as he has grown he has presented several different challenges ranging from very low immunity to inability to communicate. Our church is very loving, gracious and walks well with us. However, we want to do more, reach out more and develop in a way that can minister to a broad spectrum of disabilities. I am very much looking forward to spending some time listening in on this conference!

I remember a time when there was a teen sitting in church that it was clear no one wanted to sit near. Week after week his mother sat with him and had a painful look on her face and he just looked angry. He was picking at himself and it, well, grossed people out. I wish I knew then what I know now. I wish I had had the courage to sit by that mom and teen and shake his beautiful hand at the sign of the peace and smile one mom to another to that mom. I see so much more clearly now that I have walked with my loved one through mental illness. We must embrace people with mental illness. Their greatest sadness is loneliness and rejection. Our smile and our hand is a gift we can give very freely.

We went to a church we belonged to on Christmas Eve. It was to be the family service, which in the past was child friendly. This service was not, and one of the members asked us to leave because of the noise our daughter was making. We left and never went back.

We joined a different church. Our daughter was 8 and we wanted her in with the other 8 year old kids for Sunday School The director felt our child she be with the pre-school kids where she’d be less of a distraction. We left there too.

After 3 years of not attending church we gave it another try. We found a church that was warm and welcoming, and accepting of our daughter’s cognitive disability. Finally we felt like we belonged!

We were unable to attend church for many years, as churches were just not prepared or willing to manage my son (who is on the autism spectrum). As a parent, I got tired of being his ‘aide’ in Sunday School every week. Everyone in our home experienced a devastating effect as a result- our spiritual growth really diminished. If someone at the church could have met us at the door to Sunday School with confidence and a smile – it would have made such a huge difference in our lives.

On the positive side, now that my child is older, I am blessed to be able to volunteer as an adult bible study leader for a group of individuals with developmental disabilities. The meeting is the highlight of my week! The participants have such a joy for life and demonstrate a pure and child-like faith. The people in the group are a real inspiration to me. I always leave feeling uplifted and I definitely have the sense that I receive more than I give.

Autism, although not a “disability” does pose certain special needs. I have a 3 year old and I want him to learn about church, fellowship and community. It’s just me and my son that attend church. Running/wandering is an occurrence of autism, and one day my son was found running in circles in the church lobby after he escaped from children church. I found him in the balcony runing up and down the aisles after looking for him for 20 minutes. During the church Easter egg hunt he dashed away after collecting eggs…. so I stay with him in childrens church because they are not staffed nor equipped to deal with his unassuming special need.

From my perspective, the folks with disabilities in our church are much less self- conscious than the rest of us when they worship God. They’re also nicer, kinder, less pretentious people than the rest of us. I thank God for them.

“My son is welcomed and knows he belongs in our church.”

Our church does rEcess and has a “special friends” Sunday school class, but I want to learn how to do more and do it well. Those ministries have been great but haven’t translated into us being a church that embraces disability. We have many adults and kids who don’t really find a fit and so I want to try to expand our disability programs.

Please omit identifying info

When my son was 4, we received a postcard that advertised a local church that was starting a special needs ministry. The next week we went, so excited to get back to church. When we picked up our son we were told to never bring him back. What was his crime? He kept running off during story time instead of sitting. The other children had physical disabilities. I guess my son had the wrong kind of disability for the church.

While I was hurt and sad, my faith is grounded in the Lord. So it did not affect my spiritual life. However, if that happened to a new Christian can you imagine?

A positive ministry is both Rising Above Ministries and Camp Celebrate!! What a blessing these ministries are in our lives!

I have been trying to look for a Church or community who is engaged in a ministry for people with disabilities and their families and I have not found any. However, still looking and planning to form one if there is none here in Jersey City or nearby towns or cities.

Well, we are just starting a disability ministry at our church to guide us to bring the information and people to us that will teach those kids and love then the way they need to be. I registered to help me in getting the curriculum that is the best for them.

I have been impacted in amazing ways serving at the Joni and Friends Family Retreats and to bring my cousin there and see her with her peers in such a different way than at home. It is truly a gift and blessing to be a part of such a wonderful ministry that has become a family in so many ways.

1 Cor 2:6-11 can help us appreciate that though an individual may not show appropriate display of responsiveness to our Christian care giving, that God -nevertheless- can be working deeply in that person’s life…beyond what we can notice.

I am most privileged when working with those who are mentally challenged when some of them talk about faith in God. Though their words may be jumbled, or their appearance disheveled, there is something about their heart being in the right place as they talk.

My son had brain surgery in 2013 at 5 years old. At the time I was heavily involved serving in the music and drama ministry and attended women’s bible study. The week before my son’s surgery I tried to keep it together but understandably was a bit of a mess. Toward the end of our women’s bible study one of the woman’s leaders came to my table to whisper to me that they were going to pray for me but they were not going to bring me to the front because “well other women here have prayer needs in their lives we need to be mindful of and we don’t want anyone feeling you are getting special treatment”. Meanwhile the last two years this church and women leaders have showered “special treatment ” on a family of a boy with cancer pulling every resource, using their contacts to get the word out and give support.

Now I believe with all of my heart the church should absolutely do what they can to support and love on this cancer family. What I see though is that if your loved one has a chronic (non terminal) condition or disability it is treated as “the norm” or “they don’t need support they are used to dealing with their family members issue”. I am so tired of the ol’ “We’ll pray for you.”… I don’t even believe it anymore. I love my church but I think it is a big hole in most churches to not recognize and seek to rectify the gap in reaching out to special needs families. More than anything we want to be understood, and we want to fit in and be included. Setting up individuals to “babysit” a special needs person in a separate room on Sunday morning is not a ministry, it is an accommodation at best. It’s not just the parents that need the relationship and love of Jesus.

Engage these individuals; find their personality, light up their world and love on them. As a parent raising two special needs kids my husband and I want to change that.

As a leader in our local disability ministry REACH (Reaching Every Ability for Christ) I have been humbled by the faith of a child I see in those we serve. While we approach the throne of God with our minds those I serve approach with their heart first. I have learned to set aside all my head knowledge and approach God with the heart of a child.

I am just so grateful to one of my heroes, Joni Eareckson Tada, and Through the Roof ministry training conferences for providing a framework for building a special needs ministry. Training through the Key Ministry website and other websites helped tremendously in understanding what to do and why. Our children’s ministry leader Cindy Morris helped in promoting the importance of having volunteer Buddies and training. It takes lots of perseverance and love and education to build disability awareness. Thank you!

We have been foster parents to a young boy with severe autism for 6 months now, and the journey has been so eye opening. We are members of a church with more than 600 regular attendees and have become aware of the difficulties parents of children with disabilities face at church each Sunday.

God has richly blessed my husband and I by allowing us to be active despite our disabilities. I am a wheelchair user who is blind and I’ve been allowed to lead in several areas, prayer group worship team, my husband born with no arms and 1 leg is taking his 8th trip to Haiti in January and has also taught 3 year-olds. It is possible to be included and be disabled.

Our disability ministry at our church has been a true blessing from the Lord – we have numerous stories that maybe we can share when I have more time to write them down. Our website captures some of our Praises to the Lord.

Often, churches say, “if you just have more faith, then you can stop being depressed (or facing other mental illness).” Unfortunately, that pushes us away further. We have biochemical, hormonal imbalances in our brains, and without proper treatment, we are not likely to get better. God made people smart enough to be doctors, pharmacists and medical researchers.

I attended church regularly and was a member of my church. I was also a leader of a well-known children’s outreach ministry. We adopted our boy with Down Syndrome as an answer to a calling from the Lord. We have five children- three adopted and two who have special needs. Many in my church prayed for this child, as they knew we were called.

When my child was at an age to attend the children’s ministry I questioned the director if it was OK for him to attend with children slightly younger than himself. He asked me if my son was potty trained. He was 5 at the time and almost but not quite completely trained. The leader of his age group had already agreed to take him if the director agreed.

I was told that because he was not trained he could not attend. I was stunned and utterly devastated. I let this stew for a while which is wrong in and of itself. I finally approached my pastor and questioned him with the logic that “what do you do if a child with Spina Bifida walks through the door.” Would you tell that child he cannot attend because he is not potty trained? This is an outreach ministry and we are not ministering to our own children.

He agreed that we should think outside the box and told me he would speak with the director and get back to me. It never happened. If the church cannot minister to its own we are in a very sad state. I have been greatly disillusioned and have found out through the years this is not uncommon in churches.

Many people did not believe I was ill. They just thought I was crazy or a whiner. A Christian doctor from my church also told me for years that my issues we’re all because I was depressed. He never referred me out. I had to find people on my own with some same symptoms to get medical help. Most people in church do not want to know in my past. Now that we moved from a small town to a metro area, we are in a better church where people seem to have compassion & are willing to pray instead of whispering about you. I wish ministries could be established to we could find people to help us within the church even if we had to pay them.

I Corinthians 12:12-13, 22

“The body is a unit, though it is made up of many parts and though all its parts are many, they form one body. So it is with Christ, For we were all baptized by one Spirit into one body…On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor.”

A turning point came during the weeks leading up to Samantha’s Confirmation. Not only did we need to be able to make it through an extra-long Mass, but we were not even going to be holding Confirmation at our home church. Yikes!

To prepare for the Confirmation Mass, I took Samantha and her brother to the different church one Sunday, the memories and anxiety of past experiences flooding back as if it were yesterday. How would people respond to her is she had an outburst? Would we be asked to leave? Was this just a crazy idea?

As it turned out, I needn’t have worried at all. Unless you knew her, you couldn’t have picked Samantha out of the congregation as a person who has a disability of any kind. She smiled, she stood and sat when appropriate and listened to the music and the pastor’s words intently. I am sure that this was not just the work of many years of preparation, but the work of the Holy Spirit, encouraging us as we prepared for Confirmation.

Back at our home church, I began to routinely give Samantha the opportunity to sit in the sanctuary, usually giving her the choice to go in or stay in the Great Hall. Although she still sometimes chooses to sit outside the sanctuary, she more often than not decides to join the congregation, our congregation, our church family.

Over the past eight years I have written many times about my daughter and our experience trying to find a place for her in the church. Sometimes encouraging, other times, difficult to read, but all stories relevant to the bigger issue of inclusion of persons with special needs into faith communities.

This particular story, a summary of the first eight years of our journey, will hopefully serve as an encouragement to those just beginning their journey as special needs parents looking to include their children, those wonderful, special children, into their own faith community. I dedicate it to all those parents out there struggling to figure out how to make worship work for their child. I am also hopeful, as our country embraces a wave of efforts for inclusion through a strong faith and disabilities movement, that their journey will be less lengthy but just as meaningful.

Our church has worked it out for our son to have a Sunday school class during worship. Worship was too much for him. There is only one service so people sacrifice to do this. It is a gift for our family.

Our daughter’s church began special needs Sunday morning class. I work individually with parents and children and teens on the spectrum- no special classes.

Joni and Friends has been a major blessing to my family and God has used JAF at my church to expand disability ministry in our area. I am thankful for a church that is receptive to and supportive of disability ministry.

I have founded a Christian organization and authored a book for parents raising a child with social, emotional or behavioral disabilities… see perseveringparent.com. I would love to share my resources with those at Key Ministry…the book is designed for use in Christian support groups for parents.

Our intellectually disabled son had served for several years as an usher in Bethany Church/Wyckoff. When we were asked to go to a new facility in Wanaque, we had concerns, but he has adjusted very well. The ushers in Wanaque serve communion and he has served well. The ushers pray for those going to elective surgery, he has enjoyed the experience. It was my privilege, to see him praying over me before knee surgery in March. I know part of his ability has come through Ability Tree and Joe Butler. The greatest Glory goes to Our Lord!! (You can use the story, if you need to; I know John would be honored).

Without all the disability advocacy and ministry opportunities I have been given through out my lifetime I never would have become First Runner Up Ms. Wheelchair California 2014 on February 1, 2014. Everything I know about disability advocacy I learned from my friend and mentor, Joni Eareckson Tada with my sleeves rolled up!

I am interested in helping our church become better aware of the needs of working with families who experience a disability.

In the past year two families placed membership and one mother was baptized.

Our church has welcomed our son, and the anxiety/autism with open arms. They have included him with allowing him to serve on the middle school tech team, as well as in other ways. We had not been in church for several years because of bullying that occurred at church and created significant church anxiety. Now, if we miss church, he fusses at us!

Antoinette was a young lady who attended church at Good News Assembly of God in Ft. Smith Arkansas in the early 90’s. She had spina bifida. She was a remarkable young lady. She was always the highest fund raising seller of items in the youth department. She would tell the pastor that she would run over their feet with her wheelchair to make them listen to her if that was necessary.

As a new parent of a child with special needs (he just turned 2), I have been blown away by the lack of attention that our local churches give to these families. Our church wants to change that in our community and be a lifeline to these families.

We are very blessed to be part of a caring church that we joined 6 yrs. ago. I generally manage to attend the morning service & our pm. service can be accessed via Skype on computer/via telephone (for those without internet.) Yesterday I joined both services from my bed as I was too unwell to attend, but with the PowerPoint of the service in front of me I was fully included. (I have the PowerPoints on my tablet in church each week too with readings, singings, everything on it.)

My family and I started and ran a disability ministry for children between 2009 and 2013 at our former church. We always had difficulty recruiting volunteers to serve and in 2012 we (my husband, myself, my mom and my sister) did it alone until we got burned out and resigned in 2013 (our daughter was also having major surgery with a long recovery so we resigned due to burn out and putting all our attention on her). That church has still yet to place anyone in leadership so their disability ministry has shut down indefinitely.

Since then our daughter has had a lot more serious issues with her health and traveling half an hour to that church was not working as our daughter would get sick and we’d have to leave or never get out of the house in the first place. It kept us from attending in person for months. After much prayer we felt it was time to find another church much closer to where we live so getting there and staying there would be more likely. We did find a new church and though they do not have anything specific ministry wise for people living with disabilities they have been most welcoming and helpful to our daughter and us. Right now due to highly sensitive respiratory issues our daughter needs to refrain from participating in large group activities like in the children’s ministry so she stays with us. However, everyone there, especially the pastors, have been most accepting and welcoming never making us feel weird or anything if our daughter vocalizes, needs suction or needs a private room to change her diaper.

Our daughter has been hospitalized several times since we have joined this church and they have been as caring and concerned (even bringing us meals for a week after we get home) just like any other member of the congregation. The big bonus for me regarding this church we attend now is that they stream their services live online so when our daughter cannot get out of the house on bad days we can still join OUR congregation. That’s important to us. I’m sharing because this has proven to me that sometimes a church just gets being the hands and feet of Jesus from the get go and a ministry for people living with disabilities doesn’t have to be present to meet the needs of a family affected by special needs. Thank you!

I have been blessed for the past 7, going on 8, years to be the director of the disability ministry at our church (The Special Gifts Ministry). Over the years my family and I have had the joy of seeing God grow and use this ministry in ways we could not have imagined in our wildest dreams! He continues to amaze us daily with His leadership and our continuing to flourish and be a beacon for Christ in our Disability community!

Our church’s special needs ministry made it possible for me, as a single mom, to attend and continue to develop my faith. It also helped my daughter feel connected to her helper and that someone else cared about her. Bless those who are called to serve in this important ministry.

Too painful at the moment…

As someone with a hearing processing disorder (and probably on the autism spectrum), it is very difficult for me to understand speech when there are many other noises happening simultaneously, as tends to happen in large crowds. This creates a great deal of social anxiety for me. I am also hypersensitive to sound, making loud church music uncomfortable. Also, our teen-aged adopted child has a hearing impairment (possibly linked to Fetal Alcohol Syndrome) that makes it hard for him to understand someone who is speaking to him in a noisy environment. He tends to nod frequently even though he has no idea what the other person is saying. We therefore select where we sit in an auditorium based on the level of noise/music, even though my husband enjoys worship more when sit up front. When we are visitors to a church, it would be wonderful to know ahead of time which seating section would be best for us, and even better if there were some sound-absorbing materials or structures in that seating area.

Praise God for the longevity of our special needs ministry amidst challenges and fearful minds…..

My son’s disability caused him to be kicked out of Sunday School soon after diagnosis because the church feared his behavior may cause a “gross neglect” incidence lawsuit should he turn violent. This ALMOST caused me to leave the church where I’d belonged all my life and had taught Sunday School for 20+ years! They certainly didn’t understand his disability, but neither did I at the time. I kept him with me for the next year during services until his psychologist who also attended our church attended a meeting on his behalf with the administration to calm their concerns.

When our 2 year old son with autism turned 3, he “graduated” to the 3-4’s Sunday school class at our church.

The teachers were very strict about how the class was ordered, which included having all children (about 5-7 kids with 2 teachers) do every activity together at the same time at the same place in the classroom as they moved around the room for each activity. But our son wanted to sit on the other side of the room and do puzzles the whole time, completely disengaged. They brought in a 3rd teacher just to sit with him and attempt to engage him, but to no avail. I was told that, “(Our son) can’t learn like that. If he won’t participate with the other children, then he won’t be allowed to stay in the class.” I tried telling them that he just had autism; he wasn’t deaf! Just because it didn’t appear like he was paying attention didn’t mean he couldn’t hear, and it CERTAINLY didn’t mean he wasn’t learning!! What’s worse was that the teacher was the pastor’s wife who told me those very words.

They kicked him out of the Sunday school class and sent him back to the 1-2’s class, where he knocked down the toddlers and pushed them off the large gym mats he wanted to be on. He was sent back to the 3-4’s class (by the 1-2’s teachers, and at my insistence) where I paid for our therapist (and close friend) to come in and spend the hour with the teachers during Sunday school to help them understand our son better and how to modify the class so he could participate more. But they refused to budge and made me out to be some kind of wacko mother to our therapist who was trying to “get her way” and did not respect the Sunday school teachers’ methods. We really had no other choice than to leave and find a different church that would be remotely willing to accept our son and actually WANT him to be there. They made it quite clear that our son was NOT welcome because he simply did not fit the mold. It was incredibly angering and it made me grieve my son’s disability all over again – not because there was anything “wrong” with him, but because I saw for the first time how difficult our life would be, if all people treated my son the way the people in this church treated him. I thought church was supposed to be a safe place for us to come and take refuge. We had served faithfully at this church and were utterly shocked to feel such betrayal.

Now, my husband is our worship and family ministries pastor at our current church (in a different state) where our Sunday school teachers do everything they can to welcome our now 9 year old son and help him participate to his fullest potential where he now thrives. He recently accepted Christ and was just baptized this past weekend. And they said he “couldn’t learn.”

Since I am on a church staff, our daughter started out in the church nursery. As she has gotten older, the nursery coordinator and children’s director figured out ways to include our daughter with the other children. She has multiple disabilities, is globally delayed, and is often overstimulated by the activities. Volunteers help her get around as well as maneuver her equipment around our inaccessible building. This has been a huge blessing to us, and we would like to figure out how to minister to the other families in our community.

Share your story in the “Comments” section below!

Most recently updated November 17, 2014

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Key Ministry is pleased to invite you to check out our new website. Over 180 downloadable resources are available to pastors, church staff and volunteers seeking to serve kids with disabilities and their families, including all Inclusion Fusion presentations from our first two Web Summits are available with FREE registration. Check out keyministry.org today and share the link with others interested in welcoming kids with disabilities and their families at church.