I have started and deleted and restarted and deleted this blog several times. I wanted to do a follow-up on Autism and the Church and talk about my church’s efforts to begin a special-needs ministry, but I knew revisiting my story would be hard, because living it has been hard. At first I tried to just tell it like it is, but it starting turning negative and depressing. Then I thought of this little skit that was so funny in my imagination but when I wrote it down it only came out pious and a little disturbing. Bleccch.
So I figure that instead of telling you the whole story, I would just tell you briefly what I have learned.
It’s no secret that people can really let you down. Even people in your very own church. I think it hurts the most when you know that those people are probably really good people, but there is just something about autism and special needs that either really scares them or really intimidates them. When people let me down, I have this tendency to internalize it: “They don’t care about me,” or, worse, “They don’t care about my son.” But you know what? That is a mistake.
It’s not about me. It’s about them. It’s a huge mistake for me to allow myself to 
believe that their hesitations/procrastinations/fears/shortcomings have anything to do with me personally. And it’s not up to me to try to get people to take action. My church has seen me. They know me. They know my trials, and they know my needs. They also know that these trials and needs are not unique and that there are many more families out there just like mine. Whether they act on those needs is not up to me; it is an issue between them and God. They are accountable to HIM, not to me. It’s not my battle, it’s His.
After I wrote the original blog, I heard from a lot of people with horror stories about how they and their special needs children were treated in church. But I heard far more stories about churches that were aware of this growing need and taking action and DOING something about it. Many churches are implementing special-needs programs and, in doing so, ensuring a greater likelihood that the people that they serve are being spiritually fed — ALL of the people. They have been given responsibility over a flock and they have seen that some members of the flock are a little more challenging, and they have stepped up to the plate and met those challenges. I know that they will be rewarded for their obedience to what has been commissioned to them.
When we, as special-needs parents, are looking for a house of worship, we need to be keenly aware that there are some churches who just aren’t able to meet our needs 
— for WHATEVER reason. If you bring your child to a church, and you see dirty looks being shot between ministry workers, if you see fear in someone’s eyes, or hesitation, or if they just don’t seem prepared to you, turn around right then and walk out. And don’t do like I do and internalize the situation. Don’t let yourself feel like dirt. It’s not our issue; it’s their issue.
Our kids deserve to be loved, valued, and ministered to just as much as anyone else’s kid. They deserve to be shown Christ-like love by both staff and the other members of that church. If a church is ignoring/neglecting special needs for whatever reason, it is a poison in that church; attitudes like apathy and fear are contagious. Instead of teaching the kids in that ministry how to treat and value those with special needs, they are instead teaching those kids how to ignore, mistreat, or even fear those with special needs. Kids learn so much by the examples that adults set for them, and we need to be cautious about the adults that have been charged with being their examples.
In December I began taking my son to a church with an established Special-Needs Ministry. From the moment we first walked in the door we felt that they truly welcome him, value him, and are dedicated to serving him. He LOVES it. He is so excited to go to church on Sundays. And we are so excited to take him. We found a place where he belongs. I get teary-eyed just thinking about it.
I pray one day they will ALL be that way.
Love,
~ B.K.
For more blogs by B.K., please click here.
Pingback: I F*****G Hate Cancer | Jennifer Margulis
I just found this blog now, so I’m not sure if it is still relevant. However, is there a way your son can attend church with you, rather than going off with the other kids? At our church, we all do Mass as a family, hubby, myself and our 4 kids (ranging from 2.5 years to 14 years). If we attend 9.30am Mass, the younger kids go off to the chapel for about 15-20 minutes for a story and a little colouring. They are then bought back to us for communion and the remainder of Mass. I can’t imagine not attending church as a family. On the way to Mass we discuss the subject of the Mass along with what we might pray for, and after Mass, we discuss what the Mass was about, what we each got out of the Parish Priests homily and the 2 readings. It’s lovely. My son had HF autism, however by the Grace of God, has improved so much, he’s actually looking at joining our Church Youth Band as the drummer :-). So in the way of music, we have music, which is beautiful, but they are generally hymns and beautiful songs. And no light shows. I’m not sure what light shows are for in church, but we have quite dim lights, and a very serene setting. My HFA son feels very relaxed (if a bit fidgety at times) during Mass, but loves it. He has often told me he feels ‘much better’ afterwards. I know it is the Lord doing his work 🙂
I know in our youth choir we have a few special needs kids. And just recently, one of the girls from our school (joined with the church parish) was asked to sing at the end of year, year 6 farewell mass. She comes from a broken family, single mum with many issues, and it was realised that this family just needed to ‘fit in’ somewhere. Needless to say, the little girl is joining the kids choir, and the young mum is looking at joining the youth and young adults choir. Needless to say, church should definitely be there for everyone, and most importantly to those who need her the most. I hope you find what you are looking for, for your little boy – it makes a world of difference when special needs kids feel comfortable and a part of something special
Sadly, I feel that some of the time, it may have nothing to do with real feelings like fear or uncertainty, it’s more that it’s just inconvenient for them.
Just yesterday I was thinking about your original post on this topic. I was nervous throughout the entire service because the usual volunteers weren’t in my son’s Sunday School room. I was certain that I would be paged at any moment, and my mind began to wander to what it would be like to have him in the adult service with me. Josiah is anything but a quiet child. He scripts movies like nobody’s business. This doesn’t bother or distract me, but I was thinking about how many dirty looks I would receive because of his behavior. None of this ended up happening and Josiah had a great day in his classroom, but my heart was struck with the fact that church is not supposed to be a place where we sit silently and solemnly. It is a house of worship for ALL to come in, and the box of what we view church to be needs to be done away with. I do not want to be disrespectful of others, but I also want my son to have the opportunity to worship how he wants and experience church community. This is new territory for many churches, and even more for children’s ministries. Let’s continue breaking ground for our children and those who follow behind them.
” My heart was struck with the fact that church is not supposed to be a place where we sit silently and solemnly. It is a house of worship for ALL to come in, and the box of what we view church to be needs to be done away with.”
You are so right, Jaci. ABSOLUTELY. Thanks for your comment!
I have been attempting for over ONE YEAR to work with my church to get support for my son, who has mild special needs, for retreats, missions trips, and weekly bible studies. Antonio is very social and easy – he has mild intellectual disability and sensory integration dysfunction – and he just needs some extra patience and oversight to feel included. For the first three months, none of my 6 emails or phone calls were returned. I even offered to pay for an intern to be a buddy for my son. Finally, last week, after a total of 21 follow up attempts, I was informed of a volunteer that could support my son for weekly groups. What concerns me is the LACK of empathy, love, and humility, that several church staff members displayed towards my family as I persisted in following up with them to take action. We were treated like a pesky business transaction rather than members of a church family. So Amen to this blog post. We are looking for a new church. While our current church has a special needs ministry program that works for many kids, my son fell through the cracks FOR ONE YEAR. We don’t need a church with a program; we need a church with a heart.
So beautifully put Jennifer. I too felt like a “business transaction”…someone whom they were trying to appease, and when I shared the news I was leaving, I knew in my heart they would be relieved to hear it. I feel your pain. Moving on. I pray you find the right church for your son, one with a heart! <3
“we don’t need a church with a program, we need a church with a heart.” Very beautifully put! thank you – this is exactly what church volunteers need to know when we work with all children. We need a church with a heart!
Great article. Just wondering about sensory issues and church? We are unable to attend our church as my son finds the excessively loud music and light show physically painful. Other members frequently complain about the loudness too. I feel sad as this is the reason we are leaving. I don’t want my son to hate church. I just can’t help but wonder is this what Jesus would want? Is loud music more important than people? I feel very sad about it all.
Thanks Mel. My son really cannot tolerate being in “big church” at all, for the same reasons. He has extreme sound sensitivity. The new church we are attending has a Special Needs program that ministers to him elsewhere while my husband and I attend church in the sanctuary. 🙂
I think that what people are afraid of is that they will do or say the wrong thing. So getting some training through the group mentioned above sounds like a great idea. But simply telling people what to say or how to respond to your child would be helpful too–maybe offer to provide some information in whatever way is easiest for you and would be best received by the congregation. I think parents of children with all sorts of physical issues have dealt with it forever.
But, yes, it is always easier to parent someone else’s child and all those looks you get are probably about that. They think that everything would be better if you just said or did what they are thinking you ought to do.
I love this post. We recently moved (for services) and this ended up being the main criteria in choosing a catholic church. The one we attend has a special needs sunday school (CCD for all you old timers). I was shocked that there are only 2 kids in my son’s class, including my son! The other child has severe CP. I hope that means they are making valiant efforts to include children in the mainstream classes. From the moment we walked into the church office to register the boys for sunday school, I knew things were going to go well. She said they would do whatever I wanted with regard to sacraments, I want to wait a little. The admin assistant gave my son a stack of papers that he could feed in the shredder while I filled out forms. Now my son feels MORE than welcome to go into the church offices to see what fun is in store. The ratio in his class is 1:1 and the young women who are his teachers are very sweet and understanding. Is this class particularly effective in teaching my son about God? Not really. But they try and try some more and that is more important in my opinion. Also, I go to church during that time, so if nothing else this church is making my participation possible. They are welcoming to all 5 people in my family.
Awesome Kristine. One thing I remember learning from my friend Amy Fenton Lee (www.theinclusivechurch.com) is that in special needs ministry, that the child’s primary teachers are their parents, and if you are allowing the child’s parents to worship together, then you are being an effective minister to that child and family. That is a great thing. Thanks for this comment! 🙂
A number of responders have talked about ‘dirty’ looks. How do you know the person wasn’t thinking hard, or in pain, or praying, or whatever? How can you tell what a dirty look is? I ask as one with Asperger’s and one who hesitates to automatically ascribe bad thoughts to people who might look like they are thinking bad thoughts. My mother always looked mad when she was thinking. Used to scare me until she explained.
I’ll give you an example. One person told me that while visiting a new church, one staff member walked with the parent and child down to a classroom and introduced the child to the teacher. The teacher shot the accompanying staff member a “dirty look” when the child was brought in – I imagine it to be an angry look. Narrow eyes, frown, furrowed brow. Usually very brief. I imagine most dirty looks are passed between volunteers and not toward the affected person.
Our kids fitting into church is a huge problem. I found a wonderful organization called, Joni and Friends. They are in a lot of states now and they are willing to go into any church and help them set up a special needs class. And the do it for free. They will work with the pastor and/or a Children’s Minisitry leader. They train them with their program called ‘Through The Roof’. Just contact them at http://www.joninandfriends.org.
I do believe that if we are going through a period when our children are difficult to handle (those are the times we can barely handle our kids ourselves), then we shouldn’t be asking untrained people in the church to watch our kids. During those times we should watch a service on online. But when our kids are in a good place, we should do our best to find a church home. It’s no fun looking for a church, but the rewards of finding a place that is a fit for our family far outweigh the trouble that it takes.
I loved this blog post. Often in my own blog, I share my heart with abandon which isn’t bad, but you shared your struggle in such a positive way. There are times for sharing it like it is too but I especially liked the end. I hope one day all chuches will be inclusive! I had individuals who were trying to help from my church and rather than listen to what my needs were they came up with an entire prescription for my life to follow. They didn’t agree with my therapy approach and my son and I got kicked out of the overflow room during a Sunday service by 2 people like I was a drunk starting a brawl just for allowing my son to worship his way. He only likes to raise his arms, pray out loud, stand up and sing. They call that a distraction! They tried to provide a one aide, that took years for them to implement. After 5 years I had a church leadership person (the person in the church considered the expert) say that my son was not Autistic. Rather they believe Autism is a false diagnosis to cover up abuse and neglect. Yes, such antiquated beliefs do exist and it is best to WALK AWAY!!!
Ewwwww! Willful ignorance!
I had a wonderful church that started a special needs ministry for my 18 month old son and it has grown to a great ministry with even respite once a month. It was such a blessing to go to worship and know that my son had an aid to help him focus and not have me worry that he was too much of a distraction for the lead teacher. As he got older and many symptoms disappeared through our implementation of relationship development intervention (RDI), we actually had to leave because they wanted to help him when he developmentally didn’t need it anymore. I wish everyone could have that problem!
Well said! There are so many of us out there, families living with special needs, truly it’s a mission field. Christ Himself would welcome our families with open arms.
Thanks for sharing this post. I’m sharing it, too.
Thank you so much, Kelly, and thanks for sharing! It means a lot! 🙂
I am sorry you’ve had such negative experiences in your church. My experience has been quite the opposite! My whole life I can remember church being filled with wild kids; some NT, some with autism, some with Down syndrome, CP, you name it! These days we often sit close to a young man with Tourette’s. In my lifetime I’ve had approximately 10 church homes due to cross state or cross city moves. I always attend the neighborhood Catholic church and the response is always the same. Children to adults, from the serene NT to the out of control distractors, every single one (including my own special needs child) is always welcome. On the days when the individual is especially difficult, people seem to go out oftheir way to let us know their noises remind them that God loves each one of us. The thing is, no one is there to be ministered to. Everyone is there to worship. It’s not about us. It’s about Him!
I will pray that everyone will feel as welcomed and lived as they should be!
That’s awesome! Unfortunately I was unable to worship with my family because no one would help me with my son, and yes, since it is ultimately about worshipping, I did need someone to help so that I could. Helping one another is ministering to one another, and it is a vital part of a healthy church. So happy for your good experiences, I wish that were always the case!
We left our former church due in part to feeling bored ‘unfed’ spiritually each Sunday and in part to a dirty eye-rolling look from the Priest toward our special-needs daughter (who was walking so nicely toward Communion; not disturbing anyone) a few years ago. Ever since moving to our current, much healthier and enlightened Christian church, our lives have improved in so many ways. Nice blog. Thank you.
Thank you Sue! 🙂
I love this.
Despite a well-intentioned desire to keep me from getting hurt, a close relative advised that I “not tell EVERYONE what’s going on with R”, prior to his Autism diagnosis last week. Now I’m not exactly a ‘wear your heart on your sleeve’ type of person, but I wanted prayer and asked for it.
I have high hopes for my church family. I can admit that part of the method behind the madness of “telling EVERYONE what’s going on with R” was to gauge their responses to our family . . . and for the most part we’ve been met with support. I could see the fear and uncertainty in one nursery worker’s eyes on Sunday, the quiet sympathy and support in the eyes of another. Underlying all of it, though, from the nursery workers, to our friends and our Pastor and his wife, was love. Real love for parents in pain.
I have hope for them. Perhaps I can be part of a group to bring awareness and understanding to our little church, but I know that the first step will be along the lines of what Jesus taught us: to love ‘the least of these’.
Love wins.
Oh Allie, I am so sorry about the recent diagnosis. Your church can be very blessed by your son as long as their hearts are open to him. I think your outcome will be very positive; the fact that they know him pre-diagnosis and that he is being raised in this church means that they can adapt slowly as needs arise. 🙂 So glad you have this support! Thanks for sharing!
Thanks B.K.! As far as the diagnosis, well, it is what it is. This blog–the whole TMR site–has REALLY helped prepare me and my hubby for the testing and diagnosis. Now we just need to get insurance sorted, therapies scheduled, diet plans in place, supplements purchased . . . yeah. 🙂 In fact, I don’t think we’d be doing as well as we are if not for you all sharing your hearts and experiences in this little corner of cyberspace.
We have another family in our church with a high-functioning autistic boy as well, so the way was really paved by them.
It’s made this strange time easier to deal with to have people who love us just come up and say, “We’ve been praying for your family.”
And now I just learned that the Women’s Ministry will be throwing us a baby shower after our newest blessing is born next month. 🙂
It’s a strange time, but God has been so good to us. Can’t complain!