The things that blow me away the most are the stories I hear from families of children with special needs who have dared to take their child to church.
Well, at least that is how they wound up feeling about it.
Because, their kids, weren’t really treated so well.
Not by their peers.
Not by those who held the responsibility of setting an example.
I’ve heard stories from families who have had to change their place of worship.
Not once.
But several times.
Some finally giving up and choosing to worship at home.
One would expect church to be a safe haven.
But I’ve lived long enough to know that while the gospel is true…….. humans, are well, human.
Which is a nice way of saying that even jerks go to church.
While we don’t take Parker to church due to a not so strong immune system, our ward members have been fantastic. I have no doubt that when the time comes and Parker is healthy enough to attend, he will be welcomed with open arms.
I’ve seen this happen with other kids with special needs in this same ward.
Plus, I think with all of the praying and fasting my neighbors have done for Parker they have kind of a vested interest in our Hero.
I know for others it has been different.
And I’d love to hear your stories.
Most importantly, I’d love to hear how you chose to handle the situation.
So that maybe others can learn from your experiences.
Isn’t it ironic, that the kids who have been given such an endowment to illustrate the principles taught by Christ, are the ones so often pushed away.
In church.
PS: There is another giveaway for Voice4u going on over at 5 Minutes for Special Needs! Go and enter NOW!
{ 30 comments… read them below or add one }
I know that this happened with my cousins who are deaf when we were kids. It made me very nervous about church-y people when The Biscuit was born. I was very lucky to find a UU where the woman in charge of the youth had a sister with Down syndrome. I felt like I’d been led there by Someone Who Knows More Than I.
I’m really looking forward to reading what others’ experiences have been.
It’s funny you should write about this particular subject. I have left two churches already. One we left because of their belief that sin had caused my baby to have Down syndrome. The other we attended as visitors and Ella started fussing a little bit. I was about to get up and walk out as to not disturb the pastor’s preaching – when in less than a second of her crying I was escorted out by the “head” usher. He told me we were disrupting to the service. I was shocked.
I had to sit in a cafeteria the entire service watching the pastor’s preaching via a flat screen TV.
I didn’t watch – instead I did therapy with Ella. We signed and laughed and played. I haven’t been back to church since. That was a year ago. We are due to attend a service this Saturday, and I’m praying we will find a sense of unity among the brethren.
Okay. I’d have HUGE issues with someone who thought that Parker’s extra chromosome was due to sin.
Especially since we’ve always thought we hit the jackpot with this kid.
Wow this is a subject I have really struggled with. We have left 2 churches over this issue and it has been over a year since we have been able to attend due to Junior’s health.
The first church I left because I was told if I would just pray more Junior would be healed and that my sin caused him to be like he is(hmmm, I am not even his bio mom so how does that work).
The second church we loved until they got a new pastor. After several Sundays of trying to meet the guy and having him literally spot us and head the other way I was totally disgusted(it was obvious enough that I had church members mention it very apologetically to us).
So much for the pastor being a Godly example of Christ’s love.
I like the pastor of our current church but they are totally uninvolved in our lives. We almost never get calls and I wouldn’t even consider calling if we needed help or even just emotional support. We spent weeks in the hospital last summer and got just one call, no visits at all. I was raised with a father who is a pastor and wow, this was not how things would ever have been handled. If a person couldn’t attend someone was visiting every single week as well as calling and offering support. If you were in the hospital my dad was there every single day no matter how far the drive. What has happened to so many churches? Where is that show of Christs love that should be abounding in all of them???
We are church dropouts and now worship at either St. Mattress or Underwear Church… ahem.
We had a few issues: first, when told that Jack COULD NOT eat, we were called twice to go do the Heimlich on him because they “couldn’t bear letting the other children eat in front of him.” Then, If we stayed in service and needed to turn his pump on , we got ugly stares and the occasional “shhhhh”. So, it seemed much easier to just stay home…
never mention the countless colds and two bouts of RSV we went through because mom’s said, “RSV is just a fancy word for a cold…”
Jesus would not want this. And that hurts.
I understand the whole germ thing. Parker’s docs are always telling us to keep him home from church.
His feeding pump, you mean?
Yeah. the feeding pump.
We need to invent that big bubble to keep us in. Then we could go to church and the kids could have fun.
That said, I still know my kids will know the Lord and all by my teachings, but there is something to be said for the social aspects…I guess that’s true about our whole lives though.
Hermit much?
Hi Tammy, To answer your questions, the coughing doesn’t hurt his health, because he has the trach in, the tracheal malaysia can’t collapse completely. It just makes life miserable because he coughs all day and all night. So we have to suction all the time! I’m not sure what the surgery to fix the airway is called, because he said he won’t need it until they are ready to take the trach out, so we haven’t discussed it to much. I believe its where they take a piece of cartlidge from somewhere else and try to open the airway a bit. I wasn’t to worried about Chris putting that new trach in. I think the stoma was a tad small, and as soon as she pulled the other trach out it closed up. I know she knows what she’s doing. She hit some granulation tissue and thats what bled. It’s something that can happen. But the bleeding stops and their fine, I don’t think it hurt him at all, he didn’t cry.
So why don’t they want to up his size at all? They will have to as he gets bigger. And do you know what he’s aspirating on now that he has the nissen?
Wow, Lacey, I didn’t realize that Jax was coughing so much. I thought maybe it was causing lots of irritation or bleeding or something. But all night coughing has got to be eating into his good sleep time.
Parker’s reflux has been solved with the Nissen, as far as we can tell.
But he aspirates on his own spit now. sigh. It’s obvious that he has been doing this with saliva, food…..ANYTHING that into his mouth for quite a while from all the damage we are seeing.
So they are suggesting surgery if things don’t look better via a new FEES in May.
I’m sorry to hear about some of the bad experiences some of you have had. I agree that church should be a safe haven and I would expect to have our children treated better (with love, compassion, understanding, etc) at church than most any other place. But like you said Tammy, “while the gospel is true…….. humans, are well, human. Which is a nice way of saying that even jerks go to church.”
Before Megan was born, I worried that people might treat us differently or shy away from us because they might be uncomfortable (not knowing what to say or how to act) around Megan because she would be “different”. I’m glad to say our experience has been just the opposite. It’s like everyone is drawn to her and have become even more friendly. The members of our church have been very supportive and helpful and make us feel very welcome.
There are lots of young children at our church and most everyone there realizes kids are kids, so they expect and accept them acting like kids (they tolerate a little bit of noise, etc). Generally parents will take their kids out of the chapel for a while if the kids are really noisy, so excessive noise really isn’t a problem. And no one has even been escorted out because of that. I believe church is for families, and families have kids, and kids act like kids. They should feel just as welcome at church as anyone else (with or without disabilities, etc). I know our Savior loves little children and couldn’t image Him treating them (or their families) in any way that would make them feel uncomfortable in His church…
Greg, I think we go to the same kinda church.
“I know our Savior loves little children and couldn’t image Him treating them (or their families) in any way that would make them feel uncomfortable in His church…”
And what you say here…….so, so true.
We have also been chased away from church. Our church like Heather’s chruch could not understand the no eating concept. We ended up in the hospital twice because they fed my daughter. After that she was not allowed in Sunday School anymore and then when she got to old for the cry room not there either. So she and I had to sit in the entry way since she was not welcome in big church either. I have written several things on our caring bridge site about our experiences at church.
When my daughter was in the PICU on a vent and the doctors thougth she would not survive until morning I called and had her put on the pray chain—not one person called. We never once recieved a meal, a card, a bouquet of flowers in the entire time we attended that church. My daughter was absolutely not accepted. My son was teased because his sister was different. I was told I was a terrible parent because my child was sick all the time and not growing. I was even told once by the preschool director that it must be nice to be able to have your child put in the hospital every time she is sick so you do not have to take care of her.
We have changed churches and our new church is much better.
Christine,
I’m so sorry. My heart broke as I read this.
I’m glad you’ve found a much better place to worship. What do you think made your new church better? More acceptance? Your child being older? Did you go into this church with a different mindset?
I’m just trying to get some ideas for other parents experiencing what you have.
Tammy,
I think much of what made our new church better is the people who attend there. The church we had been going to was very apperance based. They had a hard time accepting anyone who was different for any reason. There were several other issues in our old church as well, and it was very cliquey. The new church very much has a heart for the lost. They have a number of excellent minstries to reach the lost in our community. They are very much a church that is focused on being a healthy church first and having inreach programs before they attempt to outreach. At our old church they viewed my daughter as a disease and they were scared of her, at our new church she is a little girl, who happens to be very sick. They are completely accepting of her.
When we changed churches, I made an appointment to talk to both the pastor and the children’s director first and discussed with them the issues we had in our old church. They were very open to trying to make it work for us.
I don’t think my daughter’s age has anything to do with it. We actually transitioned directly from one church to the next. We had huge issues at our old church the week we left and then no issues at the new church the very next week.
I have written several things on church and chronically ill kids. I think they are probably too long to attach here, but did share them with our new church and with several other churches as well. I can send them to you if you want.
On a completely unrelated note, I have long been impressed with your food storage and frugalness when it comes to food. You have inspired me to cut our food budget. I am still not very good at it and would love to see some of your other ideas. I am also very curious where you find dehydrated food. It makes a ton of sense to me, but I can not find it anywhere except the health food store and it is really expensive there. We have like you cut out all unneeded things from our budget and now our insurance is rufusing to cover a medicine that my daughter needs. The grocery budget is the only place left to cut, so that is where I am trying to find the money.
Christine,
Thanks so much for sharing more about your new church.
You sound like me! The grocery budget being the only place to cut.
My local Costco is now carrying the Shelf Reliance brand of freeze dried foods. They come in #10 sized cans and run between 14-20 a can. Which for freeze dried foods isn’t too bad. They aren’t organic, but I can’t even dream of buying organic freeze dried stuff. Whoa, baby.
Give me a couple of days and I’ll do a post with resources, etc. Sound good?
The Love Magnet was welcomed by our ward the minute she was born. Our problem was the year she was to graduate from nursery to Primary. the Primary President came to our house a few weeks before and told us she didn’t think TLM should be in Primary. She wanted us to hold off another year or two b/c, in her opinion (and she had a great many b/c she worked with people like TLM, she said)that not only would TLm be happier, it would be better for the other children.
After I got over my shock, I told her (will repeating to myself “God loves her, too”) that it was my decision and not hers. The Love Magnet would be starting Primary.
The first Sunday of Primary, TLM was excitedly welcomed with open arms by her teachers and classmates. The rest of the Primary Presidency told me how exicted they were to have her there. The chorister made a point to tell me how cute my daughter was while they sang “I’m a Child of God.”
Please, please, PLEASE realize that one person’s opinion (or a few) does not constitute the opinion of the entire congregation.
“Please, please, PLEASE realize that one person’s opinion (or a few) does not constitute the opinion of the entire congregation.”
Absolutely! I couldn’t agree more. I also think seeking out your own support system within your church congregation helps. If your friend’s child is there to champion YOUR child, that can also make a difference!
We stopped taking Wesley once swine flu started up. We are too small for a ward so we are in a branch. Wes cannot go to nursery anyways…but what we used to do, before we moved, was just go to an empty classroom and bring some toys and let him and his younger sister have there own little nursery. Now we are in a building that is way to small…even for our branch…let alone have an empty room where I can let our son and younger daughter go to.
Our other issue…is my son is not an early riser…at all…he is very fatigued and often sleeps til noon and all heck breaks loose when you try and wake him up earlier. Our branch insists on always meeting at 9…so I have no idea when we will be able to bring him.
Wesley is now actually old enough to go to sunbeams…but again…it’s just not feasible with his health issues and the hygiene of 3 year olds. So we just leave him home with my sister and sometimes the baby too…as she is often going down for a nap at 9 am…and is one of those babies that she’s not worth bringing if she needs a nap…she doesn’t cope.
I am not kidding when I mention…my hubby has moved for a job…and I really don’t want to move there (we will see him on weekends) as I really like where we live…but they have actual wards there…and if any of them have something besides 9 am church…that will be one of the leading factors in my willingness to move.
Hello, hello, hello – yes it has been a long while but life has become a little more complicated of late.
Appropo of you post today, I’ve just been reading Lisa Jo Rudy’s book and she has a big section on the subject of how to ‘tackle’ your place of worship.
We have had our own experiences but I probably need to try again as it’s been a while and they are [all] so much bigger.
My kids are only mildly “issuic”, but we still have had our troubles The 3 year old that is still brought to me all the time from his Sunday school class, because he won’t stop crying. The kid that was brought to me every week in nursery because they didn’t want to deal with him being grouchy. Apparently crying is bad!
Does that stop me? No. Even though I spend more time in class with the kids than in my own class … I figure one of these years, I’ll get to hear my own lesson.
As for the mothers that say “RSV is a fancy name for a cold” … what are they thinking? RSV bad! Very bad! It kills babies every day, what kind of idiot parent doesn’t realize that?
My deepest sympathies that you have some of these naive mothers at your church!
The most acceptance in a church (ward) I have read is at
http://www.3runningincircles.com/
The story of her twins’ (both with autism) baptisms was inspiring.
I’m sure this post is helpful to many, Tammy.
Hi, Tammy! Great question and great discussion. I personally don’t know what our church’s reaction would be. We tried going a few times with Jack (prior to being dx’ed with autism, but after he was dx’ed with CP), but he is so sensory sensitive that it was pure torture for him. The noise, the light, the crowd, the kids in Sunday school. Two years later, he is still very challenged with this. Will it ever get better? We’d love to worship as a family, but can’t. Sigh.
We have had it very easy compared to most who have posted here. Our church is very supportive, came to visit us when our little guy was in the NeoNatal unit for 4 weeks after being born, brought meals for months (literally!) and welcomed Isaac when we could finally bring him to church when he was 3 months old. He has Down Syndrome and we’ve gotten a few silly comments, like ‘we hear there is some kind of treatment you can get down in Mexico that will cure DS’ etc. But we take those with a grain of salt. Like you said, even people who go to church are human. Some people are simply ignorant and speak out of their ignorance. They don’t know that what they’re saying is hurtful. It’s only hurtful if I let it hurt. Sometimes I let them know that what they said just doesn’t make sense and help them understand what it sounds like to a parent with a child with special needs. I didn’t know much about kids with special needs before our son was born. Why should I expect other people to know about it as soon as we are experiencing it? BUT…in spite of that…we really do have a very family friendly church. All kids are in the main service in the afternoon, there is always a low hum of noise in the back where parents sit with kids. No one has EVER been ushered out because of a crying baby. I’m thankful for the love of our church family. I certainly won’t ever take it for granted after reading some of the experiences of people here.
I think having a physical disability is harder for others to accept. Growing up we had a few DS kids in our ward and they were openly welcome. When Ty came our ward was not so accepting. Our first ward told us that they were to old to help so I had a broken c section and they couldn’t help. No one to help us drive to the hospital, no one to bring in meals.
As Ty got older and it was nursery time we were told he was not allowed to bring his walker. That was the only way he could walk but he was not allowed. There were too many kids in the nursery. So we opted not to go for a long time. ( which I guess was fine. we didn’t catch any nasty germs)
After moving AGAIN we are now in a ward where Tyler is VERY welcome. He is kinda the kid that makes everyone smile while we are there. Everyone knows who he is. One little girl has taken to be his “voice” and tells everyone that this is Tyler and he can’t talk but I can. She lives across the street and she comes ALL the time! He gets invited to birthday parties and everyone knows him wherever we go.
I think people mean well in any situation. Generally I do think they DO mean well. I just wonder if one well intended comment is what makes it hurtful because we are all ready on edge and super “Mama Bear” even when it comes out all wrong.
So there is our story.
Interesting comments here. I think churches should be welcoming to EVERYONE! I don’t get it when people/churches begin to single people out. I am so thankful that in our church we do open the doors to anyone and everyone. Now, I do not have a child with special needs, other than a 14 year old who has struggled with tourettes- we’ve managed to enjoy participating and partaking in activities in our church. His tourettes is not as bad today as it was a couple years ago, he’s maturing and learning how to deal with it. I feel so bad that many of you have had to change churches or not even go because of your special needs children. When it’s an immune system thing, I can understand. But, does your church offer videos of the servcies, etc? Food for thought. Nice post and I’m glad you brought this issue out!
I do not have a child with special needs but it is just breaking my heart to real all these posts.
The church I attend here in Houston and the other several churches I am affiliated with (via family, bible studies etc) are all extremely welcoming – some even going so far as to have a Sunday School class just for autistic or DS kids, full time deaf interpreters, parental support groups…I guess I have been in a bubble of wonderful churches because the stories y’all are telling are just making me stomach sick.
What can I say….move to Houston!!
Our church has a fantastic ministry called Barnabas Disability Ministry. There are two mom’s Bible studies, a monthly dad’s book study group, Sunday school classes for adults with special needs (very well staffed), and quarterly respite nights (for the children and their siblings, staffed basically at 1:1 and open to the public, not just to church members). Every Sunday morning there is someone from Barnabas staffed on each floor of the children’s ministries (infant/toddler with early childhood, elementary, and upper grades). Between the early childhood director and the Barnabas coordinator, they determined which classroom would be best for our son the first Sunday we showed up there, new to town. I thank God for the hearts of all who work to make our family not feel out of place at church. They love our son so well… brings tears to my eyes.
I once headed up a special needs Sunday school because there was no place for my son … this was too overwhelming to be the parent of a special needs child AND the leader of such a class. After we moved to a new state, and tried several churches, I end up staying home most Sundays .. hubby goes to church .. sometimes I have one of my adult kids watch our son. Our son has DS and needs a lot of supervision. The current church has no place for him (I asked .. then left and went out to the woods on my property to have ‘church’ alone with God. That’s pretty much where I go to church …
My heart aches reading each of these stories. Yes, the church should be a safe haven, and for those people who were so off-base and ignorant in suggesting that your child’s challenges were caused by someone’s sins…theirs is a shaky, shallow faith–a circumstantial faith.
And, speaking as a church nursery director as well as a mom, I really wish that more parents realized that a “small” cold for their child could be very, *very* serious for another child.
I’m praying for y’all!
Our church is very welcoming and understanding – maybe because the pastor is also a special needs parent. In fact, it seems like more and more families with special needs are coming and “sticking around”. Over the last year we went through some real behavioral challenges with our daughter (ASD) in Sunday School. Only one person suggested removing her to her own class, and when I explained that we had to keep her in with the other children in order to help her learn how to behave toward them she understood. What we did instead is bring in a behavior expert to do a workshop with our Sunday School teachers. She helped them understand what was happening for our daughter and how to best support her during class. They all responded immediately and so did our daughter. We’ve also switched to a “home grown” curriculum that really simplifies the lessons and makes it easy to engage all of the children with the materials. I taught yesterday and had 5 kids in class. Only two of them were neurotypical. The other three have various levels of ASD. We had a great time. When the mom of one of the ASD kids came back to pick him up her son gave me a hug and she said that was the first time he’d ever done that. It is a lot, as someone else mentioned to be the parent and the teacher, but I only do 1 Sunday a month and then coordinate for the other teachers so they know which lesson to do, etc. And after days like yesterday I feel like it is all worth it!