Care to share-if your church has a special needs department

[Ggg]

 

Is your child in a separate room set up for special needs? Or mainstreamed?

If it is special room, what are some of the items they have that helps your child?

do they pair your child one on one with the same person every weekend? Or these people trained?

If so does that person contact you and ask you questions about your child?  If so what kind of questions?

 

Please add any other information that you feel is important...big decisions 

 

thank you

 

[PeterPan]

We've been visiting churches, trying to find one that works well for us, so we've seen a range so far. The ones that don't have anything are sometimes clueless bordering on antagonistic, treating us like he's merely a parenting/discipline problem, telling us to let him scream it out (I kid you not), etc. Those churches also tend to have the lowest quality instructional practices. So the might appeal to one modality, not offer breaks or snacks, be heavy on language (spoken instruction, written papers, expectation of writing or memory work). Basically they compound in spades everything that is a disability for my ds.

There are churches that don't have a buddy system or offerings, but they are like sure, bring your ABA worker, no big deal. They tend to have more varied instruction, with a children's program that includes breaks and a variety of modalities. We can work with that.

Then there are the churches that are very up to date. These tend to be large churches and they tend to have a *person* behind them who is the driving force. Even in big churches, programs like this don't just happen. Key Ministries does conferences and provides training, so what I notice is for instance that Vineyard churches seem to have similar offerings and I suspect they're all going to the same trainings, sort of a corporate/denominational top-down statement that this is what we do. There must be other groups doing trainings, because a big Southern Baptist church near us is working on setting up a program and went somewhere else.

So the challenges I saw in having a full blown offering, where you're like oh yeah we have sensory rooms and buddies and we'll do this for you, is mainly workers. It's a low ratio (or is it high? I forget the word, lol) kind of thing, so one church we visited was having to have 4-5 workers for that room and flex to deal with visiting kids. Big church, but literally even with just 8-10 kids needing that in the whole church, it takes that many people. 

Now that church had an amazing sensory room, brought in a therapy dog, like it was really, really, really well done. If the kid stayed in the room, they read a Bible story. If the kid was ready to go out, his "buddy" would take him out to participate in as much as he wanted of the children's program.

Challenges there? For a dc like mine, he would probably not have gotten to the mainstream setting much because it would have been easier and more comfortable to stay in that room. The workers are not prepared to handle significant behaviors or any pushback. That's not their job and not what they're there for. So if you want ABA, you need to bring in an ABA worker. I can't expect someone to do for free, with zero training, what I pay significant money and provide training to do. I can't expect a random person to be able to make the same demands (woo, ABA terminology) as a paired worker. 

So if you're looking for your own dc, I really think it depends on how he rolls. If he's able to use an unpaid, unpaired worker (someone who just walks up and says lets go) and he can access everything that is developmentally appropriate for him, then you've got a good fit. I was trying to help my ds be able to go into the entire children's program, boom, with access to a sensory room for breaks. For that, my ds needs a paired worker. I bring someone in on Saturdays, they work together for 3 hours, they do ABA. They do pairing and they do compliance. It's not a ton of anything, nothing harsh. I put out a pile with things like a puzzle, reading a book together, origami (his visual motor integration sucks so origami is hard), etc. With that level of pairing, he can go in and participate and be fine, totally fine. He participates with minimal monitoring from the worker and comes out calm and compliant. With about 15 minutes in the car he's back down to baseline. That to me is a good session. That's where we are now and the goal is to get him to where we could fade that. 

I think a dc who has siblings would get the same effect from going in with siblings. That jab in the side if they're acting up, knowing the routine, feeling calm because they're with someone familiar. When my ds DIDN'T have that, he would leave church extremely stressed (under tables, screaming, in closets) and would have behaviors in the rooms (repetitive flicking light switches, vomiting, using behaviors instead of language, hitting). We changed churches, tried again, still with no workers, and he was still stressed, though less because we were teaching more skills. We finally gave up and decided to hire a worker. In the time when we were waiting for a worker we tried a church with buddies, which is why I can tell you that a volunteer buddy is NOT a replacement for ABA. If you read what they're being trained for behavior, they're basically going to be pretty hands-off. The expectation is that your dc is ready to comply with a random person who walks up to them.

Total aside. I was in one church's sensory room and this basically non-verbal dc came in with no AAC. I'm like where's his AAC? Apparently if you're ID on top of your ASD people don't bother? I mean, it was heartbreaking to me. Anyways, what are workers supposed to do with that??? They had NO CLUE. They just sat there. And this kid comes EVERY WEEK!!! I sat down with him, started doing some joint attention things, started imitating what he was doing (playing together basically) and we had a great time. They're like how'd you do that???

So again, the level of support should match what the dc needs to be where he is ready to be developmentally. Some kids are going to do better with a paid worker. I think asking a volunteer to do what needs to be done by a paid worker is a lot. At our old church someone tried, but reality is the needs are too significant when the dc needs support through two services. I now have a really great non-christian worker who is plenty happy to go to church three hours a week for double minimum wage, kwim? And I had churches who didn't have programs where someone there would say well the church should provide this! Well that's nice, but who? Most churches are already strapped. And I got frustrated, because they were like well we can't do anything till we do it RIGHT. Well thanks, but Sunday comes every week.

7 hours ago, Ggg said:

Is your child in a separate room set up for special needs? Or mainstreamed?

The goal is usually to have a sensory/break room (size/quality varies) and to allow the dc to be out to the degree he's ready. Some kids are only in the sensory room the whole time, some 1/2 and 1/2 and some mainstream with a buddy. That's the goal, to fit the dc.

7 hours ago, Ggg said:

If it is special room, what are some of the items they have that helps your child?

I've been in rooms that were AMAZING, with low lights, carpeted retreat boxes, theraputty, trampolines, you name it. Some kids are really calmed by that. My ds is, but reality is his ability to participate isn't driven by whether there's a sensory room. His ability to participate depends on whether he has enough support to go into the setting and stay calm, whether the demands in the setting are too high. We went to a church where literally in Sunday School they wanted his class to WRITE NOTES! They handed the kids notebooks and said WRITE NOTES. I kid you not. My kid has an IEP an inch thick that says SCRIBE. They literally made church unattainable for him. And it kills me because that church is how I was raised. But they equated their methodology with spirituality and were slamming the door to Christ in people's faces. Unbelievable. And I don't know how a worker makes that better. There's no bridging the teaching modalities, etc. If you want your kid somewhere other than that sensory room, then the REST of the children's program has to be such that your kid can access it. And they really vary now, with games, multi-media, music, band concerts. I kid you not, one was having concerts for their huge kid program!!! But if that's noisy and your kid can't take it, what good did it do? So it's the total picture. That's why I say in general the churches making the effort for SN also seem to have more developmentally aware instruction.

7 hours ago, Ggg said:

do they pair your child one on one with the same person every weekend? Or these people trained?

Not the same person every week. You wouldn't want that anyway because then if your dc with ASD doesn't have his worker he might refuse to go. You want variety. Yes trained, but NOT trained to do restraint, ABA, etc. They're not planning to handle any behaviors, dispense medications, etc. One church required a parent to stay with the dc the entire first time through (along with the buddy) so they could see what needs the dc would have. I haven't seen what the training is that Key Ministries or other places provide. You can look it up. I saw some things online, and it's definitely not turning them into RBTs, not preparing them to handle questions. And typically the person at the top is the most engaged and ready to solve problems and the underlings were possibly trained by her. So that person at the top might actually work in a school setting and have training, but everyone else has just the most basic level. (safety policies, who to call, basics)

7 hours ago, Ggg said:

If so does that person contact you and ask you questions about your child?  If so what kind of questions?

if the church goes to a training conference like Key Ministries, I think they'll get all this info. There's one in Cleveland coming up https://www.keyministry.org/ifl2019

So what is the big decision you're trying to make? Whether to start a SN ministry or whether to leave to find a church that has one? If this is for your own dc, I think you have to focus on his needs first. If you don't have a SN dc you're caring for and are trying to service others, yes I would get the training and take steps. I can tell you that THE MOST HURTFUL THINGS one church said to me were first the "let him scream" stupidity and then that they wouldn't do it till they could do it "right." A safely done SMALL PROGRAM would be better than a wished for large one. Do something small but get the training to do it safely and with best practices. There are a lot of nuances. Every dc coming through will be different, the needs different. You could get the staff trained by going to the Inclusion Live conference, then decide to service just three kids as a test run. Meet those immediate needs and then, as you work out the kinks, begin to offer it more widely. I'm not a legal expert, but as a parent that would have met my needs, rather than being told to wait for pie in the sky.

Just my two cents, but I think big churches could actively try to hire non-christian RBT workers to be buddies. Sure christians would be nice too, but is it really so awful if we pay people $15 an hour to show up at church? LOL No, it's good for them too. I've never seen ANY church offering that. I'm just saying they have these budgets and they paint murals and put in fancy this and that. Reality is some kids are going to need a higher level of support. Now their (the family's) insurance should be providing ABA for the kids, sure. Ours doesn't because we have a high deductible. It's probably not allowed for some reason, but I'm just saying that would just blow the lid off, lol. I don't think the room is as important as the workers. I don't know if they'd be allowed to do that or not and it would of course be expensive. If you went through a BCBA, they'd bill the RBT's at around $60 an hour around here and hand the worker only $15. To hire them without that, you'd need a BCBA in your congregation, someone prepared to supervise. 

I think the church can do better. I think the most christian person in the churches I've visited was my unbeliever RBT, because she's willing to wake up early on a Sunday morning to make sure MY DS can be in church. Our people are so underfed and hurting that they aren't ready to give like that, to extend themselves. It's a real sacrifice. Like me, if I weren't busy with ds, would I make that time? I don't know. 

But no, I doubt it's allowed for churches to hire/provide RBTs, lol. But we could wish. 

So tell us what you're up to! Fwiw, there are *other* kinds of things some churches are doing. Like in the big city near us, one church hosts a kind of ecumenical SN worship service in the evenings once a month where anyone can come. It's considered a noisy service, so it's ok to get up, walk around, make noise, and I assume it's shorter with a lower language level. Another group in another big city (farther from us) is hosting Bible studies for non-verbal ASD kids and their families. What a marvel. We're talking kids who would be totally excluded from most settings and are possibly dealing with ID etc. Those bible studies are more like happy discussion with simple themes like friendship. But they're ways to have people be in the church and be loved and be connected and met where they are. That's something I've thought about for us, wondering how to start that or find that. My ds' understanding of spiritual things is so delayed that I think a lot of church just washes over him. That's why when the church doesn't show LOVE and help him be connected socially, they missed the only part he was actually ready to GET. He can't memorize verses with you or retell the stories, but he sure catches on to whether the church is FRIENDLY or not.

Edited March 27, 2019 by PeterPan

[City Mouse]

I don't have any recent experience, but we used to attend a large Catholic Church that had programs for kids with disabilities. There was a special religious education classes for kids with intellectual disabilities. I believe that the Catholic Church has a separate curriculum for those rather than just modifying what is used in the standard classes. This church also ran a VBS classes for those sales students. Kids with LD or more mild cognitive impairments attended the same classes as everyone else. However, I don't believe that the church was able to supply one-on-one aids for any kids. There were extra volunteers at VBS, but these were mostly young teens. The one family that I knew personally at the church would have one parent-usually the father- stay with the special needs child. I don't think there were any resources for a child with behavior concerns other than a separate room that parents could utilize. It was common to see older kids in the "cry room".

People of all ages whose disabilities caused them to be noisy during mass were welcomed by the priests and encouraged to be there.

Edited March 27, 2019 by City Mouse

[kbutton]

Joni and Friends has a book series called Irresistible Church. https://www.joniandfriends.org/education-training/for-churches-educators/  I think you can sometimes get the e-books on Amazon for free, but you probably have to search separately for each title.

One thing I like about the books I've perused is that they do have suggestions for a variety of ways to handle SN issues--they include buddies, separate rooms, etc. They help churches assess what is best for their needs and church culture vs. suggesting just one correct way.

I have all kinds of feelings about SN and church, lol! My kids are 2e, and some of what Peter Pan is upset about would not be an issue for me or for many other kids with SN, and on top of that, some of what they do need would be to be engaged in some pencil and paper tasks (meaningful ones) or at least if the lessons are made "accessible to all," they are still kind of deep and theological (but I had a preschooler asking me some pretty hefty questions). And that's a lot of what is difficult about SN. And some of my frustration is about church culture too, and SN issues exacerbate it. We do have quite a few families of SN kids who attend our church and are perfectly happy with how things are handled. 

On the worker end--as a parent of a SN child, there are kids I can easily connect with that have SN and kids that are a complete mystery to me. There are kids that I know I could sit down and teach them a Bible lesson in a meaningful way...but not in a classroom of other NT kids. I am not the kind of person who can accommodate everyone--I see lots of differences and can't reconcile them. So, I get really stressed out trying to help with SN kids at church, but unless I just completely avoid the kids' wing, I find myself gravitating towards the kids who need a buddy, and then I feel like I can't do it well in our church context. 

Our church has buddies. They are there to help with bathroom runs, keeping the wheels on the bus, etc. They help the kids get a break. If an activity is over-stimulating or something like that, they take the kids for a walk or do a separate activity in the same room (we have people in the halls all the time--security, etc.). The workers rotate, and they don't have a lot of training--it's more that they meet with the coordinator and get on the same page. Some of the buddies are people who have grown kids with SN. Some are just patient types who are up for being run ragged, lol! (One of the kids at our church is an escape artist--you have to be within a foot of him at all times!) 

So, that's a pretty sad explanation of our church's ministry--ask someone else, and they might tell you glowing things. You won't get guilt from our workers (at least the usual workers--there have been some exceptions, but mostly those people are not there at all or it's in the context of non-Sunday AM activities that are very different, and those things usually get ironed out). 

Oh, as a worker, I was also frustrated that we had no way to know what the parents' goals were. So, there are kids that are there to socialize, and they get Bible lessons on their level at home. Great--keep the kid happy, alive, and feeling positive. But some people want their kids to learn more stuff--sometimes they're from a different kind of church originally, and they've brought their kid to check of the catechism box or something like that. Our church is not like that with NT kids, let alone SN kids. For instance, we had a family bring their kid to a mid-week program without really telling anyone about the needs/goals, I think (maybe someone in charge knew, but it didn't filter down). This family was unchurched, and their son had big God questions, which, of course, he didn't ask (as far as I could tell) during the programmed activities. Sigh. And the programmed activities are not as flexible as Sunday AM. But also, the church doesn't really have a way for the parent to express this. This child would've probably been better served with 1. Coming on Sunday vs. the mid-week program and 2. the church ASKING the parents what they want us to know. But we'd have to know that the family had SN...to me, this is all very messy. I am in the minority big time about it.

But again, there are multiple families very happy with what they are getting from our church (youth group is another story for some of them), and the SN are diverse at our church--some autism, but other issues too, including mental health issues. I feel like some programs mentioned about other churches seem to think that all kids need sensory, etc., but some of these kids are not really that way (mine needed some of that, but too much, and they would just go into "play mode"). They might need breaks, but mostly they need materials at their level and a chance to marinate in them a bit in a more concrete way. One kiddo (who is seriously the SWEETEST kid ever) would talk you up all AM, but mostly he wants to know how everything in the universe works. If there was a such a thing as a Montessori-style Sunday School, it would be PERFECT for him. 

I do not feel like our church is prepared to handle kids with mobility issues or who have really profound needs or adults in the same boat--there aren't great places to deal with non-baby diapers. As for our service, it's loud. Everything at our church is loud. They are making an effort to try to get official parking lot helpers (carrying bags when they see a mom with a carseat, toddler, preschooler and not enough hands), or helping people with mobility issues. It's never been a problem to have people who will vocalize in an unexpected way in church services--our pastor says he can't preach over anything or anybody, so come on in.

So, acceptance is not an issue, but I am unsure how to pin down what's working and not working otherwise.

 

[Terabith]

21 minutes ago, kbutton said:

Joni and Friends has a book series called Irresistible Church. https://www.joniandfriends.org/education-training/for-churches-educators/  I think you can sometimes get the e-books on Amazon for free, but you probably have to search separately for each title.

One thing I like about the books I've perused is that they do have suggestions for a variety of ways to handle SN issues--they include buddies, separate rooms, etc. They help churches assess what is best for their needs and church culture vs. suggesting just one correct way.

I have all kinds of feelings about SN and church, lol! My kids are 2e, and some of what Peter Pan is upset about would not be an issue for me or for many other kids with SN, and on top of that, some of what they do need would be to be engaged in some pencil and paper tasks (meaningful ones) or at least if the lessons are made "accessible to all," they are still kind of deep and theological (but I had a preschooler asking me some pretty hefty questions). And that's a lot of what is difficult about SN. And some of my frustration is about church culture too, and SN issues exacerbate it. We do have quite a few families of SN kids who attend our church and are perfectly happy with how things are handled. 

On the worker end--as a parent of a SN child, there are kids I can easily connect with that have SN and kids that are a complete mystery to me. There are kids that I know I could sit down and teach them a Bible lesson in a meaningful way...but not in a classroom of other NT kids. I am not the kind of person who can accommodate everyone--I see lots of differences and can't reconcile them. So, I get really stressed out trying to help with SN kids at church, but unless I just completely avoid the kids' wing, I find myself gravitating towards the kids who need a buddy, and then I feel like I can't do it well in our church context. 

Our church has buddies. They are there to help with bathroom runs, keeping the wheels on the bus, etc. They help the kids get a break. If an activity is over-stimulating or something like that, they take the kids for a walk or do a separate activity in the same room (we have people in the halls all the time--security, etc.). The workers rotate, and they don't have a lot of training--it's more that they meet with the coordinator and get on the same page. Some of the buddies are people who have grown kids with SN. Some are just patient types who are up for being run ragged, lol! (One of the kids at our church is an escape artist--you have to be within a foot of him at all times!) 

So, that's a pretty sad explanation of our church's ministry--ask someone else, and they might tell you glowing things. You won't get guilt from our workers (at least the usual workers--there have been some exceptions, but mostly those people are not there at all or it's in the context of non-Sunday AM activities that are very different, and those things usually get ironed out). 

Oh, as a worker, I was also frustrated that we had no way to know what the parents' goals were. So, there are kids that are there to socialize, and they get Bible lessons on their level at home. Great--keep the kid happy, alive, and feeling positive. But some people want their kids to learn more stuff--sometimes they're from a different kind of church originally, and they've brought their kid to check of the catechism box or something like that. Our church is not like that with NT kids, let alone SN kids. For instance, we had a family bring their kid to a mid-week program without really telling anyone about the needs/goals, I think (maybe someone in charge knew, but it didn't filter down). This family was unchurched, and their son had big God questions, which, of course, he didn't ask (as far as I could tell) during the programmed activities. Sigh. And the programmed activities are not as flexible as Sunday AM. But also, the church doesn't really have a way for the parent to express this. This child would've probably been better served with 1. Coming on Sunday vs. the mid-week program and 2. the church ASKING the parents what they want us to know. But we'd have to know that the family had SN...to me, this is all very messy. I am in the minority big time about it.

But again, there are multiple families very happy with what they are getting from our church (youth group is another story for some of them), and the SN are diverse at our church--some autism, but other issues too, including mental health issues. I feel like some programs mentioned about other churches seem to think that all kids need sensory, etc., but some of these kids are not really that way (mine needed some of that, but too much, and they would just go into "play mode"). They might need breaks, but mostly they need materials at their level and a chance to marinate in them a bit in a more concrete way. One kiddo (who is seriously the SWEETEST kid ever) would talk you up all AM, but mostly he wants to know how everything in the universe works. If there was a such a thing as a Montessori-style Sunday School, it would be PERFECT for him. 

I do not feel like our church is prepared to handle kids with mobility issues or who have really profound needs or adults in the same boat--there aren't great places to deal with non-baby diapers. As for our service, it's loud. Everything at our church is loud. They are making an effort to try to get official parking lot helpers (carrying bags when they see a mom with a carseat, toddler, preschooler and not enough hands), or helping people with mobility issues. It's never been a problem to have people who will vocalize in an unexpected way in church services--our pastor says he can't preach over anything or anybody, so come on in.

So, acceptance is not an issue, but I am unsure how to pin down what's working and not working otherwise.

 

If you are from a liturgical church (Catholic, Lutheran, Episcopal, Orthodox).....you don't get any more Montessori based Sunday School than Catechesis of the Good Shepherd.  I can't express how amazing that program is.  It was very accessible to a lot of kids with special needs, but often they needed a buddy.  

[PeterPan]

43 minutes ago, kbutton said:

So, that's a pretty sad explanation of our church's ministry--ask someone else, and they might tell you glowing things.

What you described sounds pretty nice to me!

44 minutes ago, kbutton said:

I feel like some programs mentioned about other churches seem to think that all kids need sensory, etc., but some of these kids are not really that way (mine needed some of that, but too much, and they would just go into "play mode"). They might need breaks, but mostly they need materials at their level and a chance to marinate in them a bit in a more concrete way.

Yes, this! People make way too much over the sensory rooms because it's something they can look at and say woo we did something, and they DON'T make enough over what it would really mean to connect with the dc. Our library is talking about putting in a sensory room, so I asked a member of the board (who happens to live in my house, haha) WHY??? I just wanted stats, like will that sensory room ACTUALLY improve the ability of people with disabilities to interact with the library and participate in the library's mission? Or is it just the new fad? I'm not saying sensory rooms are bad, but they seem kind of a fad. I would just like to see data.

I think having a sensory room that is also the *hub* for the SN services really makes sense. It really does. But when people are like oh we put in a sensory room, we met the need, well not necessarily.

And as far as materials at their level, so true. My ds was aged out by the church without asking me and put into the next level up, when it didn't fit him, when the expectations were inappropriate, and they were like oh HE'S SO SMART!!! I'm like SO??? Of course he's smart. He's also like 2-3 years behind and behind academically and socially and spiritually and just not at all ready to interact on that level. But because he had memorized every Bible story book we ever read him, suddenly he's "too smart" to be where he fit developmentally. They could have ASKED. That arrogance, not asking, saying they knew, that just is no end of frustrating.

The concrete gig is so important. I don't think *everything* has to connect with our kids, but it would be nice if *something* did. These really varied presentations do tend to have something more concrete, something more visual, something with more movement, etc. I need to do more with my ds at home too. Just as a mom, I wish someone in the church was thinking on that level, asking what moms need at home. It's really hard to research EVERYTHING all the time. My ds has grown and could do more, and I don't feel really well-connected with resources to help him take his next steps. His steps are not the normal leaps, but he needs something. No one in church is even talking about that, because with most kids you can just throw ANYTHING in front of them and it's fine, where with my ds I can pull 10 devotionals from the library and NONE of them will work. He's at the level of needing to learn God exists, this is what he expects, love your neighbor, really concrete stuff, but he needs it along with some stimulating stuff like maps and Bible background history, that kind of thing that respects that he's not 4. And he needs it without heavy language demands. VBS stuff seems to fit pretty well and regular SS materials don't, not that I've seen. But that's a good point that VBS materials are usually like let's start at the beginning for kids who haven't been in church and let's drop language demands so we don't scare them off. Maybe that's why they're working, because they're aimed at a different market, lol. A church near us is going to run an AIG VBS and I'm kind of excited about that. He's ready to think about those issues.

Ok, I'll say another thing, because I don't actually know the op and where she's coming from. I've seen comments (from my larger circle of christian friends, I went to a christian college so I see these kinds of posts on FB in response to other friends posts, that kind of thing. Anyways, one pastor's wife in that sort of extended social circle popped out saying that there were *no* kids with disabilities not being serviced in their church or in the churches she knew of. Snort. That's the point. These are invisible situations, and churches don't realize how many people AREN'T COMING or when the kids DROP OUT of church. And when are the kids dropping out? Don't you kinda wonder what happens to someone like my ds in a couple years when he's too big to go to that "sensory room" but he's not paired and integrated enough to continue going to programs on his own? What happens to him? He'll drop out, just like probably most kids. I don't have stats to back that up, but I know people. Now I know kids who DO continue to go. I know a family who left like hot tomatoes after an incident. How do you do that if you're very involved? It's really ugly, but we're literally talking about whether our kids will be willing to go to church AT ALL. It's a much bigger issue, on the level of my one child. And I've met moms who are like I lost my son, he won't go to church anymore, and they're heartbroken.

38 minutes ago, Terabith said:

Catechesis of the Good Shepherd. 

Is that something they all do or something some use? 

[PeterPan]

1 hour ago, kbutton said:

Everything at our church is loud.

Sigh, I know. I've been looking at every church in a 40 minute drive, and it's literally every church. They might have an 8am quiet service. 

Now its also the case that we wouldn't have to attend that. These churches that have so many services usually have some kind of study groups running during the services, so we could just do small groups and skip the big service. I guess with ds I'm just trying to pinch hit for a while and get something working and hope some maturity sorts out the rest. But yeah, I went to one so loud it was giving me migraines through 32db earplugs.

[kbutton]

30 minutes ago, PeterPan said:

Sigh, I know. I've been looking at every church in a 40 minute drive, and it's literally every church. They might have an 8am quiet service. 

Now its also the case that we wouldn't have to attend that. These churches that have so many services usually have some kind of study groups running during the services, so we could just do small groups and skip the big service. I guess with ds I'm just trying to pinch hit for a while and get something working and hope some maturity sorts out the rest. But yeah, I went to one so loud it was giving me migraines through 32db earplugs.

Even Kids' Worship is loud, but most kids who have a buddy would be able to walk out in the hall or gym area during the noisy part with their buddy.

[kbutton]

35 minutes ago, PeterPan said:

What you described sounds pretty nice to me!

Lol, now I thought I said a lot of stuff that would drive you nuts. Too funny! 

I didn't quote the longer part, but yes, yes, yes. Yes some more.

[kbutton]

1 hour ago, Terabith said:

If you are from a liturgical church (Catholic, Lutheran, Episcopal, Orthodox).....you don't get any more Montessori based Sunday School than Catechesis of the Good Shepherd.  I can't express how amazing that program is.  It was very accessible to a lot of kids with special needs, but often they needed a buddy.  

That's cool! Are those things pretty adaptable from one denomination to the next?

I can imagine that many kids do need a buddy even with Montessori-based stuff, but I know quite a few in our church that would probably be fine without one if that sort of class was offered. 

Is this something that Peter Pan or anyone else can just buy, or do you need to be connected to a church that uses it?

[PeterPan]

27 minutes ago, kbutton said:

Even Kids' Worship is loud, but most kids who have a buddy would be able to walk out in the hall or gym area during the noisy part with their buddy.

So my ds is hypo-responsive and will sit in the noise and then have headaches from it. It's part of why we're using an aide now, so she can help catch that.

26 minutes ago, kbutton said:

I thought I said a lot of stuff that would drive you nuts. Too funny! 

I guess I'm getting desperate. I found two churches that could have worked in some fashion, but one gave both of us intolerable headaches from the noise and another we liked but are getting headaches I think from a radio tower. I don't even know what we're going to do. And that's nobody's fault, but I'm just stumped about what to do, sigh.

[kbutton]

24 minutes ago, PeterPan said:

So my ds is hypo-responsive and will sit in the noise and then have headaches from it. It's part of why we're using an aide now, so she can help catch that.

I guess I'm getting desperate. I found two churches that could have worked in some fashion, but one gave both of us intolerable headaches from the noise and another we liked but are getting headaches I think from a radio tower. I don't even know what we're going to do. And that's nobody's fault, but I'm just stumped about what to do, sigh.

That's difficult. 

How much difference in theology could you handle if you know the range of what your DS would be exposed to? Like, if they stick to really bare bones things, would it be worth looking at something more liturgical for a little while?  Maybe it would be worth looking at the Good Shepherd stuff, seeing if you are okay with it, and then visiting a church that offers it for a while. 

[forty-two]

1 hour ago, PeterPan said:

<re: Catechesis of the Good Shepherd>

Is that something they all do or something some use? 

Just some.  I'm Lutheran, and the only reason I've heard of it is because an Anglican blogger I read does it.  It's  Here's her posts tagged Catechesis of the Good Shepherd.

47 minutes ago, kbutton said:

That's cool! Are those things pretty adaptable from one denomination to the next?

I can imagine that many kids do need a buddy even with Montessori-based stuff, but I know quite a few in our church that would probably be fine without one if that sort of class was offered. 

Is this something that Peter Pan or anyone else can just buy, or do you need to be connected to a church that uses it?

Here's the website for it: https://www.cgsusa.org/about/default.aspx .  It does look like anyone can buy anything, although it wasn't intuitively obvious to me at first glance what, exactly, one would buy to diy it at home - there's a *lot* of options.  The "introductory books" category was manageable, though, and has stuff about the overall philosophy and approach.

~*~

FWIW, all the churches I've been at are just too small to have a dedicated SN anything.  But we did have four children with autism at my previous congregation, and the pastors worked with the parents to figure out custom options for each child, including modifying confirmation.  (I know that one child couldn't stand the noise of the blended service and did much better in the traditional service, which used an organ.)  And no one ever said boo to me staying in the class with my kids (which I did for several years, because of separation anxiety).  At this church, my kids *are* the SS class, and the teacher is really great about things like dd's being gf and such, and helping prepare ds for upcoming changes, and such.  In fact, in general at both churches people went out of their way to accommodate dd being gf, and my kids' lasting-longer-than-average separation anxiety, even though where we are now is stereotypically the sort of place that you'd not expect it. 

I guess the potential plus of a small place is that they have to ability to work with parents to design custom solutions for individual kids in a way that's not as possible for larger places, except maybe mega-large places with a dedicated SN team.  They don't need to have already planned for all the possible SN things - all they need is the willingness to be flexible - and they can learn from parents and tailor the particular things needed.  I know some small places aren't flexible, but some big places aren't either.  I don't think size necessarily correlates with flexibility - small places can be as willing to help with SN as large places.  And I think small churches have some unique flexibility advantages *because* of being small.

[kbutton]

11 minutes ago, forty-two said:

I don't think size necessarily correlates with flexibility - small places can be as willing to help with SN as large places.  And I think small churches have some unique flexibility advantages *because* of being small.

I agree. I know there are boardies whose kids are in the small but flexible kinds of churches, and I've read SN blogs where people experience that also. 

[Terabith]

Okay....Catechesis of the Good Shepherd.  It was developed by a disciple of Maria Montessori's named Sophia Cavelletti, based on work Maria Montessori did.  Most people don't know Maria Montessori was a devout Catholic.  She actually wrote rather a lot about it.  

Here's a link to their website.  https://www.cgsusa.org/  And, no....it's pretty rare, because it places very, very high demands on the catechists.  Before you start teaching, you have to complete 100 hours of training and create your own manual.  That prepares you for the first level, for 3-6 year olds.  Before you can work with the 6-9 year olds, you have to teach 3-6 year olds for three years, complete another 100 hours of training, and develop another manual.  Repeat again for 9-12 year olds.  Churches that want to do it have to both invest a fair amount of money and a ton of time creating materials.  The atrium for 3-6 year olds has a section for practical life, a section for geography (with a 3 dimensional map of Israel and another large, manipulative map of the city of Jerusalem), a section for the altar, a section for parables, a section about baptism.  There's also a prayer corner and some maxims and prayer cards.  Everything is very manipulative and hands on.  But it's amazing.  When my oldest was three, I walked in on her in the bathroom creating her own altar on the back of the toilet.  She took a doll cup and said, "This is the chalice that holds the wine that becomes the blood of Jesus."  She held up the paten and said, "This is the paten that holds the bread that becomes the Body of Jesus."  My younger kid at five, on a visit to the National Cathedral said to the priest afterwards, "You didn't do the epiclesis properly!"  My kids could hold astute conversations about parousia at six.  They did topical analysis studies between Old Testament stories and significant New Testament events.  Honestly, my kids learned more about the Bible and theology before they were 12 through atrium than I did getting my masters of divinity from an accredited seminary.  And my masters wasn't a shabby, insubstantial thing.  

It's a very rigorous, in depth program that respects child development.  But it requires significant investment from the congregation, both in terms of money and in terms of training and commitment of teachers to work there.  But we had a bunch of kids with (severe) ADHD, some with spectrum, a few with ID, a couple others with undefined emotional disturbance.  It's really, really excellent.  But it would be hard to adapt it to a church that isn't liturgical.  

ETA:  It also doesn't introduce any Old Testament until the kids are nine/ fourth grade, because they want the foundation to be on Jesus.  My kids knew OT stories because I read them Bible storybooks, but I think the theological premise of CGS is right.  

Edited March 28, 2019 by Terabith

[PeterPan]

5 hours ago, forty-two said:

the pastors worked with the parents to figure out custom options for each child

That's so nice! It was an assistant pastor who told me I should just let him scream. So I'm left with trying to figure out if the guy is an arrogant BUFFOON or if that's really the position of the church, kwim? It wasn't from the top, but it was so bad I just gave up. 

 

5 hours ago, forty-two said:

And I think small churches have some unique flexibility advantages *because* of being small.

That may be what's working about the current place we've been going, the one I can't keep attending because I'm getting headaches, sigh. But that's a good point. We walked in (congregation of maybe 80 on paper) with our aide and it just WORKED, right away, very easy, very comfortable. I said I need this and they were like sure, no problem. I try to get the music ahead so I can teach it to him, that kind of thing. 

Yeah, you can see why we don't want to change again. Again. But you're right, I don't know why I'd be looking at mega churches when small churches are actually a super easy fit. Back to the maps, sigh.

[PeterPan]

5 hours ago, Terabith said:

But it would be hard to adapt it to a church that isn't liturgical.  

It sounds so fascinating, I think it would be worth a try. 

 

5 hours ago, Terabith said:

It also doesn't introduce any Old Testament until the kids are nine/ fourth grade, because they want the foundation to be on Jesus.  My kids knew OT stories because I read them Bible storybooks, but I think the theological premise of CGS is right. 

That is really interesting!!! There's such a heavy emphasis on, well being heavy, right now in evangelicalism. One church we attended had my ds learning stuff about I don't know what, it was really heavy. (God hates this, wrath, whatever) I'm like good night he's 5, tell him to love his neighbor and not lie! Like don't even get me started on it. It's popular names and people are like oh but it's based on systematic theology and it's true!! Well fine, it's true, but it wasn't respecting what is appropriate to children at all.

[Ausmumof3]

13 hours ago, PeterPan said:

So my ds is hypo-responsive and will sit in the noise and then have headaches from it. It's part of why we're using an aide now, so she can help catch that.

I guess I'm getting desperate. I found two churches that could have worked in some fashion, but one gave both of us intolerable headaches from the noise and another we liked but are getting headaches I think from a radio tower. I don't even know what we're going to do. And that's nobody's fault, but I'm just stumped about what to do, sigh.

Do any of the churches have an outreach program where someone could come and join you for private worship at home?

[Ausmumof3]

14 hours ago, PeterPan said:

So my ds is hypo-responsive and will sit in the noise and then have headaches from it. It's part of why we're using an aide now, so she can help catch that.

I guess I'm getting desperate. I found two churches that could have worked in some fashion, but one gave both of us intolerable headaches from the noise and another we liked but are getting headaches I think from a radio tower. I don't even know what we're going to do. And that's nobody's fault, but I'm just stumped about what to do, sigh.

They don’t use those scent diffusers do they?  Some do and they are horrible headache triggers!

[ktgrok]

14 hours ago, forty-two said:

 

I guess the potential plus of a small place is that they have to ability to work with parents to design custom solutions for individual kids in a way that's not as possible for larger places, except maybe mega-large places with a dedicated SN team.  They don't need to have already planned for all the possible SN things - all they need is the willingness to be flexible - and they can learn from parents and tailor the particular things needed.  I know some small places aren't flexible, but some big places aren't either.  I don't think size necessarily correlates with flexibility - small places can be as willing to help with SN as large places.  And I think small churches have some unique flexibility advantages *because* of being small.

Truth. It really is that listening to parents and willing to be flexible that matters more than "special programs". For my oldest i needed to be able to be in his Sunday School room. For years. Later, modifying the age of first communion would have made a huge difference, but I didn't think to ask. I bet if I had, they would hdave done it, and his anger about not being able to have communion is a big reason I stopped bringing him. (he sucker punched a random person in line for communion and that was the final straw for me - but he wasn't diagnosed yet so yeah). Some other thoughts along those lines....

Having a special needs notice in the bulletin and on the website that says the church welcomes all god's children, and to please ask for what your family needs. Basically something stating that they are willing to be flexible, maybe a reference of "ask and you shall recieve", lol. Take away that fear of asking. 

Maybe some pews or parts of pews set aside for those that have special needs. Like, one pew in the back or wherever is the quietest area. One part of a pew up front for kids that need to be closer to see/focus. A few ends of pews for parents who know they may need to make a quick exit. 

Maybe a program where elderly or single or whatever can volunteer to wear special "helper" badges so if a mom is struggling in the pew with kids they can turn to a "helper" for an extra set of hands/patience...that might be the helpers have some coloring books/quiet toys with them, or that they help with the mom's NT kids and stay in the pew with them while mom walks outside with the special needs kid. 

Having the service piped into an area where mom can still hear it while dealing with special need kids. And if there is a participatory part of the service, like communion, sending someone in to get them at that time, or bringing them the offering plate, etc. I can remember being stuck in the cry room and no way to get my offering to the plate. Heck, just have a box there to stick it in. 

For DS6 right now, they got gluten free communion wafers, which made me cry. And his sunday school teacher said to just send her a link and she'll order him a special snack to have that is GF, whatever he wants. 

Being willing to let the parent know the music ahead of time, so they can practice. I asked for that for my DD with dyslexia, as she likes to sing along but couldn't keep up reading the music from the hymnal and got blown off (at our old church, not this one). 

Another issue we had at one church was them requiring each child to read aloud during sunday school, despite me saying my DD had dyslexia. Current church has kids raise their hand if they WANT to read. 

Oh! And a culture that is clear that they get that some parents, due to special needs, will attend without their child or family and that's okay. So if a kid just is not ready for that environment or mom needs a break and comes without the rest of her family having people be understanding and not giving the side eye or insisting she bring the kid. Having multiple services so parents can switch off helps. 

 

 

Edited March 28, 2019 by Ktgrok

[ktgrok]

OP, if you wanted to try a more liturgical church just to see how it fits, do ask first about incense. Seems like you might be sensitive to that! It gives some people a headache. Most only use it during certain services but doesn't hurt to ask. Overall though, services are no where near as loud as you are describing and neither is the children's program. 

Also, most Episcopal churches are set up so that you take the kid to their Sunday school  (often called church school) classroom before the service starts. They stay there during the first half or so of the service, during the bible readings and prayers and sermon. Then they come in as a group for the second part, the communion part. Sometimes they gather at the front first for a children's sermon, then they go sit with their parents. For some kids this is a good way to break up the time, so neither part is too long for them. For others the transition would be hard I imagine. 

[PeterPan]

2 hours ago, Ausmumof3 said:

Do any of the churches have an outreach program where someone could come and join you for private worship at home?

He really can attend church. It's going really well with the worker and it's clear where he'd become independent and able to fade! I don't want to give up on that.

1 hour ago, Ausmumof3 said:

They don’t use those scent diffusers do they?  Some do and they are horrible headache triggers!

Good question. No, I get headaches from various towers, and this church turned out to be near a radio tower I didn't know was there. I knew there were other towers, but they were farther away. It's not just this place affected. There's a corn maze near there we had done and every time I went I was getting a bad headache and couldn't figure out why. I hadn't driven up the road to see the radio tower. 

I'm weird as the hills, yes.

[PeterPan]

45 minutes ago, Ktgrok said:

(he sucker punched a random person in line for communion and that was the final straw for me - but he wasn't diagnosed yet so yeah)

Yup, btdt. It's what started our journey to find new churches.

46 minutes ago, Ktgrok said:

Maybe some pews or parts of pews set aside for those that have special needs. Like, one pew in the back or wherever is the quietest area. One part of a pew up front for kids that need to be closer to see/focus. A few ends of pews for parents who know they may need to make a quick exit. 

When you describe it that way, it's so normal/easy/obvious. But no, a church totally turned me down for that. Too inconvenient. So able-bodied people who didn't need to be there sat in the back and I couldn't have a safe space for my ds. Like literally, the back was CROWDED with these people who just wouldn't move up. 

So whatever. It's just wild to me to hear some churches being so flexible and the one we were at was like closed doors, closed doors. And it was the way I was raised. It's embarrassing. 

I love your whole list btw. In my idealism, yes that's how easy I thought it should be. Now adays it's not. They have policies and worries and I don't know what and it just gums up what could have been simple.

[ktgrok]

7 minutes ago, PeterPan said:

Yup, btdt. It's what started our journey to find new churches.

When you describe it that way, it's so normal/easy/obvious. But no, a church totally turned me down for that. Too inconvenient. So able-bodied people who didn't need to be there sat in the back and I couldn't have a safe space for my ds. Like literally, the back was CROWDED with these people who just wouldn't move up. 

So whatever. It's just wild to me to hear some churches being so flexible and the one we were at was like closed doors, closed doors. And it was the way I was raised. It's embarrassing. 

I love your whole list btw. In my idealism, yes that's how easy I thought it should be. Now adays it's not. They have policies and worries and I don't know what and it just gums up what could have been simple.

Ugh, the policies!!! Security theater, my husband would say. Not really safer, just looks that way. 

I tried a mega church ONCE. I couldn't even walk my son into the kids room...had to stay behind a half door. I was given a pager though and they PROMISED that if he cried they would page me. I told them that he won't calm down on his own, that no matter what they were to page me if he cried or got upset. I mean, why have the pager otherwise? Oh, plus they said they would flash his number (on his badge and pager) on the screen int eh church if he needed me. So I left him. And 15 minutes into the "service" that turned into a rally for the Republican Party (not kidding...it was all politics, no God) I left and went to check on him. He was in a corner crying his eyes out. No one even talking to him, let alone soothing him. And no one had paged me. 

Give me an "insecure" small classroom that lets me stay with my kid if he needs it, that will ACTUALLY come find me, that will let me sit on the darned floor in the aisle if he needs it over that crud with their fancy pants pyrotechnics or whatever. 

Our current church, we tried the nursery for DD2 once. I wasn't sure she was ready to be left and I refuse to have my kids hate church, which I explained nicely. They said, "Ok. Do you want to stay with her? Or stay part time and then leave? Or leave her with us and us come get you if she doesn't settle in a few minutes - some kids are like that but you know your kid best. Tell us what you want to do. She could stay just for 10 minutes and increase. Whatever you want." I nearly cried in relief. (and I tired leaving her, she didn't settle, and they DID come get me, but also walked her around outside, talked to her, etc while waiting for me)

[kbutton]

1 hour ago, Ktgrok said:

Maybe some pews or parts of pews set aside for those that have special needs. Like, one pew in the back or wherever is the quietest area. One part of a pew up front for kids that need to be closer to see/focus. A few ends of pews for parents who know they may need to make a quick exit. 

Maybe a program where elderly or single or whatever can volunteer to wear special "helper" badges so if a mom is struggling in the pew with kids they can turn to a "helper" for an extra set of hands/patience...that might be the helpers have some coloring books/quiet toys with them, or that they help with the mom's NT kids and stay in the pew with them while mom walks outside with the special needs kid. 

I love your whole post, but I wanted to highlight this. The bigger the church, it seems the weirder they are about seating! Our church is great about coming and going--it's not really disruptive to anyone and people do come and go more than is typical in Baptist-ish churches. Cool. But, it's so dang hard to find your family if you're not walking in together from different parts of the building, and no one helps with that. If it's crowded, they don't really help you find a seat unless it's Easter or something. People are trained to pay attention to that kind of thing on Easter, but the rest of the year, they have to make announcements from the pulpit to get people to move over and such. I think part of the issue is that we have a big choir and a praise band, and after the music, those people need to put their instruments away, find their Bibles, and then either go to a class (we have two services) or slip in to the auditorium, so a lot of those people get end pews ahead of time. It's very frustrating though to figure out what seats are "left" by trial and error. Drives me nuts, lol!

I love the help badges idea. Love it!!! I think that's the kind of thing our church is trying to do with parking lot help. We don't have kids in the service though, so our mileage wouldn't be great. But I think it's a great idea for a lot of churches. 

[ktgrok]

1 hour ago, kbutton said:

I love your whole post, but I wanted to highlight this. The bigger the church, it seems the weirder they are about seating! Our church is great about coming and going--it's not really disruptive to anyone and people do come and go more than is typical in Baptist-ish churches. Cool. But, it's so dang hard to find your family if you're not walking in together from different parts of the building, and no one helps with that. If it's crowded, they don't really help you find a seat unless it's Easter or something. People are trained to pay attention to that kind of thing on Easter, but the rest of the year, they have to make announcements from the pulpit to get people to move over and such. I think part of the issue is that we have a big choir and a praise band, and after the music, those people need to put their instruments away, find their Bibles, and then either go to a class (we have two services) or slip in to the auditorium, so a lot of those people get end pews ahead of time. It's very frustrating though to figure out what seats are "left" by trial and error. Drives me nuts, lol!

I love the help badges idea. Love it!!! I think that's the kind of thing our church is trying to do with parking lot help. We don't have kids in the service though, so our mileage wouldn't be great. But I think it's a great idea for a lot of churches. 

At our current church there is plenty of space, so not much of an issue. But at our old parish it was huge, very packed standing room only most of the time. And they had many ushers at every service who would find you a seat. Usually older men, and I SWEAR most of them were former military or secret service or police, lol....they took their ushering SERIOUSLY. Like, no one messed with them if they asked you to shift over to make room 🙂 I really liked also that they felt needed and had a way to serve, despite being in their senior years. 

Once they did get over eager though..I had a fussy baby so was wearing her in the carrier and pacing around the back of the church. The way it was built the foyer was open to the sanctuary so plenty of open room to pace, kids sometimes would sit on the floor and color, toddlers toddled, etc. And so I'm back there, and this guy thought I must just not have a seat, so he went and found me a folding chair from who knows where in the building and set it up for me 🙂

It was totally not needed...I had a seat was just pacing to quiet the baby, but that's how serious they were about finding people a place to sit, lol. 

Edited to add: That's another thing...letting people know clearly that it is Okay to walk around in back, or move to an outside aisle and stand, etc if kids need to move. 

Edited March 28, 2019 by Ktgrok

[Storygirl]

PeterPan, I've lost track of the post where you bring up your need for a developmentally appropriate explanation of Christian concepts. Have you looked at Leading Little Ones to God by Marian Schoolland? You might know it, because it's an oldie but a goodie. Explanations of doctrine written to children but not in a condescending way. So it's fine for a rather wide age span. A five year old could listen to it, but it would also be fine for a 10 year old.

 

[PeterPan]

57 minutes ago, Storygirl said:

PeterPan, I've lost track of the post where you bring up your need for a developmentally appropriate explanation of Christian concepts. Have you looked at Leading Little Ones to God by Marian Schoolland? You might know it, because it's an oldie but a goodie. Explanations of doctrine written to children but not in a condescending way. So it's fine for a rather wide age span. A five year old could listen to it, but it would also be fine for a 10 year old.

 

What an interesting idea! I was just thinking (like literally just) that I needed to find something new, something less focused on narrative, which isn't a strength for him, and something more conceptual. And you're right, I have that! I used it with dd years ago. If you want a laugh, I first read it in Russian years ago when I was there living with a family. I ended up reading it to the little 7 yo before bed, hehe. I must have been awful, because she always fell asleep really fast.