Church stuff

[PeterPan]

Is it acting like my ds is a special snowflake to ask the church to convene a team to help my son attend, or is it just going through the normal pathways?

I just feel like I've gotten no traction asking for help in quiet ways. I asked for the songs ahead of time so I could teach them to ds (remember he has apraxia and can't sing, so he struggles to participate for half the service) and sometimes I get them, sometimes I don't. I asked for a buddy/aide for him, and they said oh well that should happen naturally, pray. He was surviving in the previous SS and then they changed it without asking and he refused to go. Tried Awana, but they placed him too high.

I just feel like I'm going about this all wrong, like I'm not getting the right person to help me. I need someone who can tell everyone else yes, open these doors, stop screwing around, help her, be more considerate, this must happen. I keep thinking of things that could help, and there's even a book on it that says stuff similar to what I'm saying. (flex placements, provide buddy/aide, etc.) and nothing happens.

What is the normal procedure for asking for these accommodations or asking for something to really HAPPEN? I must not be asking the right people. I want this church to work, but it's frustrating. And yet, if I go be direct and say Hey, could we convene a team of the pastoral staff, the SS director, etc. to make a coordinated plan for how we can help ds participate better, is that saying he's a special snowflake and I think too much of him? Like to me, I think there could be a lot of flex offered. I think he could go in a preschool nursery and play while a buddy pairs with him. I think they could ease him into things. I think the music director could give me the list of songs directly rather than going through the secretary, who hasn't been getting it done consistently. LIke I don't have them for this week. WHY?? Do they not CARE how hard I'm trying to get him into church and that little things like that make a BIG DIFFERENCE?? Do they not CARE about my son? 

In reality, the answer is obvious. They don't. If they did, they would have already offered this. But I wanted it to work. It's a small church and I can fit in here pretty easily. It doesn't offend us in any way (except their antiquated adherence to KJV-only, which I suspicion reflects in-church fighting not actual views of the pastor). So do I just need to ask better for help or move on? That's the real question of the day. Sigh. Another Sunday.

[mumto2]

I am posting because we are on the way out the door for church and I am not sure that I will find your post later.

Quick advice is talk to the pastor face to face or their spouse.  Small church so right to the top.  They need to know you need help.

[Kanin]

I would definitely ask for a meeting to discuss how to best support your son - and if they are wishy washy about that, or if you have the meeting but people aren't willing to help - then I'd go somewhere new. After all of your experiences with good and not-good providers, you know that life's too short to waste on a bad situation. If you really really love the church, that's one thing, but if you're not that attached, you might be better off going somewhere else.

[Pawz4me]

I'm sorry you're having trouble with this. There were many reasons we left organized religion, but the way DS19 (then a preschooler) was treated was the last straw. The church we were in at the time wasn't a good place for him at all, even though he was (is) very high functioning and had minimal issues/needs compared to many SN kids. That was close to fifteen years ago, though. I sure hope awareness has improved. 

[PeterPan]

Well we went today but late, after the music was over, and sat in the back. We hadn't done that before. He only had 30 minutes to sit through that way, and he did dramatically better. The back is a small SS room that is opened to the sanctuary but can be closed off. There's room to walk around, do pushups, anything. When we started to walk out to the main area he started flipping out. It was so dramatic, it became obvious it was the noise, something I hadn't picked up on. 

So then I talked with his old SS teacher who said she had been thinking (separately) that they ought to have a class for kids with disabilities because they have quite a few. So I talked with the asst pastor and we're going to have a meeting. It may be mud, we'll see. There are just so many idiotic biases and issues to deal with. Like when they say oh well he's better when he sits with so and so MAN, I'm like no joke, he's paired with that man. And it's UNSAFE to have his whole paradigm be I comply for men but not women. Not safe. And he's PAIRED with that man. But oh let's just say it's because mom is crap. I get so tired of that. 

I think maybe they need to read a book or article or something before we meet. Otherwise, I'm gonna be talking through mud.

[Kanin]

I'm interested to hear how it goes! Sending everyone an article is a good idea :)

[mumto2]

Sending the article before the meeting sounds like a great idea.

[PeterPan]

Ha! I found my thread from a while back! https://forums.welltrainedmind.com/topic/668916-autism-at-church/?tab=comments#comment-8017490  Why send one article when you can send 9?  LOL I must have been very tired/overwhelmed/something, because I wasn't bridging from this is what could/should happen to THIS IS HOW WE MAKE IT HAPPEN. So maybe now we can do some of that! I think reading the articles might blow their mind. 

[Baile]

Churches all work so differently that it's hard to know who the best person is to speak to about this kind of thing, or how best to approach it. In one way, I can see approaching the meeting with "Let's discuss how the church can support children with disabilities" would go over better than "... support my son". At the same time, it sounds like your son has some unique needs that may not be addressed if they institute a blanket system for supporting kids with disabilities.

Right now, it doesn't seem like anyone thinks that your son's needs are their responsibility. Does that sound right? His previous SS teacher, if she's been thinking about how to help him and other kids, may be the exception. Holding a meeting may help to clarify who is actually responsible, especially if people have been shying away from taking on the responsibility because they don't feel qualified. Another way to go about it would be to make people care by directly asking them for help and make them feel qualified to help by telling them exactly what you need. The music issue would be a no-brainer at our church - I would just ask the music director for his help. He'd likely be flattered that someone cared enough about the musical selections to want an advance copy!

In our church, the SS director has been my go-to person for anything related to my kids, especially my Ds8 who also has some unique special needs. She has basically taken on the responsibility of ensuring that all kids in our church are able to participate fully in SS, VBS, special events, etc., and does have some experience working with kids with special needs. She and I have worked as a team to make sure Ds8 always has an appropriate buddy, to make sure his SS teacher understands his needs, and to handle any issues that come up.

[PeterPan]

37 minutes ago, nwahomeschoolmom said:

I'm sorry you are going through that...I'd be upset too.  What you are asking for is totally reasonable and not at all snow-flaky.  They should really be able to accommodate a list of songs (at least most of the time) and a formal buddy/aide.  I'm surprised they aren't being more helpful.  Maybe consider trying somewhere more interested in helping out kids with special needs (after talking to pastor to get his take)?  For example, there is a church around us that has a special needs ministry and even offers a date night for parents called Recess. http://99balloons.org/attend-a-recess/  .  Maybe you can see if there is a church around you that has the Recess ministry?  I bet they would be more educated about how to help?  Just an idea...

We are Eastern Orthodox so its a totally different situation...same liturgy each week, no new songs (well there are but hard for a child to notice...), you don't have to sit and can move around if you need to.  If you can sing "Lord, Have Mercy" you can participate most of the service : )

That's the great irony. I'm not really into repetitive choruses, but they're really good for ds, sigh. Words up on the screen could be good for him too.

This church is talking like they *might* start a disabilities SS class. I think if he could have the aide/buddy for a year, he'd probably move beyond needing it.

31 minutes ago, Baile said:

Churches all work so differently that it's hard to know who the best person is to speak to about this kind of thing, or how best to approach it. In one way, I can see approaching the meeting with "Let's discuss how the church can support children with disabilities" would go over better than "... support my son". At the same time, it sounds like your son has some unique needs that may not be addressed if they institute a blanket system for supporting kids with disabilities.

Right now, it doesn't seem like anyone thinks that your son's needs are their responsibility. Does that sound right? His previous SS teacher, if she's been thinking about how to help him and other kids, may be the exception. Holding a meeting may help to clarify who is actually responsible, especially if people have been shying away from taking on the responsibility because they don't feel qualified. Another way to go about it would be to make people care by directly asking them for help and make them feel qualified to help by telling them exactly what you need. The music issue would be a no-brainer at our church - I would just ask the music director for his help. He'd likely be flattered that someone cared enough about the musical selections to want an advance copy!

In our church, the SS director has been my go-to person for anything related to my kids, especially my Ds8 who also has some unique special needs. She has basically taken on the responsibility of ensuring that all kids in our church are able to participate fully in SS, VBS, special events, etc., and does have some experience working with kids with special needs. She and I have worked as a team to make sure Ds8 always has an appropriate buddy, to make sure his SS teacher understands his needs, and to handle any issues that come up.

You're right, somehow we've fallen through the cracks. No one seems to think it's their responsibility to help us, not in a way that can make things happen. And yes, I agree there's this contradiction that a ministry for disabilities sounds really nice but right now all I want is my ds to be able to go to church. These other people aren't being squeaky wheels. I mentioned that other people had kids with issues and the official blew it off, like oh that kid sits in church now, that kid is fine. It's like speaking to a ROCK, I swear. I said buddy and they're like well maybe for a while and then the buddy/aide could wean himself. I'm like, hello you don't HAVE to wean him. The dc will walk away from the aide and kick the aide out when he's no longer needed, my lands.

I just, I really don't know if I can deal with these attitudes. What kind of person gets asked for help with a disability and then says oh I know about that when they DON'T??? They clearly don't. Somebody who thinks they do. I just don't have the social thinking to imagine what is going on in their heads.

Well foo! I found a church in Akron that has a ministry with services just for autism!! Totally amazing. Just way too far, like 3 hours, lol. 

[PeterPan]

Just for anyone else who is looking, I found a website Key Ministry that will help you connect with churches that have disability ministries. We'll see if I find anything through them. You fill out a form and they get back to you. Apparently it's a consulting service for churches trying to develop a ministry program. They also have an amazing booklist. http://www.keyministry.org/resources-for-families

[kbutton]

There are free Kindle books from Joni and Friends on church disability ministries and the various ways they can be structured. Also a free website, though you have to register for it. http://www.joniandfriends.org/church-relations/starter_kit_signup/

One thing about disability ministry stuff that is difficult is that many people don't agree on what experience they want their kids to have. It can be like trying to get homeschoolers to do something as a group--herding cats. And SN families are cats with lots of wounds and triggers from bad experiences. Also, some families have SN kids but have their heads in the sand (we have a fair amount of that at our church!). 

The Joni and Friends books do talk about different kinds of disability set ups--inclusion vs. separate classes, etc. Physical vs. developmental. Lots of angles. They also have a focus that churches are responsible for helping kids learn to understand matters of faith to their own individual potential, but I know some families would rather do that at home and have their kids be included socially, etc. at church. So, it's not like everyone is going to be on the same page from the get go. You might have to wade through some of that.

[PeterPan]

Yeah, I think that's the thing. I don't know that I have tons of energy/enthusiasm to contribute to this, and I think you're right that people could have very different wants, let alone needs. I think at this point I'd rather just find a church farther away that has an autism ministry and go there, even if it's a drive. Because, the more I think about it, the more I realize he might do really well in a different setting, even if someone else in the church is fine mainstreamed. The more I think about it, the more discouraged I get about the potential for this church to help us. 

I'm gonna googlefu and network a bit and see what I can find. Before I was looking for someplace *I* fit in where he could survive. Now I'm looking for someplace where he fits in. Because, frankly, if you can be in a church over a YEAR and not have anyone extend themselves, then you're not gonna see the love of God extended to you through that church, no matter what they do. They don't get it. They don't get that taking the time to help him and know him WAS serving Jesus. They ignored him for a year and they have a ministry set-up that makes it easy to ignore and miss people and have people fall through the cracks. So I'm probably gonna widen my net and walk, because frankly at this point it couldn't get much worse. It could, but not hardly.

[PeterPan]

Ok, I'm widening my net here, possibly out of my comfort zone (possibly nothing, probably, lol) and I'm finding there ARE indeed churches in the big city that offer, right on their website, links to a SN coor, statement that they WILL PROVIDE buddies, and that they have alternative placement classes for those who need it. So I'm just gonna start emailing and visiting, because frankly it can only go up. I think for right now maybe I'm ready to be with somebody who says they want my child to be there, that they'll make things happen, not the place that doesn't notice and then has no clue and says it's not convenient to meet.

[PeterPan]

Well I've been sweating this all week, sigh, like to the point of just utter physical exhaustion. I'm pathetic. Anyways, I finally decided that if church was starting to feel like a bad dating relationship that it was ok to just maybe go somewhere else for a week or break up. Like it's ok. And my dd told me to think like a college student and go church hop, lol.

So I finally got brave and left a message with the SN director at a big (and I do mean BIG, like crazy big) church in the big city. Turns out they have a program so extensive it makes my eyes pop. I had NO CLUE. She's saying they have sensory rooms, buddies with ratio of no more than 1:3 (just depends on the support level the dc needs), and they funnel everyone with SN into a particular round of the children's services where they make this happen. 

So all the flex I thought, like have a worker and be able to leave for a break, come back, etc., they try to make happen. AND they train their workers, like seriously train. Like they go to conventions and trainings with a major ministry for this and they train all their people and many people work in the field. And they've been doing it 20 years. 

Yup.

So I'm gonna try tomorrow, sigh. I go with him the first time, so I'll see everything. Then, if it's a good fit, they do intake forms and set you up with a plan for after that. It's early, and it's a drive. But they're trying to provide so much support it ought to work. They're committed. It's at least worth a TRY. 

Ok, so I'm scared, lol. I have no clue. This church is BIG. Like uber thousands of people. You check your kids in by computer and print out badges. But on a personal level, down to the kid, it seems like they're nailing it. Really blows my mind. 

Guess we'll see how it goes. Compared to being told he should just stay out of part of the service, I guess we can only go UP. 

[Arctic Bunny]

I’m so curious! How did it go?

[PeterPan]

I'm still trying to figure out? I think I'm exhausted. I could hardly sleep. 

It was basically everything you thought they could provide. They had a sensory room with low lights, bins of sensory stuff, a cave. They had quite a few workers (4-6) for a number that is typically 5-7. They could keep you in that room they entire time or take you out only for the components that worked for you. Their cave was AWESOME and I need to build one, mercy. Someone even brought in a therapy dog that they got to pet for 20 minutes and apparently the dog comes pretty frequently.

Downsides are that ds is atypical even for this environment. All the other kids were non-verbal. He benefited from the sensory space and left much calmer than he has ever left church. The very loud kid worship time takes up almost 40 minutes of the 90, so he spent a long time hanging, waiting for the teaching portion to begin so he could be taken out with his buddy. That part was in a large auditorium, and he did maybe 15 minutes and was toasted and asked to returned. Actually he asked earlier and we held out. At that point he needed more sensory break time to get his body calm. He couldn't tell them, so the workers didn't know. They were trying to engage him, and I finally said hey, it looks like you need a break, and off he went.

-People are confused why he doesn't self-advocate when he seems so verbal. It would take time for workers to realize the deficits.

-It's not inherently or initially a mainstream placement. He can try being included, but if he wants to leave, he would leave. So it would be sort of a spiral, where I was really pushing for increases in skills on his parts, more accommodations on the church's part, so that he could work toward a comfortable mainstream placement.

-Volunteer workers, even when trained, are not necessarily going to be able to do the support ds needs at the level I want.

I concluded that he is very hard to place, even in a church that is TRYING to offer signficant supports, where they're trained, where they go to conventions. I think the things I want are better done by a trained aide, someone who is being paid, someone who will make data and be able to increase demands very carefully. Not having demands is not good enough, and volunteers are not equipped to do what it takes to make demands other than very modest redirecting. They get around all behaviors by making zero demands except for safety. Ds can handle more than that.

Maybe I'm still processing? I'm VERY glad I went, and I may go to more churches that have these ministries if I can find them. That was really important to see him in other settings, with other kinds of supports, and go ok this is still what's there, this is him, even with supports this is what happens. I wrote everything out for my behaviorist in a total brain dump, and I'm gonna let her see what she sees in it. I think it let *me* see what my expectations were and realize ok this level of person can do that type of support, this can't, he can function well in this space but not that, etc. So we keep learning and trying. I think I have very high expectations. Maybe they're unrealistic. I mean, I'm saying I want someone who needs significant support to be able to go into a class where he doesn't have enough language to participate completely and be chilled and challenged. And the higher demand settings are so high. It sorta made me wonder if there was something in-between. It let me see my assumptions, because I realized that even though he was calm and chilled there I wanted MORE.

[freesia]

I'm glad you had a better experience. 

Small churches can be great for special needs, but can also be tough. I grew up in a big church and even as a pastor's wife it has taken me years to understand some things. A small church runs on volunteers and the level of support they can provide depends on those volunteers. It may not be that they don't care, it may be their outside life is so full of their own stuff and they have added this on and they just don't have the headspace to fit think about your ds during the week. Do you spend extra time thinking about other children you know?

if the music director is a volunteer, the music may be pulled together last minute or the music director had family and work obligations that mean the just forgot. Again it is not bc they don't care.  Most volunteers are doing it on their own time and have a ton of other things on their plate. 

Your son is a special case, you shouldn't ever feel you can't ask to figure out a plan. That's fine. Just try not to take heir response personally. Your ds's issues are huge in your life, others don't know or understand but usually they are doing their best and don't mean to not be supportive. 

[Kanin]

Whew, what a whirlwind! I understand about driving yourself crazy thinking about something too much... right there with ya right now. 

I'm not sure if this is an option, but could he take a few months break from church? It sounds like you've got a lot of good stuff going on with supplements, getting new evals, etc... maybe your brain needs time to process everything you've been doing lately. 

Sorry if that sounds lame, but just reading what you've been writing, you sound like you could use a breather :-)

[kbutton]

I am glad you had a good experience even if it turns out that your expectations are still changing.

It sounds like a potentially GREAT place for him to have an aide with some of your funding. I think an aide you hire with a good ABA plan could potentially make this situation into the middle option you are looking for.

Are you on the DD waiver list waiting list? I imagine you can use DD waiver funds for aide for church.

[PeterPan]

15 minutes ago, Mainer said:

Whew, what a whirlwind! I understand about driving yourself crazy thinking about something too much... right there with ya right now. 

I'm not sure if this is an option, but could he take a few months break from church? It sounds like you've got a lot of good stuff going on with supplements, getting new evals, etc... maybe your brain needs time to process everything you've been doing lately. 

Sorry if that sounds lame, but just reading what you've been writing, you sound like you could use a breather :-)

He was already out a lot of weeks and it's hard to have any momentum with him. Like if we lose it, then he has a new routine and doesn't want to change. But I hear you. And the other thing I'm realizing that has changed over the last year and a half, since we started with this church (the one that was so hard to get to work) was just HIM. He went from really scary aggressive, with us just really struggling on so, so many levels, him struggling to communicate and how he felt and self-advocate, everything, to us like well of course you want to be with him, he's Zen, he's awesome. So people are like why are you here, but they don't understand what it was like 6 months ago. And it takes time to realize that even though he is verbal, he still really legit needs these supports. He really legit needs them.

Yes, life has been a little crazy, and this week everything is gonna go beyond crazy. We have a team meeting this Thursday to discuss changing his disabling condition for his IEP. If we win that in the ultra-miracle (one day, one meeting, boom done), that would be amazing. It would be the right thing, and it would be amazing. It would almost double our scholarship, giving us more access to services (speech, ABA, etc.). So yeah, lotsa stress right now, lol. We rest after it's over though, sigh.

14 minutes ago, kbutton said:

I am glad you had a good experience even if it turns out that your expectations are still changing.

It sounds like a potentially GREAT place for him to have an aide with some of your funding. I think an aide you hire with a good ABA plan could potentially make this situation into the middle option you are looking for.

Are you on the DD waiver list waiting list? I imagine you can use DD waiver funds for aide for church.

Now THAT is a mind-boggling idea. I hadn't even thought of that, lol. I've got another provider in the big city I'm talking with hopefully Monday. They have RBTs, and if they had someone available on Sundays who wanted to do it, yeah that could be astonishing. LIke you're saying, this is not forever. And you're saying what I concluded as I debriefed with my dh. I think my GOALS are so high and my expectations so high (because our focus is gaining skills, not just keeping him out of trouble), that really need needs to be a paid person. It takes a paid person to make demands, remember the exact amount of the demand last time, gradually increase it, etc. And you're right that a location like this, with a sensory room, a therapy dog, the whole nine years is the ultimate place to nurture those skills. 

So if I talk with that provider on Monday, I could put that on the table. I have a bit of a headache. I don't know if I'm unbelievably exhausted or if it was that tiny radio tower some distance away. I'm that sensitive, sigh. It's probably the tower. But I really, really like that idea. 

Does that *offend* people if they have volunteer workers and you bring in a paid RBT? I mean, it's kind of weird. It's like you don't appreciate their efforts or don't think they were good enough. But it's the opposite. I think it's really sweet and I wouldn't want to over-extend them. I think ds needs more of a data-collection, ABA-style let's grow some skills approach. He could totally, totally get there. And to expect volunteers to do that is just too much. It would be a different worker every week and he'd warm body it. Whereas with a worker he could know the plan and they could push back and stretch him. These volunteer workers will never do that. I think I need the RBT no matter where I'm trying to go. And if I have the RBT, the rest is just bonus. 

Yes, I got him on the county waiver list wait list. I was told the state will be revamping the system. He's now on all three lists for good measure. An individual needs to qualify under medicaid (income, financials), so until he is 18 and counted on his own income, he won't qualify. If he qualified under medicaid or we had astonishing need, I think they would have done something sooner. They have some flex, but that's where it's at. He'll begin transition services at 13, job mentoring services at 14, etc., but nothing from medicaid probably till 18.

[PeterPan]

20 minutes ago, Mainer said:

... just reading what you've been writing, you sound like you could use a breather :-)

PS. I took a mini vacation in February with him before all this IEP stuff got crazy. I knew it was gonna be hard. I didn't know it was gonna get THIS stressful, but I knew. Thankfully it seems to be coming together,, so we'll see. So maybe after this week I'll be dancing jigs and lighthearted. :)

[kbutton]

20 hours ago, PeterPan said:

So people are like why are you here, but they don't understand what it was like 6 months ago. And it takes time to realize that even though he is verbal, he still really legit needs these supports. He really legit needs them. 2e bites again, lol! I remember advocating for my son with APD once in a program that is for the gifted and has lots of 2e participation. We had a new teacher, and she made some rather ignorant remarks about competence--you need a recommendation to get into the program, lol! He didn't just show up off the street. And on the special needs side of things, the 2e kids often seem like they are doing better than they are. It's okay to just keep on explaining. 

It takes a paid person to make demands, remember the exact amount of the demand last time, gradually increase it, etc. And you're right that a location like this, with a sensory room, a therapy dog, the whole nine years is the ultimate place to nurture those skills. Really, you couldn't ask for a better setup, it sounds like!

Does that *offend* people if they have volunteer workers and you bring in a paid RBT? I mean, it's kind of weird. It's like you don't appreciate their efforts or don't think they were good enough. I think you need to be considerate, but I think that it can work out fine. I would speak to the director and ask flat out what would be positive and negative about it. Tell her why it matters. I would be up front about saying that success for him is pretty high stakes at this point. If they aren't seeing his needs immediately, it's partly that they are a bit camouflaged and partly that his supports are building up to success over time, and you can't afford to let that slip (but that if you did lighten up on supports, xyz is a typical outcome).  Maybe make an analogy to how hard it is to treat children who are super tall for their age like they are 5 or 6 instead of 8 or 9--those concrete details trip us up. Tell them that your son is like this--he seems "fine," but it is and has been a very delicate balancing act. Let them know that you haven't been anyplace else with such a wonderful setup to for an aide to help him. I would play up all the wonderful things they are doing with their setup and flexibility and just ask the director to top down smooth things over for you if you want to bring in an aide. Tell them that your son seems very high functioning in one context and very low in another, and it's just a tricky situation because he doesn't quite fit with SN kids, typical peers, or IQ peers. Let them know you are worried about how it will look or how you will come across, but that you want to make this work.

Unless the kids they serve are all very, very similar profiles, my guess is that they will be able to wrap their head around differences in time. Don't underestimate being friendly with other parents and bonding over similar issues. I would practice some kind of easily repeated and digested line about your son's needs (simple and direct) and then learn to quickly shift the conversation toward common ground--maybe things like repetitive behaviors (but keep the complexity out of it), rigidity, eloping, even if it's something like, "I was so relieved when we finally found some strategies for x and y." 

These kids probably all have supports in school or at home, and they may have different goals when they are at church--many people just want their kids safe and loved at church, and you have a couple of additional goals on top of that. Goals they will probably have as their children get a bit older, or goals that are met elsewhere for them. Just make sure you don't make it sound like the other parents aren't aiming as high as you are.

Yes, I got him on the county waiver list wait list. I was told the state will be revamping the system. He's now on all three lists for good measure. An individual needs to qualify under medicaid (income, financials), so until he is 18 and counted on his own income, he won't qualify. If he qualified under medicaid or we had astonishing need, I think they would have done something sooner. They have some flex, but that's where it's at. He'll begin transition services at 13, job mentoring services at 14, etc., but nothing from medicaid probably till 18. Those services are still really helpful. I am glad you are all signed up!

 

 

[Lecka]

I have done community things with an aide like this.....

This church may already have a policy.  They may have had this situation come up already and have a policy in place.

Some thing I run into is background checks.  If they have a background policy, it can take time to do it.  You can ask the ABA agency if their RBTs are typically already going to have background check type stuff and what their policy is.  Something I have run into is a fingerprint requirement that takes an hour and costs some amount of money.  So does the side have to pay that out of pocket and take an hour of their time unpaid?

This may be a non-issue but is something I have had come up for things that do have a background check policy.  

I think if they have never had it brought up, it is different because then you have to educate them about it, possibly.  But if they have a lot of special needs kids and even adults, you may not be the first person in this situation.

Also don’t say “RBT,” say something more like “aide,” because that is more general.

I would probably send an email asking if there is a policy and maybe they just respond “here’s our policy.”  

[Lecka]

It did take a little while at my church, too, and partly because no one was really sure who would decide, what area it would fall under.  Well — I went to a Congregetional church so there was a bit of “should we check with such-and-such committee” instead of it just being something where a certain person could say yes or no.  So it is pretty typical for things to take a while but have a lot of buy-in.  

It was also controversial with some older members to go to having badges for kids instead of just releasing them to go into the fellowship hall.  I was on a committee where this was discussed and some people didn’t care for it because they thought it looked bad, but all the parents thought it was a good idea. 

Ideally they will want the same background check as the ABA agency and it will be no big deal :)

[PeterPan]

I feel dumb, but I miss that church we visited. Like it so can't work. I had a horrible, horrible, like 8 out of 10, not workable level of headache yesterday. They had drums for 40 minutes that I could hear through multiple rooms and layers of drywall and earplugs, if you can imagine. Can't take it. But the peace, the sensory room, the kindness, the flexibility, how they could be so big but so down to the person, that was really amazing. And what I was realizing was that DS was a different person there. With so much support, he was his happy, relaxed, interactive, compliant, fun self, kwim? It was almost like ok why are you here? And yet that was WHY we were there, because with those supports he could be that.

And I feel bad that at the other church being stressed out is the only norm he has ever had. They've never gotten to see how amazing and fun he really is. Because all he's ever been is terribly stressed and struggling. And one church, one properly set up ministry could solve that.

So meanwhile, another big church (one that Story clued me in to, woo-woo!), is budding with a SN program and had the name of ANOTHER church to visit as well. At this point my plan is to visit anybody who has that type of ministry, because I want to see how he does. I think we're learning what works for him, what components he need, what could fade. It's giving me a way to think rather than pressuring a church to set something up without knowing. And that big church Story mentioned is going to call me and set us up with a buddy for a week too. But they don't have a room yet and might not for a while. If the setting is overwhelming, he may need the room as well. Just the buddy may not be enough. So that's why I'm thinking I'll visit the other church and just let this unfold. It's raising the bar for how this could look for him, how comfortable he could be, and where we could get to with a solid game plan. And there are things I'm thinking about, like whether I actually need a paid aide, whether I can actually get one (I have a call with another provider today), and just that whole philosophy of whether to make demands or let it come or what.

I think there will have to be some balance. If he's learning a lot (skills), it doesn't matter if I like the church or not. If the children's program is so out of reach for him that he's in the sensory room the whole time, then the reason to go there is because the church works for me. Those are rather different scenarios. So I think we'll keep trying places just to learn and see how he does with different mixes. Then we'll know ok we want to push for help at our old church or bring in an aide or jump ship or... 

[Mimi50]

On 4/15/2018 at 8:37 AM, PeterPan said:

Is it acting like my ds is a special snowflake to ask the church to convene a team to help my son attend, or is it just going through the normal pathways?

I just feel like I've gotten no traction asking for help in quiet ways. I asked for the songs ahead of time so I could teach them to ds (remember he has apraxia and can't sing, so he struggles to participate for half the service) and sometimes I get them, sometimes I don't. I asked for a buddy/aide for him, and they said oh well that should happen naturally, pray. He was surviving in the previous SS and then they changed it without asking and he refused to go. Tried Awana, but they placed him too high.

I just feel like I'm going about this all wrong, like I'm not getting the right person to help me. I need someone who can tell everyone else yes, open these doors, stop screwing around, help her, be more considerate, this must happen. I keep thinking of things that could help, and there's even a book on it that says stuff similar to what I'm saying. (flex placements, provide buddy/aide, etc.) and nothing happens.

What is the normal procedure for asking for these accommodations or asking for something to really HAPPEN? I must not be asking the right people. I want this church to work, but it's frustrating. And yet, if I go be direct and say Hey, could we convene a team of the pastoral staff, the SS director, etc. to make a coordinated plan for how we can help ds participate better, is that saying he's a special snowflake and I think too much of him? Like to me, I think there could be a lot of flex offered. I think he could go in a preschool nursery and play while a buddy pairs with him. I think they could ease him into things. I think the music director could give me the list of songs directly rather than going through the secretary, who hasn't been getting it done consistently. LIke I don't have them for this week. WHY?? Do they not CARE how hard I'm trying to get him into church and that little things like that make a BIG DIFFERENCE?? Do they not CARE about my son? 

In reality, the answer is obvious. They don't. If they did, they would have already offered this. But I wanted it to work. It's a small church and I can fit in here pretty easily. It doesn't offend us in any way (except their antiquated adherence to KJV-only, which I suspicion reflects in-church fighting not actual views of the pastor). So do I just need to ask better for help or move on? That's the real question of the day. Sigh. Another Sunday.

The church should accommodate your son. It shouldn’t take loud demands to make that happen. He is child of God and deserves to have whatever he needs to participate. As an adult with LD it makes me very angry. To see kids who struggle and those who should be the most kind and accommodating. Not doing what they should.

[Tree Frog]

This is a 5 year old thread. I hope things worked out for your son, op. 

[PeterPan]

On 10/28/2023 at 3:32 AM, Tree Frog said:

This is a 5 year old thread. I hope things worked out for your son, op. 

Nope church continues to be a raw issue. No matter how much we accomplish or how functional I get him they keep throwing wrenches and stressors that make it hard.

[Tree Frog]

I'm so sorry. They should be accepting him for who he is, not waiting for him to fit their mold or waiting for you to make him acceptable to them. I wish churches were more accepting of neurodivergent people. 

 

[MagistraKennedy]

On 11/4/2023 at 2:50 AM, PeterPan said:

Nope church continues to be a raw issue. No matter how much we accomplish or how functional I get him they keep throwing wrenches and stressors that make it hard.

I am so sorry. Sadly, yours is not the only story I've heard. So many of my friends with ND kids continue to bump heads with church admins, staff, etc. It is maddening.