Special Needs & Church

[Momofeat]

Members of our church would like to begin a "special needs" ministry that demonstrates true love to those with special needs, as well as their family members. I know that some of you feel like going to church isn't worth the trouble. What would you like to see happen at church? How could churches better minister to those with special needs and their families?

 

A little more info that may help: The definition of "special needs" is broad--including everything from blindness to autism to ADHD to learning disabilities to elderly to sick with cancer, etc. The ministry would be for all ages. Our church has about 1000 members. We recently conducted a survey to try to assess the needs, but only 21 members responded. We know more needs exist, and we want to offer help that is truly helpful. I'm asking here because I figure similar situations exist in our community.

[Violet Crown]

Our parish doesn't have any ministry for special needs as such, but one thing I'm grateful for is that, while we have a well-developed and sometimes annoying bureaucracy, the diocese has an explicit policy exempting special-needs children from all bureaucratic requirements for religious education and sacramental preparation. And parents determine for themselves if their child has special needs. The sheer practicality of this general exemption is worth a hundred gestures of welcoming.

[Heathermomster]

OP, what is the size of your Church?

[clarkacademy]

Truthfully, I would like to see the children that do attend church treat those with special needs a bit better. Some of the worse kids my son has come across was at church. I know that sounds horrible but it's true. They were some of the most down right cruelest children and this happened at way more than just one church. I know MANY families with autistic children who will not come to church for this reason alone.

[Momofeat]

Our parish doesn't have any ministry for special needs as such, but one thing I'm grateful for is that, while we have a well-developed and sometimes annoying bureaucracy, the diocese has an explicit policy exempting special-needs children from all bureaucratic requirements for religious education and sacramental preparation. And parents determine for themselves if their child has special needs. The sheer practicality of this general exemption is worth a hundred gestures of welcoming.

 

Thank you for that input. Our church doesn't have religious education requirements, but we may want to consider the way we award children who memorize their Bible verses. I'm not sure how it's handled if a student has a disability that would keep him/her from being able to memorize. I suspect that a lot of help is given, though. Maybe I'm wrong, but I feel like our church is very accepting and loving towards children with special needs. I'm not actively involved in the children's ministry, though. I serve in the youth ministry.

[Momofeat]

OP, what is the size of your Church?

 

We have over 1000 members. Each Sunday morning we have 3 services, with children's programming during 2 services.

[Momofeat]

Truthfully, I would like to see the children that do attend church treat those with special needs a bit better. Some of the worse kids my son has come across was at church. I know that sounds horrible but it's true. They were some of the most down right cruelest children and this happened at way more than just one church. I know MANY families with autistic children who will not come to church for this reason alone.

 

This tears at my heart. Do you think it would help if the non-special needs children were better educated about special needs? Did the adults try to intervene, or were they oblivious? (I know kids can be sneaky!)

[sassenach]

This is a reply I made to a similar question on our denomination's internet board:

As the mom of a special needs kid, here are some things that have helped us.

*Helpers that are willing to take the time to be trained. The 1:1 buddy system is a fantastic approach.

*The option of keeping our son with us. Because of our son’s seizures, there have been stages in his life where we needed to keep him with us. It has really helped us to have the ability to bring his wheelchair into the cry room, so his vocalizations don’t disturb others.

* Space available to change the diaper of a non-baby sized child. Even if it’s as simple as letting a parent have access to an office with a couch. I’m lucky that my pastor husband’s office is available to me. If not, I might be stuck trying to change our son on the floor of our van (not fun).

Outside of Sunday mornings, respite care is a great ministry to overtaxed parents.

A few last thoughts, train yourself and those around you to use “people first†language. What I mean by that is that when you refer to a disabled person, you say the person part first. Mary’s autistic son becomes Mary’s son with autism. Joey isn’t autistic, Joey has autism. It seems pc, but it really does help to know that your child is seen as a person first, not a disease. Lastly, ask the parents! We are completely accustomed to talking about our child’s disabilities. I am never, ever offended when people genuinely want to know more about my son and his needs. People are usually afraid to bring up the subject, but there is nothing to be afraid of. It’s an amazing blessing to be asked.

[clarkacademy]

 

This tears at my heart. Do you think it would help if the non-special needs children were better educated about special needs? Did the adults try to intervene, or were they oblivious? (I know kids can be sneaky!)

Yes it would help but also the teachers themselves. When you have a special needs child sometimes you have to let go of the rules and let it be so to speak. Example my son didn't belong in a class of his age group he belonged in the younger one where he would have had fun and actually learned but no that was not happening. Putting him with the older kids just led to bullying and a teacher who didn't want him there. A lot of people with autism do not like to be touched at all I think it was cruel they would make him let people hug him. That didn't help it hurt and led to outbursts. The constant expecting him to be something he just wasn't just set up for failure. Older boys who could talk him into doing things so they would be his friend. I had a very wonderful mother inform me she thought it horrible he was there, she homeschooled to keep her kids away from that crap :confused1:

[Lecka]

My church replaced the paid helpers in the kid daycare. I had just quit going b/c the woman just had zero rapport with my son. She had excellent rapport with my daughter.

 

They got two college students majoring in child development who were interested in autism. The childrens church woman called and asked me to come back to church with them there, I had just stopped going for a while, b/c I could not handle him being in tears/hiding/freaking out at the end of church every Sunday.

 

This is at a little church.

 

Honestly it is very overwhelming. I have got therapy and pre-school already to deal with. I cannot also be the person who makes things happen at church or who brings it up at church. I think if you could ask Sunday School teachers to reach out that might be better.

 

Also I think it would be very hard to have a one-size program b/c different needs. Our church has one adult man with Down Syndrome who attends on his own (driven from the group home) and sits up front with the choir and in a seat next to the pastor. Then my son basically has someone with him one-on-one when he is not with me. (Not formally but they went from one person to two, and now he is often with one of them.)

 

There is a little girl with Down Syndrome, and her parents like to keep her with them a lot. They would want for there not to be pressure of making her participate at times they would want to keep her with them. I think that is a lot b/c they do work in the week and just like to spend time with her. They have let her go a few times now.

 

Another little boy had a seizure at birth and he has CP and his mom keeps him all the time. For them ----- I am sorry, I do not want kids removed for vocalizing. I would like them to be part of things vocalizing or not. No one minds this boy vocalizing during the sermon. My son vocalizes much less, but he is quiet during music. If he was vocalizing during special music I would take him out. But I would not want to go to a place where a child vocalizing is "expected" to have to leave. Honestly I think that is not what I want my other children to think is normal -- that the handicapped children are taken away as soon as they start to act "weird." I don't know if she is interested in him going with the other kids.

 

Especially b/c, and I didn't know this until fairly recently, for my son vocalizing is considered to be a stage of talking, so I don't want to punish him for it, even though he looks too big to be making some baby noises. But if he is saying "water water" then I take him out for that -- I know that is behavior, and I do take him out (but I also don't want to let it be something that becomes "I get my way if I say water water during the time of church before we go to childrens church").

 

I have taken my son to my sister's church and her church is really, really welcoming. He has done well there every time. I think -- they have got more volunteers with the children that what I usually see. There is always someone to be one-on-one with my son if he needs it, and they are just very flexible. He has also had the diaper situation, and with several workers, it was no problem for one worker to take him to change his diaper. He is not so big he is hard to change, it is just that he is too big to be in the room that has the diaper table, so there is no diaper area in the room he should be in. They have a big special needs outreach (that I don't know much about, but they have got many people who come from group homes). The youth director has an adult son who is in a group facility with severe autism and mental handicaps, and he runs a lot of it I think. He is very charasmatic and popular and my nieces love him. I happened to be attending when he preached a guest sermon about it and it was very good... it was one where he talked about never doubting God. All the kids 7th grade and up attend and like this man -- so I think that would have a big impact on how the youth act and just the atmosphere. I am not sure though -- I go there a few times a year when visiting my hometown.

[Heathermomster]

Members of our church would like to begin a "special needs" ministry that demonstrates true love to those with special needs, as well as their family members. I know that some of you feel like going to church isn't worth the trouble. What would you like to see happen at church? How could churches better minister to those with special needs and their families?

 

A little more info that may help: The definition of "special needs" is broad--including everything from blindness to autism to ADHD to learning disabilities to elderly to sick with cancer, etc. The ministry would be for all ages. Our church has about 1000 members. We recently conducted a survey to try to assess the needs, but only 21 members responded. We know more needs exist, and we want to offer help that is truly helpful. I'm asking here because I figure similar situations exist in our community.

 

Our elderly have a Crown Club. Retirees over 60 meet with our pastor for weekly Bible study and lunch. Crown Club takes care of one another (driving and/or doctor visits) and convey needs church wide via email.

 

For shut ins, new mothers, and needy families, we have koinonia groups led by an elder and deaon. For abrupt and immediate needs, k-groups step up and provide emotional, food, and babysitting support. Deacons provide bodily help, food, and emergency monies. We have a monthly prayer letter and Bible studies throughout the month, meeting in homes and during the day for woman and men. We have a Sunday evening service.

 

Needy youth and their families...My church is tiny with a weekly attendance of about 300 people. All youth are fully integrated. Any special issue may taken to the Sunday school and nursery co-ordinator. We have three students in particular that are gently looked after. These kids are teenagers, who literally grew up in the church. My DD has specific physical issues and staff have always respected us and her needs. She nearly died as an infant. People know that and prayed for us. They love her.

 

We hire paid nursery workers from the local 7th Day Adventist Church. We engage these women socially, and one in particular participates in our monthly book club, which is secular BTW.

 

I don't know what to suggest. I believe that a Church develops a culture that is highly dependent upon its leaders. Whatever programs you develop, I suggest that these kids be integrated as much as possible. I cannot count the number of kids with LDs in our youth group. The number is high and no distinctions are made.

[MamaSheep]

An autism organization put together this video that might help offer some things to think about:

 

[Hwin]

We have a special needs ministry in our church. The best part about it is the support group. We meet once a month and childcare is provided. Just being able to talk and pray with other moms who get it is the best.

 

Because our church is small and still pretty flexible, any suggestions I've made to the pastoral folks has been met with immediate change (ie the dismissal procedure from church once ended with my son hiding behind some bushes in the parking lot with us unable to find him until he popped out and yelled "here I am!"- he needed more supervision in transitioning from his children's church teacher back to us, his parents).

 

We have some people who are very skilled with autism and other developmental disorders, and right now the kids seem to be concentrated in one age group (10 first graders, 6 with a diagnosis), so the people with those skills have been asked to work with that group. We also have teen helpers that provide 1:1 with the children that benefit from that.

 

I've guess we've just tried to cultivate a feeling of acceptance in the church as a whole, since no one blinks an eye at "behaviors", but I don't know the steps one takes to achieve that, I only know it's been successful. It may also be that we've got so many families with young kids so a little chattering and fussing is expected, and OBVIOUSLY if a child is past the normal fidgety age, then there is something going on and they have a little compassion.

[SkateLeft]

Our church offers a special needs class. The wonderful woman who teaches it is a special ed teacher at the local high school, so my son's OCD and repetitive tics don't phase her at all. Both of her teenage sons are there as assistants. The class includes a pretty wide range of special needs, from Down Syndrome to autism to... well... OCD. :D

 

Something to consider when creating a special needs ministry is how comfortable people are with "difference." We can focus on how to serve those with special needs, but if other folks in the church are ostracizing or casting a critical eye on those with special needs, then something isn't right.

 

Church should be a place that welcomes those who are different, regardless of what special need they have. That would really be the first thing I'd consider when starting a special needs ministry. Consider how welcoming your church is to special needs families and what you can do to increase that. Educate the community, and then go from there.

[Harriet Vane]

I do not have a special needs child, but have friends that do. I also worked with a few families to accommodate their special needs children in church when I was Sunday School Director.

 

--The buddy system is great. Having a compassionate adult assigned to the child with special needs alone makes it nice for everyone.

 

--Education. Everyone needs to know why certain behaviors occur. With understanding comes compassion.

[Aslana]

I am no longer religious nor do I have a special needs child. However, at one point in my life, I was a member of a Methodist church. This church had a family (older couple), with a severely disabled daughter---vocalizations (gargling loudly, screaming, uh-uh-uh loudly, she also would say "blah blah blah" a lot), wheelchair, wild hand and body gestures (I'm truly sorry I do not remember what they said she had. I'm just trying to describe her for a better understanding of my point).

 

My point: this preacher (a female) did the most amazing and wonderful I've ever seen. Anytime this lady would "act up" like that, my preacher, without missing a beat, would simply shout "AMEN!" and smile. I loved that about her. It never once bothered her.

 

One day I asked her why she did that and if she felt the dirty looks this family was getting were also being pointed at her for not silencing this girl during sermon. My Pastor's response was "I don't care if they do. God turns NO ONE away"

 

I still miss her.

[SebastianCat]

We are members of a very large church that has a special needs ministry. They have several options available - these are the ones I know of, although I don't work in this ministry so I don't know if this is all they do:

 

-Special Needs classes for children/adults who need care or who wouldn't do well in a mainstream classroom. There are pagers available to alert parents during the service if they are needed.

 

-One-on-one shadows for children/teens who can be mainstreamed into a grade-level class. We know teenage one boy who has autism who has had the same lady shadowing him since he was in preschool. I believe he is mainstreamed into a class one or two years younger than his same-age peers.

 

-"Buddy break" program once a month on a Saturday, where volunteers provide respite care for special needs children and their siblings, so their parents can have a break, go shopping, etc.

 

-Special needs recreation field - built with donated funds specifically for this purpose. Our church runs a recreation league for soccer, baseball, and football, and this is an extention of that. The special needs field is fenced for safety, has bleachers where family members can watch games, and has a special surface that is wheelchair/walker-friendly. They call this group of kids the "challenged champions."

 

Training is provided for all of these ministries, and they are all staffed by volunteers.

[nitascool]

Our church experiences with our Autistic, SPD, ADHD son have made church attendance difficult as well. In his first church (a larger church about 1000 adult members) we got looks and comments because we harnessed our son. His impulsive behavior had caused more then one near hit by oncoming traffic and he often ran to the top of the stairs and tried to jump off head first. We were regularly told how we needed to teach our son "first time obedience". We were even told that we must be sinning since our son was "acting out so badly".

*So not judging the parents on the behavior of their special need child would be a great start.

 

In his second church (about 40 adult members) we were told that our son was demon possessed.

*So not assuming that there is a "spiritual" problem (aside from the normal every kid needs to learn about God) in the child is really helpful. And also teachers knowing the signs of the most common childhood disorders....ADHD, Autism, OCD, ODD, SPD... I'm sure I've forgotten a few would be helpful.

 

And in his third church (about 300 adult members) he was chastised by the teachers. One of the teachers left a bruise on his arm because he wanted to hide under the table (he was overwhelmed and trying to cope). Also the children called him rude names and were cruel. My oldest son (who was 6) was expected to make him mind (they were in the same class even though we'd requested they not be).

*Not expecting siblings to deal with the issues that the child has would be paramount in my opinion. An if at all possible, not even placed in the same group. Even if that means putting the sn kid in a lower group or the sibling in a higher group. Also, providing CPI (Crises Prevention Institute) classes for teachers would be high on my list for churches who expect more then a couple special needs children in their church. CPI teaches people how to use proper and safe holds for people who are having unruly behavior.

 

In the forth church (about 60 adult members), we met with a mix. Some of the older people were kind and patient with him, but those who had children my sons age were more concerned about pointing out his bad behavior then trying to help him to fit in. My son has never been violent in any way but one child insisted that he was hitting him... for weeks. And he was chastised even though there was no proof. When I asked why he had not been trusted I was told "Just because your son was weird and Autistic" (Teachers exact words).

*In this case knowing a bit about Autism and about my son... he was not at that time capable of lying... would have at least helped.

 

We are now going to a church (about 600 adult members split into two services) that is not perfect in it's attempt to meet our sons needs. They do have a special needs class in the first service for children. Which we first attended thinking it would be a benefit for him. However the teacher, ironically, a special needs teacher, tends to expect way too much of him. And all the children are physically challenged, not emotionally/socially. This frightened my son, to see these children appear so differently. So they made accommodations in the typically-abled class for him. They try and that for us is the most important thing. My son is on the more mild end of the spectrum, with Asperger.

*They do not have one to one helpers which would be good for him. They do not have diapering accommodations for older children, or assistance for sn people older then 11. I don't think they would do well with children who had OCD, ODD or made loud noises in service. In the few times where my son stayed in service he was looked at with frowns for what I consider mild behavior (rocking in chair, singing too loudly - but on key, asking when the preacher would be finished perseverating).

 

It would be helpful for the congregation to be educated. But as far as I know my son is the only Autistic child in the church, there are no children with cerebral palsy or down syndrome in the church either. There is one brain damaged child, he is severely so and physically disabled as well. They have met the needs of several physically disabled children well for several years but I get the impression that there is less compassion or understanding for the mentally challenged. There is one Tween with ODD who has been attending about a year. Again, I think education on this would be of help, because in general they seem compassionate and caring.

[Lecka]

My church has an open and affirming statement that is read as part of the service about once a month, and one of the items is "physical or mental handicaps." That means a lot to me, and a lot of people are at this church bc the open and affirming statement for one reason or another.

 

Thinking about it, I think if you could ask the pastor to speak about it during a sermon or somehow bring up the issue sometimes in the main service, that is really something that means a lot to me. I think there is a inevitable, sometimes, separation or exclusion, and it is worth it to try to actively counter that. With the guest sermon I heard preached at my sister's church, I feel no question of what their feelings are, they have laid down that they are very supportive and accepting.

[freeindeed]

Here are some helpful links:

http://theinclusivechurch.wordpress.com/2010/06/06/starting-a-special-needs-ministry/

http://shadowbrookchurch.org/site/index.php/ministries/children/p-u-r-e-ministry/

 

My church is very small & is a new church plant, but we are working on being a church that reaches special needs famililes. As of right now, we are the only special needs family at our church, but we are helping other members to know how to minister to families like ours.

[MamaSheep]

A lot of families with special needs family members appreciate it when their SN family members can just be included in regular church services and activities (with appropriate accommodations) rather than having a separate SN class. This helps them feel that the whole family is welcome, as well as helping other church members learn to really understand and include people with special needs, rather than seeing them as something that should be separated out from regular society and stuck in a corner where nobody has to actually acknowledge that they exist.

 

Sometimes, though, a SN class really is the best solution so that SN people can learn at their own speed and worship without being stared at. I think talking to the families about what they would like to see happen is a great idea.

[prairiewindmomma]

Great ideas! My only new one is a mixed gender handicapped accessible bathroom. So often one spouse needs to help another, or it's a group effort of both parents in handling a child. When I say handicapped accessible, I mean that a wheelchair needs to be able to fit into a stall (or the whole bathroom has only one toilet and the door is lockable), the wheelchair can fit under the sink to wash, and you can get in without getting whacked with a door. So many "handicapped accessible" bathrooms really aren't accessible by people in bathrooms......our church included. :(

[Momofeat]

Wow! Thank you all so much. I probably should have waited another day or so to ask my question, because I asked it & then disappeared. Today has been our busiest day of the school year, and I just got home a little while ago. Since it's midnight now, I don't think I'm going to be able to work through all the responses tonight. Please keep the suggestions coming, though, and I'll study them tomorrow. I'll also pass them on to our committee.

[Momofeat]

 

This is a reply I made to a similar question on our denomination's internet board:

 

As the mom of a special needs kid, here are some things that have helped us.

*Helpers that are willing to take the time to be trained. The 1:1 buddy system is a fantastic approach.

*The option of keeping our son with us. Because of our son’s seizures, there have been stages in his life where we needed to keep him with us. It has really helped us to have the ability to bring his wheelchair into the cry room, so his vocalizations don’t disturb others.

* Space available to change the diaper of a non-baby sized child. Even if it’s as simple as letting a parent have access to an office with a couch. I’m lucky that my pastor husband’s office is available to me. If not, I might be stuck trying to change our son on the floor of our van (not fun).

Outside of Sunday mornings, respite care is a great ministry to overtaxed parents.

A few last thoughts, train yourself and those around you to use “people first†language. What I mean by that is that when you refer to a disabled person, you say the person part first. Mary’s autistic son becomes Mary’s son with autism. Joey isn’t autistic, Joey has autism. It seems pc, but it really does help to know that your child is seen as a person first, not a disease. Lastly, ask the parents! We are completely accustomed to talking about our child’s disabilities. I am never, ever offended when people genuinely want to know more about my son and his needs. People are usually afraid to bring up the subject, but there is nothing to be afraid of. It’s an amazing blessing to be asked.

 

 

What great, practical suggestions! You have named some things that did not come up in our meeting.

 

We have a list of volunteers who have actually asked to serve as a buddy for young children with special needs. I was shocked, because I didn't even know such a list existed. Currently, we have more willing volunteers than young children who need buddies. Now we need to see if they would be willing to volunteer if the person were older.

[Momofeat]

Yes it would help but also the teachers themselves. When you have a special needs child sometimes you have to let go of the rules and let it be so to speak. Example my son didn't belong in a class of his age group he belonged in the younger one where he would have had fun and actually learned but no that was not happening. Putting him with the older kids just led to bullying and a teacher who didn't want him there. A lot of people with autism do not like to be touched at all I think it was cruel they would make him let people hug him. That didn't help it hurt and led to outbursts. The constant expecting him to be something he just wasn't just set up for failure. Older boys who could talk him into doing things so they would be his friend. I had a very wonderful mother inform me she thought it horrible he was there, she homeschooled to keep her kids away from that crap :confused1:

 

I remember dealing with the lack of flexibility church at our old church when our oldest dd was little. She was very bright and had a terrific vocabulary, and her behavior definitely was not all that great. (She was one who crawled under the tables and didn't really obey. <sigh>) She was eventually diagnosed with ADHD and learning disabilities, but we didn't have a diagnosis back then. Her Sunday School teacher felt that she might behave better in an older class where she would be challenged, but the person in charge of Sunday School absolutely refused to make an exception and move her up. Year after year they restructured the Sunday School classes so that she was the oldest, and there just happened to be no other girls in the group--no less rambunctious behavior for her to observe. I felt like she was set up to fail. She was never teased, but we certainly knew that everyone disapproved of her behavior, and that didn't help anyone's relationship with her.

 

At our current church, children who have difficulty following classroom rules or participating in the activities have a volunteer that shadows them, and I have seen many volunteers laugh (not teasing laughter, but "I'm really enjoying this child laughter") at antics of these kids--antics that certainly would have brought a "Well, Mom..." report to me. They enjoy being with those kids, and I wonder if my dd might have flourished if she had been in that sort of environment. When we changed churches, she was definitely accepted and loved by the adults, in spite of her issues, and I think that led to her acceptance by the kids.

 

I am so, so sorry that you had such a rotten experience. I still cry when I remember our experience, and it sounds like yours was much, much worse. Members of our church truly seem interested in helping those with disabilities and their families feel loved and at home.

[Momofeat]

 

Honestly it is very overwhelming. I have got therapy and pre-school already to deal with. I cannot also be the person who makes things happen at church or who brings it up at church. I think if you could ask Sunday School teachers to reach out that might be better.

 

Also I think it would be very hard to have a one-size program b/c different needs. Our church has one adult man with Down Syndrome who attends on his own (driven from the group home) and sits up front with the choir and in a seat next to the pastor. Then my son basically has someone with him one-on-one when he is not with me. (Not formally but they went from one person to two, and now he is often with one of them.)

 

There is a little girl with Down Syndrome, and her parents like to keep her with them a lot. They would want for there not to be pressure of making her participate at times they would want to keep her with them. I think that is a lot b/c they do work in the week and just like to spend time with her. They have let her go a few times now.

 

 

 

I have taken my son to my sister's church and her church is really, really welcoming. He has done well there every time. I think -- they have got more volunteers with the children that what I usually see. There is always someone to be one-on-one with my son if he needs it, and they are just very flexible. He has also had the diaper situation, and with several workers, it was no problem for one worker to take him to change his diaper. He is not so big he is hard to change, it is just that he is too big to be in the room that has the diaper table, so there is no diaper area in the room he should be in. They have a big special needs outreach (that I don't know much about, but they have got many people who come from group homes). The youth director has an adult son who is in a group facility with severe autism and mental handicaps, and he runs a lot of it I think. He is very charasmatic and popular and my nieces love him. I happened to be attending when he preached a guest sermon about it and it was very good... it was one where he talked about never doubting God. All the kids 7th grade and up attend and like this man -- so I think that would have a big impact on how the youth act and just the atmosphere. I am not sure though -- I go there a few times a year when visiting my hometown.

 

We are definitely not thinking "one size fits all." Those involved in the meeting I attended seemed to understand that individuals have a wide variety of needs. We're just not sure how to best meet them--and we know there must be more needs than described on the survey forms.

 

Thank you for mentioning the diaper issue. That is something we have not yet discussed.

[Lecka]

Just for me -- right now, I am able to talk to the Sunday School director about my son's needs.

 

But last year -- he was not diagnosed. At the time when we were just realizing something was wrong, and starting the processes, etc, we didn't yet know what would work with him. There was a gap of several months between my thinking -- hey, he is really having a hard time at pre-school and church, it is not normal, I need to take him to the doctor and ask for a referral to take him to the autism place, etc. Even getting started in special needs pre-school is not something that happens in one day.

 

It was during that whole period that I just quit going to church as he was not doing well there at all.

 

But people at church did know I was in the process of seeing if he had autism. Then that is when the Sunday School director did get the new ladies in the childrens room and called to tell me.

 

But I did not realize he even had autism until he was 3 years old, so that is why it was kind-of a crisis for me and I could not handle church.

 

But now I am in a lot better place and able to discuss these things and also know what things to recommend. For a while though, if someone asked me, I would just not know. I was being asked at pre-school what strategies worked at home, and for the problems he was having, I did not have any strategies, I was hoping the pre-school would have strategies!!!!!! But now -- I do have strategies.

 

For my son, he did not regress, but his issues were not noticable until he started hitting the 3-year-old age range and was not meeting the expectations for that age group. But -- he was too big to be in with the kids younger than him.

 

Also for the diaper thing -- a lot of places have a thing where you are just supposed to go to underwear at age 3, and they don't mind if there are a few accidents in the process of potty training. But my son is really far from that. Now it is different b/c I am okay with it, but around the 3 age, there is a lot of judgment and shame about a child who is not moving ahead in potty training, and to feel like -- the whole structure of things is set up to just not have any place for a child who is 3 but not potty trained or even potty training, is really a hard thing, or was for me.

[Momofeat]

 

 

I don't know what to suggest. I believe that a Church develops a culture that is highly dependent upon its leaders. Whatever programs you develop, I suggest that these kids be integrated as much as possible. I cannot count the number of kids with LDs in our youth group. The number is high and no distinctions are made.

 

 

I think this is really what we're striving for--integration and an atmosphere where everyone is seen as being made in the image of God.

[Momofeat]

We have a special needs ministry in our church. The best part about it is the support group. We meet once a month and childcare is provided. Just being able to talk and pray with other moms who get it is the best.

 

Because our church is small and still pretty flexible, any suggestions I've made to the pastoral folks has been met with immediate change (ie the dismissal procedure from church once ended with my son hiding behind some bushes in the parking lot with us unable to find him until he popped out and yelled "here I am!"- he needed more supervision in transitioning from his children's church teacher back to us, his parents).

 

We have some people who are very skilled with autism and other developmental disorders, and right now the kids seem to be concentrated in one age group (10 first graders, 6 with a diagnosis), so the people with those skills have been asked to work with that group. We also have teen helpers that provide 1:1 with the children that benefit from that.

 

I've guess we've just tried to cultivate a feeling of acceptance in the church as a whole, since no one blinks an eye at "behaviors", but I don't know the steps one takes to achieve that, I only know it's been successful. It may also be that we've got so many families with young kids so a little chattering and fussing is expected, and OBVIOUSLY if a child is past the normal fidgety age, then there is something going on and they have a little compassion.

 

 

A support group--that's a good idea, & something we did not discuss! One mom did mention that she loves it when our church has a "date night" because it gives she and her husband a much-needed break,

 

I can't figure out how to do the mutli-quote thing, but I would really like to focus on your last sentence. I guess this will surprise you, but in my experience many people do not suspect a special need if a child is not behaving in an age-appropriate manner. Some kids just look too normal or act too smart for people to believe that they have anything funny going on--or maybe they just don't want to believe it. I'm so glad you're in a place that is willing to accept your child and work with you.

[itsheresomewhere]

If you do the support group, make it a support group. Not a you are going to come out depressed group that just focuses on what our children will never be able to do. Other parents and I just wanted a group we could share with, feel comfortable and be uplifted at. Instead, most support groups do not fulfill that. You may need to see if you can provide some sitters so that those whose spouses work or are single can attend.

[specialmama]

Our church is starting a Friendship class. Check out Friendship Ministries. They've done all the work for you and have excellent resources. They have a CD and info packets that you can share with your congregation. I took a lot of training classes from the late Director, Nella (she passed away last month) and they were so informative!

[hsmom27]

We quit attending years ago because our church would not allow our DS' service dog to accompany him. Churches are one of the few places that are not required by law to admit service animals. I have no intention of going back ever, but I would think that making service animals welcome might be beneficial to some families.

[Pen]

A general fragrance free policy or a fragrance free section. That people get dressed up for church including often wearing fragrance of various sorts makes it inaccessible for us. Without that being fixed no other accommodation would help. It would also help people with asthma and other similar conditions.

 

Foods are a problem. Sharing in eating snacks there or on outings is part of communion and fellowship--but we have so many intolerances that it is hard to do that. We would especially want organic/GMO free/additive free/preservative free/artificial coloring free. I know others who need dairy free, soy free, gluten free.

 

A sense that it is okay to attend when able. Here a church we might otherwise go to has September sign-up for whole school year of religious instruction time during services for kids, so you either sort of need to go to all, or none. If a child is not in that one feels like an outcast.

[PrincessAriel]

I would like to mention the requirement for kids to go on overnight retreats and such as they get older. I am not comfortable, for many reasons, having my kids participate in these and I am not able to attend with them for various other reasons. I think allowances should be made for this type of thing without making kids feel like they are out of the loop by not attending. I also do not like the way medication needs were handled a few years ago. My ds, who was not taking any meds at the time, said that it was announced to all that certain kids needed to report to the kitchen for their medication.....so much for privacy! I don't feel that my church has a good plan in place and I have many concerns for my kids in the next few years and how they will go about fulfilling requirements for sacrament preparation.

[bethben]

Room for a wheelchair. Our church added onto a tiny church and then stuffed the new main room with as many chairs as they could. Unless the chairs are situated just right, we can't get down the aisles. That means that we don't take communion as a family because the aisles are too narrow. We also are stuck in one place after church because every where else is too small to fit a wheelchair with all the people. We just wait until most everyone is gone before we can move.

 

My greatest wish is that our church ran a group home for adults with disabilities. A place where the residents were prayed for and God's presence was welcomed. There's a lady in our church that is picking up an older man with Down syndrome that she connected with again after 35 years of not seeing him (she worked at his group home). She found out that for 35 years, he had wanted to go to church but no one took him or connected him with someone who would. 35 years! Anyway, that would be the greatest thing a church could ever do for us.

 

Beth