Thursday, September 22, 2011

Worshiping with children who have special needs: Help me, G-d


Bringing a child with special needs to religious services sure can make you pray for salvation. We've tried, but Max hates crowds and refuses to sit there. He also doesn't quite understand what's going on. Usually either Dave or I end up up hanging with him in the playground, and the other goes to the children's service with Sabrina. The neurotypical kid's service, I should say.

At some point last year, I don't remember when, I had a hissy fit over the fact that our congregation does not offer any services or programs for kids with special needs. I emailed all of the clergy people. I got profuse apologies, calls, invitations to come in and talk.

I hate to say it, but I never followed up. I had too much going on. Also? For once, I would have liked someone to say, "You know, you are right, how could we have overlooked that? We will figure something out!" Instead of my having to go there, discuss it and make a case for it. I mean, really, what is there to talk about? There are no current programs in the congregation for kids with special needs. My child isn't the only one with special needs. Do something.

We've considered switching congregations, but haven't. We are not very religious about attendance, so to speak, and the matter hasn't come up again. Only next Thursday is the Jewish New Year, and we will be in temple. And once again, I am not sure what to do about Max.

Max has definitely matured, and we could try once again to seat him with us and pacify him with his favorite small toys, although I am not sure other worshipers would appreciate the rattle of Lightning McQueen cars. And I'd really like to be able to focus on my own praying. It's the purest time of reflection I get.

Last year's not-so-great solution was to place Max in the childcare center. The other kids there were all younger, though Max was perfectly content. The woman in charge was an amazing special ed teacher. Still, I wondered what good it was doing him to be there, as the rest of us prayed, and whether we should have left Max at home with his regular babysitter and gone without him. But that seemed awfully wrong.

Max is involved in a wonderful Sunday morning program, which helps him grasp concepts of religion. I discuss simple ideas at home, too. But in order for Max to participate in our congregation in any meaningful way, he'd need to be in a service for kids with special needs. That's not happening this year. And I'm on the line about what to do.

Show me a sign?

Do you bring your kids to religious services? Does your temple, church, mosque or center have programs for kids with special needs?

Photo/fmpgoh

53 comments:

  1. Don't you think it's kind of hard to have a service that is right for all kids with special needs? Kids who are highly social with no sensory issues but with a cognitive impairment might need a servicee that is fun, faced paced, loud, and stimulating. Max might not enjoy such a service as it might overwhelm him given his sensory needs. I don't think it was too much for your congregation to ask you for input on what would be helpful for Max. To ask them to just "figure something out" is not realistic or fair.

    That being said, I don't think there is a thing in the world wrong with having Max simply accompany you and stay in the childcare center. He still gets to be a part of the community, the greetings, the buzz of a Synagouge on the High Holidays. Maybe he could come in during some of the songs and leave it at that.

    One other thing. Since you say you are not very religious I assume you are attending a Reform congregaton. One thing I have noticed is that the "less observant" the service the more it parrots a tradiional Church service where quiet and order are the expectation. Have you thought about looking at a more Traditional/Orthodox service (I assume you would want an egalitarain one, which means digging a little to find it). These services tend to be way more laid back, with members constantly getting up and down, kids talking, babies crying etc...

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  2. Switch synagogues. Unless you want to make this your mission, look for a synagogue that is already open and welcoming to people with disabilities. How to tell? Is their building accessible? It's not required by law, but they should do it because it's the right thing to do. Do you see other people there with disabilities?

    Talk to the education director. See what her reaction is when you ask about programs for special needs kids.

    Many Jewish congregations have a "disabilities awareness Shabbat" in November. See which ones do. Try those first. And, if they do, do they work to make people with disabilities valued members, or just once a year guests?

    You need to find a place where you all feel at home, even Max. Even if, for now, it's just a place that he associates with really nice people.

    Paula

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  3. My SIL is high-functioning DS and has always worshipped with the family, developing a deep connection to her faith. That's been a beautiful thing to watch. On the opposite spectrum, my 25 yr old nephew is no longer ambulatory and never had any language skills other than moaning loudly at full volume - a special challenge in church. When he was younger, the attempt was made but several years ago they stopped taking me. No babysitter on the sabbath usually so his mother and father take turns attending each week or part of the meeting. What has impressed me about both of my special needs family members are the spiritual connections that have been intensified for the rest of us through them. Whilst my nephew has no discernable spiritual life, the love and sacrifice of his parents and siblings in some gut-wrenching circumstances have strengthened the rest of us. That time to pray and recharge is so essential for all that is required of you.

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  4. Ellen, I am not religious and don't "do" church so feel free to disregard my two cents, but here it is, anyway:

    If Max is "perfectly content" in the childcare center with an amazing SPED teacher, why beat yourself up over this? I'd take THAT as a sign that it's the right move to go with that plan. He gets what he wants, you, Dave and Sabrina get the religious experience you need. Everyone wins.

    There's no rule that says Max has to join in if he's just not ready. There's no rule that says you or Dave have to miss out out of a misplaced sense of obligation, either--especially when there is a place where Max will be safe, cared for, and 'perfectly content.'

    Let this be a sign unto you! Max to the childcare, the rest of you to the services!!! Go, and sin no more (or no less...)

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  5. As usual, you inspire me with your thoughtful questions, and your blunt honesty about feeling the need to pave the way—always. You also inspired me to blog about Gateways: Access to Jewish Education, the program my bff Nancy facilitates in Massachusetts. Naturally, I linked back to you, too...

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  6. I have been thinking about this a lot lately too. I emailed a bunch of churches last fall to see if they could accomidate my son's special needs and none of them thought they could. To be fair to them, my son has EXTREME behavioral issues and very low cognition. His obsession with breaking books woukd make it hard for him to be in a house of worship! I got some request for me to talk to their sunday school directors but I felt much ike you in that I spend every friggin second dealing with special needs. I don't wanbt to have to do this too - I just want to sit quietly in church for an hour.

    THere is a church near me that has a service for families with special needs - St Andrew's in Harrington Park, NJ . But as of now I haven't been able to make the church thing work for Sam.

    My ideal scenario is a church with a sunday school room set up as a mini sensory gym. All the special needs parents could rotate and take one sunday every few weeks to be in charge and all the others could sit through service in peace.

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  7. I want Joshua to be able to attend Sunday school but he is no where near ready. They do have a tree tumblers program for toddlers but I don't think he's ready for that either (they do crafts and learn about holidays). Does your synagogue have that? In our area (we are in the south) there are only two synagogues, conservative and reform. We belong to the reform and I LOVE the Rabbi, like want to marry him LOVE so no way am I switching unless he leaves. I don't know what kind of services they offer if any for Joshua but he is only 2 and not cognitively ready for any type of religious experience. We took him when he was a baby and he was named there (he was in the NICU or would have had a bris). I have to say I did not know you were Jewish and now I love you even more. :)

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  8. This is a very good post. I appreciate your thoughts/frustration on wishing your congregation would think about a solution independent of asking you to come speak to them. "Just do something"...yes!

    I started my blog (The Inclusive Church) to help churches of all sizes come up with action steps and move past square one. There are a number of churches doing some innovative things...including providing a fun class environment (like a sensory room) and/or or services that engage children with special needs.

    www.theinclusivechurch.com

    Amy Fenton Lee

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  9. Aren't you in New York?

    Have you checked out Brotherhood in Gramercy Park?

    Awesome, inclusive shul, with awesome people in charge! If you call, ask to speak to Phil Rothman or Myra Hushansky. They might have some ideas for you!

    Shana Tovah u'Mitukah,
    Mari

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  10. We do take Kade to Mass with us. Like good Catholics, we sit in back (Catholic Humor), and place his wheelchair in the aisle where it is nice and wide. The thing that frustrates me more than anything are the "pitty looks" we get. Kade is known for making noises and BELCHING at somber moments during Mass, it adds some comedic value to the sermons.

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  11. If Regal Cinema's can accommodate a sensory friendly movie time for families and children with special needs, certainly there is something our religious communities can do for them too.
    I'm right there with you.
    There are more and more churches and synagogues reaching families like ours. I'm going to a new church that provides these services for families like ours. Their focus is reaching families that need the respite and the encouragement.

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  12. We had to leave a church due to SN issues.

    We sadly learned that they believe Autism is not a "complex neurological disorder" but only related to sin. If we disciplined Lauren (which in this case means only spanking) for her behaviors directly caused by Autism, then she would not have those behaviors.

    We actually ended up moving a few hours away for a job and found a new church.

    They have welcomed us with open arms. She goes to her own age appropriate classes and has an aide to help her. I don't even think most of the other kids realize that the aide is for her because there is no broadcasting of it. She cheers for Upward basketball and if she wants to just stand there it's fine.

    I think I knew that this was our church when I came across a flyer for the Sunday School teachers. They were encouraged to attend a training at another church. It was titled "Helping Kids with Hidden Disabilities in Church".

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    1. Your church is entirely ridiculous beyond belief. Shame on them for thinking 'autism is a sin not a condition' and it can be 'cured' by spanking.

      Your church have some very weird idiotic ideas. They should learn not to say such crap.

      Delete
  13. I'd also take him to the Childcare Center; that's what we've done with E. The advantage of that is you can (I assume) pull him out for small, key parts like the shofar or a singing part he might like.

    Then he could be a part of the parts he's most likely to enjoy and connect to. Yes, during that time you probably won't be praying, but the rest of the time you can.

    Have you asked his Sunday program what they suggest? They might have some ideas, including a recommendation for services.

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  14. As ShannCollenK said, this kind of reminds me of the movie houses that have baby-friendly movie times... maybe the suggestion could be that they have a generically family-friendly service where people with special needs or really any kid could run, cry, make noise, or otherwise act like themselves without the parents or caretakers feeling worried that they are bothering other worshippers.

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  15. For a bit of inspiration of including children with special needs in a religious community I would suggest the documentary 'Praying with Lior'. You can Netflix it On Demand or rent it. It was very moving to remember that it doesn't take years of scholarly achievement or perfection to have a true relationship with God.
    http://www.prayingwithlior.com/

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  16. This post is really making me think. My daughter is four and has CP - and right now part of what's fun for her is yelling a lot, learning her voice and practicing her consonants. I wouldn't bring her to Rosh Hashanah services for that reason, and I don't think she'd do very well in the childcare room. I also feel like for her for now, she's better served at preschool where she's getting her therapies. But I have quite a bit of guilt (oh, shocking, right? ;) ) about this decision, and I really hope that when she's older and understands things like quiet voices, that I can bring her with me. (For the record, the temple I am going to is superduper liberal and open and understanding, the rabbi has experience working with children with disabilities, and I think she'd be welcomed. I'm just not ready.) I don't know if I'm even making sense as I'm currently working through this issue myself - so, basically, thank you for your post because it's important. And Shana Tova!

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  17. Our experience has been that if we want Claudia involved we have to do the extra helping. It has been a source of frustration for us as well. Claudia does really enjoy the environment and the people so we'll keep trying.

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  18. My church has program called the JOY ministry which pairs a child with special needs with a one on one buddy to attend the regular children's sunday school program while also offering an inclusive sunday school class for just children with special needs. I have volunteered since our program started 8 years ago and have watched it grow to bring new families into the church. You just need to find someone who's passion is kids with special needs to start up a program.

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  19. Tried to get Derek in to an after school release time. They told me he couldn't come because he isn't potty trained and would be a distraction since he cant learn the memorization. Broke my heart. I thought at church everyone would be accepted. Guess not... BTW what the hell does being potty trained have to do with learning about the love of Christ???

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    1. That should not put them off. A good church will ignore the fact Derek is not potty trained and would be a 'distraction' and accepts him.

      You're right potty training has NOTHING to do with learning to like Christ. Clearly your church needs to move past square one and beyond.

      Delete
  20. Thank you for sharing your honest frustration. My daughter w/CP and intellectual disabilities will indeed sit still and mostly quiet during church. However, we must sit at the very back of the church to keep her from sensory overload. Also we cannot interact with our congregants as she may get over stimulated and I'll end up with a bite from her. As I get older, I feel the strong need for fellowship, but my church just does not offer any type of special needs accomodation and like you, I really don't want to always be the advocate. Good to know I am not alone.

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  21. Shana Tova! I think Felicia's advice was good.
    I think my synagogue is pretty great for adults with disabilities, esp. developmental disabilities. This is mostly because we are a block away from an assisted-living facility and a lot of the residents are synagogue members. To my knowledge, we don't have any special programs for kids with disabilities other than help in the religious education classes. Last year a kid with DS became a bar mitzvah, and the shul and his family had worked SO hard to make that happen, but the boy was a part of all of the age-appropriate classes, just with extra help. I don't know of any kids with sensory issues in our shul, but I am also never there on Sundays or Wednesdays when all of the Hebrew school stuff happens. The shul website *says* they have a program... http://www.beki.org/youth.html#rschool
    If you're interested, our other programs might be good for ideas of what some shuls do re disabilities.
    http://www.beki.org/kulanu.html
    http://www.beki.org/sauls.html

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  22. Our church does provide for children with special needs. At first, they created a special room in which they could all meet, and volunteers within our church helped with the care. But more families wanted to have their children integrated into the "regular" classes so our kids could ne with their other friends also. So now, we have developed a shadowing program where volunteers go with the child to their class preference & the parents ate connected to that volunteer by a pager system, in case a need arises. We have been doing thus fir years and it really works great. We actually have other people come to our church because we have a program like this.

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  23. Our church has a part of their website devoted to special needs both in children and adults, with definitions of the disabilities and teaching tips on how to incorporate each into the service and Sunday school classes. That's new in the last few months and I think it's great, especially that they include information for adults too because our kids won't be little forever.

    Our congregation is pretty accommodating. There are at least 4 kids with a variety of special needs, as well as a handful of adults. Mark and I take turns taking M out of service if he gets exceptionally loud, but otherwise loud talking, some moving around, etc. is tolerated just fine. (Once the bishop got up and told parents they shouldn't worry about taking their kids out of the service just for being a little loud b/c that's how kids are and church is about families...worship doesn't need to be silent.) We bring a bag of toys for him to play with.

    At this age M goes to nursery after the service - it's for kids 18 months to 3 years old - and he enjoys that. I met with the nursery leader before M started coming and she's been very nice about all of it, even if she doesn't really "get" autism.

    When M turns 3, we'll meet with his children's Sunday school teacher and talk with him/her about his needs at that point.

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  24. I agree with the person who said that you should find a more religious synagogue. Many will be happy to have you, even if you practice less than they do.

    We belong to a chasidish synagogue, and while my husband goes every Shabbos, I stay home with the children. Other people bring kids along, and that's fine. There is no special room for them, so they just play in the main room. When my boys are old enough to sit for all that time and pray, they will go with my husband. I don't know when I'd ever be able to go on a regular basis.

    For me, the issue isn't so much special needs. All kids are disruptive. You just have to wait longer till you can take along a kid who has special needs.

    I will need to go on Rosh Hashana to hear the shofar, but unfortunately, I will not be able to attend the whole service. Many women just come for the shofar and then go home. Our synagogue even has a courtyard for mothers who have babies that they don't want to take out of the carriage and bring upstairs.

    I think you should go easier on yourself with expectations. If Max is happy in the regular kids' room, leave him there. If you want to look for another place that is more comfortable with kids in the main room, do that. Don't be afraid to send your husband with Sabrina, while you stay home with Max, or you can go with Sabrina instead.
    Or maybe you can all go for a shorter time.

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  25. The Daniel Jordan Fiddle Foundation created a great resource "Autism and the Faith Community." Available for free here:http://www.djfiddlefoundation.org/autism_and_faith.cfm

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  26. My church offers a special needs mass once a month in a small chapel that has a ramp. Usually about 30 people attend with children with all sorts of disabilities. The priest includes the children by having them serve as alter boys/girls, bring up the gifts and sing songs. After the mass there is a respite for families to leave their special needs child in which a special ed teacher, a nurse and student volunteers entertain the kids while their parents have a night out. Since my son is only 2, we haven't taken advantage of this yet but eventually we will. My son also has cerebral palsy and gets overly excited and yells loudly. I like this mass because its a safe zone and no one stares or comments. Also once a month their is a Special Needs group that meets-one for Mom's and another for Dad's to help deal with challenges of a special need child. This could be something your temple could initiate?

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  27. How big is your synagogue? I find that the larger the centre, the more services it offers.

    I used to work in the sunday school at my church and we had a couple of kids with special needs. Mostly we just tried to include them as much as possible. If they had behavioural issues, we would usually remain calm, take the kid out of the room if needed or try to distract him/her. The kids would be brought in for the second half of the service (so they would skip the readings and sermons and do the more involved stuff like the Eucharist and the hymns). It helped prevent boredom.

    Perhaps something like that might be a worthwhile compromise- bringing Max to the stuff he can actually identify with, and not the times when he has to sit there and listen. He can still get the feel of things if he's with the kids the rest of the time.

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  28. I attended a church with a "Special Friends" class and after reading this I'm realizing just how valuable it is. It is run by some beautiful and faithful people and is a real class, not a babysitting service. These are mostly teens and early 20's. Sometimes they'll participate in the service, reciting verses or doing sign language or actions to music, and it is truly beautiful by any standard. There are several who come to our church for this because there aren't any more in town. So why is that? Sadly, most of us don't have experience with people with special needs, so this type of thing only comes together by a parent or other person with experience. I've always been curious and wanted to sit in. Perhaps the knowledgeable types need to really make an effort to draw others in, so that we can learn and help take the load off. (Yes, in all your spare time. I'm sorry!) But unfortunately we can't just pull this stuff out of the air. Blogs like this have taught me a lot. I have no connection whatsoever to special needs. Perhaps it's time for the next step.

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  29. Hi Ellen,
    In Christianity some people believe in external forces of Good and Evil (God vs. the Devil). I had somebody try to pray this Devil out of me once. Because they thought that because I have cerebral palsy that Satan had an influence on my life. That I did something wrong to get CP or something like that. I don't believe that. In terms of Accessibility I had some problems too where I wanted to go to a Bible study but they were not going to provide one at an accessible location. Instead, they kept bugging me to have one at my house. Instead of opening the doors for me they wanted me to accomodate them. I live with my parents and they weren't ok with that. So I totally understand where you're coming from when you are talking about needing more accessiblity in places of worship.

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    1. Im stunned they would think CP is a 'devil' or you did something 'wrong' to get CP. They should take the time to learn about CP rather than come up with their own idiotic ideas. Why should you accommodate them, they SHOULD be the ones doing so.

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  30. i am mad at god for givining me ocd however i can help. When i was younger i was able to go to Sunday school in the regular program. i learned about what i needed to do and received holy Communion on time with my peers. You should try inculding max in typical kids classes serice is it possible to have one of his buddies from Circle of friends help him. i hope he gets his barmiza when the time comes
    best of luck
    AZ

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    1. I have PDD NOS and it made my faith stronger.

      Delete
  31. What about trying to hire an aide to come to synagogue with you? That way if Max needed attention, the aide could give it to him. I have a friend who has a 3.5 year old daughter who is vent dependent, one of the girl's nurses regularly comes to church with them ( even though mom can suction in her sleep...)

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  32. Oh don't get me started on this one! Needless to say, we have some of the same problems. No childcare in our church, no 'crying room', no place to go when our son is being too loud except the basement or outside (which doesn't always work as we live in cold MN). So the few times we actually attempt church as a family, one of us usually ends up in the car with our son while the other finishes up mass with our other 2 children. Lovely. I have huge guilt about not attending church, not going as a family, not getting anything out of mass because I'm obsessed with not disturbing everyone else.... Plus, the thought of having to take up the lead on getting some sort of SN mass or childcare or whatever, is enough to make me want to pull my hair out. Argh. I'm very jealous of some of the comments on this post!! Some of you are blessed with some amazing/accommodating churches!! :)

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  33. april corvin from starlight starbrightSeptember 23, 2011 at 7:57 PM

    Our temple, (we are jewish too), lets us bring both of our special needs kids to services, on a regular basis, the temple also provides a hebrew school where they provide one to one aides for both kids. maybe if you talked to them or to the rabbi maybe they will change . Mom Of Jordan and Tyler from starlight.

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  34. My daughter (9) has been attending the church services with us from the beginning, and aside from having to run out with her on occasion when the music seemed to be painful to her over-sensitive good ear, it hasn't been too bad. When she was younger, she did make the occasional inappropriate shrieking noise, but that has thankfully passed.

    I did have her in a Vacation Bible School at one church that proved too overstimulating, crowded, and chaotic, but tried a different one this year that was much more sedate, and she loved it. We always had to provide our own 1:1 aide, tho, and that meant an out-of-pocket cost 10x that of a typical kid's fees. That does bother me, but not a battle I'm up for at this point.

    Some SN moms from a few different churches have been getting together at a coffee shop once a month, and it turned out that the proprietor was also a SN mom, of a young adult. She told us that each of the synagogues in our city have an "Inclusion Committee", committed to making sure that all special needs would be addressed. What a wonderful idea for every place of worship!

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  35. Thanks for this post. This is timely for me personally. I have struggled with this as well, finding a place for Emma to fit in. Our church was not even accessible until this past year. This church is about 45-50 minutes away. I have been looking for one closer because Emma is in better form if we get to church or other ceremonious events within less time. Too much time in the car brings out her unpleasant side.

    The problem that I have found is that all of the churches we have tried are nice, but they want me to go and be with Emma for all events or activities related to children. Then, I often miss my own Sunday school or adult program. I have missed many a worship service because Emma and I are sitting in the car, the lobby or the nursery.

    I am at a loss for what to do, but like you, feel bad not trying to include her as much as possible. I feel even worse that our attendance has been so poor since Emma came along.

    You are in a larger area than we are, so I am confident that you will run across something that is a better fit--if you decide to go looking.

    My prayers are with you. I really appreciate this post. It's not just any day of the week that I can find someone who gets this struggle. Thanks for your openness and honesty.

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  36. Thanks to everyone here for sharing your experiences, ideas, support and your own frustrations. A friend of mine in the congregation shared this post with someone in the clergy, who wants to talk. So that's a start. Annie, you're so right, it's fair for the congregation to ask for input. I was just saying sometimes it can get tiresome being the person to start things up—and sharing some wishful thinking.

    But I feel newly inspired, and it seems feasible that our temple could put some of the ideas here into practice. I hope all of you who have struggled with similar issues got good ideas here, too. I especially loved hearing, Kate, about the inclusion committees in your area. I think that's exactly what we need, for starters.

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  37. Is there a Friendship circle near you? Being started by a Jewish group, I'd bet they have leads on congregations or on how to start a program for your own.

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  38. My husband and I take our son, Kealen, to church each week. Everyone there has been very accepting of Kealen and understanding if he makes noise. Our main problem is that the church was built in the 1920's and is not set up for a child in a wheelchair. The children do Sunday school on the second floor and there is not an elevator. We can't get Kealen into the church when it rains without getting soaked because the wheelchair entrance is in a terrible spot and totally disconnected from the rest of the church. The church is not set up for Kealen to go to the alter for communion in his chair. I haven't pushed the issue -- who is going to pay for these changes in a time when finances are tough? -- but I worry that a place I love is not going to work for us, especially as Kealen (age 3) grows bigger.

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    1. Dont be put off by finance. Its 2011 and the church should be more accessible. If you really are fazed by money, do a fundraising type thing with the aim of making the church more wheelchair friendly.

      My advice is dont just worry, do something about it.

      Delete
  39. Hi, Ellen! I coordinate special needs ministry for my church (Providence Baptist in Raleigh, NC), and we offer the following for families with special needs: (1) 1:1 volunteers from the church, trained and recruited by me (some don't have any experience before serving with us; other do, like a pediatric nurse at Duke who is a member of our church who is paired each year with whichever child is highest need medically speaking), so that kids can be included with non-disabled peers, (2) a sensory room where our aides can come with their child if he/she needs a break or needs some sensory diet activity, (3) a separate class for adults and a few teens with disabilities who don't feel comfortable in a typical adult/teen classes, (4) involvement of people with disabilities in visible roles (for example, we usually have one of the adults from the separate class handing out bulletins at each service) to have a visible reminder to the entire congregation that these are people who we love and who have something to offer, (5) 1:1 support provided for mid-week activities for kids and youth, and (6) respite care once a quarter in which our team - including medical and special ed professionals as well as volunteers trained by us - offer three hours of care for kids with special needs and their siblings (with 1:1 for kids with special needs and 1 volunteer per 3 siblings), including families throughout our city and not just our church. We're considering having a separate class for some kids during one of our services, but inclusion with 1:1 support is effective right now for all our kids. New parents meet with me and together we fill out an intake form so they can help us know what we need to know to welcome and love their child.

    I write a blog about special needs ministry topics - http://www.TheWorksOfGodDisplayed.com - from a Christian perspective, but a lot of what I share would work in other faith settings too. My email is shannon@theworksofgoddisplayed.com if you or any of your readers want to connect more about this! I love what I get to do at our church, and I love talking to other churches and parents to figure out how they can work to make their place of worship inclusive and accessible.

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  40. Oh, and I forgot to mention worship-specific stuff: Kids and adults with disabilities are welcome in the church services in our worship center. If families prefer, they also have the option of worshiping in our amphitheater, where we project the main service into another room with lower volume - a lot of families with NT kids prefer that setting too. We let parents make that choice, though. We don't decide for them.

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  41. Our dilemma is a bit different. Nick is an adult, but vent-dependent and homebound. In 2 years since he's lived at home (in downtown Manhattan, no less), and the year before that when he was hospitalized, we've been unable to get any local Jewish-based faith programs to be willing to work with him. We have a neighbor in our building who studies with him from time to time, and a rabbi from the fledgling Jewish Community Project visited 2 or 3 times, but he is now no longer with JCP. The Jewish Guild for the Blind, which has a volunteer homebound program (that I actually volunteered for in years past, reading for the elderly in their homes, as long as they were wheelchair accessible), won't accept Nick into the program, because we cannot get him to their offices for an intake appointment. There is a Chabad opening downtown, and maybe they might take an interest (Nick leans more orthodox in many ways, anyway). But, it sure has been frustrating.

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  42. Sometimes all it takes is to put the need out there. Sample post for your weekly church bulletin: "HELP WANTED FOR SPECIAL NEEDS CHILD. 5 volunteers needed (teens or adults) to rotate weekly as a one-on-one with our child in Sunday School. Contact _____ for more information." Then every week, follow up with "HELP WANTED FOR SPECIAL NEEDS CHILD. 4 more volunteers needed," etc.

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  43. A similar essay on a Christianity Today blog: http://blog.christianitytoday.com/women/2011/01/is_your_church_open_to_autism.html

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  44. It has not been easy for us at out Temple, I and other parents have educated the clergy on our children's needs. It has been a give and take, without letting the educators know what Austin needed to be successful they could not provide the correct accondations for him. I give the Rabbis Austin's IEP every year as the religious school year begins. Granted he has not needed all that much other then some Hebrew Tutoring for his Bar Mitzvah, but all of the teachers, Clergy, and aides all know what Austin needs. The Temple has a Special Needs coordinator and provides aides to the kids that need it. There are some limitations to what the Temple can provide, but they try the best they can. The Rabbi's have developed inclusive Bar and Bat Mitzvah programs, and earlier this year I was privileged to take part in a Confirmation Ceremony for a friend's daughter who needed accommodations. The ceremony was better and more meaningful then the regular Confirmation program. In the meantime as President of my Sisterhood and Temple Board member, I am proud to say that the Sisterhood will once again provide the interpreters for the High Holiday services this week and next, primarily for the Hearing Impaired Parent at the Temple. We also will have a special disability friendly service for the residents of the Jewish Group Homes that have recently opened in Fairfax County. By the way, I attend a Reform Temple and consider myself to be religious so the first comment is very insulting.

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  45. Ellen--This has always been one of the most difficult decisions for me. I too want to pray and reflect during the High Holidays--but I also want my children to participate.

    My Samuel is much more involved than Max and will never understand what is happening. So we made the decision to leave him at home. But we always bring him to the final service of Yom Kippur so he can fulfill the mitzvah of hearing the Sofar.

    I completely understand, your feeling of calling the Rabbis and them saying come in and talk about it. They should just do it because it is the right thing to do & you shouldn't have to do everything. On the other hand, if you want some resources of who to contact about starting something at your synagogue, let me know and I'll give them to you.

    You can't do it now, obviously, but I would suggest you do some "shul shopping" during the year. A perfect synagogue maybe out there just waiting for your family.

    L'shana Tova to your entire family. May you be blessed with a happy and sweet year!

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  46. We've been schlepping our son Danny with CP and intellectual disabilities to synagogue from a very young age, and now at age 16,he's very comfortable there. A few years ago, a group of us parents who have kids with special needs started a wonderful service called "Koleinu" (Our Voices" using the Tikvah service from Camp Ramah California, so now we alternate between the special needs service and the "regular" service and he does fine at both, although he is much more engaged in the special needs service. Like many kids with special needs, Danny thrives on the structure and routine, and most of all, the music.

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  47. Ellen
    I believe you live in our area. We are members of Bnai Israel, a conservative synagogue in Millburn NJ. Our synagogue has an inclusion commitee and has a monthly yeldeinu service for children and adults with special needs. This service is led by a special education teacher and is also held on the high holidays. Another option would be to contact Metro West UJC to see if they can recommend another synagogue with similar accommodations or if they can help your shul institute an inclusive program.

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Thanks for sharing!