tag:blogger.com,1999:blog-401303964563152307.post5310374434735904735..comments2024-03-17T12:02:12.410-04:00Comments on Love That Max : Why is it so hard to find a place of worship that welcomes kids with special needs?Ellen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger44125tag:blogger.com,1999:blog-401303964563152307.post-54057495298878177382013-08-01T11:13:57.986-04:002013-08-01T11:13:57.986-04:00Really why should temples, churches be exempt that...Really why should temples, churches be exempt that sounds utterly ridiculous to me. tharahttps://www.blogger.com/profile/06178926420365797564noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-19410454648081806172012-09-25T10:47:32.786-04:002012-09-25T10:47:32.786-04:00Hi
I am an advocate and I have been trying to addr...Hi<br />I am an advocate and I have been trying to address this problem in my area. This year I worked with my temple and the local JCC we offered a community wide special needs service for families. We provided a social story in advance if you RSVP and sadly no one attended the service. We want to continue our efforts and try another program in December around hHanukah any thoughts on how to find interested families. If you are in the New Haven area and are interested please call me 203-887-3996<br />Thanks<br />TiffanyAnonymoushttps://www.blogger.com/profile/12587732288990673889noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-63022403772052576812012-09-25T10:44:47.791-04:002012-09-25T10:44:47.791-04:00Ellen, I share your frustration (different religio...Ellen, I share your frustration (different religion, similar problems). <br /><br />I think it might be wise not just to ask "do you have a program for children with special needs" but to think about what you really want for Max and what would be most beneficial to him now and in the future. Make a list so you know what you really need that program you're looking for to do. Is it full inclusion? A special class? Something in between? Not every program will be a good fit for every child. <br /><br />Though you don't want to be the person leading the charge, sometimes it takes being the person to step forward and say publicly, "we love this community, but we need a solution for this problem. We need help from you to do that, because our family by itself cannot solve it." If saying that doesn't get you support and help to find a good solution, then you know another congregation is definitely in order....kadierahttps://www.blogger.com/profile/03303473037288003918noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-29369399961641821782012-09-23T21:35:13.146-04:002012-09-23T21:35:13.146-04:00No, Anon, it's not "like all the parents ...No, Anon, it's not "like all the parents that drop their kids off at the nursery every Sunday (or whatever day you attend services), but can't take one day out the month to help back there." I said I was willing to be on a committee, but was not willing to lead the charge. You are so clearly not a parent of a kid with special needs. Perhaps you will be blessed with one someday, it will surely open your eyes. <br /><br />I'm sorry to hear about more frustrations. Jodi, it would be temple heaven to be at one with you that would be good for all our kids! <br /><br />The outpouring of support I've received for this post (well, most of it) has been heartening. I've gotten emails from many leaders in the field, and I'm going to put together a list of resources and post it here. To the person who recommended I speak with Ginny Thornburgh: Great minds! Someone I know at Easter Seals connected us. I am going to chat with her this week. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-68469923139662003732012-09-23T16:32:57.928-04:002012-09-23T16:32:57.928-04:00Thank you for voicing the frustrations of many. I...Thank you for voicing the frustrations of many. I hope leaders of all faiths are listening, as they really are very behind in the area of inclusion. The Boy has asked for a few years to go to Sunday School, not really understanding what it's all about, bt feeling like he's missing out on something his NT peers do. I have yet to find a solution.Anniehttp://simpleijustdo.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-45653009911663929312012-09-23T13:33:51.799-04:002012-09-23T13:33:51.799-04:00Great post! We empathize with every word. We trie...Great post! We empathize with every word. We tried the two major synagogues in our community (one Reform, one Conservative) and both were awful. The Conservative teacher refused any accomodations, and insisted that our son finish all the fine-motor arts & crafts projects, turning a three hour Hebrew school session into an 8 hour day (he was told to complete his assignments at home). The teacher ignored him, was rude to me, and the kids teased him. He wore glasses and a brace on one leg and had serious fine motor problems from CP. He began to hate Hebrew School. We pulled him out and on a friend's recommendation, went to our local Chabad with great trepidation---and it was wonderful! Our son was included, excused from arts & crafts frustrations, had in depth Jewish learning, and loads of love from a warm, inclusive and supportive congregation which never wavered, and was never judgmental. Don't give up--it may take time, but there is a congregation out there where Max will be loved, included and accepted!Sarahnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-18086505120213014792012-09-23T13:17:52.753-04:002012-09-23T13:17:52.753-04:00Ellen, thanks for writing this post and sharing it...Ellen, thanks for writing this post and sharing it on HuffPo. I hope it gets some people in temples and churches thinking of how they can include people with disabilities in the spiritual life of their communities. I pretty much had to give up on Sunday school when my son Tevis was a preschooler, because they frequently had to come find me and take me out of my class because of his explosive behavior (the worst was when he attacked the teacher and broke her glasses).<br /><br />But I am happy to report that, now that Tevis is an adult, he is finally part of a church community. We moved to a house at the edge of a college campus and just 2 blocks from our house is a coffee shop/church ministry for the students and people in the neighborhood. Tevis loves to go there for the Saturday evening service and he had been welcomed with open arms. He recently became a member, and it warms my heart that he has this thing that he does, on his own, as an adult, and that this connection will be there when I am gone. He goes every week and also participates in work days and when they have special events like serving hamburgers and hot dogs to the students the first week of classes. I tell you this story to give you hope that, eventually, Max can find that spiritual community you want for him.Galenhttps://www.blogger.com/profile/02133622477462629829noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-74967160271678033612012-09-23T12:43:05.904-04:002012-09-23T12:43:05.904-04:00We just changed synagogues because their religious...We just changed synagogues because their religious school was impossible for my "typical" (man I hate that word) but child who was having behavior issues in class. It became the most intolerant, ridiculous experience ever. And I kept thinking, I'm paying how much for this? This is supposed to help my child learn to love being Jewish?<br /><br />Religion is not always tolerant, even though it should be. And I wish you lived closer to me. Because we found, and joined the loveliest, most inclusive temple ever. And also, we would get to hang out more.jodifurhttps://www.blogger.com/profile/02436403330073542241noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-5526815785978340382012-09-23T10:41:15.768-04:002012-09-23T10:41:15.768-04:00My kid is almost 15 and synagogue going is difficu...My kid is almost 15 and synagogue going is difficult - he sits pretty well these days though, after an initial settling in phase that can be noisy. What I find interesting is that people say, of course you're welcome but they have no clue how to truly welcome. When I explained to a few people that even entering is hard - that I need people to immediately give us a seat when we enter - we go to a very small minyan in Jerusalem - they were amazed to hear how much this can help us. And that doesn't deal with the rest of the service of course and I'm finished with the children's service - hey, he's 15, how is that the right thing to do for him and/or for me too. I co-founded and run an inclusion program, Shutaf (www.campshutaf.org) in Jerusalem - reverse inclusion - and I've realized from my experience that you can figure it out - that programs can be developed and communities can be inclusive and that money can be found and spent wisely but it's maddening how many Jews are being left off of the communal table - as many as 15% and most likely more when you think of their parents and extended families. It's time for real change, now. Beth Steinberghttps://www.blogger.com/profile/03720774574007551710noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-63344364703684369752012-09-23T07:51:16.867-04:002012-09-23T07:51:16.867-04:00Please contact Ginny Thornburgh at AAPD. She is th...Please contact Ginny Thornburgh at AAPD. She is the pioneer in interfaith initiatives for people with special needs. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-20613824261513205712012-09-23T02:44:50.905-04:002012-09-23T02:44:50.905-04:00"Um, well, nope: I did not want to be the per..."Um, well, nope: I did not want to be the person charged with spearheading special needs programming. It wasn't that this wasn't a priority for me; it was all the other priorities in my life related to Max.".....One of the biggest problems facing religious institutions today. People want something from them, but aren't willing to contribute their own time and effort to make it happen. Everything can't be the responsibility of the rabbi/pastor/reverend/etc. If you want your temple to offer a program for your child, what are you willing to do to make that program thrive. Its like all the parents that drop their kids off at the nursery every Sunday (or whatever day you attend services), but can't take one day out the month to help back there. We need to move past this gimme gimme phase of religious attendance. Where's the need to serve others?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-41071861256292608922012-09-22T19:31:17.037-04:002012-09-22T19:31:17.037-04:00Just wanted to say that in the Pittsburgh, PA area...Just wanted to say that in the Pittsburgh, PA area there is a church that provides a service called Joyful Noise. While Lutheran by faith, I believ the service is open to everyone. I know you are not in this area, and ts is not a synagogue..lout wanted to spread the word for those in the area who are interested. The church also runs a preschool and welcomes children with special needs. http://www.ourredeemer-peters.org/joyful_noise.htmlChicory Bluehttps://www.blogger.com/profile/01411168515570431153noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-88390896857044387812012-09-22T10:52:06.846-04:002012-09-22T10:52:06.846-04:00Parents of special needs children need practice in...Parents of special needs children need practice inclusion, not separation. Your family should attend services together, as a family. I have lived with "Special Needs" my entire life, my sister has Cerebral Palsy w/ Spastic Quadriplegia, and it was our family that made sure she was included in EVERYTHING. I couldn't imagine trying to leave her behind or trying to make special arrangements for her. She is part of our family and has always been an active participant in every community we lived in. I think that parents and families need to understand that the only way to make changes is to teach society and be daring enough to include your disabled child in every aspect of daily life. I remember attending services as a kid with my sister when we were younger and she was by far the loudest and most disruptive member but our family never budged and never caved in to alienating her or ourourselves from the community. Over time people learn and accept that people with special needs are part of the community and they have always been accepting of that. Shame on parents who want "Special Needs" to be treated differently. We are all different and have "Special Needs" and I think that we need to stop being embarassed and we need to make sure that we are confident in ourselves about integrating into different communities rather than trying to find a program for "Special Needs". The worst thing you can do is separate your children and label them as different. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-70970191423770861162012-09-21T13:48:03.038-04:002012-09-21T13:48:03.038-04:00I have seen the attitude you express over and over...I have seen the attitude you express over and over at churches: "If you want something different, do it yourself.". I understand the theology, but seriously, when you are a super-busy mom, it is simply not that easy. We also need our less social children to be able to transition to a new surrounding/ new people/ new activities WITHOUT us being the ones leading it. It's better for them. Sometimes it's just so much easier to stay our of worship, but really, the church shouldn't be the entity hindering our relationship with God!Christinehttps://www.blogger.com/profile/11950166602781234933noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-88625025321804573482012-09-20T20:41:27.150-04:002012-09-20T20:41:27.150-04:00If they were able to spend millions on a renovatio...If they were able to spend millions on a renovation then it seems to me that the overall congregation size must be enough that they could scrape together people with the skill set and willingness to do better by your son. <br /><br />I was a respite care giver for 24 years. I know how hard inclusion is for some places. I watched one place turn away a family with two autistic children because the younger was too unpredictable in his behaviour. His parents so desperately needed at least 90 minutes where they could pray and focus on themselves and not what he might do next. I was entirely willing to take that on but for liability issues was told they would need to go somewhere bigger. Why on earth should families with challenges have to leave a place that is their spiritual home when Torah tells us that's not good enough?<br /><br />I have high functioning autism myself. At my temple it's no big deal. I am relatively new there and when I faced a challenge I knew I would not handle nearly as well as normal people I told my new friends at a lunch. (And yes they are truly friends which in itself is amazing)<br /><br />The first words out of one persons mouth was why are you telling us this. My heart sank a bit as I thought that was a lead up to some brush off. But the concern of all of them was did I need to tell them because I was afraid they would think less of me. It was such a relief.<br /><br />I was telling them because I knew in all probability the stress of a major life change was about to undo me. It actually wound up being far more catastrophic for me than I expected even but pretty much my entire temple and some of the broader Jewish community was very there for me. It almost makes me cry to think how much they took care of when I could not.<br /><br />I know how exhausting being a parent of or having special needs is or I would say insist your temple do better by you. I hope your new one will. <br /><br />Gareethnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-57061762972561325902012-09-20T20:20:54.322-04:002012-09-20T20:20:54.322-04:00My experience was similar. We joined Kol Ami in W...My experience was similar. We joined Kol Ami in White Plains because they said they were inclusive and they had started a Hebrew school class for pre-Bat Mitzvah students with special needs. I never really liked their Hebrew school program - it really provided no inclusion. The "typical" kids were mean and the mainstream teachers resisted any inclusive. When all the 6th grade went to Ellis Island I asked for my daughter to join and the principal said no, "it is not appropriate". I found the clergy reluctant to be inclusive too. <br /><br />We had my daughter's Bat Mitzvah there and the rabbi and cantor did customize for her. But we had no friend there so no one from the temple was invited to her Bat Mitavah. We felt like an island in the sea of congregants. <br /><br />My daughter knew a number of the girls who attended the Hebrew School from her public school. They ignored her. She noticed! She started to refuse to go to Shabbat services.<br /><br />I was also asked to join the "inclusion committee". I loved your comment: 'I would like a temple to make it their priority to include my son, and kids like him, in services. I will be part of a committee, yes, but I am unable to make it my mission. I am already in charge of so much.'<br /><br />The people who need to be on the inclusion committee are NOT the people asking to be included but the people who are inhibiting inclusion. <br /><br />We resigned our membership and no one really cared why we did.<br /><br />We are temple-less and so alone. Only Friendship Circle is there for us.Unknownhttps://www.blogger.com/profile/13628006023222313181noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-14515328950348179342012-09-20T20:05:19.699-04:002012-09-20T20:05:19.699-04:00I share your struggles. Where are the allies in o...I share your struggles. Where are the allies in our communities? I have been very disappointed by how very little the Jewish community in my area offers for families like mine, especially outside of the Orthodox community.Amber Powersnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-21097075635256455592012-09-20T19:53:05.619-04:002012-09-20T19:53:05.619-04:00I sincerely hope that the new temple works out for...I sincerely hope that the new temple works out for you. We have the same issues with church. We live in a rural area so our choices are few. <br /><br />Like your son, at 14 our daughter cannot just be plopped into the nursery. Seizures and behavior make that dangerous for the little ones. Bethany thinks the couch in the church foyer was put their specifically for her. She plops herself on it the minute we get there and won't get off it or let anyone else sit on it. I have decided to just stay home with her. I can watch her lay on the couch at home. There's just no point in even going! Sylvia Phillipshttp://faithfulmomof9.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-75885712412162760482012-09-20T19:48:34.402-04:002012-09-20T19:48:34.402-04:00Thank you. I advocate for disabled persons and it ...Thank you. I advocate for disabled persons and it is my contention that the religious bodies should not be exempted from the Americans with Disabilities Act. When we exempt any body from a law, we say that it's ok for them to exclude disabled people. I think we have to start with full and even application of the law, and then one by one we have to educate them how to accommodate us, our children, our parents, our siblings, our friends and all other disabled persons. My daughter and I are both disabled, if you ever want to talk about advocacy approaches or any other issue please feel free. And I know, taking care of the details for a disabled child is two jobs, raising him or her is another. Many hugs.BHNhttps://www.blogger.com/profile/13762170818974751420noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-16015520787691117072012-09-20T17:54:16.780-04:002012-09-20T17:54:16.780-04:00Ellen, My heart hurts for you.
I too know what i...Ellen, My heart hurts for you. <br /><br />I too know what it feels like to be turned away by our Jewish institutions. My son passed away 5 years ago at the age of 21 from Duchenne Muscular Dystrophy. In his memory I have started two courses for Rabbincal seminaries. One is on the Rabbinic Role of Inclusion of People with Physical Disabilities and one is on the Rabbinic Role of Inclusion of People with Developmental and Learning Disabilities. My goal is to have these courses as a part of the mandatory curriculum of each Jewish denomination's Rabbinical seminaries. <br /><br />I hope that with time stories like yours will no longer occur because we will have religious leadership that understands it is our obligation to be an inclusive society and that it doesn't necessarily "cost money" to include as part of our people every Jewish child/person.<br /><br />Wishing you, Max and your entire family much strength in the New Year.Shelley Cohennoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-41615022079898826212012-09-20T12:33:02.981-04:002012-09-20T12:33:02.981-04:00Ellen, what a great post to start the New Year. Yo...Ellen, what a great post to start the New Year. You and your readers have provided some great food for thought:<br />We've come a long way baby, and we've a long way to go.<br /><br />From the synagogue staff who kvetched about money to the "special" services the missing element is that we are all created in the Divine Image. That spark is present in the eyes of each person and that is the key to unlocking the great attitudinal barriers that this post and all of the comments reflect.<br /><br />That being said, the only thing left to do is to act. We know that. Meaningful inclusion, meaningful participation--points of entry in many different ways. <br />We have a spiritual and cultural dilemma. For people with disabilities and those who care for them the clock is ticking. We don't want to be "special" anymore. We just want to be in. So......<br /><br />Putting one foot in front of the other, we need to organize differently than we have before. This is not a movement issue or particular to any one institution. Within the Jewish world, change must come from all points. <br /><br />It is, after all, a new year. Time to move beyond reflection to action. It can make all the difference to everyone. <br />Shelly Christensenhttp://www.inclusioninnovations.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-78795182068103730432012-09-20T10:00:39.088-04:002012-09-20T10:00:39.088-04:00HI -- Someone mentioned to me a book called Vulner...HI -- Someone mentioned to me a book called Vulnerable Communion: A Theology of Disability and Hospitality, written by the father of a boy with autism who wasn't accommodated at church. <br /><br />http://www.amazon.com/Vulnerable-Communion-Theology-Disability-Hospitality/dp/1587431777/ref=sr_1_1?ie=UTF8&qid=1348149513&sr=8-1&keywords=vulnerable+communion+a+theology+of+disability+and+hospitality<br /><br />The author is a professor of theology. You might find something of value here. I asked our library to order it. :)BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-91267814860290712682012-09-19T23:10:18.403-04:002012-09-19T23:10:18.403-04:00Thank you for the support, everyone, and good wish...Thank you for the support, everyone, and good wishes and suggestions (including the waffle weave t's, Emily; off to look for them after this). I'm sorry to hear some of you have had similar experiences finding a congregation, and happy to hear about the successes. Major props to those of you who have taken it upon themselves to pave the way in your ministries. I've gotten a lot of emails with ideas, including recommendations for programs. Still hoping the new temple works out. Wishing all of you who celebrate the New Year one filled with Good Things.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-92129975797307070382012-09-19T23:03:12.038-04:002012-09-19T23:03:12.038-04:00Ellen, thanks for sharing this. I don't have ...Ellen, thanks for sharing this. I don't have any insight to add except for on a purely practical note. Your weekly activities sound familiar, and you mentioned shirts which we've struggled with. Not sure how you're working with Max, but Hannah Andersson boxy ts work well for us as do waffle weave henleys from Lands End or Target (cherokee I think), because the material is stretchy enough and the neck holes wide enough to be pulled off. Good luck on all fronts.Emilynoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-45170979287744841682012-09-19T16:25:46.872-04:002012-09-19T16:25:46.872-04:00We are lucky to belong to s synagogue that is '...We are lucky to belong to s synagogue that is 'getting there.' they hired an inclusion coordinator for religious school last year, and my son had his Bar Mitzvah there 18 months ago. I blaze the path, but they are willing participants. <br /><br />On this road I have found a GREAT resource, jgateways.com. Their resources pages have amazing, free resources, including social stories for holidays and going to temple. <br /><br />Right there with you, sister. Shanah Tovah u'metukah!<br /><br />RachelAutism Mavenhttps://www.blogger.com/profile/04765233323672180229noreply@blogger.com