shabbat and special needs

something has been really bugging me for a while but I don't know who to ask about it... these seems about the best place

We are considering a full orthodox conversion. (it seems likely we will at this point)

By and large one of our biggest concerns is for our SPD daughter who is 5. (we have a HIGH NEEDS baby too... but too soon to say if it's SPD also.)

How does this work on things like Shabbat? (for instance how can one give up daily routines and rest and study Torah instead when their child is severely autistic and needs round the clock care?.... or even if they are severely SPD and need constant stimulation.... I just can't picture how it would work...

I'm like totally freaked about walking into an orthodox congregation for the first time and my daughter stimming. we already feel like outsiders as it is, I don't want them to think badly of her. she is sweet hearted but she can't control herself in overstimulating situations.

what are some things your orthodox mamas do that may be different for your SN kids? are their exceptions to the rules for families with SN kids? how does that work?

My 3 kids and I are also celiac and allergic to milk and soy. I'm kinda freaked out about getting invited to shabbat and not being able to eat anything. we're extremely allergic so we check labels for EVERYTHING (not just kosher ) and I cook 95% from scratch. I'm not sure how to approach this. I can't just let a little slide or we'd get quickly ill.

I guess part of my concern is coming from the outside it's already going to be a little out of our comfort zone. and I don't want to cause a big disruption for everyone, nor to make my daughter feel bad.

I don't want such a silly thing to come between our family and Orthodoxy, but... it is a huge part of our daily lives and I have to be realistic too. My older kids are pretty excited about visiting a orthodox congregation soon... and i don't want them to know how nervous I am. But I am! I feel torn!

thoughts???

Elle, I can't answer all your questions about SPD, as I have no experience with that, but the ones about food, I can.

In terms of people's reactions/responses to your families allergies/food issues, I find there are 3 types of people who host:
1. Those who are overwhelmed by the whole "no wheat" (or no-anything) and don't know how to adapt their regular recipes for those with food sensitivies
2. Those who are willing but just need some guidance , who either needs some coaching (like a few suggestions and ideas for what you can eat)
3. Those who are totally cool with it and adapt their recipes easily or find simple substitutes for those with sensitivities.

I would like to consider myself either category #3 or 2 - I have had celiac guests, and its really no big deal. Once I realized that I can substitute flour with corn meal and corn starch, I made a lot of my regular stuff. I also can use my Pesach recipes, which are often wheat free to begin with. And there's always the standard chicken and rice that works!

Dairy is not usually an issue for shabbat meals, as meat is often served, and soy, like wheat, can be avoided with conscious effort.

When I have guests with food restrictions, I find I do a lot of cooking with fresh foods, which avoids a lot of these issues. prepared foods (take-out, etc) tend to have more potentially problematic ingredients.

it all depends on the needs of the child and what you consider the rules to be. for some children minor changes to routine are fine - especially if it is actually just a change in the pattern - so that on friday night/saturdays every week certain things happen.

if it is important to have breakfast at a set time everyday, then it might be the right thing to still do that on shabat. most people's routine changes on weekends anyway, and there is room for a lot of variation in the celebration of shabbat.

the orthodox community is like any other. there are people who will ''get it'' and those who judge unreasonably. people who can cater to different needs, and others for whom it is all too hard. we had very few invites growing up because a) there were 5 kids and most of the families in our community were smaller, but mostly because b) my sister's dietry needs scared too many people. it probably didn't help that one sukkot my parents left in the middle of the meal to rush my littlest sister to hospital, leaving us older 4 at 'friends' house - we had definately outstayed our welcome.

my sister had to use a nebuliser every few hours when we were young. and that included shabbat. you do what you have to do for your child's health. our rabbi has also been known to tell someone with mental-health issues to leave an ipod on over shabbat/yom tov to be used as a distraction.

good luck in your explorations. hopefully you'll find a way to make this work for your family

Many orthodox families also have kids with special needs. Some will be turned off by different behavior, but others will understand. Its the same as it will be in any other community, some people deal better with others disabilities then others.

As for food issues, we have these, and I too make everything from scratch. I deal with it by telling people that it is really hard to host us as there are just too many things we cannot have, I prefer having guests, as its the best way to keep everyone safe. I do not have fun when I need to watch my kids every second and hope that the food is safe.

I do go to my mom occasionally, but I give her safe recipes, and she wants to make sure its safe by her. I have outright refused to go to my IL's because they refuse to adapt anything(Ie kid cannot have olive oil, and MIL refused to use canola oil for just one day.), and feed my kids without asking. They have given my nut allergic child, nuts, and my egg allergic child, eggs. This was 10 minuets after they were informed that he had a major egg reaction the day before, and was on high doses of steroids to control it.

BTW, each of my SIL's have almost killed me at least once . I think I am not their favorite person....Maybe I have a complex!

it'll be ok. i promise. my mother is an insulin dependent diabetic who was, at one point, on an all vegan diet - no animal based protein whatsoever. so for a time she was no sugar, no animal based protein. and we managed, she managed, and they even went out for meals. some people didn't get it, and my mother worked around it. it can be a little uncomfortable at first, but it's ok. once people know, they get it.
also, my father is a doctor. so if he is on call, he wears a beeper. and if it goes off, he uses the phone. doesn't matter if it's shabbos, yom tov, etc. and if he has too, he goes in - i remember him going in to the hospital (driving) on shabbos. (now he is the head of a department of a large hospital so i don't know how often he is on call, and he probably wears a cellphone and not a beeper.)
for medical equipment, like nebulizers, the answer is always to use them. even electric breastpumps - my sister was told to leave it on a timer and use it.
i find that the more religious the rabbi is who you ask, the more "yesses" you'll get than "nos". good luck!

I so appreciate your thoughtful replies!

Is it weird this is my number one concern about converting to orthodoxy? Like seriously... I have other "are you completely crazy to change your entire way of life!?!?" moments... but none that scare me off. THIS scares me. it's like my one real concern. My husband says not to borrow trouble and that if we meet with a Rabbi and He doesn't understand than he isn't the Rabbi for us. I know he's right. he is right... doesn't make the worries go away though.

I have gotten brave about speaking up for us dietary wise. We are used to being odd, left out, overlooked and even spoken rudely about due to it. But, it's generally easy to avoid. I always invite people here instead of going there (so the baby doesn't say eat a piece of wheat bread off of the floor and become quickly ill). I make chicken and rice, or somekinda pot roast and a veggie and nobody even notices I didn't use anything from our "cant have list". BUT My home isn't Kosher yet. AND being that I'm not yet Jewish it would be impossible to have people over for Shabbat.


which leads me to a side question actually? can one keep a kosher kitchen when they are not fully converted yet? Like could I have my kitchen totally kashered and have people over to eat my home? or would it not count as totally kosher until I complete the conversion? (I'm waiting til I can meet with the Rabbi to ask this as well)


So I guess the plan is to discuss this with a Rabbi and ask him to find someone in the congregation that would be understanding and if after the list of "can haves" and "can't dos" they still are willing to put up with us we could go.

anyhow... it's good to talk to you ladies about this. thanks for your support.

:::breath:::: I get entirely too worked up over this. hehe I really do.

It's possible to keep a kosher home before you convert, but due to a technical aspect of the law, you will need to Kasher (to make kosher) your kitchen once again when you convert. The Rabbi who is working with you on your conversion will go over all those things with you, so don't pre-worry!

"don't pre-worry" I like that

There is one other factor, which is that Jews must eat food that is cooked by a Jew. Many restaurants and bakeries that employ non-Jewish cooks get around this by having a Jew turn on the flame or oven and then it is left on all day. By doing this, it is considered that a Jew did the cooking. If you are comfortable having guests, then they should be comfortable "helping" with your cooking until your conversion is complete.

It is so amazing when someone is so drawn to Judaism and takes on all of the Jewish laws. Those of us who have been practicing our whole lives can never come close to the sprituality and greatness that a convert achieves!

I think you will find that there are support systems for special needs families within the Jewish community. Many high school students volunteer with special need kids. Do you have a Friendship Circle in your community? http://www.friendshipcircle.com/about_frie...ternational.asp

, yes to friendship circle!!! It is such a great place to meet other families with sn kids and families of all observance levels are welcome!! I think it is a great place to introduce your dd to the community.

Some synagogues also have special services or programs for sn kids and families, especially around the holiday times. Our Rabbi does some programs on Rosh Hashana usually in the afternoon with shofar blowing etc; for sn kids. our area down syndrome association always send out emails letting jewish families know about his programs.
Some families cannot attend regular services and this means a lot for them.

I also do not know that much about spd specifically, but you could maybe come to services for a short time in the beginning till your dd gets used to the place and people.

As for the food issues, some of us are also gluten intolerant. We do eat out shabbat meals sometimes. Like someone mentioned, some people will be so accommodating and some just won't get it. Our rebbetzin is so accomadating and educated and buys/makes gf stuff for my kids all the time! GF matza balls, soup croutons, cookies, no barley in the cholent etc; But, with most other people I usually let them know what we can have, I always bring our own home baked gf challah, gf desert and sometimes some other dishes, depending on our host.

I'm curious as to how we identify these more religious rabbis...would you care to elaborate?

Elle, it's not at all surprising that you're worrying about this aspect of your life. For us, Shabbat meals are the main form of socializing that we get to do. So yeah, it's important.

I join in with the rest of the folks here who said that there will be those that invite you and take care to make sure that you can eat safely. Of course, you do have to let them know in advance.

I wouldn't say, "more religious", I would say "more knowledgeable". It's easy to say "no" (you and I could say "no"), it's much harder to find a good basis to say "yes".

You clearly have a rabbi for the conversion, and you will need to rely on his judgment, and not shop around. Eventually, once you're established, you might find yourself in contact with many different rabbis and then you might direct your questions to different ones on different topics. For instance, we ask policy questions of one rabbi while we ask technical questions of another.

The Rabbi my husband and I are planning on meeting (if he ever gets back from NY heh) doesn't know about our conversion exactly... My husband him first wrote to him to ask about being a noachide (he wanted to make sure to find a Rabbi that was familiar with that first) and so he hasn't yet gotten to mention conversion. I ASSUME he'd be cool with being "our conversion Rabbi" but we haven't officially asked. the next step is to explain our dietary limitations and SN issues we're dealing with and feel him out on that one. (we NEED an understanding Rabbi. it's just not optional to have one that doesn't get the SN thing.)

Yesterday we were in town and we drove by the chabad house where he teaches (and they have pre school and hebrew school and so forth)... I tried to imagine us there. oh it's so intimidating! My son is really into it... like he keeps asking if he can go to hebrew school (the Rabbi offered it to my husband even as "noachides" which surprised me. and my son overheard my husband telling me about it) I don't know... I just wish we could talk to him and get those first few awkward meetings out of the way. I'm so nervous and anxious to begin this new chapter. I'm sure every one who converts has those feelings. but I feel so... like I have a foot in one world and a foot in another. I'm ready to be planted down firm. (does that make sense?) We've spent the last like 3 yrs searching, praying, studying and moving (the job market... need I say more?) so yeah. I know it was good for us. it helped us detox from Christianity and ready us for this new life... I know we needed it and it was a blessing. but I'm ready now. (I think?)

anyhow sorry there... small rant. and totally unrelated to SN questions whatsoever. sorry!

Everything you're saying makes perfect sense and is entirely natural for someone in your circumstances. There are forums, you've probably seen... http://jewsbychoice.org/ looks ok, although I don't know them personally. Feel free to join the forum I moderate also, www.torahforums.org (I need to approve members, so make sure to email me so I know you're not spam). We discuss all kinds of topics, and there are several converts on board.

BTW, I recall hearing that Chabad itself do not do conversions. They'll probably direct you to the community rabbi in town that does.

You're aware of the Halacha that converts are supposed to be discouraged? Expect difficulties, it's part of the process.

While Chabad doesn't officially do conversions AFAIK, I know of several conversions they have facilitated using a beis din in NYC - none of the rabbis on the beis din were Chabad but there seems to be an agreement that the beis din will trust the opinion of the individual Chabad rabbi working with the family/individual. It was a lengthy process, however, in the case of the family (several years).