Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

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Davening Stereotypes

Just because it’s funny.

He’s Gotta Get It Somewhere

I just can’t BELIEVE the things people say to my husband and how little respect he gets.

Today a student sat on his lap (a middle school boy!) because there weren’t enough chairs in the room.  The student was told it was inappropriate so the student said “hey, the guy only has 2 kids— he’s gotta get it somewhere!”

Sometimes my husband wears colored shirts to school.  Or a colorful tallis during davening.  The rich parents are complaining.  If regular parents complain in a private school, nothing happens.  If the RICH parents complain, people get in trouble— for NOTHING.  Tell me where in halacha it says men can’t wear colored shirts.  Or a nice tallis with color.

And because he wears such things, he’s now being called Lipa.  Lipa!

Lately the difference in middos between different schools has been eating at me and I just need to VENT.

I Know Why Moshiach Isn’t Here Yet

Moshiach isn’t here yet because he doesn’t know whether to wear a kippah srugah, a velvet yarmulke, black and white clothing, colored clothing…. or if she is a woman (I know, I know)— whether to wear stockings with a seam, a shaitel, a hat, a snood, a tichel……   I have a very “WHY can’t we all just GET ALONG” attitude about Judaism and my husband seems to attract the crazies!!!!!  JUST THIS WEEK:

1) Three different parents from a more “right wing” school have spoken to my husband about him working at a more “left wing” school (he had worked in the past at the more “right wing” school).  He’s gotten comments such as these.  “Have you been demoted?”  “Has your student gone off the derech yet?  It’s only a matter of time if he goes to ___ school”.  “Why did your student’s parents switch him to a non frum school?”  (It IS frum, just more left wing than the other school— sheesh— and at any rate, why the #$%#$% is it anyone’s business why a kid goes to a particular school?  Parents know their child best.)

2) One parent kept going on and on so my husband said how great it is to work at a school where the students have the opportunity to make a parnassah.  Well ok my husband should have kept his mouth shut but apparently the other man almost beat up my husband for saying that men should work for a living and not sit in kollel.  He then told him that attitudes like his bring down our neighborhood and he should move to another neighborhood.   Um, right, because EVERY man in this neighborhood should learn in kollel.  Yeah—- I see their wives are all making $100,000 a year— not.  How about supporting yourselves and not living off of government assistance as you decide to have as many children as you want?

Enough already, people.  LIVE AND LET LIVE.  HaShem has too many assistants.

It’s my blog and I’ll vent if I want to.

 

Editing to add a bunch of similar stuff from a previous post— may as well stick all of this crud together in one post to keep track of it all— might write a book someday about how to get along with different groups of Jews and not make yourself sound like a total asshole.

Just the STUPID ridiculous things people have said to us this summer about our kids and/or about my mother in law dying.  Here’s a fun sampling.  PS— the ones that involve Orthodox Jews?  I’ve been asked to stop posting about those on facebook because of Chillul HaShem.  You know what’s Chillul HaShem in my book?  People not being aware that people of all colors, shapes, sizes, and yes, religions can be ASSHOLES.  Sorry for the language but it’s my blog and I’ve got to curse.  Read on.

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1)  When my husband takes one of our kids for a walk in the special needs stroller and walks by a particular house, a bratty kid (unsupervised of course) says….  “WALK MUCH?”   Another group of kids (with the father right there not saying anything because he can’t stand our kids even more than his children) says….  “baby baby…. goo goo gaaa gaaaa”.  Yep, fellow Orthodox Jews.

2)  When my husband asked a man at the zoo to please stop staying at our son (who was screaming “I AM A PSYCHO!”), he got punched.  HARD.  In the stomach.  (my husband, not my son.  But still!)

3)  Right to my husband’s face  “is your son still a freak?”

4)  At synagogue my husband was told he shouldn’t say kaddish for his mother because she didn’t believe in God.    Nobody said anything because the person who said it learns full time (in Orthodox Judaism the men who learn full time and don’t work for a living are held to a very high regard by many.  Me personally?  I’m FINE with men learning full time ***IF*** they can do it without Medicaid, food stamps, WIC, section 8, and all the rest because sucking off the government is not “making it” financially nor is it supporting your wife and family.)  So when someone saves for years in order to enter Kollel I think it’s wonderful.  How often does THAT happen?!?!

5)  I think the extreme idiot award goes to the person calling himself an Orthodox Jew who told my husband his mother died because he shaved off his beard like a goy (deragatory word for non-Jew). (my husband follows Rabbi Moshe Feinstein who wrote about how men living in America can shave their beards for particular reasons while being Orthodox Jews).

6)  During shiva, a tzedakah organization called for money. Hubby said no, he’s sitting shiva. They called back and left a message and an email. The email said that she died SO THAT he’d have a chance to donate to a worthy organization—- guess who is never getting a penny from us!??!?!? what is WITH people?

Seriously?

I haven’t blogged since May.  Seriously?

Here’s what you missed.  Wilma KILLED my finger.  Got 3 xrays– it wasn’t broken– “just” a bad sprain.  But that bad sprain hurt worse than many of the broken bones I’ve had in my life (all my broken bones have been on purpose through surgery- never by accident– funny that.)  It’s been about 10 weeks now and I’m starting to have days where I don’t notice the pain at all.  Until I try to bend it.  ugh.

My mother in law died.  She had battled lupus for over a decade valiantly— we all knew this was coming.  Except that we didn’t.  We all thought we’d get another year or two out of her— everytime she was hospitalized we figured she’d make it back to the nursing home and we’d still have more time.  So we were all very shaken up.  She had gotten out of the nursing home after 10 months and had been living at home for 35 days when she was hospitalized for a listeria infection (she was prone to every infection).  She got pneumonia and respiratory distress and we STILL thought we weren’t losing her. But then the internal bleeding started and the doctors stopped all medications except for morphine and told my father in law that the time was coming that week.

Shiva was surreal.  In our home we had a million chairs, an Aron and Torah, tables, siddurim, a candle burning for a week, minyanim three times a day, and the kids were out of sorts to say the least.  Picture me upstairs every morning at 7:00 am saying “shhhhh the men are trying to daven– you CANNOT yell tushy!”.  The community cooked dinners for us for a week (good thing— I had to do all the camp schlepping, all the laundry, all the dishes, EVERYTHING— hubby wasn’t allowed out of the chair for a week except to go to the bathroom).  If you’re unfamiliar with Orthodox Jewish mourning customs I encourage you to google.  It’s fascinating.  Comforting and CRAZY at the same time.  I don’t remember five minutes of calm that week.  Whenever a minyan wasn’t happening, visitors were.

Camp SUCKED this summer and the kids aren’t going back next year.  I mean it this time.  Fred got Hand Foot and Mouth disease on a Friday (no camp on Fridays) so we kept him home from camp that Monday.  Camp nurse calls to send Wilma home.  She’d been exposed.  It’s not the plague, people.  So she said I’d need a doctor’s note to send both kids back the next day.  Rushed them both to the doctor on Monday afternoon after getting her.  Got the note— she didn’t have it and he was no longer contagious.  Sent them both Tuesday.  Got the call again— they didn’t like the look of his rash and he needed to stay home for a week.  So I kept her home on Monday for being exposed, and kept him home for a week for a no longer contagious rash.  That’s the kind of summer we had with this place.  The DUMBEST projects came home after they asked me for an explanation of where they are academically and I gave it to them in writing—- they had them doing preschool level worksheets.  Daily.  And watching movies.  Daily.  There is exactly one AFFORDABLE special needs camp on this side of town and I’m DONE with it.  Next summer– camp Mommy?  ugh.  There was a month between camp and school (that month ends this coming Monday) and I feel like a truck ran me over.  In order to send them to a “typical” camp I’d have to come up with tuition for 2 kids and $$$ for two one on one aides for 2 kids.  In order to send them to another special needs camp I’d have to pay more money or shlepp them to the other side of town.

But what’s on my mind this week is the title of this post…. .SERIOUSLY?  Just the STUPID ridiculous things people have said to us this summer about our kids and/or about my mother in law dying.  Here’s a fun sampling.  PS— the ones that involve Orthodox Jews?  I’ve been asked to stop posting about those on facebook because of Chillul HaShem.  You know what’s Chillul HaShem in my book?  People not being aware that people of all colors, shapes, sizes, and yes, religions can be ASSHOLES.  Sorry for the language but it’s my blog and I’ve got to curse.  Read on.

********************************************************

1)  When my husband takes one of our kids for a walk in the special needs stroller and walks by a particular house, a bratty kid (unsupervised of course) says….  “WALK MUCH?”   Another group of kids (with the father right there not saying anything because he can’t stand our kids even more than his children) says….  “baby baby…. goo goo gaaa gaaaa”.  Yep, fellow Orthodox Jews.

2)  When my husband asked a man at the zoo to please stop staying at our son (who was screaming “I AM A PSYCHO!”), he got punched.  HARD.  In the stomach.  (my husband, not my son.  But still!)

3)  Right to my husband’s face  “is your son still a freak?”

4)  At synagogue my husband was told he shouldn’t say kaddish for his mother because she didn’t believe in God.    Nobody said anything because the person who said it learns full time (in Orthodox Judaism the men who learn full time and don’t work for a living are held to a very high regard by many.  Me personally?  I’m FINE with men learning full time ***IF*** they can do it without Medicaid, food stamps, WIC, section 8, and all the rest because sucking off the government is not “making it” financially nor is it supporting your wife and family.)  So when someone saves for years in order to enter Kollel I think it’s wonderful.  How often does THAT happen?!?!

5)  I think the extreme idiot award goes to the person calling himself an Orthodox Jew who told my husband his mother died because he shaved off his beard like a goy (deragatory word for non-Jew). (my husband follows Rabbi Moshe Feinstein who wrote about how men living in America can shave their beards for particular reasons while being Orthodox Jews).

6)  During shiva, a tzedakah organization called for money. Hubby said no, he’s sitting shiva. They called back and left a message and an email. The email said that she died SO THAT he’d have a chance to donate to a worthy organization—- guess who is never getting a penny from us!??!?!? what is WITH people?

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That’s all for now– just needed to get those tidbits off my chest.  I have PLENTY more to say on various topics so I WILL try to blog more frequently…….

 

 

Twins Are Ready To Go To Shul…. But How?

I just posted this in a facebook group for Orthodox Jewish moms of “special” children. I’d love the opinions of the fellow Jews reading this….. how would you handle shul if you were me?

opinions please! My twins turn 7 tomorrow (!) and are very high functioning except for severe behaviors— fully verbal and cognitively fine— both have autism. One twin will start receiving the Ohio SELF waiver in February— we’ll be using much of it for therapy insurance won’t cover and some to pay for a DECENT summer day camp (the only special needs camp we’ve been able to afford has gotten much suckier— a JEWISH special needs camp would be ideal, but this is Ohio….). But we’ll have more money we can use to have a certified person accompany me and the kids in the community— most places I cannot take both twins by myself because of severe and dangerous behaviors. We haven’t been attending shul at all. My twins’ only exposure to shul has been on Simchas Torah when Abba goes to a hashkama minyan, comes back to get us, and we go do the dancing. We’re safe at shul with one adult for each twin. So being that my kids are very cognitively aware and are learning davening and do have many many moments each day which are 100% FINE, but being that if I were to take them both to shul by myself, as soon as one twin breaks down I’d need to take them both home and that’s physically impossible to do due to the unpredictability of severe behaviors (when I walk with them both during a double meltdown, strangers get bitten or get shoes thrown at them)—— I’d like to take someone to shul with me. I don’t want my husband to need to leave shul or be disturbed at all. As soon as I hear my son melt down on the men’s side I need my husband to be able to walk him outside and have me or my helper meet him and take him home. If my daughter melts down I need to have my helper or myself take her home. If I can do this, we can finally enjoy shul as a family, I believe. We’d do 20 minutes, then 40….. I wouldn’t force 3 hours on 7 year olds— but severe behaviors could happen 10 minutes in with one twin or both and I physically can’t take them both there or home. So here’s my question——- do I hire a Jew or a non Jew? A non Jew isn’t allowed into an Orthodox shul. A Jew would need to drive on Shabbos to get to us. An Orthodox Jew wouldn’t be certified to be able to be paid by this waiver to help us— we have to choose from a list of people…… do I ask the Rav for a heter to bring a non Jewish worker into shul? Do I ask for a heter to hire a Jew even though that means the Jew would drive? It’s a strange conundrum. For the rest of the week I can hire whomever but how do I handle Shabbos and Yom Tov knowing that’s when I need help the very most? (the last time I took them both for a walk by myself we were all stuck crying for half an hour until someone went into shul to get my husband who did not enjoy having his davening interrupted to help get them safely home). **OR** do I hire a non Jew to stay with one twin at home while I take the other twin to shul and just switch twins each week? And if I go that route, what are the rules of hiring a non Jew to work on Shabbos and Yom Tov? I know other people in this group have non Jewish helpers on Shabbos but I haven’t seen anyone yet have this shul conundrum……. thoughts?

Dayenu

In Judaism we have a special song we sing at Passover time— if God had given us just this it would have been have been enough.  If he had given us this but not that it would have been enough.  Sometimes when I vent I turn it around.

I’m a bit discouraged this week and just need to throw up my hands and say Dayenu.

If I had twins, Dayenu.

If I had special needs twins, Dayenu.

If I had to work because we can’t survive on hubby’s income alone, Dayenu.

If I had to work evenings because daytime is chewed up by paperwork and meetings, Dayenu.

If I had to do laundry, clean, cook, pay bills, Dayenu.

If I had to go to IEP meetings, ETR meetings, FBA meetings, Dayenu.

If I had to balance the schedules of the outreach worker from the autism center, the outreach worker from the behavior center, the outreach worker from the board of developmental disabilities, Dayenu.

If I had to balance the schedules of the neurologists, psychiatrist, behavior therapist, speech therapist, developmental pediatrician, Dayenu.  (we’re not currently doing OT or PT outside of school hours— they’re six years old and don’t get home till after 4:00 for pete’s sake—- there are only four days a week we can cram after school therapies!)

If I applied for SSI and got denied, Dayenu.  If I re-applied with a lawyer and am killing lots of trees in prep for a second denial and subsequent appeal and court date, Dayenu.

If I HATE the behavior center and am required by three different psychiatrists to take my kids there so I fill out an hour’s worth of paperwork for a new developmental pediatrician so that we can quit the behavior center therapist, outreach worker, and psychiatrist and the new developmental ped can handle our med management, Dayenu.

If I had a daughter who poops herself five or six times most days after school on purpose and NEVER uses a toilet at age six, Dayenu.

If said daughter has a GI doc who claims she’s constipated and is giving her miralax and metamucil protocol each day, Dayenu.

If I have to play the medication roulette game between clonidine, tenex, abilify, focalin, vyvanse for two different children with three different psychiatrists and a developmental pediatrician, Dayenu.

If I have to survive double autism meltdowns in public complete with biting, screaming, flopping and refusing to move, stares from strangers, and unsolicited parenting advice, Dayenu.

If I have to have the school district tell me that they don’t need ABA (and insurance won’t pay for it either), Dayenu.

If I have to have the school district tell me that they’re too high functioning to be sent by the district to an autism school and they can handle them at a regular public school, Dayenu.

If I’d rather send them to a Jewish day school but know that I can’t possibly give up the services we’re getting at public school and have to figure out how to get Judaism into them outside of school hours, Dayenu.

If I, in an effort to save money, want to bring a VERY high rent payment down to a reasonable mortgage payment and am thinking about purchasing our first home at age 39, Dayenu.

If to purchase said home, we need down payment assistance and to qualify to receive the downpayment assistance I have to take a course which requires me to cancel the twins’ after school appointments for an entire week and find an after school babysitter, Dayenu.

If I have to prepare for Purim, Dayenu.

If I have to prepare for Passover, Dayenu.

But put all of them together and you have one very tired work at home mommy.

Vent over.

Such a bad mommy blogger…..

It’s been far too long.  But I’ve been launching a new business website, and now I have three businesses which are all vying for my attention.  My main business, plus my two side businesses, one of which I did some extra training and moved up a level last week.   I’d LOVE to be the special needs mommy who does laundry, cooks, bakes, pays bills, and organizes while the kids are in school, but even with full day kindergarten my days are still frantic and hectic because I need to do all that stuff PLUS tackle all the business stuff.  PLUS email teachers.  EVERY.  Single.  Day.  Other autism mommies, are you getting the DAILY emails?  Doesn’t it get old?  It’s always something…..

Wilma is not allowed to come on field trips without a parent accompanying her.  “We cannot support her behaviors in an open environment”.   So there’s always a field trip (#2 is coming up next Wednesday and it’s only early October) and if I don’t come, she’ll give me hell because she won’t be allowed to go.  So erev Yom Kippur (for the non Jews, that’s the day before a Jewish holiday— big cooking day)— I was at the zoo all day.  Next Wednesday, it’s the fruit farm.  Is it legal for them to require a parent just because she’s special needs?  Probably not.  I don’t want to fight it.

Fred is biting every day.  On days he doesn’t bite, he hits and/or kicks.  I get the notes home always with the smiley faces noting that the other kids are accepting of it and encouraging of him “use your words!  Calm down!”.  I’ve nicely requested an FBA twice.  They want to wait until they see CONSISTENT biting (read:  a week without a Jewish holiday where the kid is THERE every day).  Fine.  I’m not fighting it yet…. but after the chagim (Jewish holidays), I might just call a conference.  They plan to beef up the ISA’s presence with Fred (kind of like assigning him a one on one aide which is what the FBA would probably lead to anyway)— but will Mr X’s presence pinpoint the source of the biting, or just be a response block?  I don’t want to fight it.

Fred is now on 15 mg of abilify per day.  Yes, FIFTEEN.

The gifted program at Fred’s school did extensive testing on him and want to grade accelerate him.  HELL to the no.  You’re going to put a kindergartener who is BARELY potty trained, can’t make friends, can’t share, can’t take turns, can’t be patient, can’t take no for an answer…. into first grade?  So they’re going to speak to Fred’s teacher and IS and figure out a plan to get him some gifted work to do while remaining WITH his peers and learning what he needs to learn in kindergarten.  Sure, he can do fifth grade math now, but if you ask him to wait in line he screams and bites.  They told me they’d never had a kid in the school be so academically advanced while so emotionally/behaviorally deficient.  Thanks, gang, good to know.

Between the center for autism follow up appointments, the center for autism outreach appointments, the old psychiatrists and the new psychiatrist, the neurologists, the weekly therapy appointments, the weekly outreach appointments, the speech therapy, and now I’m being told my kids can’t possibly exist without a weight loss program (for Wilma) and occupational therapy outside of school hours…… I’m beginning to think I need a full time secretary just to schedule my kids’ lives. On the other hand— I think I’ll hire one secretary for that, one to run my businesses, and one assistant to take care of my housework while I go take a nap.

 

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