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

Most moms worry a bit about second grade starting— they worry about whether their kids have all their supplies, whether they’ll eat their lunch— whether they’ll like their new teachers.

Me?  I worry that my enco kid will poop at school.  We’d BEEN on a straight after dinner schedule for a while but over the past few days that’s gone out the window (perhaps since school is starting?).  I gave up on underpants here at home—-  my 7 year old pooped herself maybe 6 times yesterday (lost count) and 3-4 times today.  The once a day after dinner poop doesn’t concern me vis a vis school…. but this new schedule is worrisome.  She’ll have the same aide as last year who will help her change, force her to get the rest in the toilet, deal with the meltdown, etc….. but as years go by it’s more and more heartbreaking.  I hope I sent enough underpants changes.

I worry that my other kid will get enough bathroom reminders— if he’s not TOLD to pee, he’ll happily wet himself.  I worry that he’ll spend 95% of the day screaming his head off.  I worry that he’ll continue to ignore everyone at recess and count the woodchips or line up trash he finds on the ground.  I worry about meeting strange kids at the library again and again who tell me “oh, your son goes to ___ school.  He’s the one who screams all the time!”

Academics?  Not worried.  Social skills, behavior, and toileting?  Very worried.

I might get arrested

Fred has his third loose tooth.  It’s been loose for 2 weeks now.  I wiggled it a little bit (he HATES when I wiggle it!) and he said “if you wiggle it one more time I’ll call the police, punk.”

 

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.

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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?

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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…….

 

 

Echolalia is fun

A certain autistic echolalic 7 year old with a photographic memory and a speech impediment said something very strange at school last week….. “Chippendales two bit whore!” soooooo of course I got a call from the teacher. She asked him where it’s from and he said (picture this being said in a very nasal monotone): “Big Nate, I Can’t Take It! page 184″ (yes I promise he said the page number!). As she’s on the phone I open the book to page 184. Nate is selling a calendar to an old lady who says “I’ll take the puppies one”. Nate says “or….. Chippendales 2004: Hot N Beefy”! 2004. Not two bit whore. My kid is horribly inappropriate but the speech impediment makes him much much more so. An entire chapter of my upcoming book shall be relegated to things they yell at school that make me look like the world’s worst parent.

Mother’s day with a kid with encopresis: I was on the phone saying “yeah, happy mother’s day, I cleaned up three accidents today”. The culprit walked by and said “they were on PURPOSES!”

Happy mother’s day, one and all!

 

Blood Pressure

Irony: when my kid tells *me* that I’m raising his blood pressure.

THIS is what we should be talking about.  Not lighting it up blue, not talking about how neurological differences are au-some…. THIS is what we should be talking about.  I thank my lucky stars each day that no noses have been broken yet in our home— nobody has been hospitalized yet.  My twins, indeed, are the HIGHEST functioning children of parents in this facebook group to which my friend refers in her post.  But I fear for the future…….  if things worsen and my kids get bigger and stronger than me.  I know for certain that my son would have been put in residential treatment years ago if not for the therapies and medications we’ve tried thus far.  My goal in life is to keep my kids home with me, regardless of well meaning friends’ comments “you can’t live like that!  Send them to live in a treatment facility!”

THIS is an au-some post.  Yes, the term au-some is fine.  Just don’t tell me that autism is au-some because it’s NOT.

 

 

Autism Awareness

Autism Awareness (Photo credit: Wikipedia)

 

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