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

COVID 19

Well now all of a sudden we’re living what will be a chapter in our grandchildrens’ textbooks.  If anyone is living under a rock….. the whole world is passing around a novel coronavirus (it probably started in October or November and for most people it’s no big deal but the death rate for those who are elderly or suffering other health conditions is extreme enough that bit by bit over the last couple of weeks everything except groceries, pharmacies, and gas has been shutting down.  Places of work, schools, restaurants, entertainment venues….. it’s all on a long break.  As is my sanity.  I love my children but there’s a definite reason I’m not cut out to homeschool.  We’re about to start their second week of no school (and no time for mommy to work)….. it’s a disaster for them and us emotionally, it’s a disaster financially— it’s just a disaster all around.  THANK GOD, though, none of the four of us have this illness as far as I know.  I’ve been coughing and blowing my nose daily since January, some weeks worse than others but I think at my age (45) I’m finally beginning to develop allergies since I’ve never had a cold last for months.  When the dust settles I’ll go back to an allergist (I had a horrible case of hives in 2005 so I’d been to one before, but that allergy cleared up and I was fine since then).  However, I’d been functional (as functional as someone with all my other health stuff CAN be— I’ll get to all that at some point) enough to do my appointments, my kids’ appointments, errands, etc etc.  But now?  All day in my jammies.  Listening to my kids bitch about school work.  Breaking up my kids’ fights.  Fun times, y’all.

US Intelligence reports warned about a possible pandemic back in Jan and Feb.  NOW in mid March we’re finally shutting down and staying home.  I have so many political thoughts…. but…

Let’s look on the BRIGHT SIDE!

1) My kid who lives in pajamas actually gets to live in pajamas. I make her shower and change pajamas, but…. details.

2) We sleep as late as we want and nap when we want.

3) The “school day” is less than 2 hours long.

4) Gas prices went way down.

5) I’m still stressed because I have two autistic kids at home I have to keep on task and keep from killing each other, but it’s a different TYPE of stress. No more juggling 83 million appointments a week— all non essential appointments are….. vanished from the calendar. Even my surgery in June will likely be postponed because it’s not an emergency and nobody will be caught up by then.

6) MY HUSBAND IS HOME EVERY NIGHT DOING DAF YOMI BY SPEAKER PHONE! No, I’m not sitting there listening, but just hearing a bit of it in the background as I’m doing other things makes me so happy…. it’s a huge part of his life of which I’ve never been a part.

Having listed all the positives….. um…. let this nightmare be over SOON.  PLEASE?

I Need Another Surgery

This one will be #14 I think (I’m losing count).  This will be very painful, but a short recovery from what I understand.  This one is NOT kidney related.  Even though I’m sort of anonymous here, some of you do know who I am and I’m not sure I want to share surgery details this time– I’ll think about it.  If you know me super well, message me on facebook and I’ll tell you— I just don’t think I should put it out there for the world.  It’s a problem that I tried managing with medication and the medication made the pain  significantly better….. but caused another major problem.  I’ll see the surgeon on March 12th and then I’ll schedule.  Fun times.  During my hospital  VACAY (I get to NAP!  I get a break from chores and working on Wilma’s colon!) I will insist that hubby once again do Wilma’s colon— and once again he will need training because he hasn’t done it since once the last time I had surgery.  Remember when I said we’d only be using a cecostomy for a couple of years?  I lied.  There’s no way we’ll even TRY to wean until halfway through high school at this point according to the specialist.

We ended up doing… NOTHING.  No Kiddush, no party, no invites.  It was the best thing for our son and it was the best thing for our current situation.  Our son didn’t have a massive meltdown upon realizing he was the center of attention and there was a crowd, and none of the riff raff who make it their job to harass my husband knew when and where our son would be called to the Torah and there was no free food for them to come crash our Simcha.  So our Simcha was QUIET.  Just the people who daven at our shul anyway.  Fred was called to the Torah for his Aliyah, the men  sang to him for about 2 minutes, and we moved on with our lives.  I’m incredibly depressed that we couldn’t throw a shindig and yet so incredibly grateful.  I mean the truth is that we could have thrown an invite only party NOT at a shul that wasn’t announced in newsletters just like Wilma’s, but you can see why I was gun shy to do that based on what happened at HER party.  If a double meltdown ran down HER party, kol v’chomer it would most certainly run down HIS.  He certainly didn’t care about a party.

We did GO  to a Bar Mitzvah recently.  The baalas Simcha promised us that a certain person wouldn’t be there.  Not only was he there, he was given an honor.  The baalas Simcha promised us that her son’s classmates wouldn’t be there (they live in the “other neighborhood”).  My husband literally spent Shabbos morning counting bochurim and noticing how many came from the other neighborhood— he got to be called a retard manager, and when he yelled at a few boys for on purpose knocking right into our son, he was yelled at by the certain person mentioned above (who, by the way, finally invited us to leave our city— I was wondering when he’d “kick us out” of here).  Wilma stayed home.  She NEVER goes to shul on Shabbos morning anymore and she NEVER even gets out of her pajamas on Shabbos.  She takes at LEAST two naps each Shabbos.  (we tested her thyroid and vitamin levels—-  I’m guessing it’s just the 8 thousand meds she’s now on).  Fred did come with us.  Hubby went on time, and I took Fred around 9:45— Fred is able to walk quietly into the men’s section, find my husband, and do great during davening.  And then  there was a Kiddush.  Oh how I hate Kiddushim.  Let the record show we tried.  Kiddushim bring out the very worst in people.  So about ten minutes into the Kiddush my son is crying, having a massive nosebleed and yelling curse words in the bathroom.  A Rebbe (who KNOWS Fred has autism) admonished my husband for not disciplining Fred.  If discipline worked with Fred’s cursing or aggression or meltdowns or ANYTHING, don’t you think we would have tried it?  So yeah, we won’t bring Fred back to a Kiddush for a long long time.  None of us ate at the Kiddush or enjoyed it but I think we get brownie points from the Baalei Simcha for being there.

Here’s hoping we don’t get invited to another Bar Mitzvah in our city anytime soon and if we are, we’re smart enough to leave our kid(s) at home and my husband is smart enough to wear blinders and earplugs so he doesn’t have to hear or see anything.  And yes, of course, we had the moving discussion again.  And again.  And again.

SO Inappropriate

Fred tried to lay on top of me lining his crotch up with mine—- AGAIN. Then when we told him he’s not allowed on my bed for two weeks because he is being inappropriate he went into multi bite mode…. AGAIN. So of course then my husband yelled out….. And you want to have a Bar Mitzvah kiddush??  (He yelled at ME—– Fred couldn’t care less whether we celebrate his becoming a Bar Mitzvah).

PS—- one of our community bullies ALWAYS notices EVERY bite mark my husband sports on his arms.  My husband is hesitant to roll his sleeves up at Daf Yomi because the jerk asks with intense snark…. “oh so you got a dog?”.  “DISCIPLINE!  You must POTCH your children!”  Yes, because abusing them will teach them not to abuse us.  Great plan.

 

 

Wilma Isn’t Pregnant

Wilma had a doctor appointment and as a requirement for one of her medications they needed to do a pregnancy test. So my autistic 12 year old was YELLING “I will NOT pee in a cup! I AM NOT PREGNANT!” at the pediatrician’s office. She got permission not to pee in a cup (I played the autism card and the there is just NO WAY card) and she calmed down. But then she wrote all over the butcher paper on the exam table…… “I am not pregnant. I will not pee in a cup. Peeing in a cup is gross.” Life is always interesting with these two.

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The surgeon called yesterday and bumped my stent removal from tomorrow to yesterday! One was way down low so all the pain right there makes sense. Post procedure pain last night but for the first time in 5 weeks I can walk normally…. no stent pain!!  Today I did everything I’ve been WANTING to do….. tidy up, put away laundry, tidy up…..  ok, it wasn’t a fun day but my goodness I feel so much better physically and mentally!

The surgery to insert these puppies was at the end of September.  The surgery to take out the kidney stones and put these puppies back in was at the end of October. This health nightmare is now over.  Ok, aside from a 24 hour urine collection, ultrasound, xray, and follow up with the surgeon all in a month.  🙂

The stones were calcium oxalate so no more spinach or almonds for me.  Gotta be more careful with my diet.

I’m beginning to think that the only thing organized in some (not all!) Orthodox Jewish communities is the bullying, both of children and of adults.

It’s a small group of teens and adults who continue to bully my husband, but boy are they loud. And constant.  And causing us to argue about moving.  ALL.  THE.  TIME.  Our son is supposed to celebrate becoming a Bar Mitzvah in two months.  We’ve done nothing.  We absolutely cannot agree.  Should he be called to the Torah at all?  What will happen?  Should we have a kiddush?  Who might show up?  Sadly, we may just buy him some special treats and congratulate him and let the community simcha part just……  blah.

Tonight, some bochurim called a treif restaurant FROM the synagogue, ordered treif pizza to be sent to our address (lovely, they’ve got our address) and gave the name as “the retard manager who attended Yeshivas I once ate pork”.  (they call my husband retard manager because he used to be a para in a couple of the Jewish schools working one on one with students with special needs.  The organization that hired him and the schools could never agree on what his job actually entailed, and the students looked at him as a babysitter.  The schools didn’t care about the middos of their students, so years later these kids and their younger siblings are still calling my husband these horrible names.)  The Yeshiva—– well, we’re Baalei Teshuvah.  We catch flack for that too.  Apparently Yeshivas I Once Ate Pork is quite popular because I have a lot of BT friends, but I digress.

Where are these boys’ fathers?  Not at mincha or maariv with them supervising them, that’s for damn sure.  Where are the Rabbaim?  Well if the boys are from important families, families of Rabbanim or Rebbeim, or rich families……  my husband is always told to just “be mevater”.

 

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