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

More Covid Hilarity

Covid itself isn’t funny, but the parodies and memes most certainly are.  Here are some more just to temper the complete and utter exhaustion that is the last few months.

 

 

 

 

 

 

 

 

still more to come!

 

The past six months have been so awful.  One thing keeping me going is the humor.  So many songs, memes, parodies, and general hilarity.  Here are some examples.

 

 

 

 

 

 

 

 

More to Come!

Wilma will start the school year remotely— her district bowed to parent pressure tonight. She and her brother have been home all day every day since early March and her being in school at least two days a week was like a light at the end of an insane tunnel.  Still no idea what Fred’s school will do.
 
Her being home for school is just long naps, refusal to work, and complaints.  Her being home in the summer is just long naps, refusal to do activities I suggest, and complaints.  Any time I ignore her and try to get on a phone or computer to get something done other than give her attention, she’s got an arsenal of jokes to tell or totally insane stories.  And she’s by FAR the easier twin now.

What Is Worse

Let’s play what is worse…. (or most emotionally exhausting)

  1.  Parenting two children on the spectrum
  2. Being told that autism is a mere myth and that symptomatic behaviors are the result of incompetent parenting
  3. Hearing the theory that they are too smart to have autism
  4. Being told that we should not talk about the issue and just suffer silently.

Today we had issues with #1 and #4.  #1 was ANOTHER horrific meltdown from good old Fred.

Hubby was approached at Walmart today by an important member of our Orthodox community (important in our community means rich or a Rabbi or a head of school…..  someone whose name is synonymous with the community— side note— hubby has now decided we will move to a community where no names are revered more than others.  Anyone know a Jewish community with no adored rich or important people?  mm hmm)—–  she said she’s been meaning to talk to him about something…….  she said we need to stop being public about our childrens’ autism and stop seeking support.  We need to be quiet about it (suffer silently) because it’s a blemish on our community.

I feel really terrible that our current crisis (yes, one twin is most definitely in crisis now—  many of my autism related facebook posts in past years were positive/ funny/ informative) makes her feel a bit uncomfortable.  See the tiny violin I’m playing?  Nope, can’t lean it against my body— I have a bruise there— yeah another one there—- hmmm that finger is permanently injured so I can’t hold the bow right— eh, screw the violin.  Yet again hubby is yelling at me about moving.

By the way, while we’re keeping Fred home and away from synagogue for months on end, some of the men are complaining that he’s a Bar Mitzvah and they never see him in  shul.  So some people think we shouldn’t seek support when we have issues and some think we should ignore the issues and just act like nothing is wrong (same guys would complain when  the guys are comparing bite marks during a mega meltdown).  Again, hubby is talking about not only moving, but moving away from the Jewish community completely.   Hashem— if you want us to remain Orthodox Jews, give us a sign– please.

To those parents who have been there and done that—–  how did you know it was time for a psych admission? What do they do that’s helpful? serious question. We’ve never admitted Fred (yet) — we’ve gotten beaten, kicked, punched, bitten—- but USUALLY (pre corona) on 4 strong medications he’s done in 10-15 minutes. Now with no structure he’s up to 45 minutes to an hour of hell making his sister cry, us cry, my husband scream at me to call the police, me trying to calm my husband down—- but I just don’t know how the hell a psych admission would help him or would it be more of the same— well let’s try this med, let’s try that med……. do these places actually ever take a kid OFF all meds and start fresh based on data they take? HOW does a psych admission work? One of us would have to stay with him and one of us would have to stay with his sister— for a week? Two weeks? How do parents WORK while this is going on?  We’ve been  living off savings this summer but hubby goes back to work soon.

I was getting dressed after my shower tonight and I made the mistake of looking at myself in the mirror— you know in the movies where you see domestic violence victims seeing their bruises in the mirror?  Yeah.

Agression Regression

yet again we JUST BARELY escaped the hospital and the police because of Fred.  By sheer LUCK the neighbors didn’t call the police and by sheer response blocking experience we didn’t land in the hospital but we have some shiny new bruises. Hubby has a loose tooth and will call the dentist in the morning.  No  dental insurance — if it’s going to be a crown it will be about $1000 we don’t have, right?  In addition—-  Fred bit my husband’s arm down to the bone—- an arm/hand surgeon  said there isn’t nerve damage but there might be bone damage.  There were many hours that he had no feeling in his hand but feeling is coming back now so I’m optimistic there.

It was only an hour but it was a VERY LONG HOUR when before covid craziness the worst of the worst was down to maybe 20 minutes two times a week– now it’s EVERY day for at least 20 minutes but tonight an hour. I’m dripping in sweat. Some of my friends in an autism moms facebook group go through this for MORE than an hour— every day—- I just….. ugh…….. Wilma who ALSO has autism was crying her eyes out saying how unfair it is and how she wants to run away.

Fred is now on  Depakote, straterra, tenex and Lexapro.  (ALMOST as many meds as Wilma!) He was at his best at the beginning of the abilify and Risperdal days (before he was on the largest dosages for his weight and they each stopped working).  So— back  on the meddy go round we go.  I guess we’re going back on one of those.  This psych just loves our family.

At last count, the four of us are on  Fred (4), Wilma (5), me (4), hubby (6) prescriptions every day—- and some randomly like all my post surgery meds for the 3 surgeries I had in the past 6 months.  I should really open a pharmacy.

Autism is kicking my ass lately.

Summer Update

Yeah, my autistic twins (13) have been home since March. One is high functioning enough that things aren’t in total crisis when she’s around but the other one has had MAJOR MAJOR aggression regression and I’m covered with bite marks and bruises from punches and kicks.

Her school will go back 2 days a week (3 days at home— argh) and his school? I don’t yet know— they haven’t yet told us! We’re in Ohio- Cleveland. The one special ed camp on our side of town that can meet our needs and be affordable cancelled for this summer. A regular camp isn’t an option.

We broke up with our ABA agency in November 2019 and took a break from all ABA. Until March things were going well. November to March was really nice. And then they were home— all day every day— together. SO I applied with insurance to a different ABA company and we got denied since both twins had years of ABA previously and it’s more than what is typically seen—- our insurance for the twins has decided they’re done paying for ABA.

So we’re working closely with the board of DD doing zoom meetings with the twin in crisis, doing zoom psych appts, updating our address flag with the police explaining what could/would happen and what to do when they’re called…… we’re also looking into the board of dd paying for soundproofing our home so the neighbors can get off our backs a bit.

The kids are SICK of reading time, science experiments, art projects, family walks, and whatever else I try to throw their way. I make plans, they yell at me about said plans, he gets aggressive, and around and around we go. Meanwhile I USED to make an income— hubby doesn’t work during the summer so we’ve simply lived off savings and the stimulus all summer.

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.

Tag Cloud