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

Archive for July, 2020

Freaking Homeschooling Some More

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.

Psych Admission?

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.

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