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

Stay Away From Us!

Haven’t had an evening this terrible in a whole week. I am physically and emotionally SPENT. Wilma’s therapist had to tell me to “breathe, just breathe, just focus on breathing” for a good 20 minutes while I hyperventilated. Anyone know how to cry but control the over the top hyperventilating? I’d like to have a cry when I need to (my shoulder got injured in the chaos and it hurts, but not enough for the ER) but not have it affect my blood pressure and physical being for hours afterwards.

Anyhoo…..hubby went for a walk to get away from it all and ran into someone who doesn’t know our situation all that well and didn’t know that we haven’t taken a vacation since 2006 and certainly doesn’t know that hubby had just been punched and bitten. She said “you look a little stressed…. perhaps you need a vacation”. WRONG THING TO SAY TO ONE OF US unless you’re handing us a qualified babysitter who could handle a potential dangerous situation….. who Wilma would allow to do her medical treatments (she won’t even let hubby do it— I’m the freaking only one allowed near her). Go ahead, y’all. FIND the perfect babysitter for an autistic 14 year old who is likely to beat you up and harm you physically……. who can also do medical treatments on a 14 year old who WILL. NOT. ALLOW. YOU. TO. DO. SO. Soooooo we don’t vacation. Ever.

She should have STAYED AWAY FROM HUBBY.

A certain head of an Orthodox Jewish day school saw my husband at shul with his sleeve rolled up (the men roll up sleeves to put on their tefillin) and told him he shouldn’t roll up his sleeve in shul because he’s scaring the boys from his school at davening with his bruised up arms. Gee, sorry our getting chomped by our aggressive kiddo is terrorizing the same twerps who run around calling my husband the “retard manager”. (I’ve probably mentioned it before— a large group of boys from that school call my husband horrific names because he used to work there as a 1:1 para (with a “retard” (note the quotes– I hate that word— but those boys love it and are never called out on it) and he himself has kids with disabilities, who, according to this stellar group of young men, are “retards” as well.

He should have STAYED AWAY FROM HUBBY.

In short….. if you’re approaching us to tell us to take a vacation, tell us God doesn’t give us what we can’t handle, tell us that God gives special kids to special parents, or to tell us that we’re scaring children with the bruises we incur by being punched and bitten……. just STAY AWAY FROM US.

It’s been a while!

Most of you know we’ve got 14 year old twins with autism. Fred is extremely aggressive – we get attacked all the time. Wilma is doing BETTER over the past number of years but certain things with her are a major issue and she instigates everything with her brother. Both kids are verbal but two of the toughest, behaviorally, in the county, according to our board of dd. My kids have been to WAY more doctor and therapy appointments than playdates or road trips/ vacations. That’s just the way it needs to be. We took a break from therapy from the tail end of 2019 until the middle of 2020— things were going ok with no therapy at all through winter of 2019 into 2020. By the end of our journey with the previous therapy company, NO therapy was a definite improvement. Then Corona hit and from March through August my kids had no structure whatsoever and Fred was back to biting, hitting, and kicking us and having massive scream fests. Anytime I tried to suggest a family walk or a science experiment or art project or ANYTHING…… Wilma thumbed her nose up at the suggestion and refused. She RARELY got out of pajamas from March through August 2020. Because we had broken up with the other company for various reasons (that will be a whole other blog post someday!) we attempted to get therapy via a different company. Insurance would no longer pay for that type of therapy for the twins because we had already had so much of it. (Plus they turned 13 in January 2020 and it’s much harder to get teens this type of therapy than it is to get it for younger kids). We went back to the board of DD to work with their free program for kids who need a lot of help who aren’t currently working with a therapy agency– specifically for the highly aggressive kiddo. We got lots of zoom appointments and it all boiled down to us needing to get the other kid into more structured therapy again because she’s poking the bear. If he were an only child, we’d have a fairly decent handle on his aggression at this point, and on his behaviors in general. But whatever the board of dd tells US to do…… the other twin won’t do. She won’t ignore, she’ll start yelling instructions, she’ll offer to restrain her full sized (he gained 100 pounds in the past year!) twin brother, etc etc. We’re literally ten seconds away from the county insisting on placing him to keep the other three of us safe. He knows that, she knows that, everyone who has seen my husband’s body lately knows it. (he scars easily). Sooooo, the board of dd got us on a waiting list for therapy that’s supposed to be the creme of the crop. For HER. Great, we’ll give it a try. In the first 2 months of therapy with the new company, the therapist missed three sessions due to a death in the family— company gave us no sub. Then she’s back and we’re finally STARTING to make progress with some of the programs she’s putting in place—- whammo, she’s moving to San Francisco next week. We’re at the point where we’re afraid to have no therapy for these kids and we’re afraid to keep going with therapy because there’s never a guarantee of COMMITTMENT, of continuity, or of the same gosh darn person being in our house for more than a month or two. Wilma burned through 13 therapists with the previous company in just a few years. To add to the rotating dance of therapists in and out of our lives, it’s hard to keep the kids on the same medication regiment for more than a few months…. every psychiatrist in the city has the same ideas— let’s try this— hmm, ok, we’ll increase that med….. take her off that med….. put him on this med……. I’m getting TIRED. No advice necessary, it’s just time to VENT. I’ve been quiet lately around here. Thanks for listening! I’ll try to post more often…..

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?

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