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

Archive for the ‘COVID 19’ Category

Winter Break Starting Early

Both kids are home till January. After the second incident at Wilma’s school which brought her home mid day Monday, police haven’t finished their investigation so finals are postponed till January. It’s a large public school and copy cat syndrome is real. High schoolers all over the USA are learning that they can post a few words about shooting up the school with a pic of a gun and they can get school shut down for a day or two (or four and a half). Yes, she and her bro are in 9th grade this year. 9th! Today is Wednesday— she was home half a day Monday, then Tuesday, and now Wednesday through Friday and THEN two weeks of winter break. These incidents brought her to TEARS but the school handled her so well. Knowing she has autism and adhd she was escorted out of class for both lockdowns to work one on one with a staff member and not have to just scream and cry in the classroom. She got a phone this summer so she texted me 40+ times during each lockdown (before an early police escorted dismissal) freaking out—- nice that I knew what’s happening from her perspective but ugh.

Fred is home because of covid quarantine— I think (but am not certain) that one of his classroom teachers has covid. So his whole class (all five of them) are doing virtual learning last week and this week up to winter break and THEN two weeks of winter break….. so he’s also home for a month. But he didn’t need to put on a shoe all week since he’s been home, so that’s good….. he got 8 stitches in his foot a week ago tonight. He’s getting his stitches out (hopefully) this Thursday morning.

To clarify for anyone who assumes I’m always complaining…… I do post a LOT on here about hilarious things my kids say and do. I LOVE my kids. I LOVE spending time with them. HOWEVER. They have severe behaviors. Wilma’s is refusal. oppositional defiance disorder as part of her autism and adhd. I ask her to do something and she won’t. I can do plenty of planned ignoring and quietly taking away priveliges until I get the desired behavior but her twin brother CANNOT. DEAL. WITH. HER. BEHAVIORS. His knee jerk behavior when I ask her to come back to the bathroom and wash her hands after using it (for example) is to scream and run after her to bite or punch her. He’s a rule follower (other than screaming, biting, and punching…..) and can’t handle it when the rules aren’t being followed. He ALSO has autism and adhd and his autism comes with a huge side order of aggression. So double meltdowns happen every school break— winter, spring, summer. They need plenty of time AWAY from each other and they get that with the structure of school. Two different schools since preschool. So BREAKS ARE HARD. Plus with his aggression we don’t go to hotels or out of town or on long car trips or visit people or…… etc. Plus because of her physical issues we don’t leave them overnight (I’m the only one allowed to do her nightly medical treatments— she won’t even let hubby go near her). ok, thank you for coming to my TED Talk.

ps sometimes we get a 2-4 day break from being bitten and punched but this week between her two times being sent home early from school incidents and having days off after each incident during police investigations and his getting 8 stitches in his foot and oh I didn’t yet mention a 14 hour power outage which threw her into overdrive throwing him into multibite mode, the behaviors have been on high alert around here. Over break I HOPE things will get better with PLANNED time off from school and stitches coming out and no more power outages (they scare the crap out of Wilma giving her PTSD from our 4 day power outage last year). Of course over break we have 2 psych appts, 2 OOD appts, 2 board of DD appts, one stitches coming out appt, 1 derm appt, and 1 medication shot appt.

Many people planning winter break—- oh, we’ll get together with family, we’ll travel to another state, we’ll go to parties, maybe a concert………. us planning winter break…… only 9 appointments so far……. what else can we do so that she doesn’t yell “I’m bored” over and over which will throw him into multi-bite mode?

It’s Been a While…..

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!

 

Humor Collected During Quarantine

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!

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.

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.

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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