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

That Darn Colon

I had a GI appt for Wilma on Friday. The current update is….. no testing or procedures for the next year. Cecostomy use once a day on weekdays and TWICE a day on weekends. Yay, another reason for her to trigger her brother every weekend with her obstinate behaviors and fight with me about something. A year from now we start discussing resectioning and in order to think about that we have to do a colonoscopy. The fun of doing that (and colonic manometry to add to the fun fest) on an autistic 16 year old…… oh that will be a joy. As for her spring break this year, her friends went to CA and FL…. .she went to the dermatologist (kicking acne’s butt) and the GI doctor…….

A couple years ago I bought a car (Toyota Sienna) from a friend. Nope, she gave it to me. When we transferred the title we claimed I paid 50 bucks but no, she gave it to me. I paid for title transfer, insurance, and all the financial waiver fun of passing echeck. Part of the fun of owning a 22 year old car that still runs well here in Ohio is doing repair cap waivers every couple of years— going into a repair shop and saying…. “I need you to TRY to fix all my emissions related trouble for right around $300”. That $300 gets you the right to keep failing echeck until the car is 25 years old— then you can waiver OUT of echeck. Only two more repair cap waivers at $300 each and I’ll be there. Now and 2024. If I’m still driving this car at 25 years old.

Other than $300 every time I need to “pass” echeck, I also put $1500 into the brakes and $600 into the power steering. Now is just not the time to trade this in for another used car. Our other car (Nissan Sentra) is a lease. With me not having the time to work a traditional job between all the board of dd appointments, IEP meetings, psych appts, medicaid waiver paperwork, all of my health appointments, all of the kids’ behaviors, etc etc, I just don’t feel comfortable with two car payments at this time. Hubby drives the Nissan to work every day and I drive the Toyota to all of the appointments.

Wilma talks about someday taking driving lessons. It might happen. It won’t happen on time, for certain, but it might happen…. someday. She’s not yet ready. Fred is for DARN sure not ready. Anyway, she has stated that she will NOT learn to drive in this car. It’s so embarrassing to her. Another fun reason to keep it going for another year or two. Nobody can get out of the driver’s door— to get out, I climb out the passenger side. 🙂

A teenage boy, whose father harasses my husband constantly, came up to my husband today and apropos to nothing, said the following:

“My Rebbe said that if you have retarded children, it’s because of aveiros you did in your past.”

His father was right there— smiling. His father even said “hey, he listens to his Rebbe!”

We have such wonderful people in our community, but the handful of total assholes spouting their anti-Torah mindset— calling our children retards, telling us about our past aveiros….. they are who are forcing my husband to demand we move. Keeping us living here is becoming a JOB.

Just an article I found interesting and wanted to save on my blog to read again.

https://www.theatlantic.com/health/archive/2019/06/women-autoimmune-diseases-pregnancy/591901/?fbclid=IwAR35zZU8B5Y2GdPhme0kdT-QGCsY7T6cTAQcli02KruUwZR8NLthNrgywg8

My Health Sucks

I got a couple of new diagnoses this week and now I’m on a total of EIGHT. EIGHT. DAILY. MEDICATIONS. PLUS supplements. I don’t get the flu, I haven’t gotten covid, it’s been YEARS since I’ve had a fever. But I have all this chronic JUNK that affects me…. and I’ve had fourteen surgeries in my lifetime too. Taking care of my health is becoming a JOB. Just what I need— another UNPAID occupation, along with being a full time advocate with doctors, therapists, and schools to two complicated teens! I’m only 47, and only 50 pounds overweight really— which is obese, but it’s not like I’m even close to 200 pounds, let alone 300 or 400. I have more diagnoses than close friends at this point. At my doctor’s appointment on Friday I reminded my doctor why I’m there and what the recent bloodwork showed and he CONGRATULATED me on my new diagnosis. Hardy har har. Two of my medications are exactly the same as two of my husband’s. Getting older is…. interesting.

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?

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!

Tag Cloud