Musings from an Orthodox Jewish mom of twins with Autism Spectrum Disorders, ADHD, and one twin has encopresis, megacolon, and a cecostomy. I'm tired. :)

Archive for July, 2018

Playing Catch Up

Trying to catch up on this here bloggity thang.  Looks like I never updated y’all about the school situation?  Wowza.  Was too busy living it to blog it.

Fred was kicked out of public school.  Suspension after suspension after suspension— multiple emergency IEP meetings where they granted us a 1:1 aide just for 30 days even when I warned them it should be an rBT supervised by a BCBA and it should be the same aide…..  suspension was not a deterrent, his impulse control got weaker and weaker, and his desire to GET to stay home from school got stronger so he would punch teachers on purpose to GET suspended.  “Our policy is” are my least favorite words.  The district now spends thousands to send him to a behavioral school.  I LOVE his new (not so new anymore!) school.  THEY NEVER SUSPEND.  THEY WORK WITH BEHAVIORS.  I’m thrilled.  This school goes through 12th, but they’ll attempt to pull him back into public much sooner.  Momma bear will be ready to fight again for no suspensions for autism related behaviors.  Suspend a kid in a wheelchair for not trying harder to walk, why don’t you?

Wilma is doing great in public school.  So great that we tried to put her in a Jewish school with just a 1:1 aide.  Medicaid would have had to pay for at least 20 hours a week of the ABA aide— they weren’t willing.  Our state’s autism scholarship can’t cover a full time rBT and she can’t handle just ANY aide— she needed a behavioral aide if she was going to be in a school with no trained intervention specialists.  So— she stays in public.  GREAT, but her new middle school will be 1200 kids.  Already had the transition meeting and I’m cautiously optimistic.

Fred is on depakote and straterra currently.  Wilma is on adderral, geodon, all the junk through her C tube, and……..  birth control.  We had to stop the heavy periods.  On depo-provera she gets a normal period every 3 months instead of a heavy one once a month— it’s working fine and now she can wear underwear and pads during her periods and go to school and camp instead of stay home and fill pull ups with bowel movements that go completely whacko during heavy periods.

They’re in camp for six weeks— the ONE daycamp on this side of town that takes their medicaid waiver, works with kids like them, and is right for them.  He was suspended today and I had to have THE TALK with the director.  PLEASE PLEASE don’t get suspended again, kid.



ABA Update

One of Wilma’s therapists is off our case for good and it’s a welcome relief.  Already have someone else in place a week later.

If you want to work with kids with autism and you’re asked to give 2 weeks notice of an occasional absence, and your job with us is 4 hours a week, you can’t be absent at least once every other week and give less than a week’s notice about two week absences over and over AND complain to your family about our family. (HIPPA anyone?) Don’t screw with my kid’s’ mental health.

Wilma’s other therapist is growing on us and Freds’s therapist is really quite good. Their supervisor is EXCELLENT—- so I think with this change we’re in a good place.

Hilarious Snippets

Me: “you just showered so what am I smelling? Must just be puberty.” Wilma: “ooh…. great name for a cologne.”




#YouMightBeAnAutismParentIf your 11 year old wanders up to you to inform you of today’s letter of the day.




Wilma: “mom, where do babies come from?” Me: ” mommies’ bodies” Wilma: “no I mean….” Me: “gulp”……

Wilma: “Like…. can you order one on amazon?”

Yes dear, and with prime you get free shipping……




In a fit of rage, Wilma tore apart one of her shoes. So my husband said “well I guess you won’t be wearing those anymore”.

Wilma in her nice calm perky manner replied: “well I can still wear ONE of them, just not the other one”.




It’s that time of the evening when there just might be a naked 11 year old loudly singing “Guantanamera”in the bathtub. That’s after he complains that we don’t have enough whiskey to get us through the evening. My life truly is a sitcom.




I was explaining to my husband (in front of Wilma– my mistake) that I’m buying Fred a new toy because I broke his old one and that it’s 20 bucks or so. So Wilma says “if you’re buying Fred something worth 20 bucks why can’t you get ME one of those mini backpacks from Justice I’ve been wanting?” I said…. “I’m not buying him something— I’m replacing something I broke- it was my fault. Have I broken anything of yours?” Oh this kid. She said……

“yes– my heart!”




CP got in trouble for screaming and crying over a mathematical argument at therapeutic horseback riding. (how many inches are in 15.3 hands– horse measurement stuff).  #YouMightBeAnAutismParentIf




Dinnertime at our household…..

Wilma:  Fred is using his chair as a musical instrument!

My husband: So what? You use his butt as a musical instrument!



Summer. Autism Doesn’t Take a Break

There are far too many families dealing with similar crapola….. 9:30 pm, both kids are sleeping, and I’m cooking Shabbos because I’m out all day tomorrow. (I wrote this Thursday night).  All of a sudden I hear a sweet “can I come downstairs and tell you something very quickly?” I say sure, but then please go back to sleep. She tells me she has a loose tooth and she wants me to look in her mouth— I had no idea she’d start screaming her head off. She’s terrified it’s an adult tooth. I have no idea whether it’s a kid tooth or adult tooth— I can BARELY get in there— I got a half second peek before she started screaming her head off, waking her brother and then I was treated to another lovely double meltdown right as I’m supposed to be making Shabbos and my husband is out at daf. yay. Full physical prompting up the stairs with a kid who weighs 110 pounds isn’t fun. Guaranteed that when my husband is in charge of getting them on the camp van tomorrow she’ll scream at him that she’s not going to camp and she demands an emergency dentist appointment. If she’ll calmly simply let me LOOK…… but nothing ever happens calmly around here. Autism, thanks for striking again– hadn’t seen ya in a couple of hours.

And…. Well we made it almost to week 4 without getting suspended from camp. Fred will be home with us Monday without his sister. Not. A. Deterrent.


Wilma: “can I call the police department and let them know that fireworks can’t go off tonight because I have daycamp in the morning and I need to sleep?” Me: “put on your fan and let’s hope for the best.”

Every year I say that noise free fireworks need to become a thing. Autism, PTSD, veterans, pets….. there are a lot of reasons not to have big loud bangs after bedtime, yo.

And…. Why is the guy who gets ticked off at my husband that he doesn’t bring our son to synagogue in the evenings (after he likes to be asleep) the same guy who’d be royally pissed off at our son’s behavior if he did?

One Of These Things Is Not Like The Other….

Friday’s amazon order: popcorn and glycerin. Today’s amazon order: guinea pig hay and deodorant. Reminds me of the place we saw in California: Car insurance and Chinese food. How many interesting things can you put together….. that don’t go together.

Whoopie Cushion At Shul

In the realm of “This kind of stuff happens to my husband so here I come to complain about it” — one of the teen boys who makes it his full time job to harass my husband put a whoopie cushion on his chair at shul this Shabbos.  Hubby threw it away.  We’re waiting for the phone call that he did the wrong thing and made a sweet innocent young man unhappy.

Oh well.  Today my husband wore an untucked blue shirt while talking to a black man and the brother of the big Rabbi in the community who makes it HIS full time job to harass my husband drove by.  We didn’t get THAT call yet either.  In the past he HAS gotten a “talking to” about wearing colors *gasp*, being untucked *double gasp*… and….. talking to a black person?????  Don’t you KNOW that if you’re frum you’re supposed to be a bigot?  Come on now…..  *sigh*

It’s the weekend.  The phone will ring tomorrow.

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