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

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…..

Comments on: "It’s Been a While….." (4)

  1. Yocheved A said:

    How do you feel about Fred eventually ending up in a facility? Do you think it might be the best thing for everyone?

    I am consistently amazed at how horrible the people in your shul are. They are going to have a LOT to answer for in The World to Come.

  2. Sorted Megablocks said:

    it’s not our shul so much… our shul is a Shabbos only shul. It’s weekday minyanim, daf yomi, the grocery store…. just….. all over. Our shul itself gets a lunatic once in a while but for the most part it’s THE shul locally that we love. As for Fred…… No, it would be the WORST thing. I want the behaviors to change so he can continue to live with us. I do not want him forced out.

    • Yocheved A said:

      I’m very sorry if you thought I meant that you should just “get rid of him”. I really hope you weren’t offended. I didn’t mean that at all. I know you’re doing everything you can, and then some.

      • Sorted Megablocks said:

        no apology necessary, I understand! I don’t get offended easily. 🙂

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