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

Dayenu

In Judaism we have a special song we sing at Passover time— if God had given us just this it would have been have been enough.  If he had given us this but not that it would have been enough.  Sometimes when I vent I turn it around.

I’m a bit discouraged this week and just need to throw up my hands and say Dayenu.

If I had twins, Dayenu.

If I had special needs twins, Dayenu.

If I had to work because we can’t survive on hubby’s income alone, Dayenu.

If I had to work evenings because daytime is chewed up by paperwork and meetings, Dayenu.

If I had to do laundry, clean, cook, pay bills, Dayenu.

If I had to go to IEP meetings, ETR meetings, FBA meetings, Dayenu.

If I had to balance the schedules of the outreach worker from the autism center, the outreach worker from the behavior center, the outreach worker from the board of developmental disabilities, Dayenu.

If I had to balance the schedules of the neurologists, psychiatrist, behavior therapist, speech therapist, developmental pediatrician, Dayenu.  (we’re not currently doing OT or PT outside of school hours— they’re six years old and don’t get home till after 4:00 for pete’s sake—- there are only four days a week we can cram after school therapies!)

If I applied for SSI and got denied, Dayenu.  If I re-applied with a lawyer and am killing lots of trees in prep for a second denial and subsequent appeal and court date, Dayenu.

If I HATE the behavior center and am required by three different psychiatrists to take my kids there so I fill out an hour’s worth of paperwork for a new developmental pediatrician so that we can quit the behavior center therapist, outreach worker, and psychiatrist and the new developmental ped can handle our med management, Dayenu.

If I had a daughter who poops herself five or six times most days after school on purpose and NEVER uses a toilet at age six, Dayenu.

If said daughter has a GI doc who claims she’s constipated and is giving her miralax and metamucil protocol each day, Dayenu.

If I have to play the medication roulette game between clonidine, tenex, abilify, focalin, vyvanse for two different children with three different psychiatrists and a developmental pediatrician, Dayenu.

If I have to survive double autism meltdowns in public complete with biting, screaming, flopping and refusing to move, stares from strangers, and unsolicited parenting advice, Dayenu.

If I have to have the school district tell me that they don’t need ABA (and insurance won’t pay for it either), Dayenu.

If I have to have the school district tell me that they’re too high functioning to be sent by the district to an autism school and they can handle them at a regular public school, Dayenu.

If I’d rather send them to a Jewish day school but know that I can’t possibly give up the services we’re getting at public school and have to figure out how to get Judaism into them outside of school hours, Dayenu.

If I, in an effort to save money, want to bring a VERY high rent payment down to a reasonable mortgage payment and am thinking about purchasing our first home at age 39, Dayenu.

If to purchase said home, we need down payment assistance and to qualify to receive the downpayment assistance I have to take a course which requires me to cancel the twins’ after school appointments for an entire week and find an after school babysitter, Dayenu.

If I have to prepare for Purim, Dayenu.

If I have to prepare for Passover, Dayenu.

But put all of them together and you have one very tired work at home mommy.

Vent over.

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Comments on: "Dayenu" (7)

  1. I’m dizzy and tired from reading this all… gahhhhhhhh

  2. Oh dear girl, I am so with you. I love your word…Dayenu. I have 7 kiddos-4 have FAS and 2 of those have PDD. They fight like cats and dogs-no-I’ve seen cats and dogs get along-and these kids don’t get along. hitting, high pitched screaming, pinching, ICK! We are on the forever waiting list for services…and are waiting for some behavior doc…I don’t know! We have just moved (dayenu)…sold that house, are renting(dayenu) and are building a house(dayenu). I also started homeschooling two years ago(dayenu)-but really that has been the best thing ever for my kids. I pulled them out of constant IEPs, speech, OT, PT(graduated from this). We now spend our days calmly reading and coloring, I read their history, science, etc while their hands are busy coloring/tinkering. We are slooowly making our way through math and improving in reading…no stress…no deadlines…and only the appointments we absolutely need! School is done by lunch time-if we have appointments I make them for the afternoon. Behaviors have IMPROVED SIGNIFICANTLY! I found an OT that will come to our house and work with the kids here-with what is bothering us-not her agenda… We do speech as part of our school…no IEP needed.

    Being solely responsible for all my kids needs is sometimes overwhelming-but it’s nothing compared to the behaviors we used to have…(my oldest, at the age of 10-was put in a mental institution for a weekend), fits lasting hours, smashing windows, holes in drywall, doors off the hinges-and those are from the other kids-not the oldest…

    This is not the answer for everyone-but it sure had been for me-and our stories sound so familiar I had to share. Let me know if you find some kind of magic bullet for the fighting-gotta go-I think someone just hit my 4yo with a block. It’s sooo hard when there emotional age is sooooo low…sometimes I’m sure my younest(3) has the highest emotional IQ!

    Blessings to you…

    • Ashley, what’s your blog? are we facebook friends? I’d love to get to know you better. I thought homeschooled kids are still on IEPs, no? Homeschooling isn’t an option for me because of money. My husband makes very little money and I need to work. At this point my kids ARE in school a full day and I still don’t have enough time to work enough hours to make enough money. I’m glad your situation has improved so significantly- that’s wonderful!!

      • Hi, you are right-we could still have an iep but working with when the school could schedule therapies interfered with our homeschool day so I stopped that and switched to speech through the hospital.

        I don’t have a blog…some have said I should start one. I don’t think I have time and energy for that! My names is Ashley Enns in ks. Maybe you can find me on Facebook. 🙂 I tried searching for sorted mega blocks on fb and didn’t come up w anything-I don’t have your blog in front of me now to see if I can find your name.

        Thanks! Ashley

    • yeah, you won’t find “sorted megablocks” on facebook. I’m very secretive here on my blog about mine and my kids’ real names. I was curious if we were already friends on facebook– if you’re someone I already know. Since you’re not, I’ll get to know you a bit better through your responses on here before I friend you up on fb. but when I do I’ll tell you it’s “sorted megablocks” so you can put my name with my screen name. 🙂 How did you find my blog (I’m not a well known autism blogger)? and yes of COURSE you should have a blog! You’ve got a story to tell!

      • I found you because a long time ago you asked a question on a sibling rivalry question I just read…I clicked your link to see if you found any answers

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