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

Archive for the ‘Pesach’ Category

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.

Advertisements

Mah Nishtanah- 4 questions by the Aspie Son

LOVE THIS!

Hattip:  http://ponderingprose.wordpress.com/2011/04/04/mah-nishtanah/

 

Mah Nishtanah – Four Questions by the Aspie Son
Written from the perspective of a boy with Asperger’s Syndrome

Published in: Spirit Magazine, and Inyan – Hamodia’s Weekly Magazine – Passover Edition, Spring 2011

“Mommy, everybody is looking. I don’t want to say this out loud, can I go in the kitchen?”

“Tatte Layben, I… Ma! If Zeidy is here by the seder, then I think I should say Zeide Layben”.

“Zeide Layben… Ma! Zeidy is alive, and everybody can see that. Why do I have to announce it?”

“Zeide, ich vil bei dir fregen di fir kashes…

Mah Nishatana Halayla Hazeh… Why is this night different from all other nights? On all the other nights I can eat my rice cake that I eat every night, this time. But tonight, and on this night only… (Ma! We eat matzah the entire Pesach, why do I have to say on this night only?!)…more than any other night, why do we have to eat potato? You know it’s soft and mushy and I hate the way it feels in my mouth? And then when I do swallow it, I can’t drink again until after the next Kos, after saying mah nishtanah?

Why is this night different from all other nights? On all the other nights I can sit with my comfortable shabbos shirt, the one that is made to look like a shirt but is really a t-shirt, the one that has no seams or labels? Why on this night do I have to wear this itchy glittery shirt that I made with the O.T. by therapy? My fingers got all sticky from the glue and I had glitter on my eyelids for three days and three nights. And also, I think there are some rabbonim who hold that glue is chometz! And people might not know that glitter is made of very small, 1 mm pieces of paper, glass or plastic painted in metallic, neon and iridescent colors to reflect light in a sparkling spectrum. Glitter was invented by Henry Ruschmann. This is really very interesting! Which reminds me of the next question…

Why is this night different from all other nights? On all the other nights I keep my salad dry without dressing because I hate dressing and nobody forces me anymore. But tonight, and on this night only, and also tomorrow night at the second seder because we are in galus and in chutz l’aretz, not like the people who in Eretz Yisroel have only one seder each year. In America, we have two, and also if an American goes to Israel for Yom Tov, they must have two sedarim. That’s why I don’t want to go to Israel on Yom Tov because it would make me feel all mixed up inside and my brain would feel all funny and I would see everything in jumping zig-zags and I would get very upset and I would have to make that noise with my mouth because it feels better afterwards. I would much rather have two seders over here, as long as I can stay in the kitchen. And, also, if I can have my romaine lettuce dry, without being forced to dip it in the charoses, which is very old apples and are already brown, and brown is my worst color.

Why is this night different from all other nights? On all the other nights I can sit on my special chair by the wall in the kitchen, where nobody can touch me or breathe near my plate, but tonight, and also tomorrow night, we have to eat reclined, and that means I would be touching Ari’s chair. If I touch Ari’s chair, I will touch Ari’s right leg and I know he will kick me. Last year in Bubby’s house he kicked me after the third kos, and when I was third grade, I was leaning on cousin Chaim from Lakewood who was 14 then, and he almost kicked me but I hated touching him because I was worried that I would get too close to his beard. His beard looked like it would be prickly and it would make me feel like I need to run to my room and bang my head for a long long long time. And then my therapist will get upset that I didn’t do the brushing exercise.

Ma! When is this over? Can I stop saying Mah Nishtana and drink some grape juice now?”

Tag Cloud