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

For Orthodox Jews, it’s now “Chol HaMoed”, the time between the beginning days of Sukkos and the days of Shimini Atzeres and Simchas Torah.  There’s another Chol HaMoed between the beginning and ending days of Pesach (Passover).  Chol HaMoed is a holiday in that you’re supposed to dress up, enjoy time with family, and take off work.  It’s not the holiday (Chag) days where you’re not using the computer or car or phone, etc, but it’s not “regular” days either.  All Orthodox Jewish schools (where 95% of the kids in our community go) are closed.  So most of my friends are going with their kids to bouncy house places, big Sukkah parties, Chuck-E-Cheese (no it’s not kosher, they just go for the games, not the food), bowling, and mini golf type places.  The question in our community is not IF you’re doing something fun this week, it’s WHAT are you doing on Sunday?  On Monday?  On Tuesday?

Us?  Nothing.  I literally can’t take my kids ANYWHERE by myself anymore except places with a cart.  (Target, Walmart, the grocery store).  Even in those places, I’m 50% assured of a meltdown, a biting incident, or some screaming.  YES, I can take my kids to the zoo or the playground or a little kid park IF AND ONLY IF I have my husband or hired help with me.  AND a double stroller (which truly doesn’t fit the kids anymore).  AND a lot of prayers and perfect weather (I can’t name a lot of indoor places we can go, because of crowds…)

My friends with six kids can handle Chuck E Cheese by themselves even if their husband isn’t coming along.  Me?  Even WITH my husband super glued to one of the twins, I’m 100% sure there will be an incident (it’s crowded, and it’s indoors— double whammy).  So even WITH him, we limit our outings greatly.  And why should I hire paid help if we’re bound to leave an event early anyway?    We’re good with walks around the neighborhood (but only with my husband’s help), and occasional trips to the playground (ditto).  The weather this week is really iffy— I think we’re just staying home tomorrow.

I sort of feel like it’s become my job in our local Jewish community to explain why a family affected by autism can’t just get in the car one morning with the kids and say “hey, what should we do today??”.   Most of my friends don’t even get it.  When they see my kids they’re on their best behavior.  (because they see us when we’re taking a walk around the neighborhood which is 99% successful with my husband’s help— the Rosh HaShanah incident excluded).  I KNOW there will be a problem if we take them someplace crowded, someplace with music or lights, someplace with people, someplace indoors……  so I waver between “why bother” and “alright my kids need to have these experiences even if they SUCK— let’s just try”.

Six months ago, my kids weren’t even wonderful with walks around the neighborhood.  If I stopped to adjust my shoe, the screaming would ensue.  So the community gets to see my kids on their best behavior BECAUSE of all the occupational therapy they’ve done this year.

When there IS an incident in the community (my Rosh HaShanah walk, or just yesterday at a friends’ house for Shabbos lunch), people are super surprised at how quickly and intensely my kids change from Dr Jekyl to Mr Hyde— one sets off the other and it’s a horrific chain reaction.  MOSTLY people are extremely understanding and tell me I shouldn’t have to hide my kids or keep them home— I shouldn’t be embarrassed.  But there are the few who whisper right in front of me or behind my back……..”why would she take him to a Kiddush if she KNOWS he can’t handle it?”  or “what’s WRONG with those twins— they LOOK normal— it MUST be their parenting skills”… or “why does she let him bite her?”.   My personal favorite is those people who “care” who call during the week to tell us about an institution they heard about for kids with autism.  Great— you want me to send one or both of my kids to an institution?  First of all, just spend twenty four hours with them to see what life with them is truly like and see how hard we ARE trying.  THEN come up with the money.

At any rate, the kids do have school on Tuesday and Wednesday, since public school is their only option.  Public school doesn’t know from Chol HaMoed.  And that’s just fine because my twins are most successful when they’re separated.  He goes to school in the morning on tues and wed, and she goes in the afternoon.  As for me and when I get anything done, who cares.

At least I don’t have older, neurotypical children who are begging for the fun outings they know they’re missing, right?

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