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Meltdown Guaranteed

Thursday, 21 April 2011

Image courtesy of Wikimedia Commons

Day number two of the Omer. Not feeling any closer to that Mountain. Just really relieved that the sederim are behind us…

I never used to feel this way. Though I have spoken freely about my own difficulty with this particular festival, I have always loved the ritual aspects of Passover. From Shabbat HaGadol through Shivi’i Shel Pesach, the structure of the seder, the special reading from Song of Songs, Yizkor — my life is enriched by the carefully selected observances. Like so many Jews, some of my most-cherished childhood memories are of seders from years past. With beloved relatives and friends, now gone, still youthful and full of zest.

No longer. As the mother of a child on the spectrum, this holiday is a nightmare. From start to finish.

Some time ago, PC and I took a class meant to help us better understand Beernut’s behaviours. One of the most lasting take-aways has been the ABCs. Not those ABCs. The ABCs of Behaviour Modification.

  • Antecedent
  • Behaviour
  • Consequence

In other words, as Beernut-specialists, PC and I ought to be able to help Beernut avoid meltdowns by knowing which antededents will set him off. We took this class before Beernut had a diagnosis that placed him on the spectrum. While some of the methods crossover, the ABC approach presents the following problem: Beernut’s antecedents are inconsistent. A hallmark of Asperger’s, as it turns out. What we have learned is that there are some constants as far as Beernut is concerned. While we are not able to accurately predict all the possible antecedents that will cause a meltdown, we know that the following situations are a sure-thing:

  • any change in schedule
  • late nights (in Beernut’s case, after 7:30pm)
  • clothing (he has sensory integration issues)
  • doing anything that will draw attention to himself (which seems incongruous for a kid who has major meltdowns in public)
  • food

I feel as though we have set Beernut up for failure by placing so many stumbling blocks before him.

If Beernut had to stay up late for just one seder and not three, dayeinu.
If Beernut had to wear a button-down shirt and not also wear nice pants, dayeinu.
If Beernut had to listen to the seder and not read the Four Questions, dayeinu.
If Beernut had to refrain from bread and not refrain from all leavened products, dayeinu.

See what I mean?

Dear God,
As we have removed the chamtez from the crevices, I pray that You help me remove the resentment that sometimes rises within the recesses of my heart.

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23 Comments leave one →
  1. Thursday, 21 April 2011 12:33 pm

    This sounds like a difficult time for you and Beernut. Thinking of you.

    • Frume Sarah permalink*
      Sunday, 24 April 2011 9:44 am

      Merci beaucoup!! And Chag Samaych.

  2. Shellie Halprin permalink
    Thursday, 21 April 2011 2:04 pm

    I really get that you and PC are being challenged in every way possible. Every time you think you understand and know what to do, things change and you have to start over. And you have two other children that also require your time and attention. It cannot be easy. And as hard as it is for the two of you, I can only imagine how hard it is for Beernut, to be him, to live in a world that drives him crazy, to feel like no one fully understands him. Will he ever really know the feeling of freedom that we celebrate at the seder, or will he always feel a bit the prisoner, not fully in control of himself or his surroundings? The former is my wish for him, and also for you.

    • Frume Sarah permalink*
      Sunday, 24 April 2011 9:47 am

      Will he ever really know the feeling of freedom that we celebrate at the seder, or will he always feel a bit the prisoner, not fully in control of himself or his surroundings?

      I suspect the latter, sadly. You are so right when you say that Beernut is constantly living in a world that is challenging to him.

      And it is my job to help him navigate it.

  3. Thursday, 21 April 2011 3:57 pm

    Dear Frume Sarah,

    I’m sorry that you and your family are in a narrow place right now. I know it can’t be too narrow, though, because there are so many of us who are squished in right there with you. Even if we can’t know exactly what you’re dealing with, we appreciate, admire and respect you for your ceaseless and extraordinary efforts to envision Sinai and to get yourselves there — no matter what it takes!

    Thinking of you,
    JanetheWriter

    • Frume Sarah permalink*
      Sunday, 24 April 2011 9:49 am

      Dear JanetheWriter,
      This means more than I can say.

      With thanks,
      FS

  4. Thursday, 21 April 2011 5:10 pm

    I know you are a rabbi so I ask this with no disrespect, but why would a God of love allow a child to suffer and feel overwhelming displacement due to such a wonderful holiday? We learned over the years to temper everything we did for the boys including and especially Passover. No my house is not kosher for Passover, there is chametz and matzah and our seders are still very short. (We wear sweatpants to Seder too) But the boys know who they are and where they come from. There is great love in this house for the People of Israel, Eretz Israel and well for some of Tanach Israel. Sometimes I think we can ask just so much of our children and from ourselves too.

    • Frume Sarah permalink*
      Sunday, 24 April 2011 9:55 am

      No disrespect taken!

      We are definitely still working through this. Last year, after much deliberation, we let go of the kitniyot restrictions. I could hear my Galictzianer and Litvak relatives spinning (in opposite directions, naturally!) in their graves. This year, to be quite frank, Beernut has observed virtually none of the restrictions. Which saddens me.

      And the fact that it saddens me, saddens me even more. I am still learning how to let go of my visions of a perfect home and to place realistic expectations on me and our family.

  5. Thursday, 21 April 2011 6:31 pm

    So sorry it’s difficult. I can’t imagine your struggle. But you and PC appear to be handling it with grace. Beernut is a lucky boy to have you as parents; not every parent would be as understanding or compassionate – or honest!

    • Frume Sarah permalink*
      Sunday, 24 April 2011 9:56 am

      Not so certain we are so graceful about it, Rebb. But maybe we are good at faking it.

  6. Thursday, 21 April 2011 8:05 pm

    Oh yes, Pesach with all its rules. That would be a tough one and it’s actually tough for all of us so I can only imagine. I hosted this year for 18. I’m still pooped and it’s almost Friday. Now have to gear up for Shabbat. Too much work this time of year!

    • Frume Sarah permalink*
      Sunday, 24 April 2011 9:57 am

      Fortunately I was not responsible for hosting. Though we are beginning to wonder if that would actually make it easier for Beernut to have the seder in his own space.

      And yes, it is a lot of work. I feel as though I’ve been in the kitchen non-stop.

  7. Friday, 22 April 2011 4:52 pm

    Okay, I hear you. I’d like to say I get it, but it sounds like more than I can ever imagine (even with a younger bro on the spectrum). This and moving and leaving career and, and, and…

    A prayer for you: http://tobendlight.com/2011/04/17/carry-me/

    • Frume Sarah permalink*
      Sunday, 24 April 2011 10:02 am

      Thank you for this… It helped the transition into Shabbos for me.

  8. Former Reform Jew permalink
    Sunday, 24 April 2011 2:47 am

    I agree with aspergers2mom.

    It might be better for Beernut to keep to his schedule – even if means missing the seder altogether. His condition puts him in the category of onus, and he is therefore exempt from any positive mitzvah that would aggravate him.

    So he doesn’t have to get dressed up, or stay up late, or eat matzah. I don’t see any way to permit eating chametz, but anything short of actual chametz (certainly kitnyiot products) would be permissible for him if they help to minimize his aggravation over the holiday.

    I would also like to answer aspergers2mom’s opening question: Why would a G-d of love allow ____ (fill in anything and everything that we don’t like and/or understand in life)?

    I remember when my two year old son found a paperclip on the floor. He was fascinated with it. About ten seconds later, he noticed an opening in the wall for the first time in his young life – a power socket.

    I watched as his tiny brain connected the dots, and he excitedly ran over to the power socket. After all, he had just discovered a new shiny object and a new place to insert it. What fun!

    Of course, I immediately grabbed his hand, took away the paperclip, and exhorted him (in a loud tone) not to touch the power socket.

    He cried. Worse, he looked at me with such a look of bewilderment and betrayal. “Why? Why would a loving father take away the most amazing plaything I’ve ever discovered in my life???”

    Developing a deep, sincere connection with Hashem requires, among other things, a great deal of humility.

    When we realize that we don’t understand life events that are displeasing, that we never will understand them, and that we’re not SUPPOSED to understand them – then we can let go of “why”, and re-affirm our love for our Heavenly Parent by asking “what” – now that this displeasing event has happened, what can I do to help my fellow? What can I do to serve You? What choices can I make to bring Your glory into the world?

    The interesting thing is, after many years of actively working on my relationship with Hashem, every now and then, Hashem blesses me and allows me a teeny tiny little peek into the “whys” in my own life. Very tiny – but perceptible.

  9. Saturday, 30 April 2011 9:10 pm

    How real and how touching. I’m so sorry, Sarah, that you’ve had such the experience. I wish for you and your family much more simple moments of love, joy and worship, in ways that you can all experience what it is you need to, you yearn to, and that your little one (for however old he may be, he will always be your little one) can learn to experience things, as well, in his own way. Sending you much love and many blessings at this holy time of the year.

    • Frume Sarah permalink*
      Tuesday, 3 May 2011 7:04 pm

      Such loving and caring thoughts, Andrea. Thank you.

      (Beernut’s chronological age is nearly eleven)

  10. Sunday, 1 May 2011 12:42 am

    First time visitor from TRC. It sounds like you are in a tough place, and I have to believe that it will only strengthen you. Good luck!

    • Frume Sarah permalink*
      Tuesday, 3 May 2011 7:05 pm

      Thanks. The experience certainly forces me to constantly reevaluate which are the most important take-aways I want for my kids.

  11. Sunday, 1 May 2011 1:26 pm

    thank you for sharing your heart about your struggles right now. thinking of you

    • Frume Sarah permalink*
      Tuesday, 3 May 2011 7:06 pm

      Thanks, Frelle. Putting my struggles up on the screen, oddly enough, seems to give me a sense of power over them.

  12. Monday, 2 May 2011 11:05 am

    This is so hard. I don’t have wisdom for you. I can tell you that I struggled this year with questions of how to make Pesach present for my (toddler) son and that I struggle even now with my fantasies of the active and joyful Jewish life I want him to have (and my awareness that I can set the scene, but I can’t control how he will feel about the tradition or the chagim as he ages — and what about all those things one hears about how rabbis’ kids usually rebel, anyway?) …and all of that pales in comparison with the struggles you’re living. I wish for you abundant hishtavut.

  13. Frume Sarah permalink*
    Tuesday, 3 May 2011 7:13 pm

    I think what is so troubling is that Beernut’s disabilities make it that much harder to even create the Jewish life that I wanted to give to our children. All too often, my efforts are completely thwarted.

    I am hopeful that my stepping down from the pulpit will bring hishtavut to our lives.

    And BTW, this rabbi’s kid rebelled by becoming a rabbi 🙂

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