When A Child Has Autism, 'Normal' Moments Are Beautiful And Bittersweet
05/29/2013 - 15:23
Rabbi Rebecca Schorr
Rabbi Rebecca Schorr
Rabbi Rebecca Schorr

We could have been any other family. That’s how normal it was.

The kids and I were heading home after grabbing dinner at a local eatery. The meal was like any other. That is to say: only one drink spilled, a few minor meltdowns and the server remembered us because of the particular way Ben likes to eat his meal. (An even number of the two items he orders so that he can alternate eating from each plate. See? Memorable.)

It was a beautiful day and as we were driving home I thought, "If only we were like other families. It is so lovely out, it's still on the early side and I'd love to just take a little drive with the kids." But we aren't like other families. And while 6:45 p.m. is early in most households, in our household it is close to 7:30 p.m., which is the end of Ben's day. Which means that 7:30 p.m. is the end of our day. Yes, his body's schedule dictates our family's schedule.

On this particular night, however, Ben was in energetic spirits. With his playlist coming out of the minivan's speakers, he was relaxed and in a terrific mood. So much so that when Lilly wondered if we could drive around and explore a little, he enthusiastically endorsed the idea.

Was it something in the air? After all, just moments before I had wondered the very same thing.

And so for the next thirty or so minutes, Ben, Lilly, Jacob and I explored some stunning, and previously unknown to us, areas not far from our home. Laughing. Singing along to the music. Exploring. Just ... being. It was normal. So normal that it hurt.

This ache was bittersweet: The welcomed heaviness of a full heart as I struggled to stay in the moment and savor my children's enjoyment, and the unwanted burden of anticipation. Because I knew that this one perfect moment would not -- could not -- last.

Living with Asperger's can be so very confusing. Ben gives the illusion of normalcy. Between the meltdowns, periods of rigidity, verbal tics and rages are many ordinary moments. Sometimes I catch myself wondering if we've just been blowing this all out of proportion. Or if he's just been having a bunch of really bad days. But then the brief spell is broken. The normative behavior is momentary. Ephemeral. Inconsistent. And then over.

I hold it true, whate'er befall;
I feel it when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.

-- In Memoriam A.H.H. by Alfred, Lord Tennyson.

It is a truth. It is my truth. These fleeting moments leave behind tiny fissures in my heart. I wonder if the transient joy is outweighed by the more permanent stresses.

The answer is yes.

Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow whose work appears regularly on the Rabbis Without Borders blog and Kveller.com as well as a variety of other online sites. Writing at This Messy Life (www.rebeccaeinsteinschorr.com), Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Follow her on Twitter @rebeccaschorr

Comments

I love this so very much. Thank you for sharing your world in this way. Your words hold so much power and significance. So true and touching. xo

Once again, you have touched the heart of this reader.

A beautiful and moving essay.

You are such a wonderful mother and person. Your children are so very blessed to have you as their "coach" in life as my mother always refers to herself. I don't know any "normal" families but I love how no matter what your day brings you always find the true joys of parenthood even if it is only momentary. It can't be easy but I bet Ben would say he has always felt "normal" with you as a mother and that he truly appreciates this from you.

Rebecca, we can't ever understand what it is like to live your life...even those whose child might have Asperger's knows that every family is unique. But, thank you for using your powerful, honest writing to share this glimpse with us.

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