Monday, May 22, 2017

Learning to own your child's differences

The ideal, of course, is for your child with disabilities to own his differences. Max has never paid much attention to what other people think of him, for better and for worse. For me, it's been an evolution, and I'm in a pretty good place as this weekend revealed.

Our family attended the bar and bat mitzvah of twins Lucy and Josh, the children of one of my best friends. We all got dressed up. Max decided to wear his new red Chucks. My younger mom self would have been concerned that they would make Max stand out from other guests. This mom thought, He is going to look so cool. At temple, Lucy glanced at Max's sneakers and gave him a thumbs up, and Max beamed.

As we sat through the beautiful service, it occurred to me that we were likely going to run into a problem. Dave and I had been given the honor of opening and closing the ark for the Torah scrolls to be put away, along with another couple. I realized, belatedly, that Max was going to want to come up there with us. When I explained that he needed to let Dave and me go alone, he got weepy.

My younger mom self would have gotten anxious. This mom decided what would be would be. I knew that my friend, one of the more caring people in this world, would get it.

The rabbi called me and Dave up to the ark. Dave happened to have stepped out of the sanctuary with Ben, and so Sabrina dashed off to get him. I walked up and stood next to the other couple. I watched as Max sat there and got worked up and Dave struggled to get him to stay put.

I motioned to Dave to bring him up.

"You sure?" Dave mouthed back.

I caught the eye of my friend, who smiled and said, "It's OK." I nodded at Dave.

And so, Dave and a teary Max approached the ark.

My younger mom self would have would have worried that Max had ruined the moment for my friend's family. My younger mom self would have stood there and felt all sorts of uncomfortable about what people were thinking. That mom would have also probably had a moment of self-pity about how difficult her life was.

This mom was grateful for an understanding friend, and if other people in the room weren't the same, so be it. This mom stood calmly in front of the ark, smiled at her son, kissed him on his head, and helped him close it.

There were two big buses outside the temple to transport Lucy and Josh's friends to the party. Max didn't know any of them, but decided he wanted to go because he loves bus rides. I asked Sabrina if she wanted to accompany him.

"No, that'll be weird!" she said. "The buses are for their friends!"

My younger mom self would have also thought that Max would look weird. This mom approached a bus monitor, asked if there was room for Max, asked if she'd give Max a hand getting off the bus at the party venue, settled Max into a seat and left, glad for the joy ride.

At the party, dozens of tweens and teens danced, played video games and ping-pong, and took turns taking silly pics at the photo booth. Max wandered around the dance floor alone, mesmerized by the videos on screen.

My younger mom self would have felt sad for him and stuck by his side. This mom let him do his thing. He was happy. I was happy.

Max is his own awesome self. I am longer that mom.


  1. I have a question, and I don't mean to be judgmental, only to understand. What would you think of a mother who took her typically developing toddler with her while opening and closing the ark to avoid a meltdown? I guess what I am struggling with is where do we draw the line between appropriate and inappropriate behaviors, between imposing on others behaviors that we would condemn had our child been typical, between claiming a special but just treatment BECAUSE our child is disable and condoning an inappropriate behaviors because we have enough issues and just need a break. Thanks for your input (and for your blog!), Sheila

    1. Sheila, I personally think it's impossible to compare youth with special needs to typically developing ones in these sort of scenarios, plus every situation is different. It's always a judgment call. In this case, Dave was juggling our baby and Max. A meltdown would have completely disrupted the service. Appropriate/inappropriate isn't the was a matter of doing what was best for the greater good, and sometimes, that has to happen. My friend agreed! We had a conversation with Max later about his behavior.

  2. I'm trying to think of a situation in a Christian service where I would think it is not appropriate to have a child as a tag-along. I can't come up with any. (Though I'm sure others would disagree!) From your description it sounds as if Max was just with you, not participating in the opening/closing of the scrolls. In hind sight, Max had the opportunity to see close up what you and Dave were doing. And you had a conversation with him. He now has a concrete image in his mind and understands your expectations. If a similar situation occurs you can come back to this one. Way to go mom! I almost carried my 11 month old daughter down the aisle when I stood up for my step-mom when she and my dad married. She had come home at 8 months and had been through a boat load of medical stuff and as a result had a very insecure attachment. My sister just kept putting Cheerios in her mouth and didn't turn her to see me :-)

  3. That is a really interesting post, Ellen! I think it nails something that has been tickling my brain for a while - the whole piece about just being cool with how your child IS, you know? And I think that's really a process for a lot of us parents, with or without disability in the equation. I was reading through some old journals that I kept when I was pregnant with Moxie and when she was a baby, and the evolution of me from who I was then to who I am now is really incredible.
    Thanks for the post, and as always, your honesty. xo

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Thanks for sharing!

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