Crawling Under, Rather Than Leaping Over, the Bar

I couldn't help wondering, yesterday, as I sat with my three kids in box seats at Carnegie Hall, whether the people who teach my son could even imagine that he could sit through a two hour concert of classical and contemporary music with poise and grace. I sometimes--often this year--think their expectations are too low, that if Noah sits quietly, draws nice pictures, and enunciates well, they've done their job. Not even close, in my book. I took this child to Carnegie Hall, then we stopped into MOMA for a brief visit (Noah's second in about two months), and then we headed to Ruby Foo's, which didn't have the egg drop soup Noah'd been craving for hours. That can be a huge issue for Noah, not getting what he wants when he wants it, but he managed, and we had a really nice meal.

So this morning, as I sat in a team meeting and learned that Noah drew a windmill, and that while he can sign everything by spelling it--but seems not to have learned a single actual word in the six months since he's taken sign language after school--I didn't feel the least bit grateful. I smiled and made nice, but wanted to stand on the table and scream: DO YOU KNOW WHAT MY CHILD CAN DO?!?! DO YOU KNOW WHAT IT MEANS TO RAISE THE BAR HIGH ENOUGH THAT HE HAS TO TAKE A RUNNING LEAP TO GET OVER IT??!?! HAVE YOU EVEN TRIED TO MOVE THE BAR TO A PLACE HE MIGHT NOT BE ABLE TO GET TO?

I don't discount the progress Noah's made, but as I recounted to one of our special ed. gurus in my town, my waking nightmare is thinking that because Noah doesn't throw chairs, has a very low IQ, and is a smiling and compliant child, no one's too exercised about pushing the envelope with him. I pray my nightmare isn't the reality, but sometimes I can't help wondering...

Death Defying

How do I explain death to a child whose disability precludes his being able to understand abstract concepts? Noah still thinks his grandfathers are in the hospital. One passed away eight years ago, the other three years ago. In the past couple of weeks, Noah has repeatedly mentioned that he misses his Papa. When I ask, he acknowledges that it's both Papa Jack and Papa Murray that he misses. "How does that make you feel?" I've asked. "I feel sad." Noah always comes back to: "They're in the hospital. Can I make them feel better?" And I have to tell Noah that there's nothing we can do to make them feel better. It's too late for that. When Noah asks where his Papa(s) are, I say that they're in heaven. More often than not he'll then reply, "Can I go to heaven?" "No! No! Not for a very, very, very long time."

I'm never quite sure how much Noah knows, and Murray passed away when Noah was only five. "What do you remember about Papa Murray, Noah? Do you remember what he looked like? What color was his hair?" "It was white." Yes, it was. "What about Papa Jack? What did he look like?" "He had a beard." "And what else?" "A mustache." I take some comfort in the fact that Noah remembers these details, because I know it means he's remembering specific people. I tell Noah over and over that I miss Papa Murray and Papa Jack too, and that I know they miss him, and that they loved him very much.

All of this just brings into sharp relief for me the power and rightness of Noah's instincts about people. His grandfathers were two of the nicest, most decent, most loving human beings the world could ever know. And Noah knows that; he feels that about them instinctively. He may never understand what death is, but he knows better than just about anyone I have ever known or will ever know, what love is.