The Drops Are Falling From My Eyes

This is how Noah described crying last night, as the drops fell from his eyes, onto the blanket on my bed. Noah was distraught over not being able to find Suppertime for Frieda Fuzzypaws, a book he's had since he's probably three years old. Luckily, he found the book in my carry-on back from our recent trip to Florida. Crisis solved!


But once again, Noah's reaction was a poignant reminder of all that remains challenging to and for him. And in that vein, it was fascinating to hear Noah on this trip refer to Si as his grandfather. Si is my mother-in-law's companion. And yes, he is a grandfather. But not Noah's grandfather. Noah's grandfathers both passed away, Murray, z"l, eight years ago and my father, z"l, three years ago. But Noah still thinks my father is in the hospital. Death is simply too abstract an idea for him. As Len pointed out, if Noah can't see it, it's not really real to him. He can see Si, so therefore Si is his grandfather. And that made the drops fall from my eyes...

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.

What Does Retarded Really Mean?

Technically, it means a person has a particularly low IQ, somewhere in the 60 range, if memory serves. My younger son, Noah, was recently subjected to IQ testing (part of his every-three-year testing regimen), and came out with a score of 48. I suppose that should make me feel awful, desperate, deflated. After all, he's officially mentally retarded, based on that score. But what I felt instead was that if in fact Noah's score represents him in any real way, then my sincere hope is that the world finds itself populated by people with IQs of 48.

After all, with more 48 Noahs in the world, we'd have a new population of people who are kind, who have no agenda, who aren't seeking to gain advantage over others, who only want to please people and make them happy, who have no urge to make money, to make war, to make other people feel bad. In fact, we'd have a whole new group of people who are entirely about being happy and making other people happy. We'd experience the simplicity of loving the people we're with, of having extraordinary radar for people who are genuine in their affection and concern, and we'd experience childhood wonder nearly every moment of every day.

My thanks go out as always, to Noah, for reminding me that those markers so many of us hold dear--educational attainment, job status, bank balances, etc.--can't hold a candle to what a "retarded" child like mine can give to the world. It's a whole new window into who really has ability in this world, and what it actually means to be disabled...

Download and Watch America's Song

Download and Watch America's Song

Speed Bumps and Mountain Peaks

I've never been one to take for granted that life will be easy. In fact, I'm quite the opposite; the person always expecting the other shoe to drop. It would be nice, now and again, if my dismal expectations did not come to pass.

I had and have no illusions that raising kids will be a picnic. Noah taught us that when he brought his edible self--and his autism--into our lives. But who would have thought that he'd turn out to be the easy one, all things considered? What to do about a teen who seems so down at times, so disengaged, so cynical? I'm forever being told how much my kids are like me, but I had reasons to be glum as a teen. My mom was a whack job and as a result, I didn't live in a happy home. Food in the fridge was an issue. Not so for my teen. If the fridge isn't always packed, the pantry is. He can have friends over without fear of having his mother embarrass them (at least most of the time). He's got more God-given ability than I would have if I lived ten lifetimes. And yet...

With our daughter, I thought we'd be managing speed bumps, but now I'm thinking more Himalayas. Every day lately seems to bring tears and fears. Tears over not having friends, over not fitting in, over not being included, over literally not being seen. And fears that it will always be so. I never wore rose-colored glasses, so I am well able to see where she might make things harder for herself, but having been a misfit myself, I ache for her. When she cries, I do too. Really. When she's at fault, I call her on it, but when she tells me how she tries to join other kids nicely, by saying things like, "Hey, what are you guys talking about?" and the response is, "None of your business!" I want to find those kids and strangle them. I want to tell them that being mean snot-asses now might make them feel powerful, but they'll peak in high school like all girls like them do, and it'll be downhill from there.

I try to tell myself that all of these things are phases, that kids change, and that circumstances do too. But it feels like we just leave one phase and enter another. And every successive phase seems harder. Even the little one pines for when things were simpler, when she was younger, in kindergarten. I feel that way too. Life was so much simpler when I was in kindergarten. Fingerpainting and sharing snacks. What more did life ask of you? And everyone was equally able to give.

Future Present

Len took Ariel and Noah to the aquarium this weekend where, among other things, they saw a group of severely developmentally disabled adults. Ariel asked Len if Noah would ever live away from home like those people do, in a group home. Len told Ariel that as long as he's alive, that will never happen. At which point Ariel turned to Len and said, "As long as I'm alive that won't happen either."