This post is by Carrie, whose twin brother Nicky has autism.
My twin brother has autism and is completely nonverbal, which makes it very easy for me and the rest of my family to project our own feelings onto him. For instance, my dad is certain that Nicky loves the Apple Store as much as he does. My aunt is sure that Nicky loves watching her do gymnastics. I’m positive that Nicky loves my singing (though most people will assure you it’s not very good).
My brother’s autism is pretty much a big downer every day, but we’re lucky in a lot of ways, because Nicky is a wonderful, sweet, amazing guy, who only becomes more engaged and with it each passing year, and is honestly an object of cult obsession in our family. He inspires many phone calls, many group texts, many long email chains. Any picture of him doing anything, even sitting there frowning, is a delight.
So it was natural when my grandpa died this summer that many of us focused on Nicky as a coping mechanism. Because why would we wallow in our own grief when we could think about Nicky -- how is Nicky feeling? Look how well Nicky is doing! Look how smart Nicky is!
We had good reason to focus on Nicky with this one. Nicky had lost family members before but he and my grandpa had a special bond. Before Nicky grew into the sweet, wonderful guy he is today, he was a difficult, angry little kid. But he loved our grandpa (who we called Papa), and Papa loved him and treated him the same as all of his verbal grandchildren, if not better.
And Nicky really seemed to get it, when Papa was dying. We were sure we weren’t projecting this time. He’d heard my dad and uncle talking about Papa’s declining health and burst into tears, which the people at his group home said continued throughout the week. The only time he didn’t cry was when he finally went to see my grandpa in Florida, about a week before he passed. Nicky was sweet and gentle and calmly held Papa’s hand and gave him kisses, which was just what they both needed.
And then the next weekend, he passed away, and we weren’t sure what Nicky would make of the whole thing. Would he understand that we wouldn’t be seeing Papa anymore? When we went to the funeral, would he understand it was to say goodbye?
My position as Nicky’s twin has made me, regrettably, a pretty morbid person. I was born with my responsibility to Nicky instilled in me. I always had it in my head that my grandparents would die, and then my parents, and then it would be me and Nicky and I’d take care of him until he died. I’d pray, and still do, for him to have an easy life. That my parents will be with him for a long, long time. That he won’t get cancer or something horrible, and not understand what’s happening or why he’s in pain. And most of all that he doesn’t outlive us all -- that I’m there to grow old with him. The thing I fear most is that Nicky will ever feel alone or scared.
This was in my mind as I watched Nicky at my grandpa’s funeral. And as usual it was incredibly frustrating not to know what Nicky understood about all of this. But he definitely seemed to get something was going on. He was very somber and attentive. He kept creeping closer to the gravesite, so he could hear the Rabbi better. It was an awful, hot day in July -- three elderly gentlemen passed out from the heat, and some people ended up in their cars with the AC on. But Nicky waited the whole thing out, kept his jacket on, listened, nodded. And then we walked out and I said “okay, let’s say goodbye to Papa one last time” and we turned around and he waved goodbye.
The next day I picked Nicky up at his house so I could bring him to my dad’s to sit shiva. We walked down the street and I asked him if he remembered how we said goodbye to Papa yesterday. He nodded, he did. Swept up in my own grief and feelings about everything that had happened, I decided this was a good time to have a talk with Nicky.
“It’s really sad,” I said. “We said goodbye to Papa, and we’re not going to see him anymore, but we have all our great memories, and that’s why we take pictures, so we can look at him whenever we want.” (I said this because Nicky loves looking at pictures.) “This is just the way life is,” I weirdly and self-consciously found myself telling my nonverbal, disabled brother in the middle of 16th street. “We have to say goodbye to everyone eventually, and it’s sad, but we’re lucky to have so many people we love and so many great memories.” And then I said, surprising myself, “and I promise, Nick. I’m going to be around forever. And if you ever need to talk, call me, and if you ever need me with you, I’ll be there. I’ll always be here for you. You’ll never have to say goodbye to me.”
While I considered the major, major jinx I just put on myself, Nicky reached into his bag to take out his ipod, and I was excited because this usually means he wants to communicate by pointing at something. What was he wanting to say to me? He took out his ipod, scrolled through his pictures, and pointed to a picture from Stew Leonard’s, his favorite (and I sincerely hope, the only) grocery store featuring singing, animatronic milk cartons. He pointed and pointed, which usually meant he wanted me to sing their theme song. So I did, for the rest of the journey home.
Great. Here I was thinking I had this big important bonding moment with Nicky, this huge life talk, and he was just thinking about the stupid grocery store. I started to get upset. Maybe I was wrong to think that Nicky had all of these deep feelings, maybe we’d been wrong about all of the likes and dislikes we’d assigned Nicky over the years. Maybe he didn’t love airplanes or Disney or the color green. Maybe all of those people who had and who would write Nicky off as vacant and out of it were right. And maybe it was better this way. Maybe this made my job of growing old with him easier.
But then Nicky never stopped pointing at that picture of Stew Leonard’s, to the point where it became really alarming. He pointed to that picture all through the shiva, on the subway, on the walk back to his house. And singing the song wasn’t doing it anymore. All he wanted to hear, over and over again, was “Nicky, your dad is taking you to Stew Leonard’s this weekend.” My stepmom and I took turns chanting it. He’d tap her on the shoulder and she’d say it. When she was done, he’d tap me on the shoulder and I’d say it. It was the closest I’d ever come to snapping at him. It was maybe the only time I’d ever said no to him. My voice was breaking and I said “Nicky, I can’t talk about Stew Leonard’s anymore.”
On my last day in town I picked up Nicky to take him to breakfast and luckily, the people at his house had no idea what I was talking about when I said “man, this Stew Leonard’s picture, right?” I was relieved that Stew Leonard’s mania was over. But once we left and Nicky and I were on our own, the ipod came out, and it all started over again. Like he was waiting for it to be just us to let his Stew Leonard’s freak flag fly. It started all over again. “Yes Nicky, your dad is taking you to Stew Leonard’s this weekend.”
So after a while I was completely on auto-pilot, and my mind wandered, and I started to worry that maybe my talk actually broke Nicky. That maybe this whole thing freaked him out to the point that all he wanted was the assurance that things would be normal again. That there’d be no more funerals and no more saying goodbye, at least for a while, and that dad would get him every weekend and take him to Stew Leonard’s, just like always, forever. Yeah. Maybe this obsession with Stew Leonard’s was actually a far more sophisticated reaction than I’d ever realized, and it was Nicky’s way of showing that he’s like all of us -- life scares him, he’s afraid of growing up, he’s afraid of change, and he knows that things will never be better than they are now, while he has family that loves him and a cool house in Chelsea and he goes to Stew Leonard’s with Dad every weekend.
Or maybe I’m just projecting. I don’t know. I don’t know what Nicky knows. I don’t know what’s going to happen. I don’t know if technology will eventually advance so that Nicky can talk to us Stephen Hawking style. I don’t know if he’s going to be a disabled man that people stare at on the street. I don’t know if he really gets that our grandpa died. I don’t know if I’ll be there with him when he grows old. I don’t know if he worries about it as much as I do. Or at all.
But as many families of the disabled know, I have to believe that he understands. I have to believe that he cares. What else can we do? Nicky called me every day the week I came back from the funeral. I told him I’d be back to see him soon -- I figured he was calling me because he’d just seen me every day, and now he missed me. I don’t know, maybe I was projecting. But maybe I wasn’t.