when the floodgates open ..

 

…  So comes the flood

Darby was getting frustrated doing her math homework last night. “Mama, how am I supposed to know how to do this when I missed math today?” she asked. 

Darby attends a Sib Shop once a week at school. It’s essentially a support group for children with siblings who have special needs. It provides a safe space for her to talk and to share her feelings with a couple of other kids who understand and can relate to her experience. Once a week, she disappears for forty five minutes or so, while the rest of her class is learning math.

When she returns, the kids apparently make a big fuss over the fact that she’s been gone. One friend in particular jumps all over her, happy that she’s back. The rest of the kids (to her second grade mind ALL of the rest of the kids) want to know where she’s been.

“Sometimes I feel like Hannah Montana, having this big secret.” she began.

“What secret, baby?”

She looked at me like I had sprouted a third head. She had an exasperated; “God, can my mom really be this dense” look plastered all over her face.

“Kendall’s autism, Mama.”

I thought I must have misheard her. I mean, I talk all the time about the fact that we are totally open about it, don’t I? We are, right? I certainly think we are. Aren’t we? I was confused.

I tried to explain that she should never, ever feel like she had to keep it a secret, but that she was certainly free to choose not to talk about it with her friends. “But please, Baby, never feel like you can’t talk about it if you want to. You make whatever choice makes you comfortable.”

She looked tired as she said, “But that’s not what you said.”

Now I was lost.

“Mama, when we very first talked about this, when I was in kindergarten, you told me that this wasn’t something that I should talk about at school, remember?”

Oh. My. God.

No, I didn’t remember. Kindergarten? The very first conversation that we ever had about autism was well over two years ago now. Jesus, she was FIVE. Thankfully I have business cards because I can barely remember my name these days no less the details of a two year old conversation.

I took a deep breath.  The picture was fuzzy at first, then dizzyingly zoomed into focus.

I flashed back to sitting with five year old Darby. We were on nearly the same spot on her bedroom floor, as I tried to explain that there was a name for some of her sister’s differences and challenges. I remember saying something intensely lame like, “Of course it’s not a secret, but for now let’s just talk about it in the house, OK?” And I remember her looking at me, the picture of innocence and concern and asking, ‘But what if a window is open and someone walks by and hears us talking about it?” I remember trying to back pedal and make her understand something that I didn’t yet understand, to accept and embrace my completely contradictory and nonsensical plan. At five.

I scrambled to apologize. I told her that I took complete responsibility for the fact that she had felt as though she had to keep it all a secret. Although we talk all the time about it, no one had ever explicitly told her that we had outgrown our initial misgivings and fears and ignorance. I hadn’t told her. How could she be expected to know? I told her that it was OK. I told her that the fact that she had wanted to keep it a secret did not mean that she was ashamed.

“But I am ashamed,” she said as she began to cry.

“Oh, sweetie, I know,” I started, thinking that I did. “But please don’t be ashamed of how you feel. It’s OK. It makes perfect sense. It’s not that you’re ashamed of your sister, it’s that ..”

She stopped me short. “But I am.”

I did my best to stay composed.

The flood gates opened and she ran with all of things that have been brewing in that tiny little head.

“I am ashamed, Mama. It’s really hard. You have no idea how hard it is. I think it’s a lot harder for me than it is for Kendall. You always talk about how things can be tough for her, but you know, I think they’re a lot tougher for me. I’m the one who has to handle it all the time. I’m the one who has to deal with all the stuff she says. If she were typical, everything would be different.” 

I was struck by how adult she sounded, using words like ‘typical’ and ‘handle.’ Even her language served to prove her point. She has a lot on her plate.

She continued, “Sometimes I just wish I could rewind my life to when I was two, to when we didn’t know that Kendall had autism. How did we not know she had autism when she was a baby? How did you not know that?” Her tone might have been accusatory, but it was not. It was just a question.

I did my best to answer her. I tried to assure her that all of her feelings were perfectly understandable and valid. “I know, Baby. It’s OK,” was beginning to sound like a mantra.

She had said the word ‘autism’ so many times that it was ringing in my ears. It sounded odd. AW-tizzum. “If she didn’t have AW-tizzum, everything would be perfect.”

I tried to address each point as it came up, but they started coming rapid fire and she obviously just needed to let it all out.

She told me that she often wishes she could be Kendall for a day. That it would be so much easier to live Kendall’s life than her life. “I’d keep my brain, but still get to see how things look from inside hers. And I’d have an autism tutor!” she added excitedly, referring to Kendall’s aide in school. “So when I was having trouble with math I’d get help.” Her eyes lit up at the prospect.

She was on a roll now.

“And if I had a typical sister we could play games together.” I reminded her that Kendall plays Caribou and has recently started to play Candy Land. That she plays Memory and Pizza Pile Up. Darby looked at me as if I were a little slow. “Mama, we could play something that was at least a tiny little bit a Darby game. Something I might like to do.”

I told her that many of their differences could simply be attributed to their difference in age; that not everything falls under the umbrella of autism. I reminded her that two years ago, her interests and abilities were different too.

“I know,” she said, “but she doesn’t even do the things I did when I was five. And she’s almost six.

I tried to explain how incredibly lucky we are that Kendall can do the things that she does. We talked about some of the children from Kendall’s preschool who were severely impaired. We talked about kids who have never spoken, who have no means of communication at all. Her eyes were wide.

She told me that she feels like autism is everywhere. “I know so many people who have it,” she said, sighing a heavy, world weary sigh. A sigh that should have belonged to a forty year old, not an almost eight year old. “I mean, there’s Kendall and Riley, and ‘Marie.’” She stared at me, waiting for a reaction.

Marie is a classmate. No one has ever told Darby that Marie might be on the spectrum. I waited it out, saying nothing. “I figured it out,” she said, answering the unasked question. “By the way she acts all the time.”

“Why are there so many people that have it, Mama? Can’t they stop it? Can’t they help? I mean, maybe not now, but in the future? Can’t they?”

Again, the grown-up words, ‘the future’. The grown-up concepts. The questions that I can’t answer.

We talked for a long time. She seemed to understand that I didn’t have all the answers.

It seemed that, for now, asking the questions out loud was enough.

Unfortunately, I guess it has to be.