live a story of wholeness

She came into the world quickly. And loudly.

She was a screamer from the beginning. Even our neighbors commented on the decibel level.

Everything set her off—invisible things, hunger, crowds, things we could not know.

We worried when she got old enough to scream, “Help me, help me,” that people passing by the house, or neighbors even, would call the police. I know I would if I heard that. But no one did and we lived for years with sometimes up to five or six tantrums a day that would last, or could last, for hours each time, each accompanied by “Help me,” by which she meant she needed our help to be able to stop.

Her anger was palpable. It was something I could feel in the air, as if I could reach out and grab it, hot to the touch. Like lava, unmanageable, and deadly.

I took her to The Hop, her favorite ice cream shop, for a friend’s birthday when she was about five years old. It was loud, there were a lot of children, and there was The Claw Machine, a game she loved to play and couldn’t handle losing. The first time Tess ever tried that claw, she got something and so that became her expectation—that she would win every single time and that’s not always the case. We recognized after a couple of very difficult moments in The Hop that we couldn’t let her play that machine anymore. That no matter what we planned, no matter how we talked to her about not losing it and not having a fit, she couldn’t help herself.

I could see the signs of an impending thunderstorm at the birthday party. And then it hit. Parents turned to look as I struggled to help her pull herself together; there was no way out of it except through it. I knew we had to leave the party. No one stepped forward to help. I picked her up and she started screaming and flailing her arms and legs. I made hurried apologies and left, struggling to hold on to her as I walked toward the car. It was clear that people were a mixture of horrified and sorry for me.

I looked back at the shopping center and saw a crowd forming on the balconies, watching. I could barely hold on to her; she was hurting me with her fists and her feet. I dropped my purse, and nearly dropped her. All while she screamed bloody murder. People started dialing 9-1-1, thinking I was kidnapping her. I opened the car door and she braced herself against it, like a spider with arms and legs outstretched. I could not get her in the car. People started coming toward me, but not to help me; to stop me, instead. I finally got her arms and legs folded at the same time and she fell into the car. I locked her in, and ran to the driver’s side.

I was bruised, in many ways.

This was our norm, not the exception.

She spent the first week of Montessori pre-school in the principal’s office, her thunderstorms unmanageable in the classroom.

There were so many days I would look at John and say to him, “I can’t live like this. I cannot live like this.” And he would look at me and say, “I know. I can’t either.” There were days when I just needed it to stop and so did he and mostly so did Tess because in the midst of all this, she wasn’t unaware. She knew, and even as a child, a young, young child, she would look up at us and say, “Help me, help me, help me,” and we had no idea what to do to help her. We kept waiting, I guess, for things to get better, for her to grow out of it, for something to help.

We sent her to public school because we thought the socialization was something she needed, that she needed to learn how to be around other people. She spent kindergarten at the bad table. She spent first grade running laps at recess as punishment. And the list goes on.

She would come out of school every day looking sad and grumpy and inevitably when we got home she would blow up. Now I know: she was holding herself together as best she could during those six hours at school and needed home to be the place where she could explode. We used those six hours as our respite. knowing that the afternoons, the evenings and the weekends were ours to handle. We were all tired. And just imagine the cost to her.

There were times I had to walk away. Once I went to Top’s Shoes downtown with her because I feared I would hurt her if I stayed home with her one more moment. I cried in the children’s shoe department, consoled by the saleswoman who walked around with Tess in her arms as I sobbed, surrounded by shoehorns. We believe we are so alone in these moments, because no one talks about them. We frame our beautiful moments on Facebook; not these.

I once found a note Tess had written: “I know why I can’t go on trips with Mama, because I have fits and Emma never did.” So I planned to take her with me on a business trip. The night before the trip she flew into a rage, completely out of control to the point we thought we might have to take her to the hospital. It went on for hours and hours and hours.

And when it finally ended at 3a.m., I thought, “Well maybe she’s gotten it out of her system and tomorrow we’ll wake up and we’ll go on this trip.” And in the morning she did the same thing and it became clear to me that not only could I not take her, but that I was going to miss the flight myself.

Tess had created a little book that had columns in it to help her deal with change or unexpected things that happen in any given day. The column headers were “here’s what we planning to do,” “did we do it or not?” and “serendipities.” That third column intrigued me. Did it mean if we weren’t able to do it, where’s the serendipity in that? What good came out of the change in plans?

And so in this small book she had created a game plan for our trip to Nebraska; What she would pack, what she was going to do on the plane . What she would do when she got there. The kinds of adventures she was planning to have. All in great detail.

When I got back from the trip I found that small book, annotated with her little handwriting, that kind of fierce big pencil handwriting of a child. In the “did we do that?” column, everything was marked with a no. There were checkmarks all down the no column and in the far right column all it said was this: “Because I had a fit.”

These are the things that will break your heart wide open as a mother, as a father, as a parent, an aunt, an uncle. Any adult watching a child so struggle and be so disappointed. Not only disappointed in not getting what they so looked forward to, but in seemingly having sabotaged that treat themselves in some way, even unconsciously. I now believe she wasn’t sabotaging herself, but saving herself—she knew she couldn’t handle the trip.

All the while, she is an amazing spirit of a child, brilliant in her own way. When John found a notebook of algebraic equations stuck under her pillow, he showed it to me in awe. She was 4 years old; it was about that same time that she taught herself to read. She catalogs her life in thousands of lists and tiny books she creates. She is a curator of the miniature, a painter of the world around her. The books she creates have names like “The Book of Unplanned Events” and “Alone.” It is clear to us she is trying, desperately, to make sense of her world.

“Why did it take you so long to check this out?” a friend asked last year. It was an honest question. I sat, looking at her.

“Well, I guess we thought she would outgrow it. And perhaps we thought people were right when they said she is just spoiled.”

We gave in to her a lot. Almost anything to get her to be quiet, to get her out of the awful fits she would throw, sometimes for hours, sometimes 5 times or more a day. It has been exhausting and isolating and secret.

My job as a parent is not to wish that Tess were different, and I don’t. My job as a parent is to recognize her difference. To love it. To help her love it. To help the world love it and appreciate it and see it and to open up space for her to be fully who she is, not who I need her to be or want her to be, but who she is.

This is complicated somewhat by the fact that I am anxious about leaving her in a world that does not see her that way, that does not understand her in that way, that does not slow down enough to appreciate who she is and what she brings to the world. I know that that will be difficult for her and that I will not always be here to help her with that process. That’s a scary thought for me. That’s a thought that has inhabited me fully. It’s not a thought I can run away from or wish away. It is something for me to grapple with. It is something for me to acknowledge and own.

The feelings that I have about Tess are complex, not complicated. I love her. I love her and Emma with all my heart. Do I have regrets about her? No. I have regrets about me. I wish I had moved beyond my own feelings of inadequacy and embarrassment at her behavior to seek help for her earlier. I wish I had acknowledged the difficulties that all of this caused for Emma. There are regrets about that. There are unsaid things about that.

Emma sat me down late one afternoon a few years ago, just before dinner. Dinnertime was always difficult with Tess. Emma sat me down and started discussing my inadequacies in parenting Tess and I sat in a silent fury and finally told her that when she had children of her own she could criticize how I was parenting.

I’m not proud of that conversation with Emma, but at that moment all of us were sliding down some very slick mountain in the rain with no ground to hold us up. Because Tess’ behavior was unexplainable, it was inexcusable. It was only later, after we knew that there were reasons for this behavior beyond our parenting, well beyond our parenting, that we were able to really relax into it. Should it have been so, I don’t know, but it was.

Our social life reduced to a dot. We were unwilling to take her places with us, because she was so unpredictable. We couldn’t plan birthday parties because who knew how that day would be, or if it was a good day, if she would be able to handle a party. Play dates more often than not ended in tears and fear and screaming.. It made Emma’s teeanaged life a hell; she dare not bring friends home because of it.

I posted online a photo of her in great pain, with this note:

The photo from today is a hard one,

a painful one, one I debated sharing.

I do so to acknowledge that life is just

really, really hard sometimes.

And our kids hurt, sometimes,

and sometimes we are at a loss to help them.

But we do, and in the only ways we know at the time.

It is also a photo that, to me, says

“We are all human. We all have moments like this,

deeply dark and hard moments.

And some of us have people to reach out to,

and some of us do not.

When you are in pain like this, surprised or panicked

or afraid or lost, I hope you will reach out,

even if you are reaching out to people

who don’t feel prepared to help you.

Perhaps their very presence is what saves you.

And yet, Tess, like us, is making sense of the world in the only ways she knows.

Tess went for a picnic, a movie, and ice cream today

with my friend, Lisa, and her two kids.

(Thank you, Lisa)

It’s hard to relax sometimes when Tess goes out

because it’s unpredictable how she will do.

You just never know if something will bother her

in some way we can’t imagine,

and the play date will need to end, and quickly.

Some of my friends understand this,

and are willing to be co-facilitators in her journey,

like Lisa and Andrea and Missy and Kate and

Nancy and Kim and Maxine and Amy and Mary and more.

I never understood “it takes a village” more than I do now, truly.

A photo of Tess as a bold warrior that Lisa took

made me recognize that the story

I have told myself about Tess may no longer serve her,

that a different story is needed.

I’ve been telling a “Tess is broken story”

and Tess has been telling an “I am awesome” story.

Tess was diagnosed with Autism on June 19, 2012. We told her the diagnosis on July 24. It was a lovely, quiet conversation on the front porch. She was delighted to learn that Albert Einstein and Joseph Cornell and Isaac Newton and Wassily Kandinsky and Lewis Carroll and Glenn Gould all had Autism. Especially Einstein, as she loves him. And I think she was relieved, deep inside, to know there is a reason she feels different. We explained it as different operating systems (like PC and Mac) and framed it as a great thing, with challenges. I felt really happy about how it went.

And I love that she loves herself.

When she was first put on medication, something we pushed back against for a long time, I was shocked by the medication first prescribed. It was a medication, as I found out by looking it up (on Google, of course), that is used for schizophrenia and bipolar disorder and also for children with autism. While I had been silently diagnosing Tess with bipolar disorder or something like that for years, to see that imprint on a pill bottle was shocking.

I contacted my friend Catherine who does a lot of work with people with autism and she told me this story. She said, “I understand that that’s shocking, and yet a friend of mine who has been diagnosed for thirty years with Asperger’s takes that same medication and he said it’s the only thing of all the medications he’s ever used that has helped relieve his sense of panic, which looks a lot like rage to other people.”

In that moment, an enormous swell of compassion for Tess opened up in me beyond the frustration, the awful frustration that I had felt with her fits and her thunderstorms and her screaming for hours on end. All of that dropped away when I recognized that what I had seen as rage for all those years was actually panic.

I knew in my heart that all those times when things felt so unapproachable and so horrible, this was a small human being completely panicked by the world around her, not understanding it. I could feel my whole body open up in understanding. That if I could help her minimize that panic I could also minimize my own.

I’m only now becoming clear about my role in this. I’m only now able to write in some small way about the anguish associated with those years of screaming in our household. I think I, too, wondered what part we were playing in all that. Did I want others to know what kind of hell we were living in and through? Maybe not. No.

Mostly I tell myself I hesitate to write about this because I don’t want Tess to read it in thirty years and think she was a problem, that she was a burden, because I’ve never learned so much through this experience.

And so when you’re reading this, Tessie, I want you to know this above all: I love you. Everything we went through together, we went through together. I think you’re amazing. I think you are brilliant. I think you’re so funny and I love you with all my heart just as I love Emma with all my heart. So if you’re reading this as an adult, Tess, I hope you’re reading it with love in your heart and the knowing that you’re amazing just as you are—there is nothing, nothing I would change about you, Scout.

I haven’t written about this before because I didn’t know how to, but I do know that when I open up space to tell these stories, so many other parents come forward and say, “There’s a secret in my house. I don’t know how to talk about it.”

We all have layers and layers of love and difficulty and hate and fear. Sometimes it feels if we tell people about those we’re just opening a vein to the air, like there’s a tooth that has a cavity and when the air hits it, it shocks our whole system. I think if we can walk into those moments, into those exposed nerves, we can actually learn from them, but only if we can walk into them without judgment.

There is no shame in being fully human. There is no shame in doing the best that you can at the moment, in the moment. And in doing something different when things change, when you learn more, when you get the diagnosis. There is no shame in understanding that as parents we are fully flawed and that we do the best we can in the moment for that child. There is no shame in recognizing, as my friend Tamara told me, that the decision you are making in this moment is not the last decision you will ever make.

This is my map of the unknown. I have this diagnosis, I have this child in front of me and together we’re trying to map our way into what this means for us and for her. This is not a completed journey. None of them are.

Love what will be: What is, and is undeniable, is not the only thing that can be. We can choose the story of whole.

(excerpted from my recent book, The Geography of Loss)