Back into the woods...

A friend stopped by this week to borrow our double stroller, darling new baby in tow. They are headed to North Carolina for a Bluegrass Festival, to enjoy a long, soul stirring weekend of music and family. We had the usual conversation about feeding and sleeping until I made the unfortunate mistake of asking when she was going back to work. 

If there is ever a time when mothers' faces look exactly the same, it is when they are too near to the end of that precious allotment of time with their newborn. It is an expression that is full of duty and longing, knowledge of what we want and what must be and the difference between them. It moves across our faces and clouds our eyes. And we keep it like a secret because we don’t want to betray ourselves, our gender, by talking about it too much. Because we appreciate our employment, our offices and responsibilities. Our minds being needed elsewhere.

This is not an essay about one or the other, and certainly not one versus the other. It is about the emotions of both and the burden of choice. I have read so many of the former kind- printed only to polarize. It is hard for me to believe any of them were written by mothers, who understand with the rawest of senses what it is to have your mind in one place and your heart in another. This is what it is like for our kind. We are given windowless corners to contemplate the choice between two things, neither of them what we really want.

I remember it so well: how you will dread that slow walk back through the door of your old life, the return to your desk and your files. Your heart will race and sweat will break. Of course it will! You aren't the same in form or function, a stranger within yourself. Your body, your clothes, your posture, your hunger. You won’t shake it: the feeling that you are missing something important.  

Try to be still if you can. Try to see beyond this countdown. Someone has probably told you that it is the quality of the time and not the quantity that matters, and they are right. Your sweet baby will not remember the minutes that ticked by so fast, but she will remember what you did with them when you were together. Glistening bubbles you blew into the wide open of summer, the way you look at her when you sing happy birthday, something as simple as shoes and socks in the morning, inconsequential routines like silver cups you fill with joy, shaping who she becomes.

I have been listening to music myself these days, hearing the voices and reading the words of remarkable women who came before me, mothers and martyrs, philosophers and philanthropists. They all seem to whisper the same refrain: There is only one choice, only one way to be and only one person to be it for: You.

I wish us all the strength to go fearlessly into the woods, the ability to learn what we can from the music and the mountains, and faith in this: there is no right or wrong place to be, no end to whatever amount of minutes we think we have left, no use in worrying, doubting. We are good mothers. We will raise, rear, teach, sacrifice, love deeper and stronger than we ever thought possible and, eventually, we will forgive ourselves for the time we never lost.

SW 7023: Requisite Gray

We had a guest speaker this morning, a man who spent two decades as an attorney until he could no longer ignore that he was being called to the Lord. He spoke of the challenges of seminary school. Many things you might expect, but he took a moment to reflect upon humanity. He said that our culture has a way of driving people inward, compelling us to be proud and competitive, and that this is the antithesis of what we should be doing: exposing ourselves, living vulnerably, letting our community embrace and fortify us. So I will do that; tell a story about a week whose hours passed anxiously and left me feeling as though I woke up somewhere I had not intended to be.

It began with a sentence I read a year ago:

63% of Teens with Aspergers and High-functioning Autism are bullied; they are 50% more likely to demonstrate suicidal ideation and 28 times more likely to attempt suicide.

I wish I could unlearn this. It doesn’t loom, not exactly. It is more like a dark cat that saunters through our weaker moments. A pause, a glance, a reminder. It takes my breath away. But a pause is just that and life resumes its normal speed, and the creature wanders away…

I don’t think about these numbers more than I should, more than any parent in our situation would. I don’t think about them at all when it is bright and sunny and we’ve had a great week at school. But the weather turned cold and dull last Sunday and I knew they would come creeping through. Feelings of distance and uncertainty followed me around the rooms of our house where we were stranded inside, looking out the windows, waiting. I tried to find my way out with friends, but the air was stifled, I couldn't connect. It is hard for me to keep up with conversations about home décor and crock pot recipes, when my mind is suspended elsewhere: Who do I need to speak to next, are we out of intake? Has our case manager been assigned? What is the next step, what’s working, what’s not working, the ABA bill was how much this month? I am a mouse on a wheel, spinning in circles, desperate for answers. I know I need this, camaraderie outside the world of special needs. And I remember being there, lost in a Color Book. Can’t I go back? Paint is important. I believe that. Don’t I?

It rained all the way home.

Tuesday was our parent support meeting. The woman that leads the group is the mother of a kind and beautiful 9 year old girl. This has been a big month for them: Georgia legislators pushed through the bill, named for her daughter, which will require insurance companies in the state to cover autism therapy interventions for preschool age children. They have improved the lives and the futures of no less than 32,000 families. That was last week. This week the same girl was bullied by some kids at her school. Because she has autism and an Instagram account. The sentence purrs and the week moves slowly.

Friday I went to the school to have lunch with my daughter and a nice-enough boy sat next to us and opened his lunchbox. He looked at me and reported: “She has to ask the teacher to help her play with people at recess and if they don’t want to play with her she cries. She cries in music, too. She puts her hands over her ears and cries and cries and cries.” And then he turned back to his lunch and went on about his ham and cheese. And the numbers rose out of nowhere, circled my legs, told me to get her out of there, take her home to where it is safe and dry and there’s no one to tally up what behaviors are inadequate, unacceptable.

I should have told him about last year, how much better we are now, how much progress has been made. I should have explained that the music hurts her, like needles in her ears. She told me once it feels like it is squeezing her brain. I should have done sensitivity training with the classroom. Read them a book that explains what a sensory processing disorder is and how a perfectly lovely day can be ruined by escalators or polyester or people singing in unison.  I should have bought her those headphones.

I am angry. With the boy and the cat and everything that is easier than this. I called my mother and got a pep talk. Everyone has unshared problems. It is all relative. Keep your chin up.

Saturday: Dog grooming day. The clippers hum brilliantly and the fur falls off in downy clouds. It’s the closest thing I have to a Zen garden. I was covered in hair when I finally stood up an hour later. Our toddler had been playing with the tufts, chasing them as they blew haplessly around on the porch, so I took him upstairs to shower with me. There we were, standing under the water, and he was laughing and laughing and laughing. And I could feel it: the week and the numbers and the words breaking apart into a collection of sounds and shapes that don’t mean anything without knowing what time will make of them. I see my son’s smiling face as he looks up toward the pressure and warmth of the shower. He is perfect, beautiful, happy.  I think: how well we are represented by the person we become when we quietly let go of superstition and the things that keep us separated and hold tightly to what is real and binding. We are more than pieces of life ambling through the weeks in a year; we are parts of a whole. And special needs are more than headphones and tears at recess, they are the landmarks of parenthood, of family, humanity. I pick my little boy up and hold him. The water is hot and wonderful. I could be melting.

I hear my daughters in the room next door, having a very neurotypical conversation about kittens and bracelets and bugs in the yard. The playground is miles away and autism is a small box filled with six letters and the memories we are learning from. I’m wrapping it up for you, our gift, our special needs. I don’t know what they will mean to you but I know they will be entirely relative.

It is important, all of it. Colors worth sharing.

The Loquat Climber

There's a tree in our old neighborhood that my husband pointed out on a walk once. Years ago, someone nailed a sign to it. “No Trespassing”, most likely, but you can barely read it. The tree has grown up and around the sign such that today, only a few black letters are visible beyond the gnarled and knobby bark. How the steely edges of that yellow sign must have dug and cut into its proud trunk along the way. I think about that tree sometimes when I think about our hardships and the things of this world that are wont to undo us; if I can just keep growing, if I can embrace this with all my might, if I can twist this into becoming part of us, and not the other way around…

It was exactly a year ago that I answered the phone and listened intently as a nice young woman with a soft voice explained the tests, the results, and what our next steps were to be. And there we were in that forest, the words AUTISM SPECTRUM DISORDER on a square metal sign being nailed to us, suddenly aware of a new reality. Dates were discussed, an IEP meeting was scheduled. “She’s going to do great things” she said, “She’s going to be just fine”.

And she is. I think. I don’t know. Autism is a wild and lonely predicament. It is energy and fear, tunneled focus and aimless wandering. It is my sweet and precious child running and running in circles, over and over again and again. But it is other things too. It is patterns and shapes and the ability to grasp new concepts with little to no explanation beyond the fact of a rule: Qu says “Kwa”. And just like that she could read and make tigers out of tangrams. So I know we are headed somewhere. There’s direction, there’s purpose, a future. But who she is can feel like a secret sometimes, kept even from me. There was a summer that I kept losing her. She was so quiet that year. She would be next to me and I would look up and she would be gone. I would tear through the house in a panic and find her, every time, perched like a tiny bird in our Loquat tree, eating the sweet summer fruit.

It is right out of life’s lesson book: how afraid you can be of words, how they can make your stomach turn, trap you in one fearful, visceral moment, the air around you tight and thick with worry. And all it takes is learning, accepting. A deep breath: It’s going to be okay.

So much has changed in just a year. Therapy, integration. Our expectations. Our degree of neurotypical-ness. We have moved away from the silence and the Loquat tree and into something else that, quite honestly, I am too deep into to speak about intelligently. We are growing though, finding our way around this. What we want for her seems so easy: to hear music without feeling scared, to speak to her peers without feeling overwhelmed and out of place, to move from one thing to the next without confusion. To see and be seen, without the chaos of sound and sense and the volume of human dynamic forcing her back into herself.  

We are a young tree now. The sign hangs bright and obvious. Our trunk has met its edges and it is digging in. It hurts sometimes. But the sign is small and we are growing. Winter has passed and shoots of green emerge from our fingertips and turn up and toward the light, like little gifts opening to the sun.

It’s going to be okay.