Tidings of Comfort and Joy

The first time she ever talked to me, really talked to me, was from under the covers, in the midst of our bedtime ritual. Hairwashing and teethbrushing and pajamas and stories. Bantering and bargaining with her sister. She started to sing a Christmas song but the words were her own. She was using the holiday melody to help move her thoughts, which so often get stuck inside the complicated gears of her mind, to tell me that she loved me and wanted me to stay with her. And for the first time in 4 years I felt noticed, needed.

Autism has many tells. Sensory sensitivities and rigid thought patterns. Self-stimulating behaviors, repetitiveness, social delays, gastrointestinal issues and sleep disorders. We see these in varying degrees on a daily basis but, thankfully, sleep is not a problem for our eldest daughter. She goes to bed relatively easily and would sleep soundly until late morning everyday if it weren’t for the clamor of siblings.

'Thankfully' because bedtime in our home is essentially a series of battles fought upstairs and down. My husband and I become negotiators, defenders of "Eight PM", explaining the meaning and importance of sleep to three small people who want nothing to do with it. It is like this for the better part of an hour; pure folly. But once everything that needs to be cleaned has been cleaned, once the last bottle has been served and the last story read, once everyone has found their usual place, surrounded by their soft items of comfort; a quiet settles over our home.

They often fall asleep in our bed. It has become our ace in the hole when standard practice fails: the offer to sleep in our room. They follow the same routines, but then crawl up and into our bed, bury themselves in the layers of pillows, sheets, and comforter. Cotton and down. Bliss.

They settle quickly this way. The happiness of this reward must be overwhelming and they are a precious mess of dangling arms and legs in no time. It is the perfect ending to a typically long and wonderful day, filled with the big emotions that characterize motherhood’s highs and lows and in-betweens.

Hours later, wrapped loosely around us, we carry them to their room and plant them in the coolness of their unopened beds. Their breathing is heavy and reliable. The same. You couldn’t tell neurotypical from anything. Autism is nowhere to be found.

I take great comfort in this. Sleep is the great equalizer. On good days it is the peace she deserves. On bad days, it is the reminder that we get to start over tomorrow, that change and adjustments are possible. When she sleeps, her body is still and calm and full of rich and vibrant dreams. Nothing is being measured or recorded. No prompting for attention or eye contact. No 3 part directions to follow. When she sleeps I imagine her taking apart the confusing structure of her time in our world and piecing it all back together in a shape that makes more sense. She’s just like anyone else when she is sleeping, no tics or tells. No IEPs or 504s, no social goals or gaps to close. Indiscernible.

And I am just her mother, without concern or special needs to attend to. Without the weight of disorder. I get to remember what it is to just love her, simply and beautifully, not because of or in spite of. Just: love her. For who she is and for who I am. A mother, a daughter, a wife, a sister, a woman, a girl…

Just people, navigating a vast and often perplexing world, trying to pinpoint what is positive and meaningful, trying to keep these things whole even as we acclimate to the tepid waters of disability. Trying to construct something useful with the pieces that don’t quite fit. Taking comfort in the hours of rest that are promised when the sun goes down, our daily bread, our dependence on tomorrow and another chance to take a few steps forward.

Mountains and Molehills

This has been a hard one to pin down. And I’m still not sure my head is wrapped around it the right way. It is about too many things…

It is about my unreliable capability; the things I can do in such exhaustive detail but then forget about the groceries in the car.

It is about my grandfather; the son he disinherited and the daughter he did not. A choice that broke apart our family, made strangers of cousins. The answers we’ll never have and questions that won’t go away. The distance between people that swells and shrinks in the most awesome and tragic of ways.

It is about our relative anguish.

It is about my children, a pile of arms and legs, asleep in our bed after a day at the beach. Pink and sandy, overtaken by that particular kind of body to bone tiredness.

It is about swimming lessons and this feeling that we exist at the deep end of everything; day in and day out, holding our breath and coming up for air again and again, the joy and the mystery of those eerie underwater sounds as we bounce back to the safety and certainty of the surface.

But mainly, mostly, it is about parenting, from the bottom up, and what I wish I would have known about having more than one child.

There was doubt going into it: that you might not be able to love the others as much as the first. But that instantly eased at your introduction, those tiny features and fingers, the cries and the stillness, the routine beginning again. There was more than enough, there was plenty.

Until it presents itself: the one who sleeps soundly and the one who frets and twists. The one who eats everything and one who only eats bananas. The one who is cautious and the one who might, at any unsupervised moment, leap off the roof.

This is the best way I know to articulate it: the love itself, the emotion, is the same, but the amount you have to dispense, your endless reservoir, is tapped in different ways by each of them, and while the feelings are identical, you might have to give more or do more for one than the others and it can’t be predicted or helped or avoided. A morning that began simply comes to startling halt: an ultrasound or a checklist or a teacher or a specialist or your gut: something or someone tells you to sit down. It could be any assembly of strange and foreign words but this is what it means: one of them is going to need you noticeably more.

And with every response to that need comes the fear that you could lose one in pursuit of the other. Because you can’t, no one could, be wholly there for more than one person at a time.

Their needs become so strikingly different, so far from satisfaction by one stone. Some; desperate and deep. Expensive. Hours of therapy and time to be alone. Urgent reminders. Your shoes are on the wrong feet. Look at me, we have to go and your shoes; they are on the wrong feet. Tears. Others are superficial, precious, ridiculous. Cereal on a plate with a fork please and to be carried. Plastic necklaces and warmed juice. A book about cars, read a million times.

But if you put them on a scale they would weigh the same, I know. I can see it in their eyes whenever someone else takes precedence.

How can you balance the unbalanceable?

It is a process of shifting and repurposing. Just as we took apart the crib to reassemble it in another room, just as we painted the walls a soft pastel and hung something dear and meaningful above the rocking chair; we made room, we created their spaces, and each in its own way must be kept.

The puzzle of their needs, stacked and ordered by what seems the most important- best guesses because I don’t know the future. These decisions I wrestle with, terrifically heavy, bolstered by my sincere hope for the ideal outcome, but really I have no clue what I am doing.

It is entirely haphazard.

They are hungry, and they each want something different: graham crackers with honey, a bowl of salted popcorn, and two fat slices of cheese on a paper towel. Their needs will always be diverse and endearingly inconvenient, but as long as they sit together at our table and climb on top of each other on the sofa, as long as they race in and out of each other’s rooms, laughing and screaming, as long as they play and fight and speak and share, my best guess is that they already know someone needs more, and they accept it. No one is lost.

What I wish I would have known about having more than one child is that they are needed by each other as much as they need me, and that they understand this in profound and selfless ways.

This great disparity we perceive and fear is just another lesson in taking turns. A molehill.

Marriage and Football

There is little that can truly, realistically prepare you for marriage.

You may have had an inspired sermon during your ceremony, one with a more progressive minister who clued you in to the roller coaster and made a snappy joke about picking socks up off the floor. Maybe you grew up together and knew each other’s families and what you were getting yourself into, or perhaps you’re the owner of an old soul, wise beyond your age and richly aware of who you were and what you would be for one another. But even then: it is a contract made at the beginning of a million unknown circumstances, and difficult to believe anyone could be prepared for the fraught positions that time will inevitably move us into.

Our service was more traditional, but we did attend a series of premarital counseling sessions during which my husband’s eyes were mostly glassed over with boredom and I answered questions and shared anecdotes with zealous sincerity that I am sure annoyed everyone in the room. I was certain that my honesty and enthusiasm would yield maximum absorption of everything I needed to know about getting along, serving one another, giving in and holding fast, division of labor, how to talk about finances and how to be quiet when you want to scream. Etcetera etcetera.

It did not. There was, at the time, no hook to hang it on.

And then we were married. It was terrifying. I remember standing in front of a mirror in full bridal mode, searching the room for a sign, clinging desperately to borrowed and blue. But despite my hesitations, the music played and I walked down the aisle toward this man I loved but barely knew, said yes, ate some cake, and it was done.

The first two years were easy. It was like it had been. And then we decided to have children, and the roller coaster we’d avoided up to that point began to crank and churn, lift us off the ground and up to uneasy heights. But it isn't just children that changes the altitude, it’s thirtysomething. Marriage in your late 30’s, life in your late 30’s, is noticeably different from what I've lived through thus far. We are all making decisions and directional shifts that seem slight but have great consequences.  Choices as insignificant as what jokes I laugh at or what I wear to drop my kids off in the morning; little tells, rumors of what kind of person I am, what kind of parent, what kind of wife, what kind of friend.

Our 8^th anniversary is today. We will go somewhere and have salty margaritas and probably not do much reflecting outside the exchange of stories of his work, which is hearty right now, bitty funnies about the children, things they did or said while one of us was out. We’ll renew our promise not to drive foreign cars or want for more than a really great vacation every year. To keep life simple and removed from that place where material things start to matter. To fight less and love more and search until we find the humor in things.

My husband lives for football. Causing him continued emotional stress is the fact that, for the last 30 years and probably the next 50 the teams he claims his own are perennial underdogs. Try as they may to bolster their rosters and improve the coaching staff, little changes from year to year with the exception of the outing of a particularly bad kicker. In 2008 his Alma mater traveled upstate for their annual, scheduled beating by a division 1 powerhouse. This is not an epic tale about the little guy winning, it is, however, a glimpse into who this man is, sitting there in the stands as only the home side of the scoreboard climbed, chewing his nails and believing in that ever elusive game changing moment.  He insisted that we stay until the very last second of the game. Which we did. In the rain.

Our marriage is far from perfect; it is rife with things we knew better than to say or do. We are an only child and a youngest child, selfish and stubborn, undeniably me-oriented. We cannot help ourselves. But the inevitable challenges have somehow, miraculously, forced us further and deeper into this union. And I suppose that is what we hope for: losing seasons that become our proudest accomplishments. The foxholes we escape, by tooth and nail, bloody and beat. To be able to say: we survived. To weather this ever-changing climate, to grow and grow together. Separate but entangled in a present tense.

    

8 years later, I've grown some hooks. I’m starting to understand a little bit better about patience and service. I choose to be grateful today for this person whose nature is to see it through. I choose today to believe that while our direction may be altered by little decisions, our path is kept good and real by the disposition with which we accept failure, celebrate success, and enjoy waking up each day to this home and these children, this life; its many meaningful moments, often borne of distress and grief, that we have carved into something beautiful beyond words.

There is little that can truly, realistically prepare you for marriage. But a rainy football game might give you a hint.

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.

A Friendly Conversation

One of my mother’s best friends passed away recently. A friend who, before her move out west was a regular in our home, and as much a part of my life as any family friend could become, her history a part of our history. Her parents had been dear friends of my grandparents, the two families within walking distance on Vista Circle and, as the story goes, the young girls were forced to play together as children. But I’m sure that is where many stories like this begin as over the years not much in common became quite a bit in common.

My mother was fortunate to have several friendships like this one, or I suppose I should say—fortunate that this friendship was part of a larger friendship; several young girls who were introduced as children and cultivated relationships that would endure the rest of their lives.

Years ago, one of them found an old black and white photo of them all together, lined up for a photographer, perhaps at a spring birthday party, all in dresses, pretty white shoes and curls, holding hands and smiling. My mother has it framed and keeps it beside another picture of the same girls, some 50 years later, smiling the kind of smile you’d smile if you were with people you’d known and loved for that long. They have seen each other through marriage, children, loss of children, children never born. Some divorced. Several became widows. The emotions of a thousand independent milestones, shared among them all.

I wish for this kind of southern friendship, this ya-ya sisterhood, and I work to build it with the special people that I know. But as any woman in her 30's would surely agree, friendships are complicated. They all begin by happenstance: a few doors down on Vista Circle. Second encounters planned tenderly and purposefully, our willingness like a blessing whispered upon them, borne of great expectations for all the things we hope to be for one another.

Most don’t last like we hope they will. They remain important, historical: funny memories, valuable anecdotes. Maybe we don’t live near each other anymore, maybe she didn't speak the right words when she needed to, or maybe you didn't do the right thing when you should have. Maybe our points were too staggered on life’s timeline: You: married, kids, suburbia. Me: single in the city. These kinds of friendships leave quietly and unnoticed, like something you don’t even realize you've dropped.

But some of these friendships have an elastic quality, they are patient and resilient. They stretch across great distances and hold their breath underwater for a staggering amount of time, only to pop back up, buoyant and unchanged. These are great friendships. They are monumental, they have a complex past: stories of inconvenience and trust. They are hilarious and quirky, generous and forgiving. And they know everything about you.

Fortified and abandoned by the presence or absence of dialogue, even the greatest friendships are vulnerable in silence. So the next time we are seated together at the table while the children play peacefully in another room I will ask you about your day, about your family, your life in the city, about how you felt and what you did, where you came from and where you want to go…

And when we are 50 I hope someone takes a picture of us, telling our secrets, keeping the conversation.