Please read my latest piece in the Washington Post:
Very early on right after Mae was diagnosed I had a constant and overwhelming desire to try and fix Autism. I was convinced that there would be a doctor, a supplement, a therapy that would unlock the words from my child’s mouth. We traveled from New York to Boston consulting every expert we could. We tried every combination of nutrients and foods imaginable. Every conversation, every thought was consumed by the need for answers. I struggled at the time to reconcile this endless search with my Buddhist studies. Those studies told me to live in the moment, to be present with whatever arises, to learn to love what was right in front of me. I wasn’t sure how to align the need to have answers about my child’s condition and my belief that honest and loving acceptance of what is in front of you is the best way to live.
We don’t really understand acceptance in Western culture. Or at least I didn’t. I felt like accepting my daughter’s diagnosis was a kind of capitulation. Acceptance felt like giving up, so I resisted it. We spent every penny we had. We turned every meal into a therapeutic endeavor. We sued our school district so she could go to private school. We watched her like hawks waiting for evidence of improvement. Our sense of wellbeing was entirely wrapped up in whether or not Mae had a good day or a bad day, on whether or not she was “improving.”
After almost two years of battling with an enemy of our own making we couldn’t do it anymore. We had no more money for therapies. We were tired of meals whose success hinged on whether or not she sat and used a fork. We just wanted to enjoy our family again. So we stopped. Instead of trying to solve the “problem,” we worked on accepting our daughter for who she was. She stopped being a diagnosis and became our daughter again. It doesn’t mean we don’t work to make sure her life is filled with activities and people who nurture and care for her, or that we don’t high five her when she joins us at the table, or demand that she use her limited language skills whenever possible. We do all those things. It also doesn’t mean that I don’t occasionally get sad about the things she could be doing this summer if her brain were wired just a bit differently. I would be lying if I said I never think about it.
In our case, acceptance was not capitulation. It was actually a very conscious and loving gesture towards both ourselves and our child. Learning to accept her diagnosis and what it meant both for her and for us as a family liberated us from our own expectations. I have found that the more willing we are to accept the truth of difficult situations the more easily we can adapt to them. When we resisted the hard truths of Mae’s diagnosis by insisting we could fix it we were blind to what was really in front of us, which was a beautiful little girl with a twinkly smile and an awful lot to teach us.
Autism for me has a perfect black page-boy haircut, it has rounded cheeks and long eyelashes. Autism for me bounces in and out of rooms, ripping and twirling paper.
Autism never sleeps through the night
Autism means that my child cannot tell me if her stomach hurts
Autism has made me fierce and difficult in the eyes of many school administrators.
Autism means I have been changing diapers for more than a decade
Autism means I run a small home-based pharmacy
Autism doesn’t make me sad anymore although some days it makes me tired
Autism means I will never have an empty nest
Autism means nothing scares me except the day when I can no longer care for my child
All over this country parents go to bed at night knowing that there is no system to support their children as they age. April is Autism Awareness month, I am never unaware.
I would ask that if you really wanted to be aware of what it was like to have a child with Autism, look at your children, your beautiful, talented, amazing children and imagine what it would be like if you knew that the world had no place for them. Look at your baby, your toddler, your tween, maybe even your adult and imagine for a moment that without you they couldn’t survive. That is what it’s really like to be aware of Autism.
As school vacation ended this past week, I was desperate for my children to go back to school. When we have all been in the house for a little too long there is an itchy, restless feeling around the edges of everything they do. In my body it manifests as massive fatigue. When they were all home it felt like a huge effort to do anything, the second they left I found myself energized and able to address my to-do list.
I don’t like that itchy, cranky feeling, it feels like a lack of gratitude. Sitting in my warm safe house with my three kids and my loving husband and feeling unsatisfied seems fundamentally wrong. I know I only feel this way because I am desperate for us to return to the routine that comes with school and work. Even knowing that, I search for an antidote, I remind myself how lucky I am, I sit for meditation, or go for a run. Truly there is only one thing that really helps, and for me it is reflecting on the alternative.
Last New Year’s, Colin wasn’t feeling well. He was tired, stressed and his back hurt. In fairness, we are both tired and have been since Ben appeared in 2004, so when he complained of exhaustion, I ignored it. When he talked about his back hurting I told him to stretch, put your legs up the wall and breathe deeply. When he said he was going to see a doctor, I shrugged. The doctor ran a million tests and they were all inconclusive. Colin’s face was slowly turning gray but I couldn’t see it. I was too busy thinking about the details of our life. The kids’ schools, our leaky roof, our muddy driveway, my own aches, pains and frustrations. I was so engaged in our day-to-day that I wasn’t able to see that my husband was fading away. Or maybe I didn’t want to see it.
In February he had an angiogram, and they found and cleared a significant blockage, one they call the “widow-maker.” At the time I just focused on how lucky we were. I heaped praise on Colin for seeking out a second opinion. I talked about the miracles of medicine and joked that he had eaten his last cheeseburger. We have a habit in our family of turning difficult realities into punchlines and this was no different. He would joke that with his new “gear” as we referred to the stent that he was like a newborn; he could throw himself into bad habits with gusto. I would feign horror, knowing that we would find some easy middle ground.
It wasn’t until the end of this year that I really thought about how differently the story could have ended. There are many skilled practitioners of Buddhism who can find gratitude without thinking of what could have gone wrong. I am not one of them. As 2015 ended, I found myself thinking more and more about what could have happened, about my life without Colin. Not just the practical financial aspects, which would be grim at best, but also the impossible loneliness I would feel in his absence. When I find myself irritated by the hundreds of water glasses he manages to use and leave behind in a day, or the peanut butter with a knife sticking out left on the counter after lunch, or the fact he never quite remembers to close the fridge…. When I see those things and start to think to myself “what the ????” I think about the other ending we could have had to 2015, the ending where my husband got so gray that he disappeared altogether. When I think about that I don’t even see the water glasses or the peanut butter.
One of my favorite phrases in Buddhism is “skillful means.” It is used to describe the many different methods available to people as they search for truth. The longer you practice, the more clear and efficient your means become. It isn’t especially skillful to appreciate the life you have by imagining the worst case scenario. But for now it’s what i am working with. I cannot seem to learn the lesson enough times that the real treasures are hidden in the most ordinary days.
I am a polygamous parent. We all are to some degree. If you have more than one child you know they need different parenting styles and norms. In our case having two sons who are neurotypical or normal and one daughter who is severely autistic, we are almost constantly managing two distinct families. We are lucky in that our sons adore their sister and vice versa. Since the moment they left for sleepaway camp she has insisted on spending hours sitting in the car. Despite the fact that she can’t speak she understands that eventually that car will bring her back to her brothers wherever they may be.
As parents, the experience of two of our children leaving for a month is really strange. There is the constant and vague feeling that I have misplaced something. The chores are greatly diminished. Both the dryer and dishwasher must be secretly wondering why they are experiencing this reprieve from constant activity.
I miss my sons, but the opportunity to be just a special needs parent, to not have to toggle back and forth feels like a break. I can cater completely to Mae’s needs. I can sit with her in the car in the driveway, or hold her hand while she eats, or take her outside so she can tap and touch every surface of our deck. I can do all of this without feeling like somewhere a boy is bored or needs help with his homework. Our boys are safe and happy, camping and swimming off the coast of Maine, while we are able to live on Planet Mae and not let anybody down.
The hardest moments are when the boys have disputes that need settling or hurt feelings from an event at school. They will come rushing in the door, desperate to tell me their tales. If the timing is right and Mae is at ease, I can listen completely and offer advice or just my lap. If the timing is wrong and she is upset, they will strain to tell me their story over her wailing and I will strain to listen, with all of us unable to ignore the friction between the two worlds that coexist in our house.
Being a polygamous parent is hard. It involves managing different school systems and communities. It requires babysitters for family dinners or trips to the movies. The upside is that when I have the luxury of only parenting one child in her very specific way, it feels like a delicious holiday. If I was left with only one of the boys it would be excruciating; he would follow me around endlessly wanting me to fill the shoes of the brother who was away at camp. However, with Mae she is thrilled to have us live in her world, to have our house be quiet and predictable. It’s emptiness means more space for her to roam on her missions whose purpose is known only to her.
We will all be delighted to see the boys, and Mae more than any of us. She keeps going up to their room as if they are hiding under the bed or something. But in the meantime I will enjoy not having to change gears, I will live in Mae’s world with no sense that I am letting anyone down and it will be lovely.
When a house is filled with young children it vibrates with movement. Even when they are absent their clothes swirl in the dryer, their dog snores on the couch, their toys wait patiently on every available surface. I have found that it is easy to get caught up in the movement, particularly if both parents are working. There is always something to do: a meeting to attend, a room that needs picking up, an appointment that needs scheduling, cupcakes that need to be made…..The days seem to gain speed until all of a sudden they are years. I remember holding Benny once when he was small, it was two in the morning and he was on an elaborate sleep strike. It felt personal, as if his 8 or 9 week old self was deeply committed to disrupting my sleep, potentially forever. I was giving an internal finger to all those well meaning people who had looked at my newborn and said “enjoy it, it goes so fast…” Not at 2 in the morning it doesn’t…..
Of course, now I look at his long arms and legs, his eleven-year-old self, and it does seem to have gone by in a flash. Those two a.m. meetings of ours feel like yesterday, and another life all at the same time. A very wise friend said to me once after we had finished talking about how exhausted we were by our toddlers, “But this is the good stuff, when we put our children in bed at least we know where they are…” I hear that phrase so often in my head, “this is the good stuff.” she was right, this busy-ness, this intensity, this constant change, this is what a life is. The catch is, that we have learn to pay attention to it, we have to learn to slow down within the movement and the busy-ness to be able to really appreciate it.
In Buddhism it is an accepted principle that there are two realities or two truths. There is relative truth, which is what we think we see, the whirlwind of the every day, and there is absolute truth which is what exists underneath all of that. it is the reality that we and everyone we love are just temporary, existing for a short time in the same place. For me parenting was the first time I really thought about absolute truth. My own mortality and that of my children weighed on me. The thought of something bad happening to them makes me close my eyes and hold up my hands, just the thought of it inspires deep physical reactions. As the mother of a child who will probably never be able to live independently, my own mortality became even more of an obstacle. On more than one occasion I have thought to myself, I have to figure out how to live as long as she does so I can take care of her, she is 8 and I am 40….it’s unlikely I will live to 120.
The relative truth of parenting, the small successes and failures, “he sleeps through the night, and eats green vegetables,” give way to “he reads, and has friends.” He complains mercilessly about homework, doesn’t make a team, has his heart broken, each moment feels enormous and real, and defining while it’s happening. They should. This is the good stuff. The absolute truth as I experience it is within the relative truth: it is allowing each of those moments to really sink in. It is not trying either to hold on to them or to ignore them, but to be fully present with them. The absolute truth of my life exists in all of the relative details, in the way I make my bed, or the dinners we eat. The amount of attention and care that we bring to the ordinary is what makes it come alive.
As anyone who has been in a relationship for any length of time knows, there is a big difference between hearing and listening. In the early days of any relationship, romantic or otherwise, we listen very carefully to the other person when they speak. As we become more familiar with people we may hear them but not with the same attention. I can recall with incredible clarity what Colin and I talked about on our first date, despite the eagle-sized butterflies in my stomach. I was as present and aware of every detail of the day as I have ever been. If you asked me the details of a conversation from this past weekend I would have a harder time. It is not for lack of interest. I still think that at any given moment Colin is the most interesting person in the room, it’s just that familiarity makes it easy to confuse hearing and listening.
Hearing is what happens when I ask my children to empty the dishwasher and they don’t move. They have heard me…but they aren’t listening. Listening is what happens when you calmly tell them several hours later that ignoring my requests makes me feel rotten, and emptying the dishwasher and making beds is just being a part of the team. Listening makes change, but in our family for people to listen to each other, voices can’t be raised and eye contact is necessary. Yelling, snipping, or coming from a place of exasperation pretty much assures that no one in my house will listen to you.
Thich Nhat Hanh, a well known contemporary Buddhist scholar, talks about “listening deeply” or “listening skillfully.” These are practices that one develops through meditation. By learning to listen to the rhythms of our own mind we are better able to listen to other people. We learn how to listen by being quiet and practicing non-judgmental awareness of what comes up in our own minds. It is the same when we are talking to a friend, a stranger, a family member, we have to see that person as they are, not as we wish they were, not rush them through to express our opinion, or in the case of loved ones, without the layers of history between us.
Skillful listening is something we can all develop. At one time or another it has come naturally to us: a friend in crisis, a new love, a child’s first words, but then we relax back into hearing rather than listening. These days I am working on really listening deeply, giving those around me my total attention. When I listen with my whole heart I am a better wife, mother, or friend. Like any practice it starts by noticing when you aren’t doing it, and gently drawing yourself back into the present moment. Eventually it becomes easier, replacing the old habit of hearing, with a new habit of listening.
Recently, I attended a meeting of our local school board. They were getting together to discuss a projected budgetary shortfall and, as a new member of the school community, I am interested in learning more about how it all works. I introduced myself as a parent but didn’t indicate that I had a special needs child. Truthfully, it didn’t seem to me to be relevant; I was just a parent wanting what is best for her children. Although, as a special needs parent we aren’t allowed to think about “best.” By law, we are entitled to “appropriate” so the word “best” is far out of our reach. But, that wasn’t on my mind at all as I settled into my seat and made polite small talk with the woman next to me.
The budget conversation inevitably included discussion of special education. There was a moment when someone suggested that they used to keep a financial cushion because the boiler could explode. Now you had to maintain a cushion because you never know who could move into your district. This was followed by a comment from a school board member, “We have a $50,000 child we have never even met.” I guess she is referring to a child whose needs are so severe that they have an out-of-district placement. The district pays for the child to go to a school that can meet their needs since the district, for whatever reason, is unable to “appropriately” educate that child.
I didn’t say anything, my heart was beating too fast, my skin was too prickly and there were tears in my eyes and voice. What I would have liked to say is: “A $50,000 child you will never meet? This probably means that this child’s parents have never really met him or her either. They don’t know what their child’s favorite color is, or what they would like to be when they grow up. If a child’s needs are severe enough to be placed out of district, chances are that child will never be a grown up, but a child forever. I bet that child doesn’t speak, maybe isn’t mobile. These kids are unpredictable, don’t always sleep through the night, require a small army of specialists and doctors.”
As a special needs parent I often feel like we are taking more than our fair share. It is clear in the glares of airline passengers or even glances over magazines in doctors’ offices. I get it, my kid is ruining your peace and quiet. Special needs parents have to develop a thick skin. That’s been a little easier for us because Mae is totally unconcerned about whether or not someone wants to read quietly. If she wants to jump and sing at the top of her lungs, she will do so with abandon…It is her blessing and her curse.
Mae had a rough start to the week at school, prompting a staff member to say to Colin, “You are lucky she is cute.” Later, when he told me about it, we were laughing, “lucky she is cute? Or else what?”
When you have a special needs child, people say ridiculous things to you all time. My favorite is: “I don’t know how you do it.” As if there were some sort of roadside dropbox I wasn’t taking advantage of. She is my child. I don’t spend my days wishing I could find some reasonable alternative to being her mother.
So, I have been reminded yet again this week how important it is to watch our words, and to remember that you have no idea what someone’s story is just by looking at them. I don’t believe that any of these people meant to do any harm with their words. I also know that whatever people may see when they look at my child is different than what I see. She may be a budget line item to some, or a cute nuisance to others. To me she is magic and fierce. She has an amazing belly laugh and can jump higher than anyone in our family. I don’t know what her favorite color is, but I know she hates jeans. Chances are she will never be an astronaut, an actress, a fairy princess or a veterinarian, but she is my child and she always will be. It is a lesson to tread lightly on ground we have never walked. You never know when you could unwittingly cause pain.