Please read my latest piece in the Washington Post:
There are few feelings I can call up with as much clarity as I can the feelings I experienced the first time I read Mae’s first report that labels her as Autistic. There was almost a physical sensation of drowning, a kind of overwhelmed I had never experienced before. Sometimes even when we know things, seeing them written down gives them a weight they didn’t have when they were just thoughts. The tangible quality of the report meant that my suspicions were now confirmed and that there were experts who looked at my child and were naming those behaviors I had tried desperately to ignore.
It has been seven years since I first held that report, seven years since I had the feeling that life would never feel normal again, seven years since I joined the club of Autism families, seven years since I learned that the diagnosis is the first and hardest step. Recently, we have started seeing a new neurologist. After several years of taking a break from the constant doctor and therapy appointments, we are back at it. As I sat in her office last week and she outlined for me the referrals and the tests that we would be doing over the next few months. I found myself almost moving back in time. It was as if, it was 2011 or 2012, years consumed entirely by Autism, hand-wringing over medical bills and watching my child for any sign of improvement to justify the fact that Autism had taken every aspect of our life hostage. I worried as I sat in the doctor’s office last week if it is possible to do both: can we manage the numerous appointments and therapies and still have a normal life?
I left the appointment, exhausted and fragile as if all the weight of the original report had rushed back into my life. These last few years I have convinced myself that I am completely at ease with my child’s Autism, I was reminded last week that I will never be. I can easily love her for who she is. I no longer wait to hear her voice, or expect that one day she will wake up and want to live in my world, but I have found this peace because I stopped asking questions or looking for answers. However, as she gets older it is time to focus again on all the ways she isn’t who we imagined she would be. We will do a series of tests, we will go back to the days of fighting with the insurance company, sitting in therapists’ and doctors’ offices who try to provide answers to questions none of us can even name.
There is a part of me that questions why we should even bother, a part that already wishes we had never met this new doctor or initiated this whole chapter. However, there is another part of me that knows that this discomfort I feel is all just a part of what it means to be Mae’s mother. It is my job to look for answers, just as it is my job to teach her brothers to never take anything for granted.
I think people assume that the hardest parts of having an Autistic child are the parts they can see. The tantrums, the lack of communication, the loss of freedoms, but they are wrong. The hardest part is the feeling that there are always more questions, there are always more ways in which you could do better. The hardest part is reminding yourself that your job is just to love your kid and keep putting one foot in front of the other.
The basic goodness of humanity is at the heart of Buddhism. The idea that all people are basically good, regardless of their behavior is important to developing compassion. When people do terrible things they do them out of confusion and ignorance. Ignorance is not defined as stupidity but as ignoring, or not seeing. In the week since the election I have thought a lot about basic goodness. It sounds like a simple concept but when you really start to apply it to people with whom you disagree on what is practically a cellular level it can be challenging.
When I ask myself if I think Donald Trump or Mike Pence is basically good, a riot breaks out in my brain. I find them and virtually everything on which they built their campaign completely repellant. It is a scary thing to doubt the basic goodness of your president; it is a feeling of vulnerability and fragility that I have never experienced before. The sadness is most similar to a broken heart in its betrayal and shock. There has also been a sense that something was taken from me. I wasn’t an overly enthusiastic Clinton supporter but I did think that she would keep our country moving in the general direction of decency that would allow people of all colors, creeds and abilities access to a basic level of education and healthcare befitting a democratic superpower. Now, I am not sure if those things are true anymore.
When my daughter woke up on Wednesday morning I was awfully grateful that she has non-verbal Autism. She came skipping into the kitchen grinning and clapping, totally unconcerned about our now very uncertain future. It was not so easy when her brothers came down, after months of telling them that Trump was unfit to lead, and that he had no idea what he was doing. I found myself singing how a bill becomes a law from Schoolhouse Rock and explaining the checks and balances of government. When the kids left for school I cleaned my house, listened to jazz and classical music, and wept. I thought of how certain everything had seemed just a few days before and even though nothing was different everything was different.
In reality this is always true, in the blink of an eye your life can shift completely. Usually when it happens it is specific to your family or your work. A death, a new job, falling in love or out of love, built in to our lives is a baseline level of uncertainty. This election however, was a shared experience. It was a shared sense of disbelief and sadness, of disconnection from your neighbors, and disbelief that they don’t see or want what I see and want. It was an awakening. Any time we get too comfortable, any time we start to take things for granted, it is inevitable that we will get shaken out of it. We can respond with anger and disbelief that our dream has been interrupted or we can respond with action.
I have decided to respond by appreciating the things I took for granted. I will give to NPR and Planned Parenthood. I will renew my subscriptions to the newspapers and magazines that will provide us with real information about our new leadership. I will educate myself on things like the Voting Rights Act and support places like the Southern Poverty Law Center. If Hillary had won I would have felt validated and safe, not activated and alert. I would keep on tending my own garden, raising my kids, volunteering in my community, being polite, and that would have felt like enough.
But that isn’t what happened, and I don’t feel safe. I feel exposed and uncertain but I also feel energized. I know lots of women in my mother’s generation and older who spent their lives fighting for equality, for basic human rights for all people. I never felt the need to pick up their fight until now. I am hoping to get to a place where I trust the basic goodness of our leadership, but if I don’t, I have been reminded of an important lesson. Nothing is certain. The only thing I can control is my response, which in this case is to fight for the things and people I believe in and to teach my children to do the same.
I think a lot about memory. As I get older I remember details or the way something felt, rather than events. I can’t remember the name of my second grade teacher but I remember exactly what the hooks looked like where we hung our jackets. It was a small hallway leading into our classroom, with hooks on either side. There was a window at one end and when the sun would shine in you could see all the dust moving in the air. I liked that little room, the wood of the floor worn down by many years of kids like me, the hooks with our names written underneath, a spot for everyone. The only thing I really remember about that school is the coat room and it’s hooks, and the way the sun would slice into the space lighting up a small section of busy dust .
Memory is all about connections, fragments of days and events stick around in my head, some feel random like the coat room, some are sweet like the memory of the day Colin proposed or the days when we met our kids. Some are still very sharp and real like the hours we spent in waiting rooms of doctors as we slowly unraveled Mae’s diagnosis of Autism. I can remember both the feeling and the details of these days with incredible clarity; the emotion of them accompanies the home movie as it plays in my head. Sometimes it can be like reliving the experience, both the happy tears and the sad ones.
I am always interested in how memory affects behavior. My sons don’t like getting in trouble because they remember how rotten they feel when they have done something they shouldn’t. They are motivated to make choices that keep them out of trouble by the memory of a feeling. I can’t really eat sugar any more, not because I don’t like it but because I remember that it makes me feel awful. When I am struggling to motivate myself to go running or sit for meditation I remind myself how good it felt the day before. Memory is a powerful force in everything I do.
I am always interested in the things Mae remembers. Does she remember the feeling of the day we adopted her or of being on the airplane? Does she remember the feeling of all of the operations and doctors visits that filled our days when we first got home from China? I remember the sadness, exhaustion, and helplessness of them more than I remember the names of the various doctors and all their grim reports. I always wonder if she remembers them at all.
She has a very clear memory for the things that matter to her, she always knows where her favorite snacks are, and a stash of plastic for her to play with. She remembers where we keep her swimsuit and is more likely to find the ID card for the pool than I am. She pays close attention to the things she cares about, and ignores all the rest. She is my child and I think that she is brilliant; one of the ways I convince other people of this is using her memory as an example. She can’t speak but her very good memory is proof that she can learn, and I am always quick to point it out.
When you live with someone whose brain is largely a mystery, memory is proof of connections she can’t verbalize but that clearly exist. As I age, my memory is changing. It requires more effort to hold on to the details. I feel like my brain has become one of those vests that people use for fly fishing. It is filled with pockets of information, song lyrics, old phone numbers, directions to homes I don’t live in anymore, passages from books long since passed on to friends. My sons are always interested in my memories of life when I was their age, what was it like for me to be 11 or 12, they are often frustrated when I describe the memory of a feeling instead of telling a story.
Most interestingly is how we can change the role that memories play. I remember that first crazy year after Mae’s diagnosis as a series of events, but also now in retrospect as my own personal endless Ironman. My memories of having survived it are something I call on frequently to remind myself that nothing is impossible. I have started to think of my memories like money in the bank, I can call on them when needed to provide perspective, motivation or to save me from myself. I have also learned through my meditation practice that I have a tendency to get stuck in my own memories. I have learned by watching my own mind that I can replay or relive events long since over and still feel the irritation or sadness that accompanied them. It is a habit that does not serve me well. Why not revisit the happy memories instead of the ones that make my blood boil? Your memory can keep you from making the same mistakes twice and encourage you to repeat things that have worked in the past, but the best idea is to invest yourself and your attention in your present, because for better or worse that is where your life is actually happening.
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.
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.