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.
I have accepted that part of my role as a special needs parent is a heightened level of vigilance about every aspect of my child’s life. Her education, her health, her future all of these require virtually constant monitoring and attention from me. She doesn’t speak so there is a kind of forensic quality to my parenting. I am always studying her and trying to figure out what she needs now, ten minutes from now, one year from now, five years from now, and so on.
I realized recently that I had slipped into a sort of magical thinking. When I picture Mae as an adult she is the size of her 8 year old self, and I am 40. I have often joked that as she ages we will be some sort of strange version of Little Edie and Big Edie from Grey Gardens.
Even when I joke about it, I picture us as we are now but with grey hair and fatter. This is, of course, ridiculous. Mae will not be taller than I am, in fact they expect she will top out at around 5 feet tall. She is 48 pounds now and I can no longer comfortably lift her. She no longer fits in the grocery cart, and putting her into the jogger for weekly trips to the farmers market is nearing its end as well, as her long legs stretch almost to the ground.
So, I started to engage in a new kind of magical thinking. If I could acknowledge that I could not stop my own aging process, could I somehow keep her a child forever?
As we were nearing the end of her most recent doctor’s appointment, her team assembled in a small room as she ping pong balled around, walking on furniture, bunny hopping from wall to wall, seemingly oblivious to the fact that 6 adults were discussing her newest med change and all its repercussions. “I have just one last question,” I said, as if I were going to be asking something quick, something easy. I have adopted a breezy tone in my voice when I know I am about to say something unpopular. “I would like to talk about stopping puberty, I would like to talk about keeping her small.” No one responded initially; in fairness they may have been thrown off by my “just a quick thought” tone.
When her doctor did respond, his answer was thoughtful and kind. He pointed out that there are cognitive benefits to going through puberty, and that there were significant ethical discussions that would have to happen if we were to start messing with the natural course of her very normal physical development. Only a few days later an article appeared in the The New York Times addressing this very issue.
The children in the article were all immobilized by physical illness, but their parents were struggling with the same issues that I face every day. As their children age and their bodies grow, caring for them becomes more difficult.
We will age, our children will age, and neither of those things will make life easier for them or for us. So, now I am engaging in a new kind of magical thinking, thinking that shouldn’t feel like a lofty, crazy, hard-to-achieve thing.
What if I could age knowing that there was a safe, affordable, engaging environment for my child? What if instead of feeling like I had to outlive her to assure her safety I could rely on a well-organized, well-funded mental health system?
This shouldn’t feel like magical thinking. This should be a reality. We live in one of the wealthiest countries in the world, at a time when we understand more and more about the brain, and yet our system for people with special needs moves from education to adult day care. We can and should do much better. No one should have to rely on magical thinking when it comes to their child’s future.
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.