Please read my most recent post about raising boys on Medium.com
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.
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.
Last weekend, I was talking to a friend about yoga and meditation and she told me she didn’t feel like she was good at either because she could never “clear her mind.” It is a fact that we all believe that we are the proud owner of the world’s busiest mind. Every one of us is convinced that no one’s head or life is as busy as our own. However, “clearing one’s mind” is a common, but impossible directive.
In a yoga practice, one’s attention should be primarily with the breath, and then, with where one’s body is in space. When you look down at your feet and see that you desperately need a pedicure, note it. But, you can’t do anything about it in the middle of a yoga class so go back to your breath. It is not about “clearing one’s mind” at all, it is about returning your attention to where your body is, neither in the future or the past but right there on your mat.
The same is true with meditation. There is no better way to bring your “to-do” list front and center than to try and not to think about it. In meditation, we try to just watch our thoughts. Knowing that we are safely seated somewhere, we can just observe our chaotic mind, as if we were at the top of a tall building looking down on a busy street. If you find yourself so swept up in a thought or fantasy that you are no longer in the present moment, you are either in an imaginary future or a completed past.
When we meditate we are actively watching our thoughts and when they move away from the present moment we notice it by labeling it “thinking” and then return our attention to the present moment. It may be that the labeling “thinking” has made students believe that they should not be thinking, that they are chasing a state of thoughtless bliss. This is not the case at all. Thinking in and of itself is not a bad thing. Meditation is an opportunity to sit quietly and pay attention to the direction your mind is going. Can you gently steer your mind and attention back to the present? When you notice your mind has wandered, label it “thinking” and return your attention to your breath, or the sound of your feet as you walk, or your body in the water as you swim. We are practicing paying attention, which doesn’t involve having no thoughts. It means investing all our attention in what we are doing.
Just as we can place our feet on our mats, or sit on a cushion, we can also learn to place our attention where our body is, and try and develop some clarity about where our mind is going. If your habit is to put your body somewhere and let your mind race anxiously into the future or lope around in the past, then ask yourself if that is really serving you. Isn’t it better to try and keep our attention in the one place where we can actually effect change, which is the present moment?
Whether you are practicing yoga, going for a walk, or eating a meal, see if you can’t try to keep your attention on what you are doing, or at least notice when it has shifted and bring it back. It’s valuable to have clarity about where our thoughts go, but clarity is not developed by pushing our thoughts into some sort of corner where we pretend to ignore them in search of a “clear mind.” Clarity comes from watching our thoughts with a generous and loving attitude towards ourselves and making every effort to let go of anything that doesn’t serve us.
It’s easier said than done, but like anything, it’s a habit we can develop, not a superpower that’s out of our reach.