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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.
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.
Recently, we have had a few teachable moments with the boys. We have been faced with situations where they have broken a rule or abused a privilege, but rather than punish them, we have given them the opportunity to repair the damage or remediate other consequences of their behavior. In both instances, once their relief at not being in trouble subsided, they rose to the occasion and demonstrated maturity that impressed us and, more importantly, themselves.
The whole experience got me thinking about teachable moments. The writer Annie Lamott describes how she had to retrain her inner voice from one that would order her to sit down and write, using phrases like “sit your lazy ass in this chair” to one more like a gentle maternal coaxing “just try and write one paragraph you clever girl.” Clearly, one is more pleasant and arguably more effective. When we manage ourselves and our relationships skillfully we are better able to identify teachable moments.
Even our bodies have teachable moments. When someone is training for an Ironman or marathon, that is not the time to start an aggressive new yoga regime. We will not be teaching our body anything; we will just be stressing it even more. When training for an event, most bodies need days of rest and long slow stretches, extended hip openers and chest openers with lots of support. Learning to listen to the cues our body is giving us is one of the most important steps to lasting wellness.
Often teachable moments rise out of unpleasant experiences, but that isn’t always the case. Remembering how much better we feel after enough sleep can mean that when we are tempted to stay up a little too late, we remind ourselves of that good feeling. A friend and I were joking recently after a huge dinner that our diets would start Monday. Later when thinking about our conversation I realized that even that sort of habitual thinking isn’t healthy. Even though we were both kidding around it is that “I will start tomorrow” mentality that prevents us from doing so many things. Maybe the teachable moment there is just noticing the habit. Every day there are opportunities to be accountable for our behavior, to wonder whether we could have handled interactions more skillfully, with more insight or compassion for ourselves or others. I am so completely convinced that we learn more when the methods are loving and patient than swift and punitive. I am going to start paying more attention to the teachable moments in my every day. I know they are there and there is an awful lot to learn.
Recently, my very dear friend Ruth Nemzoff pointed out to me that my recipes were pretty complicated, and had a lot of steps. Which seemed impractical given how busy I am and how many children I have. She is absolutely right of course. I realized that part of why I love cooking and experimenting in the kitchen is that I feel like I am doing something for my family but I don’t actually have to be with them. The kids can be running through the kitchen, and I can absolutely guiltlessly suggest that they play other places because I am. after all cooking for them. This recipe is actually not that time consuming if you use store bought gnocchi. Gnocchi is kind of fun to make especially if complicated cooking projects are an escape of sorts which clearly they are for me.
4 Russet potatoes
1 ½ cups Gluten Free flour (you can use regular, I like Pamela’s GF)
1 Tbsp Olive Oil
Salt and Pepper to taste
Start by baking the potatoes until they are soft to the touch. About an hour at 400 should do the job, slice them to cool and set them aside. Boil a large pot of water, about as much water as you would use to make any other kind of pasta (about 6 cups). Peel the potatoes while they are still warm, if they cool down too much they are harder to manipulate. I use the hand mixer to mash them after I have taken off the skins. Once they are mashed add the olive oil,salt and pepper and flour in ¼ cup intervals. I like to do this with my hands. When the mixture starts to get really doughy roll it out on a floured surface. Make 1 or 2 long snakes of dough and cut them every inch. The pieces should be bite sized, and will expand a bit when cooked. Lay out parchment paper, you will place the gnocchi on the parchment paper to cool after you have cooked it. Don’t let them touch or they will stick together. Throw your gnocchi into the boiling water, they are done when they float to the top. Gnocchi freezes well, so when I make it I make a few batches. Let them cool and then add whatever sauce you want.
Pete’s grilled pepper red sauce
My son Pete loves pasta, and this sauce is his creation.
6 grilled tomatoes (depending on size, Heirloom or even Roma)
2 grilled red peppers
2 Tbsp Olive Oil
1-2 cloves garlic
Salt and Pepper to taste
¼-½ cup water
I love the grilled vegetables of summer, we have even grilled peaches! I served this with asparagus that I just threw straight on the grill and drizzled olive oil and lemon pepper on after they had cooked. To make the sauce, just throw the tomatoes and the peppers straight on the grill. When they start to soften and blacken very slightly, pull them off. Throw them into a bowl with the olive oil, and crushed garlic, add a ¼ cup of water. You can add more as needed. Again I used the hand mixer to blend it all together, adding salt and pepper to taste at the end. Garnish with fresh basil. The sauce is rich but if you prefer it thinner add more water, this sauce also freezes very well.