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.
Around the new year, there is always the discussion of resolutions and change. People set intentions and try, at least for a brief period of time, to be the best version of themselves possible. I took a class recently with Nina Wise, a local meditation teacher, who said that she doesn’t bother with resolutions anymore because she felt like they had a built-in element of self loathing. The idea that we need to change something doesn’t seem inherently like self loathing to me, but I understand how, for some people, making and breaking the same resolutions year after year might contribute to a lack of trust in themselves.
She suggested choosing a theme for the year, things like health, honesty, work or family. Rather than setting goals that include specific elements, having a theme for the year just makes you more conscious of one aspect of your life. For example, choosing family as a theme may mean that you are more inclined to arrange gatherings, are kinder to your relatives, or more mindful of the small gestures that matter like phone calls and notes to check in. If your theme is health maybe it is more yoga and meditation, but also more time with friends who make you laugh, more massages and sleep. Health doesn’t have to mean that you are in the gym three times a week for the month of January and never again. Health as a theme means taking care of yourself as a whole person, and over a year that could be life changing.
She also spoke about honesty as a theme which I loved. She suggested developing the habit of asking yourself whether or not your actions support your theme. In the case of honesty, the questions look something like this:
Is this not true and not helpful? Don’t say it….
Is this not true but helpful? Don’t say it..
Is this true but not helpful? Don’t say it…
Is this true and helpful? Wait for the right time, and say it
The idea of being this mindful of speech is exciting to me. I know that I often speak out of habit, or boredom, or nervousness. It is a discipline for me to hold a space in loving silence, a discipline that I have worked hard to develop. My nature leans more toward giggly chattiness rather than thoughtful silence. I hope that this year I will learn how to wait for the right time to offer advice, or to collude with a friend. I hope that my words will have more power if they are chosen with greater care. Mostly, I just hope that I am helpful.
It is almost the Winter Solstice, the shortest day of the year. More and more I find I have to make deals with myself to get out of bed in the morning, to get out the door to exercise. I’m feeling tremendously lazy, and am unusually interested in carbs.
Thinking of my summer self bounding up into the hills and coming home for a farmers market salad is like listening to a story of someone I knew in grade school. I can hardly remember who the girl was who had run, and meditated and done yoga all before 10 am.
My first instinct as the days have become shorter and darker, after the farmers market closed for the season, was to ignore those changes and continue on with my routines. Getting out of bed in the pitch dark, sitting for meditation and a short yoga practice when every ounce of me longed for bed. Forcing myself out the door and up the hill for a run, despite the grey sky and my heavy legs. I have been buying expensive out of season produce; I will never forget how scandalized my mother was the first time she saw tangerines and cherries next to each other at the grocery store. The literal definition of too much of a good thing. After a few weeks of denying both the clear messages my body was sending and those outside I had a radical idea: what if I slowed down a bit? What if I actually stayed in bed? What if I did everything less…
For the last few weeks I have been doing less, much less. I have been running barely at all, my yoga practice has been very slow and quiet. I have extended my meditation practice because sitting feels good right now. I am eating all the starchy foods that appear this time of year, the squashes, potatoes, and apples. When it first dawned on me that my body was really telling me it wanted a bit of a break, I thought back on the last few winters when I have not adjusted my program at all. I have gone at 110% regardless of what the weather suggested or my internal clock required. Both this spring and last, I started the season nursing injuries of overuse…..It’s stunning to think I needed to learn this lesson twice. Actually more like 39 times.
None of the things that I fear about letting up on my routines have happened. My jeans all fit. My sleep is just as deep if not deeper. I am calmer. I have focused my yoga practice on forward bends and hip-openers. No jumping, nothing fancy. It is more a practice of hibernation than acceleration. I am hoping that when spring comes that I will feel refreshed and renewed by this period of slowing down. By actually paying attention to what my body wants, by curling up with a book in front of the fire, and sleeping in, I feel like I am taking care of myself. It’s easy to get confused, to think that going full speed all the time is actually what we need. It isn’t. It is what we become used to, but that doesn’t mean it’s what we always need. Sometimes we need to pull back, to go inward and slow down. The world will continue to turn. In fact we may find it turns with fewer creaks and compaints right into spring……
This weekend, after our new kitchen rose to the occasion in a huge way, churning out meals and snacks for our whole family, I felt so full (literally and figuratively) and happy. Being all gathered together in our new house felt exactly as I had hoped it would. The sweet spot that lies between abundance and excess. On Saturday after the festivities wound down, I headed to a daylong yoga and meditation retreat. The day itself was grey and rainy and it felt so good to know that I would spend it quietly on my mat with no greater task than to listen.
There is nothing I love more than gathering with family and friends but I have learned that to do it well, I need to build in some quiet time on the back end. I can be completely present to those I love if I can practice that silently on my own. Too much silence and I get a little wacky; not enough, and I get even wackier. Like anything else, I need balance between external merriment and a quiet internal landscape.
The workshop was great, a duet between two smart teachers. They skillfully wove yoga, meditation and dharma talks in such a way that at the end of the day, I was ready to go home because I was satisfied, neither stuffed or restless. Like a well-made meal, a workshop should be a good blend of spices and portions; too much and it’s like drinking from a fire hose, too little and you are left feeling empty.
During one of the meditations, our teacher Wes Nisker suggested that we view self-criticism as a misguided form of self-care; the idea that the internal voice that releases a steady stream of worries, critique and doubts is actually trying to help you. I thought this was a brilliant shift in perspective on that particular characteristic we all share. My favorite writer, Annie Lamott, calls the self criticism station in her head “k-fucked” radio. It’s the voice that makes it hard to try new things, or is convinced that at any moment everyone is going to find out you are a fraud and it’s curtains. We all have it, and for some people it’s louder than others. Learning to see it as a form of self care seems to make it easier to reconcile it. Rather than resent it, or try and control it, I love the idea of seeing it as a misguided form of self preservation. By thinking of it this way, it seems easier to shake it off. When some familiar worry or self doubt pops up it seems easier to smile and ignore it rather than feel like, “seriously, you again? Get lost..” Instead it becomes a worried, well meaning friend who can’t help themselves. You smile at their efforts and don’t listen to their advice.
We do ourselves no favors worrying about what could go wrong. Instead, we should be focusing our energies and attention on what is actually happening. Like so many things, it’s way harder than it sounds. But, maybe learning to see “k-fucked radio” as just one of our many channels, we will see that we can always change the station.
One of my earliest memories is of standing in the grocery store with my mother and looking at a total stranger, keeping my eyes on them until I felt like I loved them as much as my parents. I remember playing this game in stores, restaurants, and on the highway, staring at strangers until I felt the sensations that I associated with love. A feeling of warmth in my chest, a kind of tingling in my arms and hands, a sense of connection even though the person wasn’t someone I knew at all. I guess from a very early age I was interested in how my mind could influence or create sensation in my body.
What I didn’t realize was that I was practicing my own form of a Loving Kindness meditation. Love is a virtually unlimited resource, it is what gets us up in the morning; it is what sustains us through our darkest hours and lifts us to our greatest joys. In my own life I define love as a sense of connection and a generosity of spirit that makes me feel safe and expansive at the same time. Sometimes when life is busy, or we are feeling run down, that sense of connection to others can feel out of reach. Practicing a Loving Kindness meditation for just a few minutes a day can shift our whole sense of what interdependence feels like. The formal practice of this meditation requires you to find a quiet place, and sit with eyes open or closed. Start by visualizing someone who you love unconditionally. Focus on the image of that person in your mind’s eye until you can feel the sensation in the body that you associate with love. Often you will find that you are smiling. You will send that person the message:
May you be happy
May you be healthy
May you be safe
May you be at ease
Repeat these phrases in your head a few times as you hold that image of your beloved person in your mind. Then the practice dictates replacing the image of that person with an image of yourself and sending yourself these very same messages. From yourself you move to an acquaintance and eventually to someone with whom you have conflict. Each time you repeat the same phrases, sending these messages of love and generosity out into the world. The very last part of the practice is sending these messages universally in the hopes that they reach all who need them.
The formal practice of Loving Kindness meditation is intensely powerful, and I encourage everyone to explore it. Recently, I have found myself returning to my own made-up version of it from childhood. Practicing not in a quiet room away from the world but instead in the hardware store, or the library, focusing my attention on someone (usually their back, so it isn’t weird) until I can feel a sense of loving them. There is something about this practice that makes me happy, that makes me feel like I have tapped into an amazing source of good feeling that exists all the time. Whether it is practiced formally or informally, working to spread love and kindness in today’s busy, intensely complicated world seems like an awfully good use of one’s time
I promised myself when we moved that I wouldn’t work for six months. I would focus on getting the kids settled and on the renovations we wanted to do in the new house. I was a little burned out by the time we made the move and thought that a break from teaching was probably a good thing. Besides, moving to the Bay Area as a yoga teacher is like bringing sand to the beach.
Ever since I have had kids I have always worked. Sometimes it was only one day a week and other years as many as thirty-five hours per week. We have never had any of the conflicts about chores that many of my friends who have families with two working parents have had. Colin and I have managed to split up the various tasks that govern family life in such a way that we have avoided that kind of resentment.
Last year I had a teaching schedule that several days a week had me starting my work day at 6 am and finishing at 9 pm. I was always home when the kids came home from school, a hectic time of day filled with homework, playdates, dinner and my least favorite task: making their lunches for the next day. When this school year first began I really enjoyed putting the kids on the bus, walking back home, chatting with the dog, heading out for a run. Things like showering with no sense of urgency were new sensations. Not thinking of my days in 15 minute increments was a welcome change.
In the last few weeks I have made forty cupcakes for the fall festival and spent hours making a spooky cake that looked like it hand a reaching out of it, I have taught myself how to upholster, reading books on fabrics as if they were New York Times bestsellers. I like doing these things. In fact I love doing them; I am just not sure it’s enough.
The hardest hours of our day are from 3:30-6:00 pm. In the rest of the world they are rush hour, or happy hour. In our house they drag at half speed. During these long afternoons I toggle between intense boredom, irritable restlessness and pleasure at the sweetness of my kids. It’s a strange combination, like vinegar covered marshmallows or something. I was helping Ben with long division, a process so arduous I think the people who built the Great Wall had it easier. When faced with numbers my intelligent, resourceful child becomes whiney and seemingly cursed with amnesia. When ask if 59 was an even number today he said no with great authority, “But 57 is”. We were already on minute thirty of homework. I had to separate myself from him before I hit him with the zucchini I was slicing. In the meantime, I had put the chicken on the grill and checked on Mae. I was letting Pete practice riding his skateboard in the family room because we just took the rug up in there and he could practice on the plywood floor. I would have sent him to the park but he doesn’t like to go unless Ben can come, and at the rate we were going the chances of Ben making it to the park were slim.
Finally Mae emerged from her room after a post school chill and wanted to eat something. She likes it if someone sits next to her for snack, and I was happy to sit with her. I will admit to having the thought as I sat next to her that sometimes having a child who doesn’t speak isn’t all bad. At that moment, Pete announced that there was “the poop of a dog” on the floor in the family room. Because Mae had just sat down to eat, there was not going to be any poop picking up until she was done, so I got to sit there knowing that at some point in the next ten minutes I was going to have the great pleasure of picking up dog poop inside my own home.
If you drive by our house in the afternoon it looks like nothing is happening. In truth, not that much is happening, but when you are the eye of that particular storm and every sentence starts with the word “Mom,” you can start to wish you were anywhere else. I am lucky that I have options, and that staying home with my children is a choice I can make. It is insanely hard and I miss working and will go back to it eventually. If I don’t, I will eventually drive Colin crazy with questions like, “Will you teach me how to use the table saw so I can cut this piece of siding for the porch?” Being a Mom is hard no matter what choices you make. I find it equal parts wonderful, terrifying and tedious. It is the craziest adrenaline sport and the longest lecture all rolled into one…..the prize is getting to do it all again the next day. And besides, I would be pissed if anyone else let Pete ride his skateboard in the house.
I have often wished that Autism took weekends off, and federal holidays. One of the hardest things about having a special needs child is that it is relentless. This can feel true with the other ones as well. Occasionally when the boys are bickering, I think to myself that having a child who doesn’t speak really isn’t all bad. However, on many Sunday mornings when your body wants a break and you want to chill on the couch with coffee and the newspaper, you can’t. Sometimes you can, maybe she is feeling mellow and just wants to hang out, or maybe she wakes up at 5 and bangs on her door until you put her in the car which is where she likes to go first thing in the morning. You just never know, and the not knowing means that even if you can chill on the couch on a Sunday morning you have one ear open the whole time. In fact you never really relax because at any moment a tantrum can start. Mae’s tantrums are like summer storms — they can come out of nowhere, rain furiously and stop as quickly as they started. She bangs her head and bites her hands, she twists her body and kicks her legs, I can barely imagine what the internal storm must feel like for her because the outside is so dramatic.
This weekend was different though, this weekend we took an Autism vacation. We were home, we were with Mae, we were in fact sanding and prepping the walls of the kitchen for paint. Hardly a trip to the Bahamas, but we even managed to fit in not one but two trips to Home Depot. It is glamorous around here these days. Mae was calm, she was joyous, she happily joined us as we cruised the now familiar giant aisles. When the sander was loud she did not attempt to drown it out with screams but went up to her brothers’ room instead and lay down in Pete’s bed. There was not a tantrum, or even a complaint lodged. I feel this strange sensation in my face and realize that it is my lower jaw relaxing for the first time in a while. Yesterday, when I went running, I realized that I didn’t feel a moment’s guilt because I thought Mae might be home melting down. I felt free. It’s been a long time.
This change in behavior is due to a new protocol Mae is on. When we made this move to the West Coast, part of the motivation was that really interesting research is going on in fields related to Autism. Mae is part of a study on the effects of a new drug on mood regulation. I had some serious concerns about taking this step. I love that Mae bounces in and out of rooms like Tigger. I don’t care if that’s a sensory seeking behavior. To me it is part of who she is. The thought of giving her something that would affect her personality made me uncomfortable. It is hard for me to know what is Mae and what is Autism and can you love one without the other? I have worked so hard to accept and love her for exactly who she is that I was worried that this could change all that.
It is way too early to say whether this is a long term solution or simply a break in the clouds. Either way I feel like we had a vacation from Autism this weekend. Like all vacations, I didn’t know how badly I needed it until I felt myself wind down. Mae has taught me to adapt to anything, to enjoy the smallest victories and to love the people in my life for who they are right now. I know that I am a better mother and a more compassionate person for the experiences she and I have shared, but this weekend reminded me that just because I can endure something doesn’t mean I have to. It reminded me that we can normalize anything, and that is a survival mechanism that I depend on.
Mostly it made me remember how good a Sunday morning feels. I am cautiously optimistic that we have more Sundays in our future and maybe we are really onto something. For anyone who deals with an illness of their own or that of a beloved family member, the hardest part is that it doesn’t take weekends or federal holidays off. I am reminded that no matter how grim things may be it is important to take a break: a walk around the block or simply a cup of coffee, but to try for some small period of time to find a Sunday morning. Beach vacations in exotic places are great, but these days nothing feels more luxurious than than the quiet that comes on a Sunday when everyone feels safe and loved and knows where they belong.
Last night I watched the documentary Fed Up which was produced and narrated by Kate Couric. It is a fairly detailed account of how we have found ourselves in a situation where obesity is now a bigger health crisis than starvation. The whole low fat craze started in 1977, and as food companies removed fat from food they added sugar — lots and lots of it. Since we were all trying to avoid getting fat, it seemed to make sense to remove the fat from our diets. However, once you remove the fat from a food it is really no longer recognizable to your system; and when you add a bunch of sugar it actually sends your system into overdrive, raising your insulin levels and ultimately turning all that excess sugar into fat.
Say the words “Olestra” or “Snackwells” to anyone my age and they will laugh. Almost everyone I know remembers those cookies that all at once appeared in the pantry. Who can forget the thin outer layer of chocolate that in a not unpleasant sensation would give way to a vaguely dry and cardboard middle. I even remember peeling the outer chocolate off and leaving a stack of the icky middles on the coffee table as I watched The People’s Court after school. As Judge Wapner handed down faux justice I ate faux cookies although at the time I believed in both. Only a few years later Olestra appeared, this new chemical was going to mean that you could eat bags of Doritos and potato chips and not gain weight. The only catch was that each package came with the warning “May cause anal leakage.” These two products disappeared off the shelves after a few years. I guess that even the thought of guilt free Doritos wasn’t enough to make people overlook the anti-social consequences.
What becomes clear in Fed Up, and what we all are realizing, is that a lot of the things sold in the grocery store are not food. In fact most things that have been processed are not food. That doesn’t mean they don’t taste good, or that we don’t want them, but it does mean that our bodies don’t benefit from them at all. Coincidentally, I am reading a book called Eating on the Wild Side by Jo Robinson. It is an easy read all about how to get maximum nutrients from our food. For example, if you crush fresh garlic put it aside for ten minutes before you heat it. Only after a little rest does it release all its powerful anti-inflammatory chemicals. She also points out that given the sad state of what passes for a tomato in most grocery stores we are better off with the canned variety.
Ultimately, we all want to feel good about what we eat. I am a believer in moderation in all things. Except for dessert…I am an all or nothing girl when it comes to whipped cream! The point made in both the film and the book is that real nourishing food is rarely available in a package. I knew it wasn’t all healthy but some of it bears a closer relationship to the lego on my playroom floor than what we should be eating. For those of us who grew up thinking that fat was bad and low-fat was good, it’s time to reprogram ourselves. As food journalist and author Mark Bittman says “If your grandmother wouldn’t recognize it you probably shouldn’t eat it.”
In her book A Heart as Wide as the World Sharon Salzberg describes “effort” as the “unconstrained willingness to persevere through difficulty.” She goes on to say, “Effort is the willingness to open where we have been closed, to come close to what we have avoided, to be patient with ourselves, to let go of preconceptions.”
I love the phrase “unconstrained willingness to persevere.” I think for many of us in our lives we are many things to so many people and we have taken on many different kinds of tasks. Sometimes a kind of automatic pilot can kick in. We understand how to make our lives work and so we move forward, effortlessly. There is nothing wrong with being good at what you do, or having an established work or parenting pattern. But when something is effortless, are you connected to it? In yoga when we teach the very first pose, Tadasana, people will almost always say “you mean I just stand here?” The answer is “sort of.” If you are really thinking, however, about your balance and engaging the muscles of your legs and the position of your spine and shoulders you will find that it takes effort. You will even start to build some heat in your body, it is important to figure out the alignment in that first standing pose because it will be relevant to every other pose you do, including even the fanciest of arm balances.
The same is true in our lives. If we construct our lives in such a way that they require very little focused effort, we start to feel disconnected from ourselves and the people and things we care about most. One of the reasons I believe that having a special needs child has been an incredible gift is that her unpredictability and the effort it takes to be her parent mean that I can never really slide towards autopilot. She is the ultimate reminder to wake up and pay attention because life is happening, and of course if you take your eyes off her for a minute she is hanging from the rafters…..So that is motivation to stay present.
The word “unconstrained” is perfect to describe the effort we should put into our lives and relationships. It implies that unlimited potential is possible if we let ourselves live fully. We all have lists of things in our heads that we would like to do. They don’t have to be lofty. They can be as mundane as cleaning the kitchen or as vast as enlightenment for all beings. They both take effort, attention and mindfulness. It is tempting when we meet people we admire, such as great teachers, writers or artists, to imagine that they were born with skills we were not. It is true that someone who is destined to be seven feet tall because of their genetics is more likely to play professional basketball than someone who never makes it to six feet. However, there is enormous effort, and concentration that goes into being an athlete even if one is born with some of the cards stacked in your favor. When I have met great meditation and yoga teachers, I am always amazed and maybe a little envious of what they know and how easily they seem to convey their knowledge. What it is important to remember is that this wisdom took effort and discipline. It took focus and perseverance. Wishing for knowledge or clarity but not undertaking the learning is like wishing to be in the NBA and never picking up a basketball.
Right Effort is part of the Buddha’s Eightfold Noble Path. It is the fundamental belief that it takes effort to wake up to the full awareness available to us all. In my mind it is the difference between being able to drive a car so spaced out that I don’t even notice that I have been listening to commercials, and driving a car with full attention to what I hear, what I see and what I am doing. From the outside both experiences are identical, but inside they are completely different Yoga and meditation are two ways we can practice mindfulness and attention, but any activity can become a mindfulness exercise. It just takes effort and perseverance and the unconstrained willingness to believe that every moment is an opportunity to practice being awake. It is this practice, this effort of returning our attention repeatedly to where we are and what we are doing, that will help us realize that we have everything we need for real sustainable, wakeful joy.