Category: Special Needs
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.
Synchronicity as a practice….
“Sanity comes from a sense of being synchronized within ourselves.”
I came across this sentence and felt like it really captured everything that I have come to believe about finding balance in life. I think everyone has had the experience of being out of sync with ourselves. Sometimes it is as simple as agreeing to lunch with someone when you don’t really want to, or endorsing an idea you have misgivings about. Other times it is more complicated: it can be time to change jobs, or end a relationship but inertia keeps you stuck in place.
There are millions of suggestions and avenues for creating synchronicity between our internal and external lives. For me it is a combination of yoga, meditation, and running that provide the space to make sure I am not moving too far from the center. For someone else, it may be swimming, walking their dog or writing. We all need something, some sort of barometer of our own wellness. Without a quiet center built into our lives we can find ourselves distracted by every shiny object or tragedy that life has to offer.
When I look at my daughter I am so aware that so many of her issues arise from the fact that it is almost impossible for her to be in sync with the world around her. This morning she woke up and came running out to the kitchen table where I was sitting quietly, lights dimmed, listening to classical music and having coffee, she let out a growl of delight at the sight of me and jumped up on the bench where I was sitting and started clapping and laughing….it was 6 am. Mae is clinically not aware of the cues around her; being quiet in a library, joyous on her birthday, or patient in a long line, are all possible only if she is in the mood. What the world wants, is not her concern, but for her that’s normal. It also doesn’t bother her especially if she has bounded into my quiet morning like a freight train. She doesn’t do guilt. She is autistic.
For most of us though, we are aware when we are out of sync with ourselves or our world but not always sure how to fix it. We can acknowledge it; we can say “I am working too much” or “I am working too little,” or “I am tired, sad or depressed.” Being aware of it is an important step. The next step is to define what feeling in sync is for yourself. We must be clear on what we think balance is, before we can head in that direction. No matter what avenue you take this requires honest, and loving self reflection. I say honest because sometimes we get confused by what we think sanity looks like, and what it really looks like for each of us. That serene woman in front of me in a yoga class may be sane, but I can’t be her, so I have to think about what serenity would look like in my life not my fantasy version of hers.
I am always interested in how to make things a practice, so I made a list of the areas in my life where I feel out of sync. Some are big; am I professionally fulfilled and does it matter? And some are small: it bothers me that there is a cord hanging out of the family room ceiling. Obviously, one of these things has an easy answer and the other doesn’t. The point is not to have all the answers. It is more to identify the questions, and then create some sort of framework to bring things back into alignment with each other. The first part of the practice is creating the questions and the second part is moving to address them in practical ways. Just engaging in the thinking process about balance seems to make me more balanced. Almost always it is the effort not the outcome that has value.
Love is not a limited resource…..
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
An Autism Vacation
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.
It doesn’t just happen….
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.
Wrestling the Fearosaurus
Anxiety is an extremely unpleasant sensation. It is the place where fear of the unknown meets fear of the future, and they throw a huge fear carnival that can affect your whole system. There very specific physical responses we have to anxiety, a sense of elevated heart rate, a dry mouth, an inability to be still or think clearly.
These are real physiological responses to what your body perceives as a threat. Even if that threat is manufactured in some internal fear factory that is busily creating scary scenarios, your body cannot tell the difference. It responds to anxiety that is generated internally with the same enthusiasm as if it were an external attack. The problem is that our sympathetic nervous systems were designed to quicken our heart rates and slow down all our functions so we could escape from animals that were going to eat us. It was a system that was designed for short bursts of lifesaving action. Instead, for many people they have found themselves living in a state where this system is always on.
There is no question that we live in stressful times. Reading the headlines right now is enough to make anyone feel vulnerable and scared. When you add into it the day to day headlines of our own lives, filled with the regular victories and tragedies that befall us all, it can be hard not to feel overwhelmed. Our incredibly, amazingly well designed bodies, however, come equipped with a second system to counteract the effects of the sympathetic nervous system. It is the parasympathetic nervous system. It signals to our body that we are safe, that we are at ease, that we can digest our food and our heart can beat normally.
The thing to remember is that both these systems are triggered and controlled by our perception of danger. If I am sleeping peacefully and am attacked by a dinosaur before I ever saw it, then I never had the chance to perceive it and become afraid. My sympathetic nervous system never went to battle stations, accelerating my heart rate and making me strangely alert and focused on getting away from the attacker as my only goal. The reverse is also true. If I lie in bed thinking of terrible scenarios that I perceive to be real then my body will respond as if they are.
The key is to look honestly at what messages we are sending to our body. Are we running around all the time, claiming we are incredibly busy and extremely stressed and then wondering why our body is in a strange nervous overdrive? Perceiving that there is never enough time, or that everything is going to fall apart at any moment is a habit. It is a habit of mind with serious ramifications in the body.
The only way to break the habit is to look at our thoughts, honestly, gently and with compassion for ourselves. Can you identify thought patterns that don’t serve you? Do you have habits that feed your anxious state? If you find yourself in an endless cycle of stress then try introducing new habits as a way to break it. Instead of waking up every day and immediately checking email and the news, maybe go for a walk or sit for meditation. Stress is a habit we reinforce without meaning to. Sometimes the most effective remedy is just to change our routines a little; maybe then we can see more clearly what is triggering our anxiety.
Seeing clearly can come from setting aside a quiet time every day, seated in meditation, going for a walk, riding the subway, when all we do is watch our own mind. I have come to think of my meditation practice as a kind of internal eavesdropping, listening to the conversation that goes on in my head all the time, even when I am unaware of it. What are the topics I am returning to? Are they serving me, or are they keeping me stuck? I cannot learn to let go of them until I identify them.
If you are feeling like you are in overdrive spend some time just listening to your thoughts. Are you spending your days in a cycle of what ifs? If you find that you are trapped in a cycle of repetitive and anxiety-producing thoughts you need to work to break the cycle. The first strategy is to notice the signs, the accelerated heart rate and quickening of breath. Go for a walk, take 10 deep breaths, call a friend. The key is to recognize that you are safe, that this feeling you are experiencing is a product of your own perception. It is a thought that seems more real because it has a physical presentation, and fairies and unicorns don’t.
Listen to your own mind. Listen carefully and without judgment. Pay attention to your habits and start to see if you can change the ones that don’t serve you. There is no magic to mindfulness. It just means learning to listen to our thoughts and know the difference between the real dinosaurs and the ones we breathe life into ourselves.
A small act of real kindness goes a long way….
The last few weeks have been jam packed with errands. Boring ones like the grocery store, hardware store, bank. Before the kids started school they tagged along. For the most part they are fairly well behaved and they always hold out hope that there will be lollipops at the bank.
Mae has a shorter fuse than her brothers and at least once during these days of vaguely tedious drudgery she will completely lose it. Before I met Mae, I used to believe that when children fell apart it was because they were hungry or tired or there was some other situation a parent could have influenced or predicted. Public tantrums were some indication to me that a parent was asleep at the wheel.
Sometimes Mae’s tantrums are that, but most of the time they are like flash storms. They start up out of nowhere, rip through the peace of the day and leave us both spent and a little shell shocked. The older and bigger she gets the harder they are to defuse, especially in public. As she hurls her body around, screaming and crying, biting her finger or banging her head it’s all I can do to keep her from hurting herself.
Inevitably, as soon as one of these colossal expressions of displeasure begins, a “helpful stranger” appears. They are typically older than I am and female. Usually they spend a few minutes assessing the situation and then they offer advice or commentary like: “she needs more sleep,” or “maybe she is hungry?” Or a personal favorite: “my children never behaved that way.”
The “helpful stranger” has been on every airplane with us, in every grocery store, bank, even at the play- ground. She is masking her displeasure at my child’s behavior in the form of some sort of parenting tip, as if I were enjoying the sight of my red-faced screaming child and restraining her was some sort of hot new arm workout.
I have never been nasty to the helpful stranger. It wouldn’t solve anything, and I am usually too focused on Mae to do anything else. Occasionally, I will make eye contact and say loudly enough for the other people around to hear, “she is autistic.” Just the statement of the fact hangs in the air and is mortifying enough to shut the helpful stranger up without me doing or saying anything that I would regret.
Last week, we were in Safeway and my cart was a mountain of groceries. I could barely push it. As we reached the checkout line Mae’s goodwill came to an end and a tantrum ensued. It was a doozy; arms and legs were flying everywhere. The helpful stranger was right in front of us in line. I could feel her watching us. I could feel her getting ready to offer me some parenting tips. I could also feel myself fragile and exhausted, getting ready to take my frustrations out on her. If Mae was having an external meltdown I was as close as I get to an internal one, and the helpful stranger was going to bear the brunt of it if she opened her mouth.
When she had finished paying she turned to look at us, me with one hand emptying the cart, the other arm holding Mae on my hip and trying to prevent her from throwing herself to the floor. She said “my grandson is autistic, I am so sorry it looks like she is having a hard day. I hope tomorrow is better.” That was it, then she walked away. It took a minute for me to register her kindness. I was so prepared for the false concern of the helpful stranger. Real kindness is without judgment, it is simply an acknowledgement that you see someone. It is the difference between eye contact with a stranger behind a counter or looking away. Real kindness is about connection.
I know that sometimes I can be the helpful stranger, jumping in to tell the woman with the screaming newborn to try the football hold or maybe bounce up and down a little… I won’t do that anymore, it doesn’t help. It’s about me and not about her. I will remember what real kindness feels like, and just hope for her that tomorrow is a better day.