Today is World Autism Awareness Day, every day is Autism Awareness day in my house. I am re-posting this, please tweet it, Facebook it, raising awareness increases sensitivity.. And that’s better for everyone.
My daughter is 1 in 68. The CDC recently released numbers saying that 1 in 68 children are Autistic. Each one of those children has two parents who also carry that diagnosis with them, always. Does that make me 1 in 34? I think it does.
In every house, in every child, in every family, Autism looks different. But if you are a parent of a child on the spectrum, no matter where they fall, there is some common ground. I know you when I see you; we walk the same path lined with eggshells, and potholes, but it’s ours.
Below is a list that anyone in the 1 in…
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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.
As anyone who has been in a relationship for any length of time knows, there is a big difference between hearing and listening. In the early days of any relationship, romantic or otherwise, we listen very carefully to the other person when they speak. As we become more familiar with people we may hear them but not with the same attention. I can recall with incredible clarity what Colin and I talked about on our first date, despite the eagle-sized butterflies in my stomach. I was as present and aware of every detail of the day as I have ever been. If you asked me the details of a conversation from this past weekend I would have a harder time. It is not for lack of interest. I still think that at any given moment Colin is the most interesting person in the room, it’s just that familiarity makes it easy to confuse hearing and listening.
Hearing is what happens when I ask my children to empty the dishwasher and they don’t move. They have heard me…but they aren’t listening. Listening is what happens when you calmly tell them several hours later that ignoring my requests makes me feel rotten, and emptying the dishwasher and making beds is just being a part of the team. Listening makes change, but in our family for people to listen to each other, voices can’t be raised and eye contact is necessary. Yelling, snipping, or coming from a place of exasperation pretty much assures that no one in my house will listen to you.
Thich Nhat Hanh, a well known contemporary Buddhist scholar, talks about “listening deeply” or “listening skillfully.” These are practices that one develops through meditation. By learning to listen to the rhythms of our own mind we are better able to listen to other people. We learn how to listen by being quiet and practicing non-judgmental awareness of what comes up in our own minds. It is the same when we are talking to a friend, a stranger, a family member, we have to see that person as they are, not as we wish they were, not rush them through to express our opinion, or in the case of loved ones, without the layers of history between us.
Skillful listening is something we can all develop. At one time or another it has come naturally to us: a friend in crisis, a new love, a child’s first words, but then we relax back into hearing rather than listening. These days I am working on really listening deeply, giving those around me my total attention. When I listen with my whole heart I am a better wife, mother, or friend. Like any practice it starts by noticing when you aren’t doing it, and gently drawing yourself back into the present moment. Eventually it becomes easier, replacing the old habit of hearing, with a new habit of listening.
The conventional wisdom is that it takes 21 days to change or create a habit, although new research suggests that it can take much longer. I have always been really interested in the relationship between routines and habits. Routines are based on habitual behaviors while habits themselves can exist outside of routine. For example, I have a habit of biting my lip. I do this regardless of the time of day or whether or not I am driving or watching tv; it’s just something I do. It is a habit that is not influenced by the rhythm of my day.
One of the things about moving to a new house and a new place is that so many of our routines were changed. I have written extensively over the last few months about how moving or transition can be an opportunity to integrate new habits or cut out things that don’t serve you. Lately, I have been thinking about reward systems for new habits. An example of this would be a meditation practice. Students always want to know how they will be able to tell that this habit of meditation is “working.” In any workshop or class this is always a tricky question. How do we encourage a habit or create a routine when there is no clear timeline or obvious payoff?
I used to tell students that the reward would be that they would be more available to the present moment, more awake to the nuances and habits of their own minds. I still believe that this is true, but it is the kind of answer that implies that without a formal meditation practice you are sleepwalking through life. This is not at all true. Meditation, yoga or a routine quiet activity or period of reflection is an important habit to introduce into every day simply because time moves extremely fast. I find that my days are a blur of activity, much of it shaped by routine. Every morning our house bustles until the last door has slammed and then it is completely quiet. Then every afternoon it again swells with movement and noise until everyone has eaten, fulfilled their last commitments of the day, brushed their teeth and then fallen asleep — only to do it all again the next day.
If we don’t build time into every day to reflect or slow down we are simply riding a wave of routine, which will happily carry us day after day, week after week. By taking time each day to stop moving, or to walk, run, swim, with total attention to the present moment, we are actually stepping outside of the rhythm of routine for just a moment. Taking that time is the closest thing that I have ever found to a reset button, taking a chance to step back and make sure that we are really experiencing things rather than just orchestrating them. A routine is an orchestrated set of habits that keeps your life running smoothly, but if you don’t examine it you can very easily lose touch with the fulfilling and exciting parts of an ordinary day.
I encourage everyone to add in something new for 21 days, some new challenge that shakes things up a little. It can be a meditation practice, or a change to your exercise routine. It can be learning a new skill that requires concentration, just something out of the ordinary. Twenty one days may not be the magic number but it is certainly a start. If our routines are running the show, it’s only because we let them. Introducing new habits, challenging ourselves to shake things up a little bit will bring a freshness and a vitality to everything we do.
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.