Thanks-giving and Compassion-giving

Though our world and Western society are forever changing, and many people bemoan the loss of “the good old days,” the annual American tradition of Thanksgiving is coming, as it does every November in the United States. The name of the holiday serves its purpose well: to remind us to give thanks for our blessings. And in Judaism we have a wonderful “first thing in the morning” blessing of giving thanks every day… giving thanks that we woke up and can still breathe! It’s not something to be taken for granted at all … and it is easy for me to be thankful for the simple things in my life, the things that I might not pay attention to because they have always been here, such as air to breathe, water to drink, enough food to eat, clothes to wear, a roof over my head, warm clothes and a heated home in the cold season, a loving family…really I don’t actually need anything more than that, and I have so much more.

As a parent, I spent lots of years trying to teach my now young-adult children to have the perspective to be able to recognize the blessings in their own lives, to recognize that “there but for fortune” (to coin an old Phil Ochs song) their lives could be far less comfortable, and though perhaps their circumstances are less than Hollywood fantasy movie-ish, they have so much to be thankful for. Both have definitely grown to understand that, but…my youngest struggles on a daily basis to maneuver the world with autism, Sensory Processing Disorder, anxiety and severe learning challenges.

While he definitely has much to be thankful for, and certainly “there but for fortune” he would not be where he is today, it is also very true that the world he walks through is not at all the same world that I walk through. He often says to me, “You have no idea what it is like to be me.” This sentence became the title of a song that I wrote in an attempt to explain Sensory Processing Disorder to teachers and community members who do not understand the seemingly pointless melt-downs that happen in public for so many children and young adults these days.

Having a son with autism has taught me compassion on a very deep level. I do think that as a young adult I suffered from “ableist” arrogance: I was very capable academically, I could play music and sing, I could run and do athletics, I could speak and hold my own in intellectual small talk and crowd banter, I could walk through the streets of Jerusalem (my home in my twenties) and pay attention to everything that was happening, but then turn all of that stimulation off and relax at home once I got there. None of these daily activities ever crossed my mind as something that everyone couldn’t do, as something to be thankful for. In retrospect I realize how very naïve I was of course.

My son is a kinesthetic learner, and excels at his passion, drawing and animation. He is also a talented singer. But that is where the overlap between his skills and the skills I had at his age end. He struggles to retain facts taught in academic classes. He says his brain literally hurts when he is trying to memorize details. He cannot run or coordinate his body well. He cannot follow small talk on any level; growing up in an intellectual Jewish home has made him far more insecure in this area than had he grown up in a home with people who were less talkative. But more than anything, walking through the streets of Columbus, Ohio, where we live now, is one long string of stressors and fears.

Ableism and othering go hand in hand. Having been thrust into the world of special needs by virtue of my son, I have been given the gift of needing to understand the world through eyes that do not see what I see. Ableism is a word that has been coined to refer to how much of western society is structured, under the assumption that everyone has the same physical abilities, and that if you have a “disability” you are inferior. Othering is when you choose to differentiate between those you think are similar to you, in whatever way you are choosing to define yourself, and others who are different and therefore not part of your “group.” We live in a time where othering is rampant and dangerous and very much in the spotlight. Ableism is much more subtle, especially in the case of autism and Sensory Processing Disorder, which are conditions that are often invisible to the external eye.

I know that my son suffers from Sensory Processing Disorder and I can often help him through overload. But what about the person on the street who is clearly having a hard time, perhaps a person on the street who does not like my bumper stickers or my political pins? I don’t know that person, but I think it is fair to say, just as my son says to me, that I have no idea what it is like to be them.

So, at this time of Thanksgiving, I am consciously saying thanks for the many blessings in my life, from the mundane to the more complex. I am also reminding myself never to assume what someone else should be thankful for, never to assume that I have any clue what someone else’s life challenges are. I am asking all of us, whoever we are, to practice a little understanding and perspective and tolerance as we enter the darkest time (season?)of the year…to bring the light of compassion and stop the practice of othering. Because, I/you have no idea what it is like to be them…

Autism Awareness, Passover, Easter and Miracles?

This year, as occasionally happens, Passover and Easter are both on the same weekend.  Passover starts on Friday night, March 30, and Easter is on Sunday, April 1.  While each holiday is celebrated by different religions of course, both holidays focus on historical events, and both holidays tell of miracles, miracles that are central to the narrative of each holiday.  (Yes, I know that there are disagreements amongst historians about whether or not the events relayed in each of these holidays actually happened, but I contend that even if the facts are not exactly the same as the religious stories, the symbolism is helpful!)

So what is a miracle?  The first definition usually involves divine intervention:  A surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency.  The second definition is more how I tend to use the word:  A highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences.  These second kind of miracles happen every day, but sometimes we have to change our perspective in order to notice them.

Growing up Jewish, the miracle of Passover, the parting of the Red Sea, always captivated me.  The Passover story, with the Hebrews enslaved for generations, an abusive, disrespectful Pharaoh, Moses as a hesitant and unwilling but eminently capable leader, negotiations that continually flip-flopped as to the outcome of the Hebrews’ release, and then that climactic ending of the sea parting as Pharaoh and his army were bearing down on the fleeing Hebrew slaves, was an extremely powerful metaphor for me throughout my childhood.  So much of my adult attitude to life can be tied to that story: don’t believe you are what others may be trying to make you (a slave), don’t be convinced you deserve abuse even if that’s all a figure of authority is dishing out (got a Pharaoh in your life?), don’t think you can’t be an effective mover and changer even if you’ve never done something before (Moses stuttered and still was the right person for the job of the chief negotiator),  don’t take no for an answer when freedom and justice are the issue at stake (those in power don’t always want change, to say the least), don’t despair regardless of how bad circumstances look, don’t give up, and don’t believe that what looks like a wall can’t move and change, because after all, who would ever think that the water could part to allow the Hebrews leaving Egypt on foot to escape the Pharaoh’s armies with their horses and chariots.  Totally a story of the underdogs winning in the long run.  Of course, this is only one chapter in the long history of the Jewish people, and not all the chapters have positive endings, but this particular chapter ends with a great deal of hope.

As I am not Christian, I am not as intimately familiar with the Easter story, but I do know that the sense of hope, the sense of miracle, the sense that sometimes events happen that are “highly improbable and extraordinary” that permeates the Passover story is also paralleled in the Easter story with Jesus rising from the dead on Easter Sunday.

And what does all of this have to do with the world of autism?  As a mother of a child with autism, I spent many years praying for a miracle, and every year, these holidays make me reflect back on the desire for that miracle.  At first, I prayed that one day my son would just miraculously wake up and feel better, that his dis-ease in the world would just be a temporary thing that we could chalk up to a rough beginning.  When that didn’t pan out, I prayed for a cure.  While there are certainly families that have tried numerous medical and health interventions that we haven’t tried, we did chase lots of different therapies down in our hope for a miraculous cure.  None did the trick, but one very smart practitioner said to me, “You are looking for one key.  There isn’t one key to unlock everything, but everything that you are doing will help a bit.”  While that perspective was helpful in some ways, I noticed that I had now expanded my desire from wanting just one miracle, to wanting all of the miracles that would help.  Through the years, in speaking with other families in the world of autism, I discovered that my desire for a miracle was not unusual….

I don’t even remember at what point I stopped looking for a miracle.  My son is now 23.  He is a talented artist.  He still struggles with a lot of things, but he has also far exceeded the fears that were propelling my need for a miracle.  And he personifies the story of Passover, those same qualities that I gleaned growing up are his daily fare:  don’t believe you are what others may be trying to make you (a label, someone who is limited, someone who is disabled), don’t be convinced you deserve abuse even if that’s all a figure of authority is dishing out (despite a stream of bad experiences with impatient and teachers who could not understand him, he continues to love to learn), don’t think you can’t be an effective mover and changer even if you’ve never done something before (every new life requirement is scary, but he never lets his disability stop him from tackling the new challenges, despite the anxiety and the self-doubt),  don’t take no for an answer when freedom and justice are the issue at stake (he has unfortunately endured many false accusations, and has had to learn to self-advocate under some really unpleasant situations), don’t despair regardless of how bad circumstances look (sometimes those due dates for assignments just pile up, but he has learned to take a deep breath and keep moving), don’t give up (I have endless awe at his ability to get up each day and go back into the world, no matter how hard the day before was), and don’t believe that what looks like a wall can’t move and change (this is probably the definition of his life!)

So, maybe, when I consider miracles as “highly improbable or extraordinary events, developments, or accomplishments that bring very welcome consequences” I realize that we have been living a life of ongoing tiny miracles.  The autism is not gone, that miracle did not happen, but perhaps the Passover miracles did?  Sometimes the water parts in metaphorical ways!  This song is called Miracles Happen.