Remember those early days of the Corona shutdowns, back in
March? Now many things are reopening,
and it is almost hard to remember what we were experiencing back then. Many of my friends had written about how the
“shelter-in-place” rules had provided a welcome and most unexpected opportunity
to have their adult children at home for an extended period of time. Others bemoaned that their kids specifically
chose NOT to come home, trying to be responsible, afraid that as millennials
they were potential COVID carriers and might unknowingly affect their parents
aged 60 and older. Each family chose
what worked best for them. Our adult son
with autism lives with us anyways, and since his university was closed, he is
now living and learning and working all from his room. Our adult daughter has a theater job where
everyone was asked to work from home, so she chose to come home to us and work
from here initially. It has been years
since we have all been under one roof for such a long period of time, and never
under these conditions of course!
Our daughter is an organizer by nature, and immediately got
busy organizing game nights. No one had
anywhere to go, and in those early days all of our work and deadlines were
accompanied by huge question marks. We
hadn’t done game nights in years. In
fact, because our son’s learning disabilities make college work incredibly
time-consuming, we probably haven’t played a game in at least the 6 years that he’s
been in college. And, because his work
is also so all-consuming mentally, he didn’t remember any of the rules of some
of the games we used to play. No
worries, now was the time to take a breath and review some of the life skills
that he used to know how to do but has forgotten. Not that playing a card game is a life skill,
but it was reflective of the many things that have disappeared from his daily
routines that we could now review.
So we retaught him the rules to Spit, also known as Slam, Speed,
or Double Solitaire. Everyone know that
one? You can google it if not, it’s a
fun game. But it totally favors people
who think fast and move fast. In other
words, the type A personalities of the modern world. The go-getters, the self-starters, the movers
and the shakers, the leader types. Our
son does not move fast. The other three
of us do. Seems therefore like a very
unfair game. But something interesting
Each time we played, the three of us raced through the game,
slamming cards down in their appropriate places as fast as we were physically
able to. Our son moved slowly, a little
bothered by the fact that he couldn’t move as fast as the rest of us, but
mostly just focused on his cards and getting his cards into the right
piles. And then, in every game, we
reached a point where the three of us fast-movers were stuck. We couldn’t move anymore cards anywhere, and
we had to sit there, waiting for him to get through his cards. But now he wasn’t racing against us, because
we couldn’t do anything, so he could go at the pace that suited him, take his
time, think quietly and comfortably about his cards and where to put them. And the rest of us just sat there. Four out of five games, he won. All of our breathless racing was pointless.
I loved it! What a
silly, but significant, reflection of how the “meek” shall inherit the earth, (though
my son is anything but meek.) As we sat there playing these silly card games, Corona
had brought the world’s economies to a standstill, with all the wealthy powerful
(arrogant?) nations in the exact same boat as less prosperous parts of the
world. Running faster wouldn’t make
Corona go away, but stopping and staying put, inside one’s houses, might just
work. What a change of pace, literally.
I’m not sure that I will begin to play this card game any
differently than I ever have, but those game evenings in the early days of
Corona definitely made me question all the running I do in the rest of my
life…and shown my son that being that slow and steady tortoise is not something
to be ashamed of, despite his family members’ hare-like habits.
There are many different interpretations of the old Aesop’s
tale about the race between the tortoise and the hare. Some recent versions that I have come across
in my lifelong love and research of folk tales has the tortoise as a cheater,
setting things up like an illusionist, getting all of his relatives to wait at
different intervals along the race track, tricking the hare into thinking that
the tortoise is always in front of him, when really it is many different
tortoises working together as con artists.
In this version, the poor hare is the victim, just running along,
following the rules, unwittingly being tricked into thinking that he has lost
the race to the cheating tortoise.
That’s not the interpretation I grew up with, or that I
use. I wonder about this latest
interpretation, clearly favoring the hard-running loud, braggart hare. What does that say about the values of modern
society? About who is worthy of respect
and who is not? I have always seen the story as a race between an arrogant,
fast talking, fast moving hare, boasting about how great he is, and a slower,
but more organized and efficient tortoise, who has lived a long and wise life,
who knows that he doesn’t have to be the flashiest or the quickest thing on the
block in order to make it across the finish line. The hare, in his hubris, has no respect for
the tortoise. He is youthfully derisive
of the much older tortoise and is so sure that he can win the race without even
trying that he doesn’t bother to prepare for it and takes naps all along the
I loved watching my son win those card games.
No song this time. I
am working on one that starts, “I guess I’m more a tortoise than a
For anyone not familiar with Jewish Passover Seders (Seder is a Hebrew word that means “the order of things”, and is the name for the traditional ceremony that Jewish people perform every year on the holiday of Passover, which follows a specific order), there is an annual precious part of the Seder where the youngest participant recites what are called the four questions (really one question with four different answers.) The question is “What makes this night different from all other nights?” And the four answers relate to the ways that the holiday rules make the time of Passover unique and different from the rest of the year. It’s always a sweet time because generally the youngest participant has been practicing for the night for a while, and if they don’t collapse in a puddle of stage-fright, they generally get their first standing ovation and are often bitten with the “love of limelight” bug right then and there.
But this year of course, in the spring of Corona, Jewish people all over the world were struck by the obvious answer to that annual question of “What makes this night different from all other nights?” Well, everything really. For the first time in history, people everywhere are confined to their own homes, (not because of war), and what has always been a large extended family or community celebration, was now regulated to celebrating with whoever was in your immediate home. So in 2020, everything is different…including, thank goodness, long distance communication and the platform Zoom…how we all wish we had purchased shares in Zoom in early February!! So, many of us resorted to Zoom Seders this year.
What was not different I realized, was my pre-Seder anxiety. I had invited a few friends (who would otherwise have been celebrating alone) to join us on a Zoom Seder, with no intention of trying to do the post meal parts of the Seder (which are always a hotly contested issue anyway: every family seems to have members that feel that the Seder must be completed, even if it lasts until 1 or 2 AM, vs the members who are pragmatic and only interested in doing the symbolic Seder up until the part with dinner.) In the days leading up to the April 8 Seder I thought to myself that this year this would be a breeze, I’m not cooking for a huge mass of people, I don’t have to worry if my house is super clean and organized for an incoming crowd…we’ll just do a little bit of symbolic cooking, set the dining room table nicely, and call everyone on Zoom. What could be anxiety producing?
My son is almost 25. He has autism. That’s not new, so I am not still in the early stages of understanding and figuring out autism. I have had plenty of years to get my head around this, 25 to be exact. And yet, I am still amazed at the number of times that I forget about the profound affect that autism has had on all of our lives.
While I was fitting in preparing the Seder foods for our own family and a friend between my online music teaching, I was of course juggling (as I do every day) my son’s learning needs and confusion, exacerbated of course by now having all of his learning go online. He is a kinesthetic, visual learner who does best when he can see modeled what it is that he is supposed to be working on. All of that is out the window now of course. In the midst of my juggle, he and I started arguing about something inconsequential, which built and built in the way that only inconsequential things do (especially when they are masking something else underneath), until he screamed at me, “You’re always in a bad mood when you are preparing for Passover!” And I thought, though I didn’t actually scream it, “And you’re always in a bad mood ON Passover!”
Ah-hah…light bulb…we were both being triggered. Triggered by all the years of non-Zoom Seders when something out-of-the-ordinary-routine happened and set off a sensory overload meltdown. Unconsciously immersed in fear, both of us, of that impending meltdown. What caused the meltdowns? The list is endless, and anyone reading this who has Sensory Processing Disorder or is a parent of someone with special needs would have their own list, but here is my partial list: just being out of routine, traveling to family somewhere else in the country, sleeping in someone else’s house or a hotel, the big table full of family and people he might not have known, the cacophony of lots of loud cousins in echoey rooms, the rules of when to eat what, (there is of course that truly amusing memory of the year that someone set the bowl of hard-boiled eggs on the table next to where my son was sitting. We only noticed that he had neatly peeled and eaten 13 eggs – white part only, making a creative circle of yolks around his plate, when we got to the part of the Seder where we were all supposed to eat a hard-boiled egg, and of course there were not enough left for everyone), the endless waiting for the food to happen (asking in a loud voice, “Why do we have to sit around the table if we can’t eat?”), husband and I gauging the room…can we let him go and run around or find something else to do, is that going to be considered bad form, is he not going to want to do that because his cousins are all staying, etc etc? In short, trying to make him fit in to socially expected norms is what caused/es the meltdowns.
I have written in a previous blog about my son’s wonderful, admirable, enviable knack of being able to call out the elephant in any room that he enters. I love this ability of his, though of course there have been times that the conformist in me wanted to crawl under a rug when he said something particularly off-color by politically correct standards.
But this Wednesday, I breathed in, breathed out, thanked my son for pointing out my pre-Seder mood to me, and carried on the day with a little more understanding. (I also on the spot renewed my long-discarded practice of going out for a one-mile run, and it was wonderful!)
Evening came, we set the table for Passover, we connected computers and television screens to Zoom, welcomed all of our friends via Zoom, and helped a 90 year old guest figure out how to use Zoom, which was truly momentous (I only pray I have half of her mental capacities when I get to 90.) Instead of charging straight into the Seder, we did a check-in, asking each one to say a word or two about how they were feeling on this night when everything is out of routine and we are asking, “What makes this night different from all other nights?”
We all went around the Zoom room, and everyone was of course dealing with the Corona isolation in different ways, but thankful to be able to be together in this format, different as it was. When we got to our son’s turn, he said, “What makes this night different from all other nights? Everything! We wouldn’t normally have a TV screen on the table, and you would all be here with us. And truthfully, even though it is good to see you, it really feels lonely that you’re not here with us. That’s what I’m feeling. I want to feel thankful, but I just feel lonely that we can’t be with you and you can’t be with us.”
Nailed it. Called out the elephant in the room. Not politically correct. Not socially acceptable. But honest in just the wonderful way that he can be. In the Western world we are all trained to keep a stiff upper lip, always point out and focus on the positive, maybe just not mention the negative. As my mother used to say, “What good is it going to do you?” And there is definitely truth in that, vis a vis is the cup half empty or half full? But there is also tremendous need to acknowledge what isn’t great. And there is a lot not great about this odd time that we are living in, along with lots of silver linings.
We have long let go of the need to make our son fit in to every social norm that there is. (He’s also an adult, 25 as I mentioned, so even if I still believed that was important, which I don’t, I couldn’t make him anyway.)
Because my son was feeling lonely and sad that Corona was also impacting this holiday that he has had such mixed feelings about over the years, he decided that he wasn’t in the mood to sit there for the Seder part, and left to work on homework, cycling back in when we got to the hard boiled eggs. Where he proceeded to eat just one. Leaving the yolk on the side. No meltdown this year. What makes this night different from all other nights? Everything, and in some ways, nothing.
I shared this song back when I started this blog in 2016…time for a review! Not about Passover, not about Corona, but about the elephants in the room that neuro-typical people try valiantly to hide while non-neuro-typical people simply reveal. Happy Passover/Easter/Ramadan everyone. I hope everyone is staying safe.
Shepherding children to adulthood is a bit of a whirlwind. The school years are often one long race from morning ‘til night. But as any parent of both a neurotypical child and a child with autism can testify, there is great variance in the nature of whirlwinds… both my husband and I realized early on that our parenting style changes dramatically depending on which offspring we are with at any given moment.
Just a mundane example: Looking back at the 13 years that our neurotypical daughter, who is now 26, was in school, we dutifully appeared for the standard parent-teacher conferences and events where her teachers heaped praise on her. In contrast, during the 16 years that our son, who has autism and is now 24, was in school, we were there for IEP meetings multiple times per year for ongoing consultations with teachers and administrators multiple times per year, disciplinary meetings, emergency meetings, negotiations about behavior plans, and then of course those same parent-teacher meetings and events. Vive la différence! I was a virtual stranger to my daughter’s educators; I was a regular installation for my son’s.
I began my teaching career before I had children. I loved learning about the theory of multiple intelligences and different learning styles and used this information regularly as a music teacher. This background in education and child development certainly helped in parenting as well. As a disability advocate now, I often run into parents who honestly don’t know that their children’s development is different than what it should b, because they are not in a field that requires that knowledge. Having a background in education helped me identify early on that our son was wired differently, and that all those big books about the stages of child development did not actually apply. I knew we were in foreign territory, and I knew that I didn’t know what to do.
Our son is a poster child for multiple intelligences and different learning styles. I am eternally grateful for all the educators who have worked hard over the years to figure out how to reach him, encourage him and recognize his strengths. As a parent and educator in the world of special needs, I know both how difficult this can be and how essential it is. Along with these wonderful teachers though, there is sadly also an equally long list of educators who did or still do not seem to have any patience or desire to work with someone who’s learning style was or is outside of their comfort zone. Some were downright abusive, some just impatient, most (of this list) just could not figure out what his story was.
Fast forward: Our son is working very hard to finish art school, where he is studying hand-drawn animation. Art school has been an amazing blessing for our son. He has learned so much, and the school has mostly put up with his very unique learning curve. No complaints. Well…. maybe just one.
Not a complaint actually, just a plaintive wish. I so wish that anyone interfacing with students, of any age, would have some understanding of invisible disabilities like Sensory Processing Disorder and autism. Though there are certainly many people with autism older than my son, he is of the “tsunami” generation, when the numbers of kids diagnosed with autism exploded from 1 in 10,000 in 1970 to 1 in 1,000 in 1995…and of course the explosion has continued, because now, (depending on which office of the CDC you listen to), the numbers are either 1 in 39 or 1 in 58. The statistics for Sensory Processing Disorder are even higher, 1 in 6. Autism is no longer rare. Sensory Processing Disorder is everywhere. Mental Health departments on college campuses are expanding beyond any recognition of the mostly unused offices that they were in my time.
So, educators of any age need to know what autism looks like, beyond the dry words of description in the book. When my son verbally expressed his excitement on the first day of the semester’s drawing class, he did so in a way that seemed odd and not age-appropriate to the neurotypical professor. He then leaned over to compliment another student’s work, and the professor saw someone who didn’t seem to understand personal space. And then he dropped his metal water bottle a few times. Apparently, he also didn’t understand that the class was supposed to stand in two lines to show their work at the end of the day, and he was pacing back and forth waiting. In short, he was exhibiting signs of autism, and using strategies to help him process the sensory overload at the end of the day. And at the end of this class, as instructed by the Learning Support Office, he handed the professor his letter of accommodation explaining about his disabilities.
I only know all of this because, despite the letter, the professor reported to the department chair that he didn’t know what to do with my son because he was disruptive, and I was called in to hear that my son was being put on probation for the entire semester. What is the nature of the probation? That he is not allowed to make any noise on campus.
I am definitely convinced that the professor is doing the best he can with what he knows. I do not think bad of him. A classroom is a public space and growing up we all figure out how to conform our personal expressions in public so as to be culturally appropriate. My son needs to learn what works around neurotypical people and what doesn’t. Ableism is still around big-time. So, I’m not complaining, I’m just repeating my plaintive wish: I so wish that anyone interfacing with students, of any age, would have some understanding of invisible disabilities like Sensory Processing Disorder and autism. And of course, why confine this wish to educators interfacing with students? I so wish that people everywhere would have some understanding of invisible disabilities like Sensory Processing Disorder and autism.
In Item 2 of Sec. 12101 of the ADA Amendments Act of 2008, it says:
(2) in enacting the ADA, Congress recognized that physical and mental disabilities in no way diminish a person’s right to fully participate in all aspects of society, but that people with physical or mental disabilities are frequently precluded from doing so because of prejudice, antiquated attitudes, or the failure to remove societal and institutional barriers;
I love spring. I love the warmth, the sense of new life, the sense of rebirth after the winter. But for families with kids with special needs, like mine, spring is also a time of unique challenges: lots of holidays full of potential for sensory overload; lots of end-of-the-school-year events; the school year routine changes, and summer, though optimally a time for relaxing, is often harder to negotiate even than the school year, simply because the day-to-day schedule is so different.
Spring is also a time of graduations, and new chapters for many young people. So for those of us who have children walking a different path, children who are not necessarily able to graduate and move on into new and “exciting” life chapters, it is also a bit of a mine-field socially: you are excited and happy for your friends’ kids, and you have to be adept at side-stepping the small talk at graduation parties when well-meaning acquaintances ask the regular questions: “So what are your kids up to? Where is s/he going to college? What did s/he graduate in? Does s/he have a job yet? Where is s/he going to be living after moving out?” Etc etc….
Some of you know me personally, so you know that I am a musician that wears many hats, and with one of my hats I use music to present about disability awareness and inclusion. Over the years that I have been presenting workshops and concerts, I have found myself curious about how different religious texts speak about inclusion, and I have sometimes reflected these teachings in songs. Most religious and cultural frameworks teach some form of the “golden rule”- to treat others the way one would like to be treated by others. Simple right?
As legend tells it, Rabbi Hillel, who is believed to have lived around 110 BCE – 10 CE, was asked to describe Judaism while standing on one leg, and he is purported to have said, “What is hateful to thee, do not unto thy fellow man: this is the whole Law; the rest is mere commentary, go and study.”
So, not only is it a simple rule, it’s also the most important one…but it doesn’t take much to recognize that our world is not currently functioning according to this teaching, (and maybe never did?) Certainly the judgement, disrespect and manipulative abuse of people with disabilities and special needs is only a small part of this issue.
I ask myself regularly, why can’t we just treat others the way we want to be treated? I think, quite frankly, that we all have contradictory messages in our heads. On one hand, we know that we should be tolerant and compassionate, and on the other hand, we often have subconscious fears of people who are deemed “different” than us in some ways. And when someone has a “disability” as that difference, there is a pushing away that accompanies the fear.
But where does this fear come from? Well, along with the ancient texts teaching compassion, there are also multiple texts that imply that to be different is bad.
The Jewish holiday of Shavu’ot is coming up. Shavu’ot takes place 50 days after Passover, and originally celebrated the first harvest of barley. Over the generations it has also come to be a celebration of the Jewish people receiving the Torah at Mt. Sinai. A saying in Jewish teaching is that we should always behave as though we ourselves were standing at Mt. Sinai on that day long ago, part of the crowd that was present and happily accepting the Torah as a guide for how to live.
But there is a legend, a Midrash, called, “The Miracle that Happened to the Israelites with Disabilities When the Torah Was Given.”
(Hebrew below.) The Midrash tells the following story:
Many of the Israelites present that day had disabilities, possibly as a result of the hard labor that they had been forced to do as slaves under Pharaoh in Egypt. Some of them had been hit by falling rocks that broke their hands and cut off their legs. Some of them had been blinded by being hit with something sharp while building the pyramids. Some of them had lost their hearing by….?
God saw this and said “It isn’t fitting that I will give my Torah to people with disabilities.” So, what did God do? God called to the angels to come and heal the people with disabilities.
And how do we know that they were healed? How do we know that there was no one there who was visually impaired? Because the Torah says that everyone could see the voices.
And how do we know that there was no one there who was deaf? Because the Torah says they heard God speaking.
And how do we know that there was no one there who was missing arms? Because the Torah says, “We shall do.”
And how do we know that there was no one there who was missing legs? Because the Torah says, “They stood at the foot of the mountain.”
Oh my. Perhaps whoever wrote this Midrash was someone who thought that it was a gift that the Israelites with disabilities had been healed, because they assumed that of course no one would want to have a disability. Today of course there would be a scathing argument about whether or not a disability should be healed. Let’s put that aside, because likely the intentions there were well-meaning.
But to say that God did not think it was fitting to give the Torah to those with disabilities? I don’t think so. I do think though that this attitude has made its way into our thinking, way down in the shadows, where we cannot see clearly. By reading these kinds of ancient texts we have a wonderful opportunity to bring these thoughts out of the shadows and examine them in the light of modern day thinking.
So here is my Midrash for those with disabilities who were standing at Mt. Sinai with the rest of the Jewish people, waiting to receive the Torah:
Many of the Israelites present that day had disabilities, possibly as a result of the hard labor that they had been forced to do as slaves under Pharaoh in Egypt. Some of them had been hit by falling rocks that broke their hands and cut off their legs. God saw this and said “How wonderful that my Torah will be given to all of my people. Regardless of one’s cognitive ability or physical state, the Torah shall be for everyone.”
And how do we know that even those who were visually impaired were present? Because the Torah says that everyone could see the voices.
And how do we know that even those who were deaf were there? Because the Torah says that the noise was so loud that everyone could hear.
And how do we know that even those missing arms were there? Because the Torah says that everyone will do what is needed.
And how do we know that even those missing legs were there? Because the Torah says that everyone stood at the foot of the mountain.
For this Shavu’ot, as we remember standing at Mt. Sinai, let us remember that we were all there, able bodied and not, ADD and not, Autism and not, with mental health challenges and not, etc…, and we received the Torah all together.
For this very reason, I wrote this song, Beyond The Golden Rule…the first Hebrew chorus reflects the original Torah “golden rule”, to “Love your neighbor as yourself,” but I do think we need to expand who it is we are willing to be compassionate towards, so the second Hebrew chorus says, “Love the one who is different as yourself.” And the third? “Love the stranger as yourself.”
הנס שנעשה לבעלי המום בעת מתן תורה
בשעת מתן תורה כשיצאו ישראל ממצרים היו בהן בעלי מומים מעבודת הפרך,
שהיו האבנים נופלות עליהם ושוברות את ידיהם וקוטעות את רגליהם. אמר הקב”ה,
אין זה מתאים שאתן את תורתי לבעלי מום. מה עשה? קרא למלאכי השרת,
שירדו ורפאו אותם.
ומנין שלא היו בהם עיוורים? שנאמר: וכל העם רואים את הקולות”.
ומנין שלא היו בהם חרשים? שאמרו: “נשמע”.
ומנין שלא היו בהם קטועי ידיים, גדמים? שאמרו: “נעשה”.
ומניין שלא היו בהם פסחים, נטולי רגלים מפני שנאמר: “ויתייצבו בתחתית ההר.”
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.
I have often said that the most significant day of my life was the day that I heard the story of The Horse. The story’s premise is that it is pointless to judge events as good or bad, because what often looks good can lead to bad and vice versa, what looks bad often leads to good. The day I heard the story was the day I began to transition from childhood to adulthood, when I began to understand the difference between black/white thinking and an understanding of gray, of nuance, that there are events and relationships that won’t necessarily be resolved and totally clear in the time frame that I want. This story has influenced my approach to my art, to my career, to my relationships, to my parenting, to my understanding of politics and world events. It has also made me continually curious to see how one thing leads to another!
I was about 20 when I first heard the story, on a sunny winter day in Jerusalem, Israel, sitting in an olive grove with a group of Israeli and Palestinian friends. The storyteller was an older woman, a Holocaust survivor, Re’uma, a name she gave herself after the war. Her name means, “see the wonder.” Re’uma had been a teenager in one of the camps. She had lost her entire family, and was on her own in the camp, looked after by lots of other prisoners. An elderly Rabbi, an adopted grandfather, told her this story one day, and she related to us all those years later that it changed her life. She credits this story with her ability to survive the camps, not physically, but emotionally and psychically.
The story changed my life as well. As cliché as it sounds, I remember the light bulb going “ping!” I remember looking around at the group of us sitting there, all friends dreaming about a Middle East solution that would bring peace to the region and it’s people. I remember taking a deep breath, and recognizing that the road would be long, that there would be events that would look really bad on certain days, but that those same “bad” events would lead to new events, and that eventually we would find our way to something better. (This was some 30 odd years ago, and the Middle East conflict was actually a little LESS complicated than it is now…but I still have hope!)
This is truly a concept that I think of nearly every moment of the day. Knowing that what I judge as bad may just be the doorway to something wonderful has been able to keep me going in every aspect of my life. In my parenting, I have to apply this equally in my relationship to my neuro-typical child and my child with autism. In my professional life, there are always setbacks and then times when everything just seems to be clicking. And I’m sure the connection of this story to our current world state is clear to everyone reading this!
It often feels to me that people in the West are brainwashed into thinking that all days should be good ones, that life should be full of only pleasant events. It seems like people believe that having everything they want is their right, the way it is supposed to be, and that bad events are something to be ashamed of, something to be fought against. But we all know that life just isn’t like that, we’ve got good days and bad days. There isn’t a way to avoid the “bad” days, but there is a way to just roll with them, not fret about them, not add extra tension to an already bad day by being upset that the day isn’t going the way you want it to. It’s really hard to pretend that everything is fine when it isn’t!
When my kids were younger and would complain that they were in a bad mood, I would usually say, “That’s fine, you are totally entitled to be in a bad mood, but you still have to be civil to everyone around you. (Which is what I would like to share with various political leaders.) You don’t have to feel good to be kind. And just because you are having a bad day doesn’t mean that you get to pass that bad day on. But you are allowed to have that bad day.”
I am now at the stage of life where I am attempting to help my kids learn how to negotiate the professional world. There are so many things in the “professional” world that are truly hard to handle: racism, bigotry, greed, misogyny, manipulation for personal gain, backstabbing, and ego vs. teamwork, etc. etc. There are so many things in the “autism” world that are truly hard to handle: sensory meltdowns, family stress, being ostracized by the misunderstanding of surrounding people, coping with being different, being bullied, being labeled, being treated with condescension, being judged, etc. etc.
Teaching children resilience in the face of unpleasant events is crucial for any parent, but even more so for a child with special needs who’s starting point is one with so many more challenges than a NT individual. And guiding a young adult with autism into the professional world, where people aren’t always nice and don’t always have your best interests in mind is just one more training in the ways of the world.
I never saw the story The Horse printed until I wrote a song using the story, and went in search to see if it actually was a folk tale or if Re’uma had made it up. I discovered there is a version of the story in the children’s book, Zen Shorts by Jon J Muth, and in the picture book, The Lost Horse: A Chinese Folktale by Ed Young, in addition to many online retellings. I use this song regularly in my work with audiences of all ages starting from kindergarten-aged children.
Enjoy…. is it a good thing, is it a bad thing? We gotta wait and see what life will bring.
It’s dark outside these days in the northern hemisphere. No wonder that so many cultures and religions have winter holidays that celebrate with light. Diwali, the Hindu winter holiday, Hanukah, the Jewish holiday of lights, Solstice, celebrating the longest night and the return to light, Christmas, Kwanzaa, the African American winter holiday of community, and Chinese New Year, celebrated with lanterns and dragons breathing fire.
And of course, world events and politics seem to be reflecting that light/dark conundrum as well. Here in the US, people who are unhappy about the incoming administration are feeling that the world the way we have known it is coming to an end and we are entering another period of dark ages. People who are happy about the incoming administration are feeling that they are finally going to see the light again after eight years of their agenda being ignored. All around the world, there seems to be a fight between the forces of dark and the forces of light, but sometimes, like in Syria, it’s not even clear who is who since both sides seem to be perpetrating acts of darkness.
So what would be an act of light vs. an act of darkness? So many years of philosophy and ethics have debated this question, but in my little world, I work by a simple answer: an act of darkness is an act that harms another, while an act of light is an act that helps another heal. Of course real life is complex and it always seems like actions cannot possibly boil down to something that simple. So often the phrase “the end justifies the means” is used to explain everything from world politics to parenting to the use of pesticides and genetically modified seeds in agriculture to vaccinations to classroom educational policies to congress to the war on terror to how one teaches a child with autism to be in the world, etc….Personally, I question if a harmful means ever leads to a healthy end? I am sure I have friends who can cite me a list of examples from history, but ongoing world events make me more and more suspicious of actions that are harmful at the outset, and seem to lead to more harm with a snowball effect in world events.
I named my new project of disability awareness concert-conversations “But First Do No Harm” because that is what guides me when I am awake and conscious in my actions. That is what guides my parenting and my teaching and my performing when I am moving at the right pace to really think about what I am doing. That phrase complements the light/dark dichotomy: am I hurting this other individual, or am I helping this person heal? My world of autism parenting provides me daily, sometimes even momentary, opportunities to answer that question!
One of my favorite Hanukah songs is a song written in the late 1950s by an Israeli kindergarten teacher, dancer, composer and actor, Sara Levi-Tanai. It ties in with the Jewish book of ethics, Pirkei Avot, known as The Ethics of the Fathers (and the mothers I would add,) where it says: “In a place where no one is behaving humanely, try to be humane.” The song, though sung at Hanukah, is applicable all year round, saying, “We have come to oust the dark, in our hands the light and spark. Each of us is one small light, and together we shine bright. Go away deepest, darkest night. Go away, give way to the light. Go away deepest, darkest night. Go away, give way to the light.”
May we all shine the light for each other during these challenging times. And may we remember that shining the light in someone’s eyes really doesn’t help…it insures that they can’t see anything and causes them pain, and to feel fearful and angry. But holding the light up high, so that we can all see the way forward, doesn’t blind anyone, and eases the fear of each other, the unknown, and the dark.
Happy Holidays everyone. This song, Banu Hoshech Ligaresh, is from my 2009 CD, Shanah Tovah, Shanah M’tukah (A Good Year, A Sweet Year). May we all shine the light for each other during these challenging times.
Each year, in the weeks before Thanksgiving, I like to share a wonderful picture book called “Thanks For Thanksgiving,” (written by Julie Markes and illustrated by Doris Barette,) with my music classes. I created a gentle melody to accompany its lovely simple rhymes.
This year, one rhyme really stood out to me: along with numerous thanks for everyday things, on one page it says “Thank you for school, I love to feel smart; thank you for music and dancing and art.” As a musician and music and movement teacher, I always smiled when I sang those lines, and loved that the arts were highlighted in the book in this way. But this year I suddenly read this part in a different way: it suddenly hit me as the parent of someone with learning challenges.
I still remember my son’s excitement and enthusiasm about starting kindergarten. His big sister was already in school, and while he had gone to preschool, he was beyond thrilled to be embarking on this new adventure. We read lots and lots of picture books about what kinds of experiences he could expect as the normal fare of school life.
It didn’t take long for that excitement to fade. School wasn’t fun. He had a hard time following the teachers’ instructions. He had a hard time understanding what was expected of him. He had a hard time getting along with some of the other kids. He was laughed at and teased by other children. He got confused by all of the action. He got overwhelmed and didn’t know what to do with the adrenalin that was filling his body as a result of the anxiety he was feeling. And to my dismay, he very quickly concluded that he wasn’t smart. My heart broke for him. Within the space of a few months, he already knew that he wasn’t making the grade. His school years continued to be one long struggle, and unfortunately he walked around feeling unsuccessful. He had expected to love school, and he knew he was smart, until he went to school.
In my first few years as an educator, I had been lucky to stumble on a book called, “In Their Own Way,” by Dr. Thomas Armstrong, (http://www.institute4learning.com/bio.php/). It was the first of many books that I read that referenced Dr. Howard Gardner’s theory of multiple intelligences (https://howardgardner.com/). As a music teacher, I had already seen that each of my students excelled at something different, and each one struggled with something different. Everyone had their strengths along with the areas where they needed more help. Everyone was smart at some things and had to work harder at other things. So the theory of multiple intelligences was not a theory at all to me, it was the reality of being a teacher. But here was my own child not feeling smart L
As I sang this book to my music classes this year, each time I got to those pages I felt a jolt, remembering my son’s experiences throughout school. Every child wants to feel smart, every child wants to feel successful. I felt like I was receiving a loud reminder of how sensitive children are to teachers’ tone of voice and facial expressions. How, as a teacher, I can literally make someone feel smart or dumb with the bat of an eyelash.
But any educator knows that there are so many different ways to be smart!* We know that most disruptive behavior is a result of the pain that comes from a student not feeling smart. It took me years to understand that whenever my son was angry it was because he was feeling unsuccessful, not smart.
This little Thanksgiving book gave me a new reminder this year, that it’s not actually enough to know the fact of multiple intelligences: I have to actively show my students that I honor their intelligence, regardless of how it expresses itself. I have to let them know that there are different ways to feel smart. I have to tell them this over and over. I have to make sure that they know it as much as I do.
My song “Everyone’s Good At Something” is based on a story that George H. Reavis, Assist. Superintendent of Schools in Cincinnati, Ohio, wrote in the early 1940s. It is a story that is regularly used to motivate teachers to recognize the different ways that children can reveal their talents. It is also a reminder to teachers that when they don’t recognize a student’s talents they can do great harm to the person’s self-esteem.
My son struggled through his 14 years of school. He continues to struggle now in art school. But he gets up every morning and dives back into the fray. I am in awe of his spirit, that he gets up and keeps on pushing, no matter how hard it was the day before. And, most importantly, he is slowly starting to rediscover that he is, indeed, smart. Because everyone is good at something, and we don’t all have to be good at the same things. When we as parents and teachers realize this, we will be far more creative in nurturing each child’s natural smarts.
*It is impossible for me to write about this topic without mentioning a brilliant song written by Stuart Stotts, called, “So Many Ways To Be Smart.” This song is perfect for both students and teachers, and manages to share this very important topic with humor and simplicity. You can hear Stuart’s song on YouTube: https://www.youtube.com/watch?v=KX9rxoTI8ZI.
Many of us are hurting today after the Nov. 8, 2016 presidential election. We are scared and concerned. And we are looking at both a country and an entire world that is clearly expressing pain, anger and fear. Just like in the US political scene, there are so many countries around the world that have fairly recently elected new, extremely conservative governments, or have adopted separatist, divisive, exclusionary policies aimed at keeping out the “other.”
People who voted like me are in shock and afraid for what this means for the future. But at the same time that I feel exhausted and scared, I am very aware that this feeling that I have right now is likely the exact same feeling that those who voted opposite to me felt in 2008 and 2012….like the world as we know it has come to an end, and that the person elected to the office of POTUS does not and cannot represent me or the values that I hold dear.
But here I am, someone who strives to be an advocate for welcoming diversity and embracing inclusion. Someone who advocates for people to accept each other despite their differences. Someone who explains that autism is just like a different culture, and the same way that I would not mistreat someone because they were from a different religion or race, I must strive to understand, embrace, and include people with autism. Someone who strives to reach out to someone different than me, because at the very least we share the same humanity.
Last week I wrote about how my 21 year old with autism has been triggered over the last number of weeks by the bullying of the Republican candidate – how this has brought him back to lots of pain and anxiety from the bullying he endured throughout his school years. I know that many of us with children with special needs have been hard put last night and today to explain to these young people just what happened here in America. How come the bully won? How come the “good guys” didn’t win?
It’s so easy, so human, to divide people, to make things into the good guys and the bad guys. The people who are right, and the people who are wrong. Etc etc….we have all just endured months of a blistering election with just that tenor – us and them, whichever side you fall on.
But life, and people, are far more nuanced, at least a lot of the time! We don’t actually fall neatly into such well-defined categories. And this is something that I have worked long and hard to share with my son. It is much easier for him to see the world in “either-or” absolutes. I am forever speaking with him about the concept of “not but, and.”
Last week I wrote about “social-interaction difficulties” as one of the top signs of autism. Another classic symptom is cognitive rigidity. Life is black or white; there is no gray, no nuance, no place in the middle. No “and.”
So in many ways, it seems to me that our world right now, while experiencing a true crisis in the rise of the number of children that have autism, is also experiencing and expressing behavior that would be termed “autistic” by any therapist observing from afar. Rigid, divisive, black-white thinking. Afraid of change. Afraid of anything different. Afraid of the unknown.
I do feel the need today to put my actions where my mouth is. The world is divided between the folks like me who think that it is okay to disagree, that we can live together side-by-side even if we don’t see eye-to-eye. And about 50% of our world seems to agree with me on that. Then there is the other roughly 50% who say, “No, it’s either my way or the highway.” It seems that the two sides are incompatible, because while I may be willing to live with you despite our disagreements, if you are hell bent on telling me that your way is the only way, there isn’t exactly any room for compromise is there?
Ah, but that is where the parents and teachers and therapists and family members of people with autism come in. We all know what black-white rigid thinking is. We all know about someone being afraid of the new and different. We all know how hard it is for someone with autism to accept unexpected, unwanted changes. We all know how much someone with autism needs to be heard and understood, requiring us to listen in a new way. And we all know that there are ways around all of this. We all have experience in working things out.
The people that elected Trump have families and concerns and desires and values, just like me. They clearly see things differently than I do. That’s okay. We can work things out. We can listen to you, though it may require us to listen in a new way. We have to. We all have to widen our tent and make it truly inclusive. Not just for folks with disabilities. For folks who disagree with me politically as well.
Here’s a song called “Prayers.” For the hard days.