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.

 

 

Jewish Folk Tale: The Shepherd and His Flute

February has been designated as JDAIM, the Jewish Disability Awareness and Inclusion Month.  I have long mused how traditional Jewish folk tales and folk songs are rich with messages about inclusion, tolerance and refraining from judgement of another.  Clearly our ancestors knew that  there was room for all kinds of people in any community.  This is one of my favorite old stories.  It is here both in text and in a recording.  The recording includes a special treat that cannot be conveyed in the written piece!  Enjoy 🙂  The story can be heard online at https://www.youtube.com/watch?v=8pJ1ASMzut4

The Shepherd and His Flute – A tale of the Baal Shem Tov (Rabbi Israel ben Eliezer, 1698 –1760, Ukraine) – retold by Joanie Calem

Long ago, in a small shtetl in what is now Ukraine, where the famous Rabbi, the Ba’al Shem Tov lived, also lived a family of scholars.  The father of the family, Moshe, was the son and grandson of very respected Rabbis, and he himself was a well-respected teacher of Torah and Talmud.  And the mother, Rachel, was the daughter and granddaughter of very respected Rabbis.  Though many women of her time did not know how to read Hebrew or study the Torah, Rachel did, and she would read and study along with her husband at home.  Their home was always full of joy, full of learning, full of conversation, full of exploration, full of consideration of life and how best to live it.

Moshe and Rachel were blessed with five sons, and together they taught their sons the treasures of Torah.  When their eldest, Meir, was six years old, it was time to go to Cheder, to learn to read and write.  He said goodbye to his parents and his younger brothers, and he excitedly went off to school, eager to learn.  It was obvious right from the first day that he too would be a brilliant scholar.  He was a quick learner, and soon was able to assist the Rabbi in teaching the other boys.

Next came time for the second son, Menachem, to join his older brother in Cheder.  He too said goodbye to his parents and younger brothers, and happily joined his older brother in Cheder.  Sure enough, just as everyone expected, he was just as sharp a student as his older brother and his parents and grandparents and great grandparents.

Soon, the third son, Shmuel, was old enough to join his brothers in the Cheder.  Shmuel was a wonderful, sweet boy.  But his parents had a suspicion that he would not have the same experience in Cheder that his older brothers did.  And sure enough, as obvious as it had been that Meir and Menachem were going to grow to be brilliant scholars, it was quickly clear that Shmuel would not.  He wasn’t like his brothers: he couldn’t sit, he couldn’t learn his letters, he didn’t seem to be paying attention the way the other boys did, and he often would get up and walk over to the window, staring longingly outside at the trees and the fields and the clouds.

So Moshe and Rachel and the Cheder’s teacher realized that Cheder was not the place for Shmuel to learn and thrive and grow.  They didn’t know what to do, because all of the boys of the shtetl went to Cheder, and everyone in their family had always gone to Cheder.  But the solution came clear very quickly:  early in the morning, every day, the shtetl shepherd would come by to collect the community’s sheep and goats and cattle to take them out to the meadows and pastures around the village for the day, and then bring them back every evening.  Though Moshe and Rachel had never noticed before, Shmuel had a special friendship with the shepherd, and used to rise early every morning just to greet the man, and walk with him a bit.  Moshe and Rachel asked the shepherd if Shmuel could be his apprentice, and the shepherd was thrilled to have the young boy’s company and help.  And so , unlike his brothers and his cousins and everyone else in his family, Shmuel did not go to Cheder.  Instead, he spent every day in the fields and meadows learning how to be a shepherd.  Shmuel was thrilled.  He loved the animals, he loved being outdoors, he loved being with the shepherd, and he loved learning how to play the flute, which the shepherd taught him as they sat for many hours every day with the flocks of animals.  Shmuel always felt that he was praying as he played his flute.

In time, the two youngest brothers, Simcha and Yitzchak, were also old enough to go to Cheder, and they joined their oldest brothers, and showed that they too would soon be star scholars.  Moshe and Rachel were proud of all of their sons in Cheder, and of course loved Shmuel dearly, but worried about him in a way that they did not worry about the other four boys.

As each of the boys grew, they reached Bar Mitzvah age, and Meir, Menachem, simcha and Yitzchak all led the prayers of the congregation on their respective Bar Mitzvahs beautifully.  Shmuel did not, but instead quietly celebrated his Bar Mitzvah playing his flute in the fields.  For him, playing the flute was praying.  He always felt that he was talking with God as he played his quiet tunes.

When Shmuel was about fourteen, the old shepherd decided that it was time for him to stop going to the fields with the flocks, and Shmuel became the official shepherd for the village.  It was bitter-sweet of course for Moshe and Rachel, they were proud of their son, but it was never what they would have dreamed for one of their children.

Now, all of these years, there were two days every year when Shmuel would not take the flocks to the fields, on Rosh HaShanah and Yom Kippur.  On th.ose days, he would join his grandfathers, his father and his brothers in the synagogue, where everyone would gather to join the Baal Shem Tov in the holiday prayers.  Every year Shmuel sat quietly, unable to speak the words of the prayers, unable to read.  He loved the melodies of the community praying around him, but as the years passed, he felt sad that he couldn’t join in.

One year on Rosh HaShanah, Shmuel was sitting with his family as usual, in the midst of the prayers, and he happened to look up at the Baal Shem Tov.  As the prayers were being sung all around him, Shmuel again longed to join in.  He noticed that the Baal Shem Tov seemed to look concerned.  Shmuel sat and wondered what he could do to add his voice to the prayers of the community.  His hand went to his flute in his pocket, and at once it was obvious how he could join in.  He pulled out his flute and began to play a beautiful melody that wove harmoniously with the prayers of the congregation.  He played with all of his heart and all of his soul, so happy to finally have found a way to participate in the community.

But the community stopped their praying, and a sound of shock and horror went through the room.  Suddenly, men were shouting at Shmuel to stop, shouting at Moshe, Shmuel’s father to stop him, shouting at the Baal Shem Tov to stop him.  Moshe rose to reach out and grab Shmuel’s flute, but the Baal Shem Tov reached them first, and, putting his hands on both Moshe and Shmuel’s shoulders, the Baal Shem Tov said, “Finally, our prayers will truly reach Heaven as a full community, because Shmuel has joined us with his pure love, joy and devotion.  We needed his voice in order for God to hear all of us.  This is how he prays, and though it is different than our prayers, it is wonderful.”

The rest of the congregation bowed their heads, acknowledged their mistake, breathed deeply to accept this new idea, and after a few minutes, returned to their prayers, letting their melodies intertwine with Shmuel’s flute.

“First Day Butterflies” or “First Day Angry Dragons” in Your Belly?

Young people all over the northern hemisphere are starting back to school at this time. Locally, some school systems started last week, some this week, some next week. My 22-year-old son, who has autism, is going back to his third year at art school….and feeling anxious about the new beginning, to say the least.

This morning, I received a notice from the blog published by the Children’s Music Network (https://childrensmusic.org/), about a sweet song that my friend Dorothy Cresswell had written, called “First Day Butterflies.” http://blog.cmnonline.org/2017/08/22/first-day-butterflies-by-dorothy-cresswell-on-tuneful-tuesdays/

I was so touched by Dorothy’s song and the stories of how she would greet her new students on the first day of school that I found myself with tears in my eyes. And I stopped to wonder why I was having that response. As I was wondering, my son came dragging into my office, breathing heavily, a look of deep sadness on his face. Ah, of course, I thought to myself, this is why: he doesn’t have “first day butterflies,” he has “first day angry dragons” that are raging around in his belly. And they don’t flare up just the day before the first day of school, they flare up anywhere between a week to three months in advance. Would that there was someone like Dorothy greeting returning college students to campus on the first day back to classes each semester.

Every new beginning brings on a fresh wave of anxiety for many people with autism. No matter how many times my son has done something, no matter how familiar the place is – getting there again, starting something again, walking into a room with other people AGAIN, still brings on waves of anxiety.

I am in awe of the courage he must muster every day to get up and go out and face the world again. Negotiating the vagaries of social interaction is exhausting for him. He tries and tries to get it right, and so often is shunned and excluded because he just doesn’t hit the culturally accepted mark of social interaction. Though he regularly reviews what the “right” thing to do is before he leaves the house, when he is out in the world trying to function, he often gets flustered and confused and his responses come out messy. And people are not very forgiving it seems when someone comes across as odd.

Anxiety is a huge part of both Sensory Processing Disorder and Autism. When your senses are not reliably delivering information to your brain, you feel very unsure of the world. As you get older, you hopefully develop some strategies and some experiences that let you know that all will be well in the long run. But unfortunately, for my son, all isn’t always well, and the confusion of trying to manage social interactions when you haven’t had a lot of success in the past just exacerbates the anxiety.

Current statistics place Sensory Processing Disorder as affecting one out of six school age children in North America, and it is probably similar numbers in other parts of the world. That is a lot of people who are struggling to handle the world with “angry dragons” in their bellies. I always thought butterflies in my belly were bad enough, but I know that the intensity that my son experiences is far harsher than any kind of “first day butterflies” that I ever did.

So to all of the educators out there, thank you so much to those of you who know how to help children over their “first day butterflies.” Let’s all be aware that some people have “first day angry dragons,” and let’s be kind, patient and tolerant when someone’s responses are a little different. Perhaps they are in the midst of battling a dragon.

 

In Honor of Autism Moms: Motherhood

It happens regularly: I am performing for a group of families, singing and dancing and genuinely having a great time with everyone. The room is full of children’s laughter and song and unabashed joy. Wow, I think, I have the best job in the world, playing music and making people happy.

And then there’s always one kid, with a very tight look in his/her eyes, who just seems to be on a different wave-length, not quite noticing other people’s space, not quite noticing his mom’s pinched face, not thrilled with the number of times she comes over to stop him from somersaulting off of a chair, or doing handstands in the chair, or twirling around so enthusiastically that he smashes into a little girl who was busy dancing as well. Not able to sit still, not able to find a comfortable place in the room, not quite at home in his skin…

The poor mom, I think. How can I let her know that I get it, that I see, that I know that he has Autism, that I know what life is like at home, that I know how much she wants him to have fun but how scared she is, maybe even terrified, that he will hurt someone unintentionally? I want to give her a hug, stop the music, just let her know that I for one am never going to judge her or her kid, because I have been there so many times. I do catch her eye as she careens past me to catch him before he dive bombs off of the chair, and I whisper mid-song, “It’s ok, he can move, he’s responding to the music and it’s fine.” And I do honestly mean that, because I notice how he actually is making sure that he isn’t near anyone else after he nearly knocked that other little girl over. And he is very engaged in my songs, asking me questions at appropriate moments before he dances off again.

But the poor mom. She just looks exhausted as she gives me a quick smile on the verge of tears. Is that what I looked like when my kids were younger, I wonder? I know that was what I felt like for so many years. That mixture of desire for my kid to experience the ease of childhood that other children seemed to have that eluded him on the one hand, with the terror that he would do something inappropriate, odd, and draw attention to himself and hurt someone else on the other hand. The desire to just be able to take him to the same events that other people’s kids went to, that my other kid could go to on the one hand, mixed with the fear that something was terribly amiss with my kid on the other hand. The frustration of not understanding why simple things seemed to send him into overdrive while the other kids could continue at play.

Motherhood (and fatherhood for dads as well I am sure) is a journey for everyone, no doubt. All children have their ups and downs, all children have times of more or less need, and all parents have the same. But Autism moms have a journey that is just a little different than the experience of mothering a neurotypical kid.

I have one of each…one neurotypical child, one with Autism. When our son started high school at the school our daughter had just graduated from, I told the staff that they really needed to work with us as though we were a family that they had never met, because how we parented our daughter vs. how we parented our son made it look as though there were two different sets of parents involved. In her four years at school, we were there for parent-teacher conferences and celebrations. In his four years, we were often writing daily emails, in and out of the school weekly, on the phone a few times a month. They got to know us quite well! In college, we went with her to accompany her at the beginning of freshman year, to pick her up at the end, and then for a few plays and graduation. He is in his second year at Art School, and we have already had three meetings with the Dean…. learned about policies that I never knew existed, etc.

We have many friends who no longer stay in touch with us. Might not be anything to do with being Autism parents, but on the other hand, these same friends would often comment on how intense we had become, how we seemed to have lost our zest for life, how we were really a little too involved in the parenting thing, how we were too overbearing in how we were raising our son. There wasn’t much I could say, except quietly acknowledge that they probably would never understand because they would never have to walk in my shoes. They probably didn’t know what it was like not to sleep through the night until he was six, or how just getting out of the house with everyone in one piece could be a massive energy-drain, or how every day was one of waiting for the meltdown to happen, or how a new MD would wonder why you showed signs of PTSD but had never been in active combat, or….or….or….If you have a child with Autism, you will likely have your own examples!

I can’t usually stop a performance to tell a mom that I recognize as an Autism mom that I get it and give her a hug. I also never know if her kid is diagnosed, if she would welcome the recognition, or if she is still fighting to keep that diagnosis at bay. I don’t know if I would make her feel good or devastated. I can of course just give her a smile and a hug in recognition of all that she is doing, without any specific reference to Autism, and that I do on a regular basis.

Here’s to the Autism moms and moms of kids who are the non-conformers, who don’t fit the expected molds. We are a fierce and loving bunch. We are the mama bears. We will not let someone dis our kid on the one hand, but on the other hand we work hard to keep our kids moving forward out in public. We know that society’s judgments are unfair on one hand, but we want our kids to be able to handle being in public on the other hand. We want our kids to grow up to find their way in the world, just like every mother, and we have discovered that in order for that to happen our kid might need a little different kind of parenting than the neighbor kid next door.

Here’s a virtual hug to that mom at today’s performance. And here’s a song called, “Motherhood.” A little late for Mothers’ Day, but better late than never J. This is for all moms everywhere, with a special hug for Autism moms.

Is It A Good Thing, Is It A Bad Thing?

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.

 

Banu Hoshech Ligaresh/We Have Come to Oust the Dark

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.

 

We All Love To Feel Smart

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.

 

How Truly Inclusive Can A Tent Be?

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.