Tag Archives: parenting

Sigh….The Bottom Line is Always Autism…

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The last blog I wrote was about my son’s graduation from Art School.  Now that he is done with school, his dream is to move to Hollywood, work for Disney, and become a famous animator.  In the best-case scenarios, there are people who listen to him expound on his dreams, kind of nod their heads and humor him.  In the worst-case scenarios, there are people who laugh at him and dismiss him as unbearably childish and unrealistic.  As a parent, I always want to encourage my children’s dreams, while also feeling a parental responsibility to help them recognize what reality looks like.  As an artist myself though, I know that reality is not always what it seems, and that you don’t get anywhere in the art world if you don’t dream big.  And anyway, who am I to say that his dreams won’t come true?  You make dreams come true moving step by step through the opportunities that either come your way, or that you help bring into being by networking and plain old hard work, (and of course a lot of luck of being in the right place at the right time.)

So, he took the first step to get himself closer to his dream, applied for a local summer art job that was posted on the job board of his college, got the interview, got the job, and was elated!  His first art job, and the first job that he had applied for straight out of college.  Things looked rosy.

His job coach checked in to see if she could help him out by doing some shadowing.  The supervisor assured her that that wasn’t necessary, that she had done all the training with him and that he did well and was succeeding at the job.  Things still look rosy.  He really enjoyed the job, was super proud of himself at the end of each day, though he admitted that there were some stressors and challenges that came up occasionally.

After a few weeks on the job, his job coach checked in again and was assured that not only were things going well, but this summer job could also likely turn into a year-round job because they always needed people who weren’t in school to stay on.  We all were breathing happily.  So nice when things look rosy.

Two days later he was fired.  It took four days to get the clear picture of what happened.  He was horrified at the initial reasons given, swearing that none of that had happened.  Eventually a different story emerged that he acknowledged had happened.  The final story was far less awful than the initial reports, and very questionable if these were grounds for being fired…the reasons given were definitely social mistakes, definitely reasons to speak with him and give him some feedback and explain that he had made poor decisions in those instances.  But to fire him?

Back story to the job requirements: the job was to take souvenir photographs for guests at a local recreation site (purposely being vague here).  The company emphasized over and over that it was of utmost importance to take as many photographs as possible as this was how they made money.  My son took that directive very much to heart and was very intent on taking as many pictures as humanly possible during each of his shifts.

So what were his breaches of protocol that led to him being fired?  One was that because of something that one of his team members was doing, which was out of their control but that wasn’t clear to my son, his job of taking as many pictures as possible was made harder.  So he was yelling at that team member to change what they were doing.  Not cool.  But no one gave him that feedback.  And he never realized that what he had done was not cool.  They just shut down the photo booth for the day and sent him home, citing a problem with staffing, but not actually telling him that HE was the problem with staffing.

If you don’t recognize a problem, you can’t fix it.  Or as he says, if I knew better, I would not have done that, so thinking “You should know better,” doesn’t ever help me know better.

The second reason that he was fired was a case of social faux pas: he was talking about scenes from Star Wars with a kid wearing a Star Wars shirt in a way that the parent didn’t like.  So the parent went and complained to someone.  But no one told my son directly that he should not have been speaking about these particular scenes; he was told that he had said something stupid.

When I finally got the full story, I can totally understand that a parent may have been upset about the conversation (apparently the kid was about 12 and my son was talking about some of the violent war scenes in one of the movies…why?  I have no idea.  I have never heard him talk about those scenes before.) I’m not sure that I would have gone to speak to someone else, I think I would have directly intervened in the conversation, but that’s just me maybe.

A major challenge for people with autism is not being able to read social cues.  Not being able to see that this child, or this child’s parent, was uncomfortable with the interchange. 

It may seem as though I am stating the obvious in these bold statements, but these things are obvious only to those who live in the world of people with disabilities, in the world of people who get confused by social interactions and struggle to follow social cues.  Part of why I do what I do, leading programs about invisible disability awareness, is because none of this is obvious to anyone who doesn’t live in this slice of the world.  While people know the word “autism” they don’t necessarily look at my son and think, “Oh, he just doesn’t know that this is not the way to work with other team members, or he just doesn’t see that he is making someone uncomfortable with the way that he is speaking.”  They just look at him and think he’s not okay.  And they may even be afraid of him.  He’s a full-grown guy who doesn’t seem like he understands how to speak with other people.

When we finally got the full story of the reasons that he was fired, my son was horrified at the way his behavior had been perceived and was so sad that he had made his team-mates unhappy and made guests uncomfortable.  He was sad that he lost the job of course, and humiliated that he had been fired, but more than anything he was horrified that he had made others uncomfortable.

He spends his days trying to understand the world.  I wish the world would spend some time trying to understand him and other people like him.

Bottom line that we all learned:  people with autism need a different kind of on-the-job training.  When a supervisor says that he has done well with the training, we need to then say, “that’s awesome, now how can we do some more training regarding the inevitable social situations that are going to come up in this job and cause some stress for someone who isn’t super fluid  with social interactions that are always full of surprises?”  He can do the logistics, he can learn the technical end of things, and that is wonderful.  And that makes people think that he doesn’t have a disability.  What he and others like him need are extra days of training about the social interactions, all of the surprises, all of the possible changes to the technical routine.  He needs role playing about the pace of the job, about what you do when someone gets impatient with you, how to read those social cues in the context of this job.

There is never a way to prepare for absolutely every contingency scenario, but there are definitely ways to prepare for many of them.  Here’s to more on-the-job training for future art-world jobs, whenever they appear.

And here’s the song Social Cues Blues…things my son has struggled with over the years….

 

 

A person’s right to fully participate in all aspects of society….

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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;

 


Sigh.

https://tacanow.org/autism-statistics/
https://www.ucsf.edu/news/2013/07/107316/breakthrough-study-reveals-biological-basis-sensory-processing-disorders-kids

Autism Awareness, Passover, Easter and Miracles?

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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

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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.

Banu Hoshech Ligaresh/We Have Come to Oust the Dark

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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.

 

Shanah Tovah U’Metukah – Questions for the New Year

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Tonight is the beginning of the Jewish New Year, Rosh HaShanah, 5777.  In the Jewish tradition, the new year is both a time of joy and a time of introspection, a time to reflect on what we have done with our lives in the past year, acknowledge areas where we have fallen short of how we would have liked to behave, and ask ourselves questions about what we want to contribute to our world and life in the coming year.  All of this is part of doing heshbon hanefesh (חשבון הנפש), an accounting of our soul.

Naturally, we all have different expectations of ourselves, and different ways of interacting with the world.  Part of my own process of becoming a parent, 25 years ago, was having to recognize that my children would not be carbon copies of me, would have different standards and expectations for themselves, different ways of finding their way in the world.  My job would be to guide and accompany, but not to require my children to mold or conform to my world view.  Over my years of parenting that has proven to be a tad more demanding and personally challenging than I oh so glibly and philosophically thought when I first happily became pregnant!

I find that one of the most fascinating aspects to parenting has been the questions that my children have asked, and as I wear the double hat of being both a parent to my own children and a teacher to others’ children, I have had the pleasure of also fielding many other children’s questions over the years.  The questions that we ask ourselves, or that we ask our mentors/teachers/parents, are windows into our soul. So the questions that my children ask always give/gave me a clue to what is happening in their souls, what is engaging them, what is worrying them, what is occupying their hearts?

On the eve of this new year, I reflect that we live in a time of many questions!  This is election season here in the US, and what a season it is.  Full of questions!  What kind of country do we want this to be?  One of inclusion, acceptance, tolerance, flexibility, welcome?  A country that acknowledges that we don’t all have to be the same?  That we can simultaneously accept, embrace and cultivate the beauty that results from people coming from different cultural heritages?  A country committed to providing equal rights for everyone?  Or a country that reflects and embraces the alternative to these values….?  I love the bumper sticker, “Think – It’s Patriotic!”  I would add to that, “Think and Question – It’s Patriotic!”

Looking at this country, and at my home country, Israel, it feels like an impossible task to right all of the wrongs and bring to life these values that I hold close.  So I always remind myself that change begins with me, in my soul, in my home, in my work, in my world.  And what is my world?  My world is a world of music and community and autism and special people with special needs, and very piercing questions!!

Autism is a different culture than the mainstream culture.  It is one more culture that must be embraced and accepted by the mainstream culture.  While it is fairly easy to identify different ethnic cultures by an individual’s dress or skin color, autism is often not immediately recognized by the observer.

In the world of autism, there are many questions to ask.  What causes autism?  Can it be healed?  Why are there so many children with autism now?  What’s going on that the numbers keep rising?  What’s with this ongoing controversy about vaccinations?  How do we encompass people with autism?  How do we help them figure out this world?  What changes do those with “typical” neurology (is there really such a thing?) need to make in their communication styles in order to include people with sensory processing disorder and atypical neurology?  (Those are just some of my questions….I’m sure everyone reading this can add questions of their own and I invite you to do so in the comment section!)

As both an educator of people on the autism spectrum and a parent of someone on the spectrum, I have to be open to asking the unspoken questions and to conversing with my son on his questions.  Throughout the years of helping him learn to negotiate the world, he has asked questions constantly.  So many of his questions were uncomfortable to answer, because he easily notices the flaws in societal expectations of behavior!  “Mom, why can’t I show my excitement and enthusiasm?  Why do I have to be quiet?”  Ah, good point…why is excitement and enthusiasm only allowed in sports arenas and rock concerts (and some political venues at certain times), and not in learning settings, where supposedly we want to enthuse our learners?

We need to keep on asking questions, and to keep on encouraging our children and their teachers to ask questions.  My son is now at art school.  He was accepted with a scholarship because of his art abilities.  He is a talented artist.  However, he speaks in pictures, not words, and maintaining verbal and written university level standards is a tremendous challenge for him, one that is not actually attainable at this point.  So one new twist on the question that I have had to ask throughout his life is directed towards the institutions that accept students with different learning styles:  are they accepted but expected to fulfill the exact same academic standards as everyone else in the school?  Or by accepting them, does the institution recognize that they are a different type of learner and can fulfill those academic standards in a different fashion?

Ask my son a question, and let him draw you the answer.  You will receive a deep, highly nuanced, thought-provoking response, that will provide you with information to continue the conversation.  Ask him a question, and require him to answer you verbally or in writing, and you will receive a potentially confused answer that will leave you wondering how to proceed in the conversation.

As an educator, I thoroughly understand the requirement for academic institutions to maintain standards.  I also understand the ability to be flexible and encompass different learning styles and neurological brain structures.  So the question I pose myself on this eve of Rosh HaShanah is this:  how can I help explain to the world that being different is wonderful, and that reaching out to the “other” in whatever fashion that presents itself, is a welcome challenge?

Here is a song I wrote for my son’s Bar Mitzvah…..full of his questions, and our attempts at answers 🙂  He was 13 at the time, and of course his questions are now different….but many of my answers are the same.

 

But First Do No Harm

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But First Do No Harm:  Yes it’s part of the Hippocratic oath, but it has also been the phrase that has guided both my parenting and my teaching, more or less successfully depending on the day!  It is also the name of my newest musical project, sharing “concert-conversations” about disability awareness and inclusion.

My devil’s advocate friends often ask me, “But everyone knows about disabilities, they don’t need you to make them aware.”  Yes, in principle, most people do know about disabilities.  They certainly know how to recognize someone in a wheel chair, someone with a physical disability.  But what about invisible disabilities , like ADD, ADHD, Autism (ASD), Learning Disabilities (LD)?  While people know about them from reading about them, they quite often do not recognize what they are looking at when they meet someone with one of these labels.  And they often do not understand the trauma and frustration that accompany those labels.  Or how those labels may have an impact on a child’s behavior.

As I have observed often throughout my life, a person with autism looks like anyone else their age, but when people start to talk to them, they discern something different.  But they don’t know what.  And the usual response is to move slowly away.  People rarely say to themselves, “Oh, s/he has autism.”  They more often say to themselves, “Oh, s/he is weird.”  Instead of moving away, an alternative response could be to think for a moment, “Oh, this person is different, I need to figure out a different way of conversing.  It’s okay that they are not like me, we can still figure out a way to communicate.”

How different the world would be if we did that with everyone we met throughout our days!  We might then not have xenophobia, or homophobia, or autism-phobia.  If we weren’t busy “othering” people, we might be able to have friends and acquaintances that are very different than us, and respect and appreciate differences rather than fear them.

Autism is very different than a physical disability…and first of all, is it even a disability?  Depends on who you ask.  Whether you think of autism as a disability or not will have a big impact on how you interact with someone with autism.  And whether you are one of those people who pulls away or leans in (not physically maybe, but with your intention) will determine what kind of conversation and respect you are showing the person with autism.

When my family and I first arrived in the United States, my son was 3 and a half.  He was mostly non-verbal, but understood and responded to two languages with no trouble.  Wherever we went in nature, animals seemed to gather, and not run away the way they would run away from me.  Deer seemed especially entranced by him.  Having just arrived from the Middle East, he was equally entranced by the deer.

As a musician, I sang to my children constantly, and he sang every song with me on key.  He could sing, but he couldn’t talk.  From the time he was born I knew that something was up, and had been trying to figure out how to help him without being scared by labels and diagnoses.  I wrote this song over a number of years, and it actually has a factoid that is now dated, that is no longer conventional wisdom about autism.  When I present it now, I ask the audience, “Do you know what is no longer true in this song?”  See if you can figure it out.

The name of the song is “The Deer Know Nothing’s Wrong”.  May we all learn that…..different is not wrong.

I look forward to hearing your thoughts!