Category Archives: Blog

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….

 

 

He Didn’t Think He Could, But He Did….

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Well, he did it.  My now 26 year old son with autism graduated from Art School, with a BFA in 2D Animation.  The adventures and the learning were endless, and priceless.  He is someone who learns from doing, who understands reality through his experiences, and works endlessly to figure out what conclusions he should draw from life.  The ambiguities of typical American university life were a little crazy-making, and the journey pretty darn bumpy at times.  But he did it.  Including the Covid part, this latest experience shared by many 18-28 year olds, of going to university in your pajamas in your bedroom on zoom.  For someone who has a tenuous grasp of reality to start with, university during Covid sure didn’t help him stay grounded.

There were lots of moments when I questioned whether it had been at all fair to him to even encourage him to start this process.  It was all he wanted to do, art and animation have long been his passion.  But was it just too hard?  My friend Bob Blue*, an amazing educator, musician and songwriter who developed MS in his later years, wrote a song called The Little Engine That Couldn’t.  I’m sure many of you remember that inspiring little book from our childhood, The Little Engine That Could.  I do, and it was truly inspiring for me.  But the point of Bob’s song is that sometimes we are asking kids to do something that they actually can’t do, and no amount of perseverance is going to change that.

My son really wants to be neurotypical.  And no amount of perseverance will ever make that happen. He experiences autism as a curse, because in his eyes it makes him socially awkward and is the cause of his learning challenges.  He was angry with himself that all of his friends graduated in four years, “the way you are supposed to, like my sister and all of my cousins”, and it took him six years.  It was really hard for him to recognize how amazing it was that he was even at this incredibly well-respected art school, in a department that has produced many grads that go on to work in the animation industry.  Also a school that only 70% of the applicants get into, and has only 50% graduate in the typical 4 years.  So he was by far not the only one that took longer.

My wish for him is that he will accept himself, accept his autism, and learn to find the treasures that are hiding inside.  We’re not there yet.  As much as we try and support him and show him that his autism is part of why he is such an amazing artist, he frets about the things that don’t come easily.

And from that point of view, the college experience was pretty stressful.  Most of the institution didn’t seem to understand him as a person, and didn’t seem to understand autism in general.  From their point of view, they bent a lot to accommodate him and his lack of understanding of social cues. From my point of view….well yes, but that is of course what one does (bends and accommodates) to include people who are wired differently or who have different ways of accessing material and learning and life in general. You accommodate them because you understand that there are multiple ways to learn and maneuver life, not just one.  You admit them to your institution because you cherish the beauty that is created when you have a student body made up of vastly different perspectives.  It’s not a burden to bend and accommodate, it’s just what one does…according to me anyway.

There was no in person graduation ceremony because of Covid, but we were invited down to campus so that he could receive his diploma in person and get a picture taken with the president of the university. As we were waiting in line, maintaining physical distancing for Covid safety, a security guard was directing the line and letting families go in one at a time.  He saw my son, gave him a fist bump, and crowed a great big “Congratulations, my man!  You did it!  I am so proud of you, think of all of those afternoons you were hanging out with me thinking it was too hard, but here you are, you did it!”  Turns out they were on first-name basis.

We went inside, where a second security guard waited, and the same scenario repeated, but this time, she and my son were referencing a number of conversations they had had when he was feeling like he just couldn’t pull it together to go back to class, but with her support, he had made it through those particular days.  She pulled me aside and said, “He is so smart.  Part of his trouble is that he is way smarter and way more observant than everyone around him.  He notices things, and he cares, and most of the world just doesn’t.  He has such a beautiful heart.”  Wow.  It’s pretty rare for me to run into anyone that recognizes this outside of his immediate family.

We continued through the process, he got his diploma, and a third security guard came over to us, gave him a big hug and said, “Dude I am soooooooooo proud of you!  I am going to miss you so much!  Now that campus is opening up again, even though you are graduating, come and visit. You know where to find me.  If you need to talk to someone, just come on down.”

That’s pretty much when I lost it.  I kept it together externally in order to follow socially acceptable American protocol, but inside I was sobbing.

We left the building.  A line of professors from his department were standing there, to cheer each graduate.  We had heard them whoop it up for the student who had walked out in front of my son.  They called out a slightly tepid cheer for him, clapping politely.  Was it just me or was the restrained response a huge contrast to the hearty, genuine well-wishes of the security guards?

We have always noticed that he seems to find his angels, his protectors, the folks that get him and love him when so many others seem to recoil from him.  And he certainly did have angels amongst the professors and the original learning support team as well, they just didn’t happen to be there in that line-up.  On that day, it was the security guards who had his back, who were his cheerleaders.  They aren’t the ones that can write the letters of recommendation to prospective art jobs, but they definitely would if they could.

Thank you to his broader team of angels as well…many of you are receiving this…I hope you know who you are!

*Bob Blue’s website: https://www.bobblue.org/

– and the lyrics to The Little Engine That Couldn’t

THE LITTLE ENGINE THAT COULDN’T words and music by Bob Blue © 2005 Bob Blue

Have you heard the story about the brave engine
Who climbed to the top of the hill?
If not, please don’t worry; it’s told all the time,
So there’s still a good chance that you will.

There once was an engine (no, not the same engine)
That tried, but did not have success.
The more the poor engine kept huffing and puffing,
The less it could do it – the less!

In Engine School, this engine did all his homework
And tried to do well on each test,
Believing what all of his teacher had told him –
That all they required was his “best.”

The engine that could did so well in that school
That he rarely got worse than straight A’s.
His teachers believed that he studied so hard,
And they all gave him honors and praise.

The engine that couldn’t was not very happy;
He thought of himself as no good.
He didn’t know why Engine School seemed so easy –
Such fun, to the engine that could.

That’s why, when they needed a brave volunteer
For that awful, impossible climb,
He started repeating, “I think I can,”
Thinking he really could do it this time.

“I think I can” wasn’t so right for this challenge.
A much better mantra would be,
“I know I cannot,” since the hill was too steep,
Which one glance would let anyone see.

That “hill” was a mountain!  Last year they decided
To build a long tunnel – down low.
If anyone wants to go up to the summit,
The road is the best way to go.

The engine that couldn’t was still mighty good –
He had no trouble pulling a train,
As long as the places it went could be reached
Via good tracks, and level terrain.

If not, then this wasn’t the engine to use.
There were other ones built for the task.
If asked, it just might volunteer, so
I think it is better to simply not ask.

I don’t think whoever is hearing these words
Is a person in charge of a train.
For all I know, people don’t run them;
They’re run by computers, and hard to maintain.

The engine that could was a fine little engine.
I’m very impressed that he could.
But engines that can’t should admit that they can’t.
They would be better off if they would.

 

But engines that can’t should admit that they can’t.
They would be better off if they would.

 

 

Standing At Sinai with Everyone…

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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.”

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.

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!