Joanie Calem PD in Online Conference on te%

Sigh….The Bottom Line is Always Autism…

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….

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.

 

 

Type A Achievers Meet the Speed of Autism OR The Tortoise and the Hare?

Remember those early days of the Corona shutdowns, back in March?  Now many things are reopening, and it is almost hard to remember what we were experiencing back then.  Many of my friends had written about how the “shelter-in-place” rules had provided a welcome and most unexpected opportunity to have their adult children at home for an extended period of time.  Others bemoaned that their kids specifically chose NOT to come home, trying to be responsible, afraid that as millennials they were potential COVID carriers and might unknowingly affect their parents aged 60 and older.  Each family chose what worked best for them.  Our adult son with autism lives with us anyways, and since his university was closed, he is now living and learning and working all from his room.  Our adult daughter has a theater job where everyone was asked to work from home, so she chose to come home to us and work from here initially.  It has been years since we have all been under one roof for such a long period of time, and never under these conditions of course!

Our daughter is an organizer by nature, and immediately got busy organizing game nights.  No one had anywhere to go, and in those early days all of our work and deadlines were accompanied by huge question marks.  We hadn’t done game nights in years.  In fact, because our son’s learning disabilities make college work incredibly time-consuming, we probably haven’t played a game in at least the 6 years that he’s been in college.  And, because his work is also so all-consuming mentally, he didn’t remember any of the rules of some of the games we used to play.  No worries, now was the time to take a breath and review some of the life skills that he used to know how to do but has forgotten.  Not that playing a card game is a life skill, but it was reflective of the many things that have disappeared from his daily routines that we could now review.

So we retaught him the rules to Spit, also known as Slam, Speed, or Double Solitaire.  Everyone know that one?  You can google it if not, it’s a fun game.  But it totally favors people who think fast and move fast.  In other words, the type A personalities of the modern world.  The go-getters, the self-starters, the movers and the shakers, the leader types.  Our son does not move fast.  The other three of us do.  Seems therefore like a very unfair game.  But something interesting happened.

Each time we played, the three of us raced through the game, slamming cards down in their appropriate places as fast as we were physically able to.  Our son moved slowly, a little bothered by the fact that he couldn’t move as fast as the rest of us, but mostly just focused on his cards and getting his cards into the right piles.  And then, in every game, we reached a point where the three of us fast-movers were stuck.  We couldn’t move anymore cards anywhere, and we had to sit there, waiting for him to get through his cards.  But now he wasn’t racing against us, because we couldn’t do anything, so he could go at the pace that suited him, take his time, think quietly and comfortably about his cards and where to put them.  And the rest of us just sat there.  Four out of five games, he won.  All of our breathless racing was pointless.

I loved it!  What a silly, but significant, reflection of how the “meek” shall inherit the earth, (though my son is anything but meek.) As we sat there playing these silly card games, Corona had brought the world’s economies to a standstill, with all the wealthy powerful (arrogant?) nations in the exact same boat as less prosperous parts of the world.  Running faster wouldn’t make Corona go away, but stopping and staying put, inside one’s houses, might just work.  What a change of pace, literally.

I’m not sure that I will begin to play this card game any differently than I ever have, but those game evenings in the early days of Corona definitely made me question all the running I do in the rest of my life…and shown my son that being that slow and steady tortoise is not something to be ashamed of, despite his family members’ hare-like habits.

There are many different interpretations of the old Aesop’s tale about the race between the tortoise and the hare.  Some recent versions that I have come across in my lifelong love and research of folk tales has the tortoise as a cheater, setting things up like an illusionist, getting all of his relatives to wait at different intervals along the race track, tricking the hare into thinking that the tortoise is always in front of him, when really it is many different tortoises working together as con artists.  In this version, the poor hare is the victim, just running along, following the rules, unwittingly being tricked into thinking that he has lost the race to the cheating tortoise. 

That’s not the interpretation I grew up with, or that I use.  I wonder about this latest interpretation, clearly favoring the hard-running loud, braggart hare.  What does that say about the values of modern society?  About who is worthy of respect and who is not? I have always seen the story as a race between an arrogant, fast talking, fast moving hare, boasting about how great he is, and a slower, but more organized and efficient tortoise, who has lived a long and wise life, who knows that he doesn’t have to be the flashiest or the quickest thing on the block in order to make it across the finish line.  The hare, in his hubris, has no respect for the tortoise.  He is youthfully derisive of the much older tortoise and is so sure that he can win the race without even trying that he doesn’t bother to prepare for it and takes naps all along the race route.  

I loved watching my son win those card games.

No song this time.  I am working on one that starts, “I guess I’m more a tortoise than a hare…”

Musings After A Zoom Seder in an Autism Home – April 2020

For anyone not familiar with Jewish Passover Seders (Seder is a Hebrew word that means “the order of things”, and is the name for the traditional ceremony that Jewish people perform every year on the holiday of Passover, which follows a specific order), there is an annual precious part of the Seder where the youngest participant recites what are called the four questions (really one question with four different answers.) The question is “What makes this night different from all other nights?” And the four answers relate to the ways that the holiday rules make the time of Passover unique and different from the rest of the year. It’s always a sweet time because generally the youngest participant has been practicing for the night for a while, and if they don’t collapse in a puddle of stage-fright, they generally get their first standing ovation and are often bitten with the “love of limelight” bug right then and there.

But this year of course, in the spring of Corona, Jewish people all over the world were struck by the obvious answer to that annual question of “What makes this night different from all other nights?” Well, everything really.  For the first time in history, people everywhere are confined to their own homes, (not because of war), and what has always been a large extended family or community celebration, was now regulated to celebrating with whoever was in your immediate home. So in 2020, everything is different…including, thank goodness, long distance communication and the platform Zoom…how we all wish we had purchased shares in Zoom in early February!!  So, many of us resorted to Zoom Seders this year.

What was not different I realized, was my pre-Seder anxiety. I had invited a few friends (who would otherwise have been celebrating alone) to join us on a Zoom Seder, with no intention of trying to do the post meal parts of the Seder (which are always a hotly contested issue anyway: every family seems to have members that feel that the Seder must be completed, even if it lasts until 1 or 2 AM, vs the members who are pragmatic and only interested in doing the symbolic Seder up until the part with dinner.) In the days leading up to the April 8 Seder I thought to myself that this year this would be a breeze, I’m not cooking for a huge mass of people, I don’t have to worry if my house is super clean and organized for an incoming crowd…we’ll just do a little bit of symbolic cooking, set the dining room table nicely, and call everyone on Zoom. What could be anxiety producing?

My son is almost 25. He has autism. That’s not new, so I am not still in the early stages of understanding and figuring out autism. I have had plenty of years to get my head around this, 25 to be exact. And yet, I am still amazed at the number of times that I forget about the profound affect that autism has had on all of our lives.

While I was fitting in preparing the Seder foods for our own family and a friend between my online music teaching, I was of course juggling (as I do every day) my son’s learning needs and confusion, exacerbated of course by now having all of his learning go online. He is a kinesthetic, visual learner who does best when he can see modeled what it is that he is supposed to be working on. All of that is out the window now of course. In the midst of my juggle, he and I started arguing about something inconsequential, which built and built in the way that only inconsequential things do (especially when they are masking something else underneath), until he screamed at me, “You’re always in a bad mood when you are preparing for Passover!” And I thought, though I didn’t actually scream it, “And you’re always in a bad mood ON Passover!”

Ah-hah…light bulb…we were both being triggered. Triggered by all the years of non-Zoom Seders when something out-of-the-ordinary-routine happened and set off a sensory overload meltdown. Unconsciously immersed in fear, both of us, of that impending meltdown. What caused the meltdowns? The list is endless, and anyone reading this who has Sensory Processing Disorder or is a parent of someone with special needs would have their own list, but here is my partial list: just being out of routine, traveling to family somewhere else in the country, sleeping in someone else’s house or a hotel, the big table full of family and people he might not have known, the cacophony of lots of loud cousins in echoey rooms, the rules of when to eat what, (there is of course that truly amusing memory of the year that someone set the bowl of hard-boiled eggs on the table next to where my son was sitting. We only noticed that he had neatly peeled and eaten 13 eggs – white part only, making a creative circle of yolks around his plate, when we got to the part of the Seder where we were all supposed to eat a hard-boiled egg, and of course there were not enough left for everyone), the endless waiting for the food to happen (asking in a loud voice, “Why do we have to sit around the table if we can’t eat?”), husband and I gauging the room…can we let him go and run around or find something else to do, is that going to be considered bad form, is he not going to want to do that because his cousins are all staying, etc etc? In short, trying to make him fit in to socially expected norms is what caused/es the meltdowns.

I have written in a previous blog about my son’s wonderful, admirable, enviable knack of being able to call out the elephant in any room that he enters. I love this ability of his, though of course there have been times that the conformist in me wanted to crawl under a rug when he said something particularly off-color by politically correct standards.

But this Wednesday, I breathed in, breathed out, thanked my son for pointing out my pre-Seder mood to me, and carried on the day with a little more understanding. (I also on the spot renewed my long-discarded practice of going out for a one-mile run, and it was wonderful!)

Evening came, we set the table for Passover, we connected computers and television screens to Zoom, welcomed all of our friends via Zoom, and helped a 90 year old guest figure out how to use Zoom, which was truly momentous (I only pray I have half of her mental capacities when I get to 90.) Instead of charging straight into the Seder, we did a check-in, asking each one to say a word or two about how they were feeling on this night when everything is out of routine and we are asking, “What makes this night different from all other nights?”

We all went around the Zoom room, and everyone was of course dealing with the Corona isolation in different ways, but thankful to be able to be together in this format, different as it was. When we got to our son’s turn, he said, “What makes this night different from all other nights? Everything! We wouldn’t normally have a TV screen on the table, and you would all be here with us. And truthfully, even though it is good to see you, it really feels lonely that you’re not here with us. That’s what I’m feeling. I want to feel thankful, but I just feel lonely that we can’t be with you and you can’t be with us.”

Nailed it. Called out the elephant in the room. Not politically correct. Not socially acceptable. But honest in just the wonderful way that he can be.  In the Western world we are all trained to keep a stiff upper lip, always point out and focus on the positive, maybe just not mention the negative.  As my mother used to say, “What good is it going to do you?”  And there is definitely truth in that, vis a vis is the cup half empty or half full?  But there is also tremendous need to acknowledge what isn’t great. And there is a lot not great about this odd time that we are living in, along with lots of silver linings.

We have long let go of the need to make our son fit in to every social norm that there is.  (He’s also an adult, 25 as I mentioned, so even if I still believed that was important, which I don’t, I couldn’t make him anyway.)

Because my son was feeling lonely and sad that Corona was also impacting this holiday that he has had such mixed feelings about over the years, he decided that he wasn’t in the mood to sit there for the Seder part, and left to work on homework, cycling back in when we got to the hard boiled eggs. Where he proceeded to eat just one. Leaving the yolk on the side. No meltdown this year. What makes this night different from all other nights? Everything, and in some ways, nothing.

I shared this song back when I started this blog in 2016…time for a review! Not about Passover, not about Corona, but about the elephants in the room that neuro-typical people try valiantly to hide while non-neuro-typical people simply reveal. Happy Passover/Easter/Ramadan everyone. I hope everyone is staying safe.

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

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

Standing At Sinai with Everyone…

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.”

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.

 

 

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.