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.

Banu Hoshech Ligaresh/We Have Come to Oust the Dark

It’s dark outside these days in the northern hemisphere. No wonder that so many cultures and religions have winter holidays that celebrate with light. Diwali, the Hindu winter holiday, Hanukah, the Jewish holiday of lights, Solstice, celebrating the longest night and the return to light, Christmas, Kwanzaa, the African American winter holiday of community, and Chinese New Year, celebrated with lanterns and dragons breathing fire.

And of course, world events and politics seem to be reflecting that light/dark conundrum as well. Here in the US, people who are unhappy about the incoming administration are feeling that the world the way we have known it is coming to an end and we are entering another period of dark ages.  People who are happy about the incoming administration are feeling that they are finally going to see the light again after eight years of their agenda being ignored.  All around the world, there seems to be a fight between the forces of dark and the forces of light, but sometimes, like in Syria, it’s not even clear who is who since both sides seem to be perpetrating acts of darkness.

So what would be an act of light vs. an act of darkness? So many years of philosophy and ethics have debated this question, but in my little world, I work by a simple answer: an act of darkness is an act that harms another, while an act of light is an act that helps another heal. Of course real life is complex and it always seems like actions cannot possibly boil down to something that simple. So often the phrase “the end justifies the means” is used to explain everything from world politics to parenting to the use of pesticides and genetically modified seeds in agriculture to vaccinations to classroom educational policies to congress to the war on terror to how one teaches a child with autism to be in the world, etc….Personally, I question if a harmful means ever leads to a healthy end? I am sure I have friends who can cite me a list of examples from history, but ongoing world events make me more and more suspicious of actions that are harmful at the outset, and seem to lead to more harm with a snowball effect in world events.

I named my new project of disability awareness concert-conversations “But First Do No Harm” because that is what guides me when I am awake and conscious in my actions. That is what guides my parenting and my teaching and my performing when I am moving at the right pace to really think about what I am doing. That phrase complements the light/dark dichotomy: am I hurting this other individual, or am I helping this person heal? My world of autism parenting provides me daily, sometimes even momentary, opportunities to answer that question!

One of my favorite Hanukah songs is a song written in the late 1950s by an Israeli kindergarten teacher, dancer, composer and actor, Sara Levi-Tanai. It ties in with the Jewish book of ethics, Pirkei Avot, known as The Ethics of the Fathers (and the mothers I would add,) where it says: “In a place where no one is behaving humanely, try to be humane.” The song, though sung at Hanukah, is applicable all year round, saying, “We have come to oust the dark, in our hands the light and spark. Each of us is one small light, and together we shine bright. Go away deepest, darkest night. Go away, give way to the light. Go away deepest, darkest night. Go away, give way to the light.”

May we all shine the light for each other during these challenging times. And may we remember that shining the light in someone’s eyes really doesn’t help…it insures that they can’t see anything and causes them pain, and to feel fearful and angry. But holding the light up high, so that we can all see the way forward, doesn’t blind anyone, and eases the fear of each other, the unknown, and the dark.

Happy Holidays everyone. This song, Banu Hoshech Ligaresh, is from my 2009 CD, Shanah Tovah, Shanah M’tukah (A Good Year, A Sweet Year). May we all shine the light for each other during these challenging times.

 

How Truly Inclusive Can A Tent Be?

Many of us are hurting today after the Nov. 8, 2016 presidential election. We are scared and concerned. And we are looking at both a country and an entire world that is clearly expressing pain, anger and fear. Just like in the US political scene, there are so many countries around the world that have fairly recently elected new, extremely conservative governments, or have adopted separatist, divisive, exclusionary policies aimed at keeping out the “other.”

People who voted like me are in shock and afraid for what this means for the future. But at the same time that I feel exhausted and scared, I am very aware that this feeling that I have right now is likely the exact same feeling that those who voted opposite to me felt in 2008 and 2012….like the world as we know it has come to an end, and that the person elected to the office of POTUS does not and cannot represent me or the values that I hold dear.

But here I am, someone who strives to be an advocate for welcoming diversity and embracing inclusion. Someone who advocates for people to accept each other despite their differences. Someone who explains that autism is just like a different culture, and the same way that I would not mistreat someone because they were from a different religion or race, I must strive to understand, embrace, and include people with autism. Someone who strives to reach out to someone different than me, because at the very least we share the same humanity.

Last week I wrote about how my 21 year old with autism has been triggered over the last number of weeks by the bullying of the Republican candidate – how this has brought him back to lots of pain and anxiety from the bullying he endured throughout his school years. I know that many of us with children with special needs have been hard put last night and today to explain to these young people just what happened here in America. How come the bully won? How come the “good guys” didn’t win?

It’s so easy, so human, to divide people, to make things into the good guys and the bad guys. The people who are right, and the people who are wrong. Etc etc….we have all just endured months of a blistering election with just that tenor – us and them, whichever side you fall on.

But life, and people, are far more nuanced, at least a lot of the time! We don’t actually fall neatly into such well-defined categories. And this is something that I have worked long and hard to share with my son. It is much easier for him to see the world in “either-or” absolutes. I am forever speaking with him about the concept of “not but, and.”

Last week I wrote about “social-interaction difficulties” as one of the top signs of autism. Another classic symptom is cognitive rigidity. Life is black or white; there is no gray, no nuance, no place in the middle. No “and.”

So in many ways, it seems to me that our world right now, while experiencing a true crisis in the rise of the number of children that have autism, is also experiencing and expressing behavior that would be termed “autistic” by any therapist observing from afar. Rigid, divisive, black-white thinking. Afraid of change. Afraid of anything different. Afraid of the unknown.

I do feel the need today to put my actions where my mouth is. The world is divided between the folks like me who think that it is okay to disagree, that we can live together side-by-side even if we don’t see eye-to-eye. And about 50% of our world seems to agree with me on that. Then there is the other roughly 50% who say, “No, it’s either my way or the highway.” It seems that the two sides are incompatible, because while I may be willing to live with you despite our disagreements, if you are hell bent on telling me that your way is the only way, there isn’t exactly any room for compromise is there?

Ah, but that is where the parents and teachers and therapists and family members of people with autism come in. We all know what black-white rigid thinking is. We all know about someone being afraid of the new and different. We all know how hard it is for someone with autism to accept unexpected, unwanted changes. We all know how much someone with autism needs to be heard and understood, requiring us to listen in a new way. And we all know that there are ways around all of this. We all have experience in working things out.

The people that elected Trump have families and concerns and desires and values, just like me. They clearly see things differently than I do. That’s okay. We can work things out. We can listen to you, though it may require us to listen in a new way. We have to. We all have to widen our tent and make it truly inclusive. Not just for folks with disabilities. For folks who disagree with me politically as well.

Here’s a song called “Prayers.” For the hard days.

Is Addressing “The Elephant In The Room” a “Social-Interaction Difficulty?”

Google the “signs of autism” and the very first thing that pops up on most of the lists is, “social-interaction difficulties.” As I have had the privilege to live in different cultures, and as culture determines what kind of social interactions are deemed appropriate, I’ve long wondered about how hard and fast this determination of autism can be, since social rules vary greatly from culture to culture. This was extremely apparent when we arrived in this country in 1998 when my son was 3. While I am not disputing that my son has “social-interaction difficulties,” the habits that he had that were inevitably identified as social issues were actually cross-cultural issues.

He was born in Israel, where culture, and therefore social norms, has certain obvious differences from mainstream American culture. For one thing, people in the Middle East are more emotionally expressive than in the US. When you greet someone who you know and like, you hold their arms and kiss them on both cheeks. So this is how my son learned to say hello. That was immediately flagged by early therapists as a “social-interaction difficulty.” I tried to explain that he was just being friendly in the way that he had seen people be friendly…no go.

The list goes on and on…he was too animated when he spoke, he was too physical when he played, he stood too close to people. All true, but only a display of “social-interaction difficulties” in the West…none of those things ever stood out as problematic when we visited back in Israel. Different cultures have different rules. (Autism, as a culture, has different social rules too, but I’ll leave that thought for a different blog.)

Another way his “social interaction difficulties” have always expressed themselves have been through his tendency to talk freely about the “elephant in the room,” whatever the elephant happened to be on a particular day. I always felt like he had a radar sense when something unspoken was going on in a room. Therapists always felt that he was woefully unaware of socially acceptable conversation.

One thing I have learned from raising my children was that so many things in life are a case of and/and, not either/or. Yes it is important to think before we speak, yes it is important to consider other people’s feelings, and yes, often it is really helpful to be the one to be able to point out the elephant in the room. The act of stating the elephant in the room is not a “social-interaction difficulty” in and of itself. The sensitivity involved in social interaction and mature communication takes a lot of thought, and one needs to figure out whether or not each particular elephant should be pointed out, or not.

As we all know, we are currently living through one of the most bizarre presidential elections in American history. One candidate prides himself on saying whatever he feels like. He scorns “political correctness” and doesn’t seem to care who he hurts. Perhaps he thinks that he is doing a good thing by talking about all of the elephants in the room that he thinks no one else is mentioning. On the other hand, perhaps he never learned the lesson, which should precede talking about the elephant: that of thinking before we speak and considering other people’s feelings.

Educators and researchers have written numerous articles over the course of this campaign season about the effect this type of discourse has had on school children, and have watched in horror at what seems to be an uptick in incidents of bullying, racism and hate-speech in schools. Others have reported that people who have been bullied and abused in their life feel traumatized anew in watching a presidential candidate behave this way.

My son was badly bullied throughout his school years. In his inimitable manner of pointing out the elephant in the current room, he left me this voice message yesterday as he was on his way to college for the day: “Mom. I just want to tell you that I am really tired about Trump. He reminds me of all of those people that bullied me a long time ago. I know that I shouldn’t hold on to those memories, but it’s hard to let go, Mom, it’s hard to let everything go when something hurts you. Especially because he is a bully, it makes me remember being bullied and it really hurts. I’m sorry Mom; it’s just hard to hear things about Trump. I hope he doesn’t win Mom, because bullies shouldn’t win.”

That would be a case, in my humble opinion, of just one of the many elephants in the current room that should be addressed. Long live my son’s ability to name the elephant in the room. Because thankfully, he has come a long way in learning how to think before he speaks and consider other people’s feelings. In his case, naming the elephant in the room can no longer be considered a “social-interaction difficulty.”

 

Enjoy this song! Please tell me your thoughts!

Shanah Tovah U’Metukah – Questions for the New Year

Tonight is the beginning of the Jewish New Year, Rosh HaShanah, 5777In 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

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!