Finding My Passion for Teaching

Dear Phoenix,

There is a certain kind of giddy I get when I think about the students I teach.  Every one of them brings to me a renewed sense of the world around me.

When I first started teaching, I worked as an after school music tutor.  After a few sessions, I knew that teaching was misunderstood as a profession in the United States.  This certainly was not a job for “those who can’t.”  Curious on how I could expand my approach, I started the way all of us did before there was google – I asked more experienced teachers for advice.

One afternoon at Waffle House (a cheap diner in Atlanta that was the frequent meeting place before Starbucks arrived) I met with a teacher whom I had respected for many years.  I listened as she complained about difficult students, red tape, problems with parents, and lack of resources.  She had recently retired and was excited about walking away from nearly 30 years of teaching.  At the end of our talk, I asked her if she had any positive advice for me as a new teacher.  She said, “Children are empty water glasses, and you are the water pitcher.  It is your job to fill all the glasses and keep them full until they leave your class.  That is all you can do.”

I thanked her for her input, left Waffle House, and cried all the way home.

How was it that teaching was seen as an exhausting, one way dump of information, and children were seen as empty?  True, I may have over-extended the analogy as it applies to most others, but in this scenario it seemed accurate.  To this teacher, her work was not much more than just an assembly line.  Fill them with facts, most likely by rote, make sure they retain it, and then move them along.

I carried this experience with me for many years, and backed away from teaching.  Being only 16 years of age I had not completed my own education, much less had the experience to know why her water glass analogy bothered me so much.  I knew it didn’t feel right, but I had no way to articulate an alternative approach.

It wasn’t until I re-united with my mentor some years later that I was able to understand what I wanted to do as a teacher.  My mentor, Ms. Stefanie, had been diagnosed with cancer and wanted me to step in as her substitute teacher.  I had been removed raising 2 young children, my first child born when I was 21 years of age, which took up most of my time.  But I did have the occasional student or two that came to my home for lessons.  Despite my withdrawal, Stefanie reached out to me to support her and her students.

We met at a local pasta and pizza place near her home,  Bounding with excitement over getting to visit with my favourite person on earth, I found it difficult to focus on anything.  In fact, I got lost on my way there because I started to daydream instead of following the mapquest directions I had printed out.

The conversation started like we had just seen each other yesterday.  We laughed and reminisced about my early days as a student with her.  We talked about my children which she carefully made segway into a discussion about my isolation.  I told her I missed music, but I have a feeling she already knew.  She made her proposal about teaching for her, and seemed confident that I was the right person for the job.

My mood fell.  I was juggling feelings of inadequacy and questioned her faith in me.  I shared with her the water glass analogy I had heard when I was a teenager and how much it bothered me.  She stayed positive and calm, and gave me the reassuring smile that said everything was about to get better.  Then she said, “Laura.  You think about everything on your own terms, and through your own eyes.  Why should this be any different?”

She gave me a few moments to digest what she had said.  Then, she gave me the most powerful piece of advice in my teaching career.  She placed her hand on my shoulder and said, “You need to come to the city and teach for me.  This way the students can remind you why you love music, just as you did for me.”

In two sentences, my entire perspective on teaching was unbounded.  The water glass analogy had bothered me so much because it was one way and removed of passion.  I saw students as learning partners.  I would be learning as much from them as they would from me and in that exchange, we would both feel a deep love for music. Though Stefanie succumbed to cancer shortly after that conversation, I can relive it in my imagination as though it happened yesterday.

As I enter my 25th year as a teacher, I continue to stay true to Stefanie’s words.  Each lesson is an exciting adventure with the student, sharing our love and passion for music.  I share everything I know and everything I am, placing myself in a state of vulnerability, rather than authority.  In that moment, when the student connects with me, it is then we both realize life has a soundtrack and we are playing along.

Until tomorrow,

Laura (snamuh)

The Story Behind – As the Ice Speaks

Dear Phoenix,

I have been thinking about my students today, wondering how all of them – past and present – apply what they learn in music class to life.  It never occurred to me that my students got anything from lessons other than learning the instrument until I got the opportunity to observe a friend working with his students.

It was my first time observing teaching in the sports venue, and honestly it was one of my first hockey games.  The ice has a particular energy that stadiums and fields lack.  As if the life giving qualities of water speed up and push upward from the ice.

The players hit the ice, and the music started to flow.  The harmonious melodies of the the players indicated they were more like a family than teammates.  Music gently journeyed to my ears, despite the intense energy of the game itself.

As my gaze shifted over to the coach, his shadow song rose up but never overtook the melody of his team.  Like the flower to the butterfly the coach’s energy fed the players.  his melody supported theirs.

It was stunningly beautiful.  As the ice spoke, the players bonded and the coach pushed forth his energy out of pure love for the kids.

When you listen to this piece, see if you can find the ice speaking, the players song and the coaches melody.

As always, I am grateful for your autism energy, my dear Phoenix.

Laura (Snamuh)

 

Presuming Parental Compentence

Presuming Parental Compentence

Dear Phoenix,

I am getting ready to talk about us at a conference in San Diego next month. As I was scanning my past presentations, I realized that the gap between parents and teachers are growing, and neither of them are to blame.

A quick scan of therapies for Autism, and articles on special education, so much on parental incompetence can be found. Primary caregivers are crucial in a child’s development, this we know, but the bulk of research seems to center on what caregivers do wrong. It’s frustrating to see so much weight on parents. It is not uncommon to hear about an apprehended murderer on television followed by a chorus of judgemental voices blaming the murderer’s upbringing. When a 4 year old fell into the gorilla habitat at the Cincinnati Zoo,a petition was set up to criminally charge the mother for not paying attention to her son. These “blame parents first” types are ignoring the fact that the enclosure built in 1978 was never updated, or that sometimes toddlers are swift, and agile with no inhibition and can get in through spaces we adults consider impassable. It was tragic, and has sparked investigation of zoo enclosures, but we can’t jail parents every time we are upset about the outcome of a tragedy.

This mentality doesn’t stop with a toddler. Famous criminals gain sympathy from a public that blames their mothers. Andrew Solomon of the Daily Beast puts it in the best words when he said, “To be or to produce a schizophrenic or a child with Down syndrome is generally deemed a misfortune; to be or produce a criminal is often deemed a failure.”

Not only does this mentality of blaming the parents empower the criminal motive, but it ignores the concept of free will. At some point, as people, we make our own decisions about who we are, what we will do, and what rules we wish to follow.  And this can occur well before the accepted age of adulthood.

With a special needs child, even though the public seems sympathetic to the parents, almost to a fault, it is the medical community that paints the blame picture.  Though sometimes this blame is placed inadvertently, it is still much of what frames parental competence.  When I was investigating supports for my daughter who struggles with anxiety, I came across a book that was touted as a best seller.  In this book, the author talks about childhood circumstances that lead to anxiety, and all of them blamed the parents.  Now I am not stating that parents are free from blame.  There are bad parents, and even the best parents can make terrible mistakes.  However, there are plenty of anxiety causing stressors caused by outside influence in childhood.

My mother and me, 1979

When a child is diagnosed with a disability, the “intervention industry” is focused on alleviating the parent’s fear and sense of panic.  Because of the uneven weight on parents to be everything for their child, early interventions are often the result of an intellectual parti pris.  Particularly in American society (speaking only from the point of view where I have experience) we expect parents to be flawless, self-funded, self-educated oracles that reserve anger and love to a fault.  This is more than most people expect from their god, as even gods get angry.

As a result, parents become chauffeurs and waiting room ornaments as their children are shuffled from therapy to therapy.  Uninvited parents become uninvolved parents, falling behind the potential progress of their children.  That is until their children are dumped in their laps as soon as the child becomes a behavioural issue, or at age 18 when funding is no longer available.

Parents then return to a panicked state, which is usually when I get calls.  As a self-advocate, I receive dozens of emails a year from parents who have no clue what to do next for their aging special needs child.  They ask me for guidance, and want to know details to the most intimate levels, having no idea where to turn.  What many would see as a severe invasion of privacy, I see as loving parents just wanting to do the right thing.  True, they don’t want to be blamed, but more over, they don’t want to do wrong.

Bad parents are out there, people who just don’t want their kids.  It is tragic, but we cannot frame all parenting by the bad ones.  We must start presuming competence in parents.  As therapists and teachers, we get the benefit of a controlled atmosphere, and the education to frame the situation more clearly.  But parents come in blind, and must carry out therapies at home with hundreds of unexpected interruptions.  A telephone call from a school, accidently burning dinner, a broken water heater, or sudden illness are just a few of the unexpected events that can occur at home.  As teachers or therapists, we can simply cancel the appointment when we are overwhelmed by life.

So what can we do?

  1. Presume competence in the parents as tandem learners along side their child. Train parents how to be in a room during therapy, when to intervene and when to sit back.
  2. Teach parents to not excuse, apologize for, or over explain a child’s behaviour.  Awareness is informative, not apologetic.
  3. Tell parents that mistakes are inevitable, so admit to it and work on improving.  Mistakes don’t always leave scars, sometimes they just leave stretch marks.
  4. Empower the parent/teacher relationship, where they are a team and not servants of one another.  Tension between parents and teachers only benefits the politicians who need excuses to over-regulate and restrict innovative approaches.  Money can only be made with regulations, not with free choice.
  5. Did a parent’s DNA cause their child’s disability?  Most likely.  But it also caused their eye colour, hair type, and gave them hands to explore the world with.
  6. Parents – you’re going to need help, disability or not, so get over it.
  7. Teachers – kids have parents who live with the kid 24/7, cleaning up vomit, loving them when they act like little assholes, losing sleep, and giving up tons of freedom.  You get to send them home at the end of the day, so unless you are adopting you’re entire class for the rest of their lives, deal.
  8. Doctors – Want to do research?  Want to find a cause? Fine, but lab rats bite.  Want to hand a diagnosis based on 5 minutes in a room with a frustrated parent? Shame on you.  Learn how to delegate and admit to your limits.  Sometimes the best thing a doctor can say is, “I don’t know but let’s find out together.”
  9. Therapists – Theory and application are miles apart.  Throw away your developmental timelines, focus on successes, overcome weaknesses, and remember you are treating the caregivers too. Prepare literature and classes to help parents support your efforts.  Parent’s are your apprentices.
  10.  Society – Kids with disabilities are expensive because we as a society have decided that circumstance of birth is the great regulator of potential.  Until a massive, permanent change in the system occurs, families of children with disabilities will continue needing our financial help.

Despite popular belief, the bottom fifth of households pays about 16 percent of their incomes in taxes, on average.  The second-poorest fifth pays about 21 percent.  This is the income bracket of most people with disabilities, who never qualify for “incentive to work” tax breaks or other deductions that leave 40% of US households not oweing federal income taxes.  No one enjoys paying taxes, but those are the same people who gripe when they have to pay a toll to use a road.  This is the price we pay for being part of a community, for having help when we can’t help ourselves, for allowing us to get to work, learn to read, and learn a trade.  We help each other so stop guilting parent’s for reaching out.  Stop punishing single parents and setting up their kids for failure.

I am a single parent who received constant criticism. (2011)

Understand that upward movement for our neighbours is upward movement for us all.  Don’t like that?  Buy an island and live all alone.  And don’t be one of those asshole beg-packers that hike around the country with a backpack pretending you do so without societies help; Hiking around in Levi’s, with a patagonia backpack, sleeping on federal land paid for by taxpayers.  (Note: I am not talking about the homeless.  I am talking about people who beg for money to tour the world)

Ok, my rant took me a little off track, but the point is valid.  We have huge misconceptions about poverty in developed nations, and the people paying the price are minorities, elderly, people with disabilities, and parents of special needs children.  Maybe you think it is cool to live carefree out of a backpack, but you ultimately have the choice at any time to return to the comfort of home.  People with disabilities do not have this freedom, and when their caregivers and parents inevitably die, there is nowhere for us to go.

Jacob with the headphones he always wore in public spaces to help him stay calm. He is now striving to be an engineer.

Parents of children with disabilities have to plan for today, tomorrow, and the lifespan of their child even after their own death.  And when society closes the door to supports due to misconceptions of widespread abuse or political gain, the burden on the parent increases disproportionately.

Think the ADA no longer needs defended by society?  Think about that the next time you wheel a suitcase, stroller, or shopping cart up a handicap ramp.

The point is, give parents a break.  Presume competence in them too, invite them into the therapy session, and lead them to better, supported parenting.  Besides, one day my kid may be your surgeon.

Now, I have vented,

Laura (Snamuh)

Traveling with Autism is getting harder, not easier. Why?

Traveling with Autism is getting harder, not easier. Why?

Dear Phoenix,

It is not uncommon to see public spaces with accommodations of various types.  Restaurants have high chairs for little ones who can’t reach the tables quite yet.  Shopping malls have strollers for children and wheelchairs for elderly who find it difficult to walk the entire mall.  Even in states with public smoking restrictions, many of these places still have smoking areas.  The Atlanta airport has smoking lounges.

Yet when it comes to disability accommodations are becoming harder to get than they were 5 years ago.  How did that happen?

Today, I am at home in deep compression, following travel.  It shouldn’t have to happen this way.  I had to abort a work day too. Not good when you need to pay bills.

Airports and airplanes are overstimulating, even if you love to travel as I do.  True, the tight spaces and noises in the airport itself are part of the issue, but those are just the obvious ones.

  1. People on Domestic US flights are, as a whole, unhappy travelers.  People get upset about everything from security backups, changing rules, long lines to board, and limited overhead space for luggage.  This means most people are vibrating with negative energy, and putting off stress hormone odors. As an Autistic person, I can smell every one of them as they step on the plane, and feel their negativity make my spine sting.  It makes my teeth hurt, and my skin sensitive.  I am in pain, but to everyone around me I just appear quiet and disciplined.
  2. Planes are noisy.  Engines aren’t the only things that make sensory overloading noises.  Shoes walking on the asiles, luggage being loaded, the fans to circulate air, jewlery clanking, people eating food, opening plastic bags, drinking, coughing, sneezing, mobile phones ringing, and that awful sound of the seat belts latching, just to name a few.
  3. Planes smell like portable toilets to me.  When I board, I can smell the previous passengers.  I smell their perfumes, their stress hormones, food they ate, foot odor, and breath circulating through the airplanes air system.  If I am made to stit near the washroom on the plane, I can smell if it has been used at all that day, and the chemical agent used to clean it.  When they refuel the plane, my mouth starts to taste like I am eating copper.
  4. People refuse to follow simple rules about where to put their baggage.  Sorry, but that bothers me.  People cram jackets and shopping bags in the overheads taking up precious space.  They also jam things violently when something blocks their suitcase, which is often my violin case.  I had to purchase a tougher case to protect it.  I am bothered even more by people taking exit row seats that are not really capable of helping in an emergency.  On a recent flight, the attendant allowed a woman with a fresh knee injury (they gave her a bag of ice for it) to sit on the exit row while denying a 6 ft 8 inch man the seat. This woman had to hop down the aisle holding onto the seats.  She could not walk without help.

With all of this going on, my nose and mouth become numb, and my speech retreats.  People I travel with often complain that I am too quiet to be heard even though I think I am speaking loudly.  Sometimes, I just can’t talk at all.  So you can imagine how hard it is when I have to explain to 4 different people between the counter and the gate why I get priority boarding.

On a recent trip with Delta, I had to take 3 flights to get to my destination.  On one flight, I was flying with my son from Buffalo to Atlanta and back.  We both have an official on-paper diagnosis, which I carry with me.

When I booked my flight online, I filled out the form for disability assistance, requesting priority boarding and assistance through security for my son.  He has only traveled twice and still needs a little support with the confusion of security. (Last time he left his suit case unattended, and this time he forgot to take off his shoes).  Delta then called and left a message.  The message was impossible for me to understand.  Not one word.  The only reason I knew it was Delta that called was because they followed up with an email to say they couldn’t reach me but left a message.  There was no option to text, email, or chat via typing.  Only a phone call.  So, I decided to do it the old fashioned way and visit the counter at the airport.

At the Delta counter in Buffalo, I stated as I always had, “My son and I are on the Autism Spectrum.  We would like assistance with this flight.”  When she asked what kind of assistance, I answered, “we request priority boarding and assistance for my son through security.”   She then asked me a bunch a questions I was not used to hearing, and even dismissed assistance through security because I was with him.

We stood in the regular security line and I scrambled to help my son.  He gets panicked in security, which draws attention to him.  Once he takes off his belt, his pants will no longer stay on unless he holds them, which also troubles the TSA.  He ended up getting a pat down.

Once through security, we were stopped at nearly every gate and told we could only get priority boarding if we were in a wheelchair.  I had to show on my ticket where it said “assistance requested”. and explain why.  On our return flight home from Atlanta, the hub of Delta where I KNOW they have received plenty of advice by their disability advisory board, I was told I would not be allowed priority boarding based on disability because my paperwork was more than a year old.  A diagnosis must be written within a year in order to be, and I quote, “compliant with the law.”  She finished by saying, “We can’t just give everyone priority boarding.”

It took a very stressful conversation, but she finally allowed us the status.  I was told no one was available to assist Jacob with security.  So, I approached the disability assistance line and the TSA allowed us in that line.  This time I got the pat down, with no warning they were going to touch me.

We weren’t questioned at the gate this time, but they did allow first class passengers to shove their way in front of us needing assistance during the pre-boarding process, totally destroying the whole point of getting on the plane before the masses.

I didn’t meltdown, so no one will be able to post a picture of them helping me calm down.  Instead I held it together, appearing only timid or tired to others.  What they don’t know is that the day after travel is when I get attacked by you, Phoenix.  Montezuma takes his revenge on my system, my ears ring, my teeth hurt, my nose remains numb, and I get sleepy and disconnected.  Today, instead of cleaning my apartment and working as I once was able to do after travel, I am wrapped tightly in covers trying to ease the nerve pain.  I even had to leave an appointment today because I was starting to melt down in public.  My vision pulsates, and everything looks like there are transparent creatures running through my world.  I get jumpy, confused, and sometimes forget where I am.

Thankfully, Lyft can be called using an app, so I was able to avoid the long, noisy bus ride home.  Total meltdown avoided.  Ten more minutes, and I would have been stuck in public places for a few hours.

Why is this still an issue?  Is it really so bad that someone with Autism, even if you can’t see it, gets to board a plane first?  You think that isn’t fair?  I pre-pay to check my bag to make my trip less stressful, and then watch dozens of people get free checked bags when there isn’t enough room on the plane for bags, mostly due to people carrying on more than allowed and stowing it where they are not supposed to.  That means I pay for what others get for free, yet I don’t expect a free checked bag.  Besides, you chose what to pack for a trip.  I did not chose to have Autism.

Airline travel is not great for anyone, but people with Autism feel that flight for days after.  If I could get priority boarding stamped on my ticket at the counter, and board unquestioned to my destination, like I once could (or still do with Southwest), I can actually function the next day.  That few minutes of quiet settling in, placing on my headphones, and adjusting to the smells gradually, can make or break a trip.  5 minutes.  Can’t everyone spare 5 minutes?

I have another flight with my son on Delta to San Diego in September to speak at the Love and Autism Conference.  I do hope they can redeem themselves.  Otherwise they are ignoring the work of the 15 advisors working hard for people with disabilities.

Hopefully better things to write tomorrow, Phoenix.

Love,

Laura (snamuh)

Today I am Proud of my Autistic Son

Today I am Proud of my Autistic Son

Dear Phoenix,

I have to tell you today about my son, Jacob.  After years of hard work, struggling with people telling him he would fail because of his autism, and many mistakes, he graduated high school.  He will be 17 on Friday.

Like it?  I think his ideas for design are fascinating.  You can see more on his portfolio.

Jacob’s Portfolio

I am so very excited to see what he will do with his life, and his talents.  So today I don’t have much to say.  Just wanted to share what he did.

Till tomorrow,

Laura (snamuh)

Monday Grievances

Monday Grievances

Dear Phoenix,

I’m filled with so much frustration over the way things are going for me lately that all of my carefully built filters are burning off.  I am finding it more and more difficult to keep quiet about the things others do that hinder progress, or create barriers.  I wanted to write to you about it today, but your flames are too hot.  Emotions are burning the paper upon which my mind writes.

This is an experience that others don’t often see – how Autism manifests inside me.  I can write about it every day, and speak about it all over the world, but it falls to deaf ears.  I don’t jump, or chew, or moan, or sway uncontrollably.  Some people with autism do all of those things, some don’t.  In that image of Autism intelligence is overlooked in those who jump, while Autism is invisible in those who don’t.

Today I got a letter from someone offering a special diet to help me. A few weeks ago it was a supplement.  My email box is filled with offers for vitamins, drinks, foods, diets, even chemicals that will “ease my pain” or “cure me of the scary things that stop you from being truly great.” (Those are real quotes from emails).

Am I on some proverbial canyon edge of success that is impassable because I am tainted with Autism?  What will your pills and diets do?

I wrote about being stuck between countries and how I am not yet able to be a Canadian but feeling like I no longer matter as an American.  But that is not the only place I feel stuck in the middle.  There is a divide in the Autism community between the speaking and non-speaking communities. Low IQ and low-functioning are inexplicably linked to non-speaking Autistic people, despite their efforts to prove otherwise.  How many nonspeaking authors, advocates, bloggers, and presenters must there be before we see the grievous error in linking low IQ with non-speaking?  But the problem isn’t just in the NT world, the stereotyping comes from the speaking Autistic world too.  I read comments daily by angry people with Asperger’s who hate being called Autistic because they are intelligent and function independently.  This completely baffled me, until today.

The reason the divide exists is because the narrative of the Autism experience is controlled by non-Autistic, sensation seeking publishing houses, news reporters, and other professionals who see only the conflict.  They place the stories of Autistic people that they think tugs at the heart strings, and places an NT kid as the hero.

  • The lonely Autistic boy who eats alone until an NT kid sits with him.
  • The lonely Autistic boy who can’t get a date until an NT kid invites him to prom.
  • The lonely Autistic boy who is given the football and told to run.
  • The lonely Autistic boy who is marveled at because he can recite pi to the 1000th place.
  • The lonely Autistic boy who can play Chopin at age 8 but was ignored until he was discovered by an NT run talkshow.

See a pattern?  Yes, they are usually boys, because that is what people like Simon Baron-Cohen want us to think (and if not male, than having an “extreme male brain”) .  They are usually depicted as lonely, because lonely sells, and they are usually rescued by an NT, because everyone wants recognition.

Tell me, how many people who rescue Autistic people would choose to live with them?

I am not discounting the genuine NT people who work tirelessly to provide opportunity for people with Autism.  I know many of those people.  But I also know that once a badge is pinned on the lapel, there is nothing required of the person to keep it.  Join a committee, run in a 5K, accept a seat on an advisory board, but don’t touch Autistic people outside the photo op.

This narrative is so invasive that many of my fellow speaking Autistics have bought into it.  They yell at me for being positive about my Autism, wallowing in their own tragedy, as they hear the same story every day that we are not wanted.  As the camera pans to my non-speaking friends, the negative dialogue is voiced over, and their achievements, and intelligence, are left completely out.

Only you, Phoenix, know how much energy it takes to fight the constant criticism I receive for being proudly Autistic.  Criticism from both the Autistic and NT world.  What an odd dissonance.

And though I am weary, and though I am breaking inside and out, I refuse to feel sorry for myself.

I refuse to accept the pop-culture, pain sells narrative and I reject any criticism that my Autism is not Autistic enough, or male enough, or too verbal.  Last I checked I live alone, travel alone, eat alone, and sleep alone.  No one lives with my autism.  Not one of my critics has lived with Phoenix.

I refuse to stop fighting for my non-speaking friends, or female autistics who are marginalized by this narrative.  It is time for Autistic people to take over our own stories without apologizing that it isn’t sad enough to sell on prime time news.

But most of all, I refuse to be anything but me.  Loud.  Autistic. Female. Proud.

Yours always,

Laura (snamuh)

The Story Behind River Oasis

The Story Behind River Oasis

Dear Phoenix,

Did I ever tell you about why I wrote the shadow song, River Oasis?

I struggle with knowing who my friends are.  People say they are my friends, but I sometimes get confused with the term friends. Everyone seems to have their own definition of what a friend is, so I just really never know, until a confirmation event.

Confirmation events are small moments when it is revealed to me what a person means when they call me their friend.  In one instance recently, I learned I had a friend when she told my parents how she felt about me.  Her words to my parents, and watching my parents react (something I am quite familiar with now) confirmed that she and I had an equal meaning of friend.

Back when I was living in Atlanta, I was having trouble with your fire.  I know you love me, Phoenix, but that was just a rough time.  I was spending too much time isolated, which peaked one New Years Eve night as I cried myself to sleep.  This really bad night taught me that I could no longer wait for confirmation events.  I needed to create moments for them to occur.

My love of the outdoors and the amazing shadow songs could set the stage, so long as the places we met didn’t compete with the shadow song of the person I needed to understand.  A system of parks along the Chattahoochee River worked perfectly.  The river was energetic, but soothing, erasing out the intense pressure created by the inharmonious relationships that buzzed around Atlanta.  It was present, but not loud, yet loud enough to cancel out the city noises.

I met a friend there, curious if he really was my friend, at a coffee shop right on the river.  It was warm that day, but the cool water created a refreshing mist that was carried on the back of the breeze.  The river song would swirl around us only filling in the moments of silence, but when he would allow himself to be open, his song was the soloist and the river his orchestra.  It worked, and way better than I had imagined.  Within the first visit, I got my confirmation event – a moment of honesty and vulnerability that showed me I was trusted.

One by one I starting inviting friends there to listen to their songs, and look for those moments of friendship clarity. When I started recording pieces for my album, it seemed only fitting that I should honour the river that brought peace to my friendships.

Thanks and love always to you, dear Phoenix,

Laura (Snamuh)

 

Vendergood

Vendergood

Dear Phoenix,

Vendergood.  It’s a real thing.  Sometime in the early 1900’s a rarely known man by the name of William James Sidis created a constructed language called Vendergood.  He combined Latin, Greek, French, German and other Romance languages to create his very own.  He had taught himself 8 languages.  He did this by the age of 9.

Intelligence is one of many aspects we have decided to measure in humans.  But it remains a mystery to me why we believe we can truly quantify intelligence and what good it does us to filter learning potential.

My fellow Autistics who are non-speaking are often given assigned IQ’s below 70 (labeled as definite feeble-mindedness).  In college, I argued that the reasons for this was not that non-speaking Autistic people are feeble-minded, but that the tests used are socially, verbally ,and culturally biased.  My view was not a popular one, and my theory was dismissed on that basis that I had no empirical data.

But, they didn’t have Empirical data to support that low IQ was comorbid with non-verbal Autism.  No one finished the test, no one created alternative measures.  Failure to finish the test was assumed to mean incapable, unable, and incompetent.  So I was to accept this with no formal study, but my theory was trash?

Let’s go back to Sidis a moment.  He had mastered high level mathematics at age 9.  Shortly after he became the youngest person to attend Harvard, finishing his Bachelor’s degree cum laude at age 16.  At age 17, following some bullying at Harvard over being a pacifist and recluse, he became a graduate fellow working on his PhD and was given a job to teach at Rice University.  He taught maths for one year and then left.

Sidis talked about wanting to live celibate and isolated.  He struggled to understand people. His parents intervened often for him (they got him the teaching job) as Sidis struggled for independence.  He was arrested at a socialist May Day parade that turned violent in Boston.  Stories about his life certainly indicate that people were difficult for him to understand.

His sister declared that his IQ was the highest ever recorded.  No proof exists of this, but the rumors remain that Sidis had an IQ between 250 and 300.

What?

Never mind that the IQ test was never meant to measure that high with 180 being the top score on the Stanford-Binet.  So, this could easily mean that scores above 180 are estimations with larger margins of error. Nonetheless, what could one possibly benefit from having an IQ of 300?  Or even 200?  And how do we score that?

If we start using IQ measurements to explain intelligence after otherwise unexplainable intellectual anomalies like Sidis, none of us have a snowball’s chance in hell of being anything shy of a bumbling idiot.  William J. Sidis had shown some amazing promise to learn everything really fast, but what did it get him?  What contributions did he make?  He spent the rest of his life running adding machines, and obsessively collecting streetcar transfers.  He published one book and held a patent on a rotary calendar. He died alone from a cerebral hemorrhage at age 46.

What if no one “discovered” Sidis at a young age?  What if Harvard had denied the boy access to University until he was proper age?  Would they have believed such intelligence came from an adding machine operator?  Would Sidis pass the SAT’s or even qualify for a scholarship to attend Harvard in the 21st Century?

What if Sidis were non-verbal?

Take into account Stephen Hawking, another exceptional mind.  Dr. Hawking is bound to his chair unable to speak, but his IQ is still estimated to be over 180.  Would people still believe that if he had made his achievements in science after ALS took away his speech?

Neither Sidis nor Hawking have a published IQ score to date.  Their IQ’s are estimates made purely by onlookers looking to categorize human achievement.  Now I am not denying that Dr. Hawking’s intellectual capacity is higher than average.  But what a travesty it is to throw around this number post-achievement, yet also use it to create exclusive access to education among children.  In the disability world, an early IQ assignment of 70, creates barriers that imprisons the minds of the non-verbal, while also adding undue weight to the academic achievements of speaking ASD kids.  For everyone else it creates the illusion that world changing ideas come only from people with IQ’s over 140 (genius).

Google DaVinci’s IQ and the number is 220.  What the f_ _ k?  How did DaVinci get such a high score on a test invented 400 years after his death?  If DaVinci were alive today he would have been yelled at by his teachers about how he would be a starving artist, have his journals confiscated by the police, and likely subjected to hundreds of hours of therapy for creating sketches of inventions that look like devices to bomb the school.

The sad truth is we give posthumous vanity IQ’s and honorary appointments to amazing thinkers long after they could have benefitted from acknowledgement, mostly to make us feel better about kicking them around while they were alive.  Innovation doesn’t come in a clearly marked bottle safe for human consumption.  Innovation is unstable, anti-social, irreverent, and chaotic.  If we all saw it coming, we wouldn’t need innovation.

Sometimes intelligence is easily recognized, but most of the time it is not.  Especially when it is unspoken.  But unspoken does not mean silent.  Unspoken words are the loudest to those who have learned to listen at a different frequency.  The dog is not crazy for hearing the whistle that is silent to humans.  Just as I am not crazy for hearing the intelligence of my non-speaking Autistic mates.

You are howling, my dear Phoenix. Now let us show them what they are missing.

Laura (Snamuh)

How to Love without Anyone Noticing

How to Love without Anyone Noticing

Dear Phoenix,

Yes, Autistic people have feelings of attraction.  I have had to learn how to funnel my feelings into socially acceptable actions, which is hard since societal definitions of how women should behave in manners of attraction vary so much between regions, political beliefs, and cultures.  My innate ideas of expression follow along more traditionally male accepted behaviour.  I like giving my date flowers and small gifts, I like treating my date to meals, and I like initiating acts of romanticism.  Not only is this not acceptable to many in a straight relationship, but in many cases can be dangerous when my actions are misread as sexual aggression rather than romanticism.  For a woman, this means I end up being treated like a throw away toy.

 

Again, we come back to that idea of being born completely open, and thus having to train myself to be cautious and guarded.  It is a painful process.  Like having to touch a hot burner to remind myself that it is hot, my openness means I get burned frequently.  It hurts just as much, no matter the frequency.

 

Most of the men I have had any kind of relationship with beyond friendship follow the same pattern.  At first, they find me fascinating and want to engage in long periods of conversation.  They like to attend my public events as a speaker and a performer, and seem to enjoy my candid nature.  Everything usually follows along smoothly, with many hours of laughter and intellectually stimulating conversation.

 

Then, I hit what I call the tip over point.  Usually as I settle in and just feel comfortable to fully engage the person, the guy places distance between us.  This usually follows a sensory event where my candid, outgoing self is masked by my need to rely on guidance. (Also known as – Enter Phoenix) . From almost nowhere you enter the room, Phoenix.  Overwhelmed entirely by my sensory system with you at the wheel, I appear weaker and unsure.  It is such a contrast to my typical operating mode, it creates confusion I suppose.  All I know is a sensory event is part of autism.I am not me without my Phoenix.

 

Then for the part I really hate.   Echolalia and repetition approach me like a dense fog on the bay.  I start verbally asking for reassurance that everything is ok, often repeating the same questions in the same order.  Like a series of lights on a string, once I ask one question, the next question has to be asked.  Remember when we used to call for mom from the top of the stairs just to make sure she was at home?  I knew she was there, but you, the Phoenix, wanted reassurance.  I know the answers to the questions I ask so I don’t want to ask them, but if I interrupt the sequence, a sort of panic sets in making me feel as if I am lost, alone in a dark cave.  The Phoenix nest in my brain wants the same answers as before, with remarkable precision.  Tone, pace, word choice and body movement must all be the same and if it isn’t, I ask again.

Damn you, Phoneix.  That is where I get so angry with you.  The repetition.  Why do you need everything to be exactly the same?  There is such a beautiful pattern to chaos.

 

I am totally cognisant of this entire process.  I know when you are burning the nest, or circling my sanity. I know what is happening while it is happening, but I can only endure the ride.  Like being in a car accident, how everything slows down and you are aware of each millisecond, but you can’t stop the accident.  All I can do is wait until the sequence is over, clean up the damage, and hope I still have a friend afterwards.  It is not violent, or outward.  Rather I turn inwards and sometimes I feel afraid.  I seek deep hugs and need to hear answers.  Once the person I am dating goes through this a few times, the luster of being with me wears off and I start to notice I am being pushed away.  I don’t blame them.  It is just hard.  The difference is that they can walk away, but tomorrow I still wake up autistic.

But then there is love.

English words fail to express love the way I feel it.  In this way, English word choice is oversimplified.  The Ancient Greeks had many words for love – Eros, Philia, Ludus, Pragma, Philautia, and Agape.  Each word describes a different aspect of love in its multidimensional splendor.  Of these, I identify most often with Agape, the love of everyone, and Pragma, longstanding love.  

 

Other cultures on our great earth understand what the Ancient Greeks did about love.  For example in Boro (a language of India) they have the word Onsra to describe the bittersweet feeling that love will not last.  Or Cwtch, which is Welsh for the safespace provided by a loved one when being hugged.  One of my favorites is Merak in Serbian which describes the feeling of oneness with the universe when enjoying a simple pleasure. 

Oneness with the Universe.  That idea is important as we fly through the human experience together. Phoenix and me. It is a type of love, deeply romantic, that is free of the need for reciprocity.  It is part of that fourth dimension you bring to me, Phoenix.  An experience far deeper than most human love.

 

Aside from fourth dimension love, these multiple aspects of love are something we all feel, but often fail to express in words, at least in English.  This means that people often use body language and innuendo to communicate what kind of love they are feeling.  This too is an oversimplification.  Despite our societal beliefs that we can read people like a book, we simply cannot, autistic or not.  In the psychology world, we identify these beliefs and label them.  The belief that people can read us when we are emotional is called the transparency illusion.  Add asymmetric insight, the belief that we know more about others than they know about us, and you have a self feeding cycle.

 

Think about this more deeply for a moment.  A neurotypical couple, let’s call them Alex and Casey have an argument, which triggers an emotional response.  Inside the brain of Alex begins a complex series that will cause a Ninety second chemical reaction.  But Alex has learned to identify this feeling and label it as frustration.  Alex loves Casey, but is not content with her conclusions.  Alex believes Casey can read her emotion as frustration.  Casey, who is also experiencing the same chemical reaction, believes that Alex can read her emotion, but has labeled it as anger.  Casey also believes Alex can read her emotion as anger.

Confused? Me too.  Just reread that last paragraph as much as you need.

Now we have two people who are feeling different emotions but believe they can read each other clearly.  Are their emotions different?  Yes, I believe they are.  Frustration is usually directed at the situation, whereas anger is directed at the person.  Alex is frustrated with the conditions of the argument, but feels no ill will towards Casey.  Casey feels wronged and that Alex is the cause and needs to apologize for making her feel bad.

 

Since Alex and Casey both have drawn conclusions based on illusion, belief and bias, an argument must happen with words to sort out the problem.  In a healthy relationship, the argument should be an exchange of words explaining observations and how one got to those conclusions.  The words replace the incorrect conclusions with observable descriptions and helps to better frame the situation.  And if Alex and Casey love (pragma) each other as they claim, then they will be able to find middle ground.

 

Theoretically.

 

Much of the time, couples seem to resort to blaming.  Words become weaponized as each one points out flaws in their conclusions, and sometimes even in their character.  Born to a society that believes we communicate more nonverbally than with words, each one starts reading too deeply into the other, which turns the 90 second chemical reaction into a multi day emotional ride.  The focus shifts to each one defending their original conclusions on the other.

Note that when I say non-verbal communication, I mean intention expressed through body language, facial expression, and theory of mind.  I am excluding sensory perception.

 

From an autistic point of view, this is a nightmare.  Many people believe that since I was born unable to absorb cultural beliefs and customs surrounding non-verbal communication that I am automatically at a disadvantage.  This conclusion exaggerates the asymmetric insight, leaving the neurotypical person to believe I cannot read them at all, but they can read me even better than I know myself.

 

Let’s say that in our imaginary couple scenario, Alex is autistic and Casey is neurotypical.  What changes?  Very little actually changes in the beginning.  The process is the same for Alex, except that Alex may struggle to find the words to describe it.  Not because Alex is out of touch with emotions, but because Alex’s senses are so finely tuned that the words selection given to describe emotions is not adequate, nor is the description others give us of emotions complete.  So Alex now must search for another way to express the emotion, but Casey is expecting Alex to adhere to the social norm – to choose an emotion word, facial expression, or physical gesture.  Alex can’t, and now Casey feels unloved.  Since Casey feels neurologically superior, they develop a need to identify Alex’s emotion for her.  This is so exhausting, the relationship eventually ends.  Casey ends up taking on the role of caregiver in the relationship rather than seeing Alex as an equal.

 

Like Alex, I struggle to communicate, not to feel.  My pallette of experience is not lesser, it is bolder, louder.  When I feel love, it is for everyone, but comes in many shades.  For me to say “I love you” paints only a small portion of the picture.  

 

Let me be clear that I do not mean to dilute the word love.  When I tell someone I love them, I truly mean it.  But to me the word love is a box which encases another universe.  It means I am open to them first, trusting and vulnerable; vulnerable like that of a child where the connection happens not because we shared a common interest or political belief, but because our inner universes collided.  Vulnerable to be open to experiences like they are all new and not filtered by the sting of life.

Only once have I been touched so deeply by another that my inner universe actually expanded to accommodate it.  The most complex form of love I have ever known.  It hurts as much as it heals, invigorates as much as it calms.  It is speechless.  But the only word I have is love.

Loving others is at the core of my inner universe, even when others do not love me.  Perhaps the simple act of loving is enough for me.  But there is this part of me that feels a kinetic calmness, like that of a star, when I am loved by others.   Part of being born so open I suppose.  I just want everyone to have a chance to feel genuine love, even if it is only for a moment.

Love,

Laura (Snamuh)

On the other hand, what if an Autistic is recognized as a prodigy?  

On the other hand, what if an Autistic is recognized as a prodigy?  

Dear Phoenix,

Yesterday I was stuck in a loop.  This topic of presuming competence vs the prodigy effect cuts so deeply.  The word prodigy was uttered around me as a child when I was learning violin.  I didn’t think much of it, I just wanted to play music with everyone.  Whatever word was used to describe why I could learn music so fast did not reflect the fact that I did work hard.  I practiced so much that my parents actually asked me to stop and go to bed.  I would rather play violin than eat, sleep, or do anything else for that matter.  My passion for music was the bulk of my progress.

 

As a teacher, I cannot ignore the fact that some students do have aptitudes that others don’t.  I hesitate to say talent, because I do not think it is purely inborn.  I believe aptitude is an intellectual cocktail comprised of exposure, passion, persistence, heredity, necessity, and privilege.  I was fortunate enough to have overflow in all of the necessary areas and thus labels such as talented and prodigy were added.  I am aware of the social constructs that label the science behind why we accel.  But without the hard work, the other elements are quite useless.

 

I started teaching young, around age 14 or so, when I was asked to stay after school and help tutor classmates.  I was thrilled to help my fellow orchestra members so that we could play more interesting music.  I had an engaging way of teaching the material.  This was because I had an intimate knowledge of what I was teaching purely from my involvement with music.  I often could do what I was teaching and had usually experimented with several approaches before settling in on a technique.  Because of my multi-dimensional analysis of every musical concept, I could teach it like it was simply a tour through my own living room.

 

As I barrel rolled into adulthood, any perception that I was a prodigy was diminished.  What I could learn and how fast I learned it, or even how well I played it, was no longer important.  My lack of official credentials redefined me.  I was put aside by many because I did not have a degree in music, nor a seat in a professional orchestra.  I could learn to play any instrument in minutes, but that was overshadowed by the fact I couldn’t recite theory on demand.  More times than not, less skilled teachers would replace me simply because they had a college degree, and not necessarily in music.

 

Once the word Autism entered my vocabulary, this issue of not having a degree became a bigger problem.  You see being an autistic prodigy made me a marvel as a child, but played no role in defining me as an adult.  My excelled music abilities should have put me in a conservatory of music, but it did not.  This is where the blurred line between aptitude and discipline is most evident.  I wanted to explore music my own way; to change the system.  My disobedience made me fall hard from favour as others deducted that teaching me the traditions of music and it’s theory was not possible.  As a child I was a marvel.  As a teen I was a disobedient youth destroying my future.  As an adult, I am just a has-been of the music world.

 

This perception that causes professional execution of the unruly prodigy is not unique to the Autism world, but it does have a greater impact.  Low self-esteem, hindered social interaction, and brain-body disconnect make the loss of a special interest as a career path catastrophic.  Music was not merely some heightened skill inside me, it is my way of telling the doctor what is wrong.  It is my way of calming the fears brought on by my misinterpretation of the world.  Recognition of my music means the listener hears my story and if only for a very brief moment, connects with me at the deepest possible level.  Being told my music was lesser because I couldn’t place it in the Neurotypical worlds box bound by rules created by the post-partum observation of those who became great before me, broke the lifeline that connected me to other humans beings.  It was just another way of saying my voice didn’t matter because I didn’t perform the Mendelssohn Violin Concerto at age 10 as that was the age I started to play.  Apparently age 14 wasn’t good enough.

Enter you, Phoenix.  Your excitement and need for expression made my body rock while I played.  You and I could dance together, instead of fighting to operate in the same defined space.  This was the place where we connected, in my mind, and made the music fill every cell of my body.  It was uncouth, and many of the traditionalists of the music world found it offensive.  Remember the man that held my shoulders and said I was better when I was still?  You didn’t like the black dresses either, so my grandmother made me one I could tolerate. If only they would let us play in the orchestra in whatever was comfortable. I mean even Ellen DeGeneres wears sneakers with her suits,  

The fact I learned it mostly by ear was unbelieveable.  It remains so.

 

In Autism, it is truly an unwinnable scenario when the entire approach lacks a presumption of  competence at it’s core.  If we are seen as competent humans worth teaching only after we reveal some super power or prodigal skill, then we never have a chance to view life from a seat of accomplishment.  And when we have a skill, it should not be yoked with this superhero complex of savants and prodigies.  As soon as the flapping 10 year old becomes a flapping 20 year old, the word prodigy expires.

Prodigy or not, either way, we are always proving ourselves and measured by a ruler that has infinite parameters between each mark.  After all, what better way is there for society to protect their intellectual hierarchy than to dismiss non-verbal genius?

No worries, Phoenix.  I’ll never let them put out your flame.  You shine brightest when you sway my body to the music.  The only way to get them to open their minds, the only way to love louder, is to never end the dance,

Love,

Laura (Snamuh)