Tonight, I am Playing the Shadow Songs for You

Instead of writing a letter to Phoenix, tonight, I will be taking my violin to the edge of the water to play shadow songs to the sunset.

Inspired by a student who taught me of the Japanese concept “mono no aware”, the awareness of impermanence (mujō), or transience of things, and both a transient gentle sadness at their passing as well as a longer, deeper gentle sadness about this state being the reality of life.  I feel an urge to connect with people, and remind them why we need community and compassion.My final shadow song will be one of healing, direct from the very depths of my inner self. I see no other way to face the anger and violence, than with love through music.

Join me tonight, Canalside, 329 Erie St. Buffalo, NY 14202, near the Erie Basin Marina. 

7:00 – Meet and greet each other.
7:20 – Take in the area and listen to the songs coming off of the water, and the people.
7:30 – I will start playing.
8:10 – Sunset and play healing shadow song

 

All are welcome. No need to feel like you must be quiet, or still. Dance, sing along, or bring an instrument. 

Hope to see many people there.

Laura

 

Collective Friendship

Collective Friendship

Dear Phoenix,

Back in early 2015 I was working hard to grow past many of my limitations, and push myself towards my dream.  I wrote a script for one of my 5 minute positive takeaway videos, but never got a chance to make it.  Chasing a dream takes ample energy, and all of my resources.

Here is the script I wrote:

EXT. LONELY ISOLATED ROAD ON EDGE OF TOWN

A woman, named Seeking, is walking alone, in worn out clothing carrying several suitcases. Each suitcase is labeled with a different burden (hunger, loneliness, unemployment, debt, past transgressions). She is wearing an untied straight jacket labeled exclusion on one arm and judgement on the other. She continues to walk but wants to stop. Every time the she stops, she is pushed away, like an unwanted stray animal. She continues to walk out of town to the isolated road.

Along the way, she is passed by cars who honk at her for taking up the road, or looking unkempt. She lies down on the side of the road to rest, but becomes afraid of the shadows in the forest. There isn’t anything there, but she can’t understand that. Seeking runs, but then collapses as the shadow draws near. She feels she is being attacked. Just as she thinks her life is over, an old woman helps her up. One by one, the old woman detaches the suitcases from Seeking, and then removes the straight jacket and wraps her in a blanket. The blanket says Friend.

The old woman, named Compassion, wants to leave the suitcases behind, but the girl is reluctant to leave them behind. The old woman hugs Seeking and leads her away. They arrive at a modest house on the edge of town. In the home are other friends of the Compassion, who all jump up to help.

They feed Seeking, clean her up, and keep her warm by gathering together under a large blanket together. After some time passes, one by one each member of the house goes back to the location where they picked up Seeking, and grab a suitcase.

A man named Nourishment, picks up the suitcase labeled hunger. He carries it back to Seeking. He fills the suitcase with seeds to plant, bread, and other nourishing food. He brings it to her and feeds her the nourishing food. He sets aside the seeds to plant until she is healthy enough to tend to them.

A child, named Dreamer, in the house picks up the unemployment suitcase. Dressed in her best, she drags the large suitcase from business to business, until the local printer takes it. The child receives a paper that says employed and she runs it back to Seeking.

A married couple, named Security and Sustenance, take the debt suitcase. They perform on their instruments in town, and collect donations in the suitcase. They take it back to Seeking, and show her how to use employment to finish filling the suitcase. Security brakes the hinges of the debt suitcase and places the top not to it, splitting part of the money into the top. He labeled the top Future. Seeking, feeling strong, rises out of Nourishments arms. she puts on her shoes, and her work uniform, and walks to the print shop.

Nourishment, Security, Sustenance, and Dreamer all walk with her. Seeking arrives at her new job at the printer. Uncertain what to create, she stares into the void. She gets up and looks out the window and a raggy stray who has dragged Past Transgressions to her office door. She brings in the stray, and creates a makeshift bed for him out of a box and a blanket. She opens the suitcase and stares at its contents, horrified. She looks away in disgust. Nourishment senses trouble, and sends the people of the house to her work. They arrive in time to catch Seeking as she falls from her stool.

They gather under the blanket and the stray joins them. Curious about what is in the suitcase, Dreamer crawls over to it and pulls out a nail. She looks over at Seeking, who buries her head into Nourishments arms with shame. Dreamer pulls herself up and looks into the suitcase. It is full of nails. Dreamer looks sad. The stray comes to cuddle with her. Then Dreamer gets a big smile on her face and runs out of the printer with the stray. Dreamer collects the owner of the hardware store and  whispers into his ear. He smiles, then nods. Dreamer then runs back to the printer to share her idea with Seeking.

Seeking picks herself up, dusts herself off, and starts back to work. Dreamer, the hardware store man, and all the members of the house settle into a routine. Seeking creates beautiful art at the printshop, works at the house to plant her garden, and put money in debt and future. She workings with the hardware store, with a handful of nails at a time from past transgressions, and nails them into an unknown structure. The town starts to take notice. Feeling bad for judging her, the townspeople work to scrub clean the canvas straight jacket and dismantle it. Each member of the town works to recreate the jacket into something else very colorful.

A year has passed. Seeking is happy. She has friends in Nourishment, and other members of the house. She has a flourishing garden, at the house, and debt is gone, and future is filled. They stray is healthy, and the towns people are happy too. There is a party in town today. Dreamer and Seeking have used up all the nails in past transgressions. As they are walking to the party, they see the old woman approaching. She is carrying loneliness. Seeking takes the suitcase from the old woman and they walk together to the party.

They arrive to see all the members of the house, the stray, and the towns people standing in a big group together. They part and the group reveals a beautiful wooden sailboat built with the nails from past transgressions. At the mast are Security and Sustenance, who raise a flag made of the old straight jacket. On the flag is a Print work made by Seeking. Seeking looks down at the suitcase. She uses a rag and wipes off all the letters of loneliness, except the first L,O, and E. She Writes in a V to spell Love.

The old woman, the members of the house, and stray board the boat and sail from place to place, bringing security, sustenance, nourishment, and love to all they meet. They are not afraid to dream, fail together, and comfort one another. The town they left behind is all for the better too. The house continues to take in seekers, and is run now by the townspeople.

As the sun sets over the water, Nourishment and Seeking hold each other in love. The old woman gleams, and Dreamer looks ahead with excitement. Stray looks like captain puppy, and the couple plot the way. The sunset creates a silhouette of Seeking and Nourishment, until the screen is black.

WORDS ON SCREEN Free of judgement, the act of one becomes the love of many. Love louder.

When I wrote this, I had pictured each word as a separate person.  People who saw what a person needed and did that to help.  But since then, I have learned I was wrong.

The only person I needed to meet was compassion.  By allowing myself to be Seeking and chasing my dream, I was open to receive compassion.  Compassion came when each person on my path wrapped me in their friend blanket, and those people are real.

I have allowed myself to be loved.

Over the past 3 years as Seeking I have met some incredible people.  Their friend blankets are warm, strong, and always hugging me with the deep compression I need.

So what about Nourishment, Dreamer, Security, Sustenance, and the stray?  They are all within me.

Nourishment is my curiosity and sense of adventure that feeds my mind with knowledge and experience.

Dreamer is my childlike wonder that allows me to see the world in infinite beauty.

Security is my strength that keeps me fighting for what is good and right.

Sustenance is my endurance and tenacity that keep me rowing this old sail boat even though the wind is not yet blowing.

As for the stray, he comes around from time to time to remind me of my failures.  So I feed him, and hug him, and I have forgiven him.  Stray is my past, but not my present or future.

And you, Phoenix, you are the fire that keep me warm.  So maybe the story didn’t start out with the right idea; it became so much more.  The compassion of others wrapping me with their friend blankets helped me to be all I needed to be.  To my wonderful friends, and family, I say to you;

Thank you for your compassion, and for loving me so loud.

Until tomorrow,

Laura (snamuh)

Time to Be Naked and Return to Innocence

Time to Be Naked and Return to Innocence

Dear Phoenix,

I posted on Facebook yesterday about the hate and violence infecting the US.  I was moved to post something because silence seems wrong.

In my post I had noted that for 22 years, no one bothered the Boston Holocaust memorial. Now it has been vandalized twice in 6 weeks.

White-supremacy is not acceptable.
Racism is not acceptable.
Bigotry is not acceptable.
Rape is not acceptable.
Misogyny is not acceptable.
Child Abuse is not acceptable.
Violence towards others is not acceptable.

I will not apologize for believing these things. I will not tolerate others around me abusing or mistreating others. I will continue to love others, and I will be continue to be non-violent, but I will not be still. Hurt someone I love and I will become the wall between you and them.

This statement is strong, but required no energy for me to say when faced with atrocity such as Charlottesville. I struggle with words and emotions, but in defence of my fellow humans, I struggled none.

Today, as the rage continues, I was overwhelmed by this question in my mind.  So, at the risk of backlash, I have a question I must ask:

It is commonly viewed that if I were to walk down the street naked, and was sexually assaulted, it would be my fault. Even if there are those of us that disagree, it is still the common view. It is not seen as freedom of speech or expression, but as a call to action.
 
How is that being naked is a call to action, but carrying a known symbol of hate and murder, such as a Swastika, is seen as freedom of speech?
I can’t help but wonder when we will liberate ourselves from hate and fear?  When will we be able to return to that beautiful innocence of childhood – innocence not as ignorance, but as one who is harmless, lacking guile, and seeking only connection?
Maybe it is time.  Time to be naked, from the inside out because fear and hate can only survive beneath the cloak we hide behind.
My thoughts for today.
Love,
Laura (Snamuh)

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)

Teaching Phoenix to Climb

Teaching Phoenix to Climb

Dear Phoenix,

It has been a few days since I last wrote to you, but something amazing has happened.  I am in Alta, Wyoming attending the wedding of a good friend of mine.  She wanted my shadow songs to accompany her wedding on the top of a mountain facing Grand Teton.  It is beautiful.

To arrive at ceremony spot, I have to ride a ski lift to the top.  This is a new experience for me, and you seemed to be upset with me pushing you for this new experience.  I know it is you, Phoenix, that makes possible the shadow songs I play, but it is also you that makes my body not want to seek adventure.  Knowing I would have to push you, I rode the ski lift twice yesterday, each time helping us regulate the experience together.

The first ride up the lift, my body was tingly and my stomach vibrating.  The experience of travel the day before already had me reaching for the tummy meds, but this was pushing you over the edge.  You began to burn, blurring my vision with bright shades of yellow, white, orange, and red.  The ground moved far away, and the texture on the trees pulsated.  You wanted to cry and run away, but I wouldn’t let you.

I counted the ticks of time in my head, an echo in my mind’s ear of the grandfather clock at my parent’s house.  I pushed you hard to take in the views of the mountains, and bow to the Aspen trees that applauded us with their leaves.  By the end of the first ride up, I knew you were ready to burn down the house we live in.  You got brighter and louder, almost obscuring my vision totally as we left the landing pad and headed down the mountain.  It was a friend on the lift with us that added deep compression to my shoulders, saving me from displays of rocking and hand rubbing.

I knew I needed to do it again, so we headed up for the rehearsal, this time with Giuseppe (my violin) in tow.  With a violin on one shoulder, and deep compression from a friend on the other, this time the ride was more pleasant.  Anxiety turned to excitement.  Now it was an adventure and you were on board.

After the lift arrived at the landing pad atop the mountain.  I walked with the wedding party to the edge of the mountain, with a clear view of Grand Teton just behind us.  The shadow songs began to dance and once again Phoenix and me were one.  I played for the bride, and I think she was happy.  After, I walked Giuseppe to a pointy edge, and stood upon a rock.  I started to play but the wind pushed my bow off the strings.  I knew the wind wanted me to sing to the snow filled creavases of Grand Tenton, so I turned 10 degrees east and played out loud.

Just then, the wind reached out with its soft hands and cradled the music that Guiseppe sent to her.  The notes bounced and scattered upon her back until they spread like waves of light upon the mountain face.  The mountain was so happy, she kept the notes, never sending them back to my ear.

We rode down the mountain, and Phoenix was at peace.  My tummy calmed, and my mind was content.  You see, adventure is the hinge-pin of human growth.  I can now say, “Phoenix and I played the shadows to Grand Tenton, and the mountain gave us her peace in return.”

The wedding is today and I can’t wait to tell you all about it.

Love always,

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)