They’re right, I’m a Nothing?

They’re right, I’m a Nothing?

Dear Phoenix,

It took me 3 days to prepare myself to make that phone call.  Phone calls remain my one major test as a person with Autism, my Kobayashi Maru.  To most people, this sounds silly or trite, but for me it is real.

For those of us who struggle with communication, the phone can be confusing.  Many unexpected factors and the inability to read voice tone means I am often stuck in a loop trying to interpret meaning.  When the frequency of the voice changes, or their word pacing differs, my brain gets stuck on the pattern and loses the meaning.  It is as if the words change to meaningless syllables and ticks.  As a result, I miss much of what is said, making my answers sound off.

Speaking to people in person is a struggle too, but the phone adds an extra layer of problems.  This is because all of my adaptive techniques to better understand people require context, body movement, and the energy off of the person to interpret them.  Social skills training focuses on nonverbal cues, which are impossible to read on the phone.  Somehow, NT people are able to use nuanced voice tones to make up for this.  I am not.

Nevertheless, when people call me, I return their calls though it make take me a few days.  They ask me questions, and I try to answer.  Often times the conversation is awkward and has me breaking the flow constantly.  I never know when they are done speaking, and if I pause too long, they speak again.  Round and round we go, they want an answer I can’t give.

Talking on the phone is one of 100 issues I navigate daily.  Learning to live with you, Phoenix, requires a highly tuned level of focus and the skillful application of my self-taught adaptation techniques.  When I leave the house, I power on my mental systems to actively think about:

  • Navigating around people while walking
  • Filtering relevant sound from irrelevant sound
  • Organizing neurological input and channeling it elsewhere so as not to be overstimulated (I compose music in my head from the sounds around me)
  • Processing emotions often from the 2 or 3 weeks previous
  • Counting so I don’t focus on the rhythm of my steps and get lost (please don’t ask me how many steps I take.  I count to 10 and start over.  It’s not an obsession, its an adaptation)
  • Organizing my word muddle into comprehensive sentences (word muddle is what I call the constant internal monologue which is often just the rapid firing of vocabulary)

These are just a few things happening in my active mind while I am working through my day.  This process is only calmed when I play music.  True, most people process this stuff, but they do it passively, somewhere in the background, like muscle memory that no longer requires active thinking.  My mind processes all of this as if I am learning about it for the first time.

It is hard, and requires so much energy, but it is worth it.

The need to be understood is desired by all humans, and I am no different there.  But to understand others, to connect with them, that is center to my being.

I love people and I want them to feel welcomed on earth, loved by others, and when they talk I want to truly listen.  To do this I must work to exhaustion everyday, but I can’t imagine living life in a void.  It is nice when I make friends, but the most satisfaction I get is knowing I have given something to this amazing world.  I like being useful, and being able to offer help to those who are suffering,  To watch a lost human light up is amazing.  Their energy goes from grey to bright colours, illuminating the air around them and creating the most beautiful music.  It is the same magic as watching a broken Carousel come back to life.

When people are engaged, understood, and loved they glow, projecting their loving energy on everything around them.  Sometimes all it takes is one person to say “I hear you.”

So, I get up everyday with the purpose of loving others.  I fight the fires of you my dear Phoenix, and sometimes I channel your energy, and I count, and I walk, and I tame the inner dialogue and I write music.

But that phone call…that phone call was hard.  And so were the many others before it when they said;

“I know you can’t really understand how I feel.”

“You’re so high-functioning so maybe learning empathy was easier for you.”

“Are you officially diagnosed with Autism?  Maybe it isn’t Autism.”

“How can you teach my kid to survive in the normal world if you have the same problems?”

“Maybe you think the students understand you, but really they don’t.  Maybe you need to believe they understand you.”

“I think sometimes you confuse your emotions.  You think you are happy, but you don’t really feel happy.”

“My son has Asperger’s, not Autism.  I can’t have people thinking he is retarded.”

“You have a special musical gift, but you aren’t a good fit for what we are doing.”

“Really? You already passed a background check at another school? Huh.” (Yes, someone actually said this to me after learning about my Autism.  They were surprised that an Autistic person was qualified to work with children.  I’ve been teaching 25 years.)

————————-

When I was a child, I enjoyed playing with a talking toy called Teddy Ruxpin.  In one of his adventures, he travelled to a forest where the creatures there could change shape.  They called themselves “Nothings” because they had no shape of their own.

They’re right.  I am a nothing?

At least that is all they will ever see.  And as long as they are stuck seeing me as a mindless, out of control, emotionless being that is a threat to public safety, then I will remain a Nothing.

My accomplishments as a professional are vast.  I have won many awards in music, and taught hundreds of children to play music.  But these accomplishments are constantly diminished by the inability of others to see past the diagnostic criteria.  The worst part about being Nothing is being invisible.

These people who fight me, these people who see me as Nothing, they are not strangers.  The general public has issues but they have actually grown a great deal on acceptance.  It is disbelief in the Autistic community that is hurting me.

Some parents, professionals, and the many support organizations out there are fighting the wrong battles.  The cure dialogue has dominated the industry to the point that Autistics coming into adulthood are not prepared to live a long life with Autism.  While arguing over whether or not we should say “Autistic Person” or “Person with Autism” the big money organizations have hijacked the focus of research and therapy.  While we are still arguing over vaccines and gluten, hundreds of children were forced to have bleach enemas to cure their guts of Autism.

They thought they were Nothings.

By the end of Teddy Ruxpins adventure to the forest, Teddy realizes that the Nothings are truly remarkable.  He renamed them “Anythings” because they can be anything they want.  There is a big difference between nothing and anything.  To be nothing, I must be void of all life.  To be anything, I must be overflowing with life.  But I can see why some like to see people like me as nothings.  To take nothing and make it something is a 100% improvement on an IEP report.

But if I am an Anything, I am already filled with potential.  All I need is someone to say, “I hear you” and mean it.  And if I am an Anything, and I choose to fight the fire for the love of others, then I have empathy.

If we are going to make any progress in the Autism community, we must stop trying to make something from nothing.  As Teddy Ruxpin said, we’re not a Nothing, we are an Anything.  How high we learn to fly is how wide we spread our wings.

Hear me.  See me.  I am an Anything.

Your Anything,

Laura (Snamuh)

How to stop time

How to stop time

Dear Phoenix,

Negativity is a foul disease that infects the air of adventure.  The information wars between those who push and those who seek are louder now, and it seems fear has its fingers on the volume dial.  Though the heat from your flames are scorching me, for the first time I find I am able to channel the fire, and not hide from it.  How?

I have learned how to stop time.

Like shifting awareness to your peripheral vision when driving in a rain storm, Autism has taught me to use my heightened experience of the world as a way to develop a peripheral view of my interactions.

Acute spatial memory that allows me to revisit a place in my mind can also serve as a way to see an entire room from any corner without moving.  Vivid awareness of sound can help me blur mundane sounds into musical compositions.  Hyperfocus on detail can help me experience the glory of a waterfall down to the individual drop.

But what is most glorious is my inability to feel time.  I have no internal concept of the passage of time, which means I do not have to format my thinking to fit inside the neat little boxes humans build around them to feel accomplished.

When I am absorbed in my sensory world, I can stop time.  I feel no pressure from the outside world to return to structure.  In fact, I can be so still in my core that I am able to forget that all else exists beyond that suspended moment.

The world is not able to accept this from me.  Therapies and interventions for Autistic people are dripping with the the desire to reconstruct us so that we cage our sensory experience and replace it with rigour and obedience.  As if we are artificial intelligence gone rogue.

I too have read numerous books and studies on how to reduce my sensory experience so I can function more like my NT peers.  But that is wrong.

I was was wrong.

Why dim the light from your fire just so I can avoid being burned?  I can no longer be trapped with the flames.

I encourage others, go and sit in a public place where there are plenty of people walking by.  Half close your eyes for a moment and breathe in and out deeply for a minute.  While breathing, hear everything.  Open up your ears as if you are trying to hear the voices of people on the other side of a wall.  Let loud sounds and soft sounds be equal.  Break the words of others down into syllables creating a rhythm.

Now open your eyes.  Try and focus your visual priority into your peripheral vision.  As people pass by, do not interpret their intent.  Rather, see them as children sharing a bit of their love as they pass carefree to their next activity.

Once you feel totally open, find a pattern near you like the leaves on a tree or the tiles on a floor.  Zoom in on the pattern focusing on the individual components of the pattern.  When a person passes by or a sound occurs, visualize it as part of the pattern.  After a while, a bizarre but beautiful synchronicity will occur.

Somewhere in that exercise, time is released and its passing is no longer recognized.  I am able to stop time.  As I return to engaging with the world, I can see it’s beauty more vividly.  I can visualize my thoughts more clearly, and become more aware of the good in people.  Ego and pride melt away and fear becomes a dim flicker in the recess of my mind.

This is where resilience comes from.  It is not some sort of bravery.  It is merely the ability to absorb the collective energy that connects everything.  An ability derived from being open, being still, and being timeless.

Some people treat me like I do not matter, and this makes you burn, my dear Phoenix.  But it is the heat from the fire that makes the hot air balloon rise, stealing flight from the grips of gravity.  Let’s fly together Phoenix teaching the world how to stop time.  Only then will we humans truly understand how much we are capable of doing.

Love and infinity,

Laura (snamuh)

Note:

I have encountered so much disbelief and deliberate road blocking these past few weeks. Phoenix has even taken a few of my nights, not allowing me to sleep. So hear this, people who are blocking my students from inclusion, and people who trying to devalue my work:

YOUR FEAR WILL NOT STOP ME.

Teaching children with love and compassion is my life. I am not stopping, wavering, or changing my course. Am I scared? Absolutely. Phoenix is burning, but this time I’ve made Phoenix’s fire my fuel.

Pain is temporary. The impact of compassion is infinite.

Anger, Truth, and Comfort

Anger, Truth, and Comfort

Dear Phoenix,

Sometimes I anger people, and even more so lately, but this does not bother me.  Anger is their poison, not mine.
 
I believe in the good of people, and that we get locked away inside ourselves because we want to be accepted more than we want to speak objective truths.  Since what is popular to believe changes, we must constantly redefine ourselves and somewhere along the way, we no longer know who we are.  So we get angry, or frustrated.  We act out, we judge.
All of us want to belong.  We want to be accepted, and not merely tolerated.  But somehow we think this can be achieved by dismissing our unpopular truths, and keeping quiet the child at our core.
Because I am Autistic, my view on this is dismissed as my lack of social understanding. But perhaps I have something valid to contribute.  I’m not asking for the world to change to fit me, nor should it.  Getting everything I want right now is shortsighted and restricts me from growing as a human.  I never want to be too comfortable.  When I am comfortable, I stop achieving.
So don’t give me everything I want. And please don’t give me what you think I need.  That is equally shortsighted. Instead, give me and other Autistic people these things:
Give me your patience – Patience, even in the smallest amounts goes a very long way.  Patience is an underdeveloped quality in many humans because it requires high levels of discomfort to grow.  For comfort seekers, this makes their job harder.  Autistic people have no choice but to develop patience.  Not only do we have to be patient with our minds and bodies as we stumble through making connections, but then we have to fight societies conclusions on Autism.  All of society, not just the NT world. Yes, even other Autistic people can create barriers for us especially when society creates Autism celebrities that fit only the stereotypes of acceptable autism.
I can play violin, and show clips of kids on every part of the spectrum doing the same, and still face a chorus of disbelief, and criticism.  Inevitably someone in the crowd will isolate me saying, “but you’re so high functioning.”  When facing this everyday, I have to be patient.  I have to breathe and remind myself that I am disturbing people’s comfort zones, and their first reaction will be to defend it.  But when they extend their patience to me, and amazing dialogue takes place. We both learn.
Give me your unguarded attention – When people come to Autism conferences, they typically have their own ideas about Autism that they are looking to validate.  Each person that attends my presentation enters the room with a sort of wall in front of their faces.  This is why eye contact is so difficult for me.  Why should I allow someone to see into me through my eyes, when they are doing everything in their power to mask their own eyes?  That is not my lack of social skills.  It is the avoidance of asymmetry, a necessary form of defence for me.
As I caress the room for their unguarded attention, and the walls begin to fall, we develop a new understanding of Autism.  Imagine how much more we could learn from one another if the guards were checked at the door.
Give me your hand – One of my favourite activities is signing books for people after they have heard me speak.  I love the feedback, and especially enjoy hearing how I opened their minds to think differently.  Helping my fellow humans grow is pure joy for me.  But when the crowds clear, and the convention hall is emptied, I walk alone.  It is a very rare occasion that I am invited to events or engagements not related to Autism advocacy.  But I do understand why.
Living in a compartmentalized society, I fit into a particular category of people.  I am sought after for information and support.  I am an Autism Advocate, a teacher, and a musician.  So people think of me only when these situations arise.  I have come to expect this on a certain level, and I am ok with it, especially since the friendships I do have are so rich.  I have awesome friends.
What does make me worry is that the community of support surrounding people with autism want for their kids that which they are unwilling to give other Autistic adults and professionals.
Trusting me as an Autistic teacher means you must also presume competence in me, and in doing so you must also trust and presume competence in your own child, now and into adulthood.  The true stinger in that statement is the phrase, “into adulthood.”  How many people truly believe that their Autistic child will be a successful adult?  By parents and professionals opening up their social circles to people with Autism, valuing them as people, it gets easier to see a successful future and to convince society to do the same.
I am not asking for people to pity me and therefore invite me.  There is plenty of pity to go around and I don’t want any of that.  In fact, I would rather anger people by trying to expand their universe than to be conditionally accepted by their temporary contentment.  It still doesn’t change the fact that I love people and truly believe they are good.  So I will continue on everyday do something that scares me a little.  Like most of the Autistic people I know, I don’t want to sacrifice achievement for comfort.  Perhaps others could do the same.
Until next time,
Laura (snamuh)

Autism Disclosure Does Not Make Me a Target

Dear Phoenix,

It is often that I hear from parents that they are afraid to disclose their child’s Autism because they make their child a target.  My first question is, why do people believe this?

First, let me say what usually remains unsaid, Autism is only invisible from a selective point of view.  When onlookers define the parameters of normalcy, they look for certain sets of acceptable patterns.  This is usually assessed within the first 5 minutes upon meeting someone.  If an Autistic individual, such as myself, doesn’t display any stereotypical Autistic behaviour in that first 5 minutes, the onlooker determines the individual is average neutrally speaking.  The point of this assessment is really just used by all people to check for threats, not necessarily for normalcy.  But as people develop a keener sense of socially acceptable behavior (sometime in the teen years) this survival technique becomes a way of forming social cliques.

Since most of our public day to day interactions are brief 5 minutes encounters, Autism in someone like me is invisible.  After the first 5 minutes, the onlooker retains their original impression and challenging it is now going to be difficult.  Enter strange behaviour.  A sudden noise that makes jump, a tangle of people walking in different directions that makes me shudder, or getting disoriented on an escalator.  These unusual reactions are noticeable by people around me as odd, and they start to wonder why.

Without answering why, people start to distance themselves from me.  They start to worry I will be “taken advantage of” by some nasty person. Their belief I am a target of cruel people, makes me concerned that I am.  And with that I become a target.  Autism was never even mentioned.  Since I have now become a target, others feel they must take on the burden of caring for me, like a very young child.  Afraid the friendship will be asymmetrical, they back away.

Let’s reframe this idea into something more common, being female.  We have built a society that states because I am female, I am a target of male aggression.  Therefore I am taught not to walk around alone, especially at night.  I am taught to wear clothing that is not revealing, to watch how much I sway my hips when walking, or even to be aware of my public food choices.  There is nothing more frustrating than wanting to eat a hot dog or a popsicle but feel obligated to chose something else because eating these foods is hypsersexualized by our society.  The difference here is that I cannot hide being female.

As we grow together as a society, we are changing the ways we see women.  The rape culture is being countered by a generation that says being female doesn’t make us a target, but rather teaching our children that women are responsible for male sexual aggression does.  I am one who firmly believes that my eating a popsicle is nothing more than eating a popsicle and any male who makes an issue of it should be called down by society as a whole.  I was not born female for your pleasure, but rather because of a genetic lottery.

Similarly, with disabilities we have developed a victim culture.  People with disabilities are seens as helpless, defenseless, and a target of abuse.  This mentality among our societies make it acceptable to believe that because a person is born with a disability they are automatically a target and that it is up to that person’s caregivers to protect them.  Again, just like with the rape culture, we excuse the aggressor and put the onus on the person with the disability – or their lifelong caregiver.

The solution by many has been to not disclose the disability in cases where disability can be obscured, such as with some areas of Autism.  But what about those who cannot hide their Autism?  What about those people whose disability is as obvious as gender or skin colour?  This system of protection becomes a way of catering to systemic bigotry.

Another big problem with this approach is that Autistic people are denied community and authentic human connection.  The truth is I love my Autistic friends, but l want and love my Neurotypical friends too.  When people make disability an acceptable reason for placing a target on our backs, we are often forced into disability only environments.  Disclosure becomes the secret code word to an elite group of outcasts, left to rely on one or two caregivers.  And once the caregivers can no longer help, we are left to the underfunded, underdeveloped public system.

Reframing my interactions with disclosure, I avoid all of the aforementioned issues.  I openly disclose that I have Autism, which means I cannot hide it.  As with being female, my openness invites a more positive energy of acceptance around me.  My friends learn in the beginning that I have Autism, and that there are struggles I continue to have because of it.  They learn they do not have to take care of me, but rather be the same support they would be to any of their other friends.  The exchange is mutual as my unique view of the world also enriches their lives.

Being openly Autistic makes less of a target than being covertly Autistic.

With the conversation open, and mutual, I have had an opportunity to build a community of loving people.  And should I have the now rare encounter with a dangerous individual, I have more than my caregiver to stand up for me.  I have an entire village to stand up with me.  As we begin to erase the archaic views that people with disabilities are helpless, we build a community of people keeping the one or two ill intended people away, not with their fists but with their presence.

When we hide our disability, we also send the message to the disabled person that they should be ashamed of their disability.  We deprive them of friendship and community.  We are telling them cover up, don’t eat hot dogs in public.

Being openly Autistic, as with being openly female, makes me a unique individual who is comfortable with my condition of birth.  It makes me a seeker, instead of a hider.  It makes me reach out instead of falling into deep depression, losing myself in isolation.  Being openly Autistic means I am free to be me, toe walking and all. And anyone who tries to hurt me will face 100 angry faces, some strangers and some friends, making sure it the aggressor knows it is not okay to make me into a target.

Until next time,

Laura (Snamuh)

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)