Category Archives: self-advocacy

How we Communicate – A Podcast

*This was an assignment for English Composition to create a podcast about something you care about.  This is mine after many revisions and incorporating notes from my teacher.  A written transcript of the podcast is below, but if you can, listen first!

 

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Emma – 2016  Photograph by Pete Thompson

This voice?  The one that you’re hearing read these words?  Yeah, that one.  It isn’t my voice.  It’s my mom’s.  You’re probably wondering why a teenage girl would want her mom to read what she’s written.  In my case, it’s because I can’t read what I write out loud.  There’s not a direct line between my brain and my mouth.  It’s more like an elaborate maze.  I can’t speak so people understand what I mean.  If asked a question, my mouth says things that do not answer the question.  My brain doesn’t think in words the way most people’s do.  Names of things and people get handed to me instead of the words that would make sense to the person questioning me.  Sometimes I blurt out whole sentences from another time in my life.  (Emma’s voice) “I bounce a balloon to Emma.  I bounce it back to me.”  They may be images that remind me of the person I’m with or where I am, or words I’ve heard spoken by others, things that get caught in my mind, or unrelated scripts, but that convey the exact emotion I’m feeling.  (Emma’s voice) “No more ice skating.  Ice skating’s gone.”  In any case, what I manage to say usually baffles the people I am speaking to, causing them to misunderstand me.  Not being able to speak what’s in my heart so that others are able to understand can be challenging, but I can type things that I cannot reliably say.  There are computer generated voices that say the letters as I type them and sound like this – (Computerized young girl’s voice) “I am your friendly computerized female voice.  I sound like I’m maybe five years old.”  (Another computerized young girl’s voice) “Or I can sound like this and pretend I’m British.  But yeah, it’s just not me.”  Or I can sound like this.  Okay it’s not my voice, but with some direction, Mom sounds better than a computer.

Imagine for a minute that you can’t talk to people in any way that makes sense to them or you.  Imagine if every time you opened your mouth to speak other words tumbled out.  If you are like me, you might get used to not answering people’s questions or being able to stay on topic.  So what would you do?  How would you interact with people?  Would you ignore their questions?  Pretend you didn’t hear them?  How would you express yourself?  Maybe you would try to connect with scripts you’ve memorized, things you’ve heard other people say in similar situations or maybe you’d find non-word based ways to communicate.  That’s what I do.

(Sound of footsteps, people talking and the subway)

Sound is everywhere.  I don’t have a filtering system marking one particular sound as more important than another.  Can you understand what I’m saying right now?  Mom had to raise the volume of her voice so that you could hear it above all the other noise.  My brain doesn’t do that.  It hears all sounds equally and does not discriminate.  But some people’s voices are not as dramatic to my ear as the honking of a horn.  I love the sound of honking horns.  (Horns honking and traffic noise)  Favoring some sounds dilutes others, but music has the best sounds of all.  (Body Knows Best – Anya Marina)

Music is my first language.  It is a friend who loves me unconditionally.  It’s there when I need it and does not shed a tear if ignored for some time.  Music is a positive force as it stands by my side.  I like hearing the same melodies repeated and did so even when I was very young.  It’s been a comfort to me as long as I can remember.  Music grounds me and plays a huge role in seeking my creativity as it allows me to perform as I choose to.  It’s a way to communicate; it gives me hope, tells me I am not alone and inspires me to create.  Though people respond differently to music, I believe there are always emotions involved. Music has the ability to transform my fearsome thoughts laden with anxiety and stress.  (Music fades out)  It calms me and this has been the case throughout my life.  When singing lyrics I stumble and have trouble articulating the words, (Lose Yourself – Eminem) but I can remember the sounds I hear and recreate them with my voice.  When I sing I am not apart from, but instead am part of.

Music can be both private and public, but it needs to be loud.  (Music gets louder) No one composes music in a whisper.  My body needs to feel the beat so that I can be consumed by it.  (Volume increases steadily and then fades)  When that happens I become part of the music, like another instrument or an extension of it.  I jump and dance and move.  My arms swing or are raised up and my head bops, my whole body keeps time to the beat.  I’m transported to another reality and it is in this alternate reality that I am most happy and comfortable.

At home my need for high volume can cause problems because the members of my family have differing sensory needs that come in direct conflict with mine.  (Heartless – Kanye WestMy older brother has to have music as background, while I perform alongside, so it makes sense for mine to be public and his to be private.

(Emma’s brother)  “Yeah I think it’s totally fair that you’re able to use the living room.  It’s not like you play bad music or anything.  If you played music I didn’t really like, I’ll just shut the door and go in my room and hang out.”

My mom and dad both work at home and need quiet in order to concentrate.  I am told to wear headphones, which encumber my movement and dilute my experience.  My family has worked out a solution that allows me to commandeer the living room in the evening.  For several hours I am blissfully able to indulge my love of loud music and dancing while my brother stays in his room or hangs out with my parents in theirs.

Until about a year ago I didn’t know the joy of creating music.  Until then I was an audience member, but not a participant.  My parents encouraged my love of music and hired teachers to help me expand my interests.  Guitar is beautiful to listen to, but it is difficult for my fingers to recreate the sounds flowing through my mind.  Piano is also hard and requires dedication and lots of practice, but I think it’s a better fit for me.  Singing is easy and my lack of inhibitions, great sense of tone and ability to mimic sounds I hear makes it the best choice of all.   Eliot is my piano teacher and Karen is my singing coach.  Eliot came first.

(Eliot) “Emma has a great ear.  She can learn to sing new melodies really quickly and accurately.  Recently she’s been listening to the car horns outside and sings their exact pitch.  Emma is a fun, expressive and creative singer/performer.  She brings a lot of life, passion and feel to the material.”

Karen came next.

(Karen) “Emma has really great pitch control.  She knows exactly how the melodies go whether she knows the words or not and she makes it a real point to study each specific thing that happens in the song and can honor each thing in the song by movement and she can also emulate the sound really well as far as consonants and vowels.”  

(Gimme Resurrection – Anya MarinaKaren and I have great fun together.  I feel at ease in her presence, which is important when you are learning new things and trying to be creative.

Eliot and Karen have taught me to be patient with myself.  From them I have learned how hard it is to become masterful and yet I’ve decided it’s better to love the process of learning as much as the final product.  Communicating isn’t just talking, it’s developing a connection with another.  Music connects us all.  I wrote these lyrics and composed this melody, so this voice?  Yeah, this one’s mine.

Emma sings Over and Coming
Eliot Krimsky on keyboard

The girl’s going in the bed
the girl is going inside
the girl is going outside.

Who is this girl I see?
Who is that girl I see?
Watch careful-ee-ee-ey
Listen to me-ee-ee

Over and coming and over and coming,
over and coming and over and coming

Go, go, go,
go, go, go,
go, go, go, go

Go, go, go,
go, go, go,
go, go, go, go

Find a way
to seize the day
Dare to be the leading girl!

The girl walks out the door
the girl walks in the door
the girl is a teenager.

I am the girl you see,
I am this girl you see,
Do you believe in me?
Please do believe in me.

I’m ready to fly if you let me,
I’ll go
Turn up the music and
just don’t say no.

Starting and going and starting and going
starting and going and starting and going
Starting and going

Do, do, do, do, do, do….

Mirror, Mirror, What do you See?

I have a piece of writing to share.

When your eyes are drawn to a mirror, what do you see?

Is it familiar or unfamiliar?

Do you like what you see?

There may be a struggle with recognition.  Stay with it.

Imagine something beautiful.

Make yourself smile and hold it.

Recite a favorite story or joke.  This can be done in silence or in speaking.

Repeat your name however you would like to.

Do you like what you see?

The End ~ By Emma Zurcher-Long

Mirror, Mirror, What do you See?

Mirror, Mirror, What do you See?

The Insidiousness of Prejudice

A year ago, I would have gone to a parent/teacher conference and not thought twice about my daughter being in the same room while we spoke about her.  Six months ago, I knew enough to know that she understood what was being said even if she didn’t indicate that she did and would move to another room or arrange for child care during a conference so she would not be present.

This morning I received a passionate comment from someone who was responding to another comment about parent/teacher conferences.   You can see the whole comment by going to yesterday’s post, but she ended with this:

“These things can ONLY happen in context of a culture of acceptance of the exclusion of Autistic people from discussions about our own lives, and of acceptance of the ‘need’ to speak of us in negative inaccurate terms because that supposedly fulfills some ‘need’ that will bring us help and support. It doesn’t EVER bring us the support we actually need because negative inaccurate information ‘about’ us means any support is founded in untruth and therefore is not help and support of US as the ACTUAL human beings we are.

PLEASE, if you truly want to help Autistic people, stand up for our right to be part of the conversation about our own lives from a VERY young age. Advocating FOR us is GREAT, but ONLY if the purpose of that is to support us in our SELF-advocacy… and to put pressure on professionals to accept OUR voices and OUR choices as the determining forces in OUR lives.”

My initial reaction was a defensive one.  My first thought was – but children are never present at parent/teacher conferences.  And then I realized that isn’t true.  My son Nic is asked to attend our parent/teacher conferences and has been required to attend them since he entered middle school (the fifth grade, the age Emma is now).  My second thought was, but what if one of her teachers or an aide said something awful about Emma in front of her, what if they spoke of her in language that would be hurtful?  I can’t control how others speak.  But then I realized that were this to happen in my son’s presence I would not hesitate in saying something in front of him to that person.  I would correct them and tell them why it was unacceptable and he would hear this and understand that this person was wrong in speaking this way about him.  Then I thought, but wait, we might need to discuss topics that might make her sad, things about self-injurious behaviors or how she ran out into the hallway and it wouldn’t be appropriate for her to hear these kinds of conversations, but again I thought of my son and realized how we would include him in the conversation.  As I went through the various reasons why I couldn’t do what the commenter suggested, I saw quickly just how insidious the ingrained prejudices regarding autism are.  I saw how I still have so much more to learn.  And so I continue to and I tweak my thinking and my behavior and then someone else tells me something and I have to think about their words and then I have to tweak my behavior some more.

Directly after reading this thought-provoking comment (I am so grateful to the writer for having sent it) I received an email from someone I care deeply about.  I do not have explicit permission to write about the specifics so I will not, but it was about where these kinds of ingrained beliefs can lead.  It was about abuse.  It was a story I am becoming more and more familiar with.  It was about someone I know.  It was about a defenseless, nonverbal child.  It was about more than one event.  It was about many, many abuses occurring over and over by many, many different people.  My horror is never lessened no matter how many times I hear of this.  In fact my horror increases.  What I used to believe, what I used to console myself with, that these were unusual, isolated instances of horrible people behaving in heinous way, is not something I can cling to any more.  These stories are everywhere and I am hearing them all the time now.  I cannot console myself that they are unusual.  I can no longer wrap myself in a cocoon of optimistic assurances that this hasn’t happened and will never happen to my daughter, because even if we are lucky enough that they do not happen to our specific child, they are occurring constantly to other people’s children.  How is that any better?  How is that any different?

The abuse of people who are considered “less than” and “incompetent”.  The physical, sexual and emotional abuse that Autistic people and children are having to endure at the hands of people ALL THE TIME that they come into contact with, at school, their care givers, the people they are suppose to be able to trust, their relatives, neighbors, the list goes on and on.  This is going on around us and to those we love and care about.  This is about people who are hurting, not just our children, but people all over the world who are deemed “less than”.  This is so much bigger than “our children”.

Em’s “self-portrait” – 2011

SpyGear, Flamingos, Freedom Tower And My Handsome Husband

Update:  Emma arrived safely at her new school via the school bus this morning!  The tracking device, surveillance cameras, James Bond style secret pen with microphone hidden in her backpack, spy cam disguised as trendy sunglasses and stress relieving songs of the humpback Whale downloaded (for me) worked wonders…  (Just kidding)

I encouraged Emma to rehearse with me this morning what she might say if the bus didn’t take her to the correct school again and Em, never one to pass up an opportunity to perform, said in a loud, clear voice, while dramatically gesticulating, “You’re going the wrong way!  You have to go this way!  I go to new school..  I go to ______  (name of her new school)!”  Then she beamed at me as I applauded and cheered.

Yay Emma!

Emma in her favorite Flamingo costume last night on the roof

Playing with Daddy who donned Emma’s hat as though it were a feathered pith helmet.  Can we all just gasp in appreciation at Emma’s magenta tail feathers! 

The light was so beautiful last night – A glimpse of the Empire State Building

And to the South, Construction of Freedom Tower Continues..

And finally my handsome husband…  who was engaged in an animated conversation with our son, Nic (off camera) about his, just released and new favorite, video game – Borderlands2

Emma Refuses To Get Off the Bus and A Self Advocate is Born!

Monday morning Richard and I awaited Emma’s school bus.  I had prepped Em the night before.  “Okay, so Em.  The bus is going to come and it’ll pick you up and take you to your new school, okay?”
Em nodded her head.
“When the bus gets to your new school, it’s going to let you off in the front and there will be someone to meet you.  They’ll take you into the auditorium where your teacher will be waiting for you.”
“Go see Katie!”
“Yeah and Katie will take you upstairs to your classroom.”
“Go with Mommy!”
“No, Em.  I can’t go on the bus with you.  They won’t let me.  But I’ll wait for it with you, okay?”
“Okay.”

Emma bounded back and forth on the sidewalk in front of us as we waited.  When the bus pulled up Em ran up the steps, we spoke with the driver, who reassured us we had the correct contact info for her and as the bus pulled away I waved, remarking to Richard how nice it was to have such a friendly driver.

Forty five minutes later the bus driver called, saying Emma was very upset and refused to get off the bus.  “What?”  I heard Richard say.  “Well that’s because you’ve taken her to the wrong school!” There was a pause.  “Uh-huh.  Yeah, well it’s good she didn’t get off because that’s not her school.” Meanwhile I began talking to Richard as though the driver could hear me.  “They have to bring her home and they need to tell her what they’re doing.  She’s probably really upset and confused.  They need to tell her…”  Richard thrust the phone at me.

To the apologetic driver I said, “I’m sure Emma is upset.  May I speak to her?”

I could hear the driver, who was clearly upset herself say to someone, “hand my phone to her. No it’s okay.  Give her the phone, it’s her Mom.”  And in the background I could hear Emma’s anxiety laced voice repeating, “No I don’t want to get off the bus.  Emma goes to new school!”
“Your mommy’s on the phone, honey.  Here…”
Then I could hear breathing and Em’s voice very quietly said, “Mommy?”
“Emmy, Emmy!  The driver made a mistake.  They’re going to take you back home now.  I’m waiting for you.  Okay?”
“They go wrong way.  Emma said, no!  NO!  I don’t want to go to old school.  I want to go to new school!  I don’t want to get off the bus!”
“That’s right Em.  You did the right thing.  You told them they were going the wrong way.  They’re going to take you home now.”
“Go home, see Mommy!  I’m going to be right back!”
“Yes, Em.  I’ll see you in a few minutes.  I’m waiting for you.”

When I got off the phone I looked at Richard and said, “Wow.”  We looked at each other.  “She advocated for herself.  She totally advocated for herself.  Wow!”

When the bus arrived, returning Emma to me, I gathered her in my arms and said, “Em!  I am so proud of you!”
“No not this way!”  Emma pointed east toward her old school.  “You go wrong way.  You have to go this way!”  Emma said, pointing west, toward her new school.
“You are so awesome, Em.  If they had listened to you, you could have directed them to your school!  You advocated for yourself!  You told them they were going the wrong way.”
Emma beamed.
“You did the right thing!  You refused to get off the bus.  I’m so proud of you!”

By the time we got upstairs Emma was smiling and laughing.  Richard congratulated her on standing up for herself and for trying to make them understand.  With each compliment Emma’s smile grew wider.

By the time Richard had gathered his things to take her to her new school, Emma was happy, repeating the things she’d said to the bus driver.  It wasn’t until she came to say good-bye that I saw the teeth marks on her hand.

“Hey Emmy, I said, holding her close.  “Did you bite yourself?”
Emma nodded her head.  “Emma screamed.  Emma was frustrated!”
“I bet you were.  You were trying to tell them they were going to the wrong school and they didn’t listen.”  I stroked her head.
“Emma goes to new school now!”

“Yeah, Em.  You’re awesome. I am so, so proud of you!”

As she and Richard left, I thought about all our children who are trying so hard to communicate and yet aren’t being heard.  I imagined Emma sitting on that bus trying to make them understand that they were going the wrong way.  Using the right words, but not being understood. And finally, because no one was listening, no one was considering that she actually knew what she was talking about, she began to scream and bite herself.

My dream for Emma is that she be able to advocate for herself.

Now she is and I could not be prouder.

Em and the School Bus

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