Tag Archives: Emma

Educating Resting Minds (The Documentary: Unspoken)

Posted on October 21, 2015 by | 22 comments

Educating resting minds means patient repetition of mobile thinking.   My mind is lightning fast in a body whose parts often do things that give people a different impression.

How best to sway doubting minds?

They say write what you know and what could be better than having a film crew follow you around to document the lightning and the thunder.

Mom will add some things about the documentary, Unspoken, here now:

While Emma just wandered off, confident in my ability to take the baton she’s handed me and run with it, I’m not as sure.  So be kind to me.  I’ll do my best, but first, a couple of things about the documentary, Unspoken.

Unspoken is the name of the documentary Emma is co-directing with the very talented Julia Ngeow, produced by the equally talented Geneva Peschka and executive producer Marquise Stillwell from Open Box.   This is Emma’s project.   Not mine.  And if you’ve never heard of any of these folks, please go to the links I’ve provided.  Emma is working with an exceptionally talented group of people!

When Emma recently had a meeting with Unspoken’s editor, Marco Perez, he asked Emma, “Why are you doing this documentary?”  

Emma typed in response, “This is my life.  Mostly the positive, but sprinkled with salt on tough beliefs thought by others who decide they know what it’s like to be me or worse, don’t care.   This is about prejudices, segregation, human rights and fear.”

I then went on an impassioned, okay more like enraged, rant about societal expectations and so-called norms, the way autism and Autistic people are typically spoken of and to, how the voices of Autistic people are continually silenced, how infuriating it is, not to mention insulting (to say the very least) to Autistics and when I stopped to catch my breath I became aware of how loud my voice had gotten.  I mumbled something about how I obviously felt strongly about all of this and would stop talking now, thank you very much.  

And then Emma typed, “Let’s change people’s perceptions with love.  Can Mom be angry?  Yes, because she loves intensely.”  

Yeah, because that’s the way Emma is.  And I gave birth to her.  And how she is, the way she is, astonishes and amazes and I could go on and on and on and on about how proud and grateful I am to know such a person as her, let alone be her mother, but then that just might fall into the whole ranting thing again and I promised I wouldn’t do that.  So I’ll just stop now.  Again.  Really.  Enough.  

 Unspoken is in the hands of the very capable and extremely gifted editor Marco Perez.  Everyone is hoping for a release date sometime in 2016.  

Unspoken has a Facebook page – Unspoken Documentary.  So go over to Facebook and show it some love.   Okay there is no “love” button on Facebook, but the “like” button works really well.  (Or/and you can leave some of that love here too.)

Ready?  Set,  
Go!

Emma - 2015

Emma in Santorini, Greece August, 2015 Photograph by Ariane Zurcher

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Sleepovers and The Importance of Inclusion

Posted on October 9, 2012 by | 20 comments

Emma has asked to have a sleepover for months now.  She doesn’t want to have ‘a’ sleepover, as in a single sleepover, she wants to have sleepovers, the way her brother Nic does, almost every weekend.  She wants to have time away from us, where she is with another family and their children.  She wants to have the experience most parents and children take as a matter of course.  I’ve had parents say to me, “Oh sleepovers and play dates are highly over rated, she’s not missing much.”  But the truth is she IS missing a lot and the fact that she so desperately wants to have a sleepover is something I would assume ALL children desire.  I doubt any child doesn’t hope for this, whatever their neurology.  My guess is those who don’t ask for a sleepover are doing so not because they don’t want one, but because they do not have the ability to ask or communicate their wish.

The question has been how to orchestrate sleepovers for Emma when she’s never been invited to have a play date, forget a sleepover.   We have tried to have kids over to our house, but they all end up playing with Nic and while we’ve been able to get everyone to play a few games of duck, duck, goose, it still ends up being mostly a play date for Nic.  Last spring, Emma’s therapist, Joe invited Em over to his house for a sleepover with his wife’s god-daughter, and Emma had a great time.  But Emma wants more than a one time event and increasingly Richard and I have discussed how to get Emma over to people’s houses who have children Emma considers her friends on a more regular basis.

So while I was away at the AutCom Conference this weekend, Richard decided to do what he does best – take matters into his own hands.  He picked up the phone and called our friends asking them if Emma could have a sleepover at their house.  This is not something I feel comfortable doing.  It feels like an enormous imposition, I wouldn’t want to put people in an uncomfortable situation.  I wouldn’t want them to feel uncomfortable saying no, I wouldn’t want to feel the sadness I would feel if they did choose to say no.  Just as I cannot use restrooms in restaurants or stores unless I’ve actually bought something, I cannot call friends and ask if my child can come to their home for a sleepover…  but Richard can and did.  And they said they would be thrilled, in fact they said they were really honored that Em had asked to come to their house.

These are good friends, friends with twins, Nic’s age.  The twins, J & G have known Emma her entire life.  We adore all of them and have spent many a Sunday hanging out together.  When Emma heard that they’d invited her, she jumped up and down, threw her arms up in the air and twirled around while saying, “You get to have a sleepover at J & G’s house!   So excited to see J & G!”  Then she ran into her bedroom and came back out with her backpack filled with her nightie and a blanket.  Sunday night Richard and I received a text with these photographs.  (We have been given permission to post these photos.)

Emma used her skills of persuasion to get everyone to play a rousing game of Duck, duck, goose.


J & G & Em

The sleepover was a wild success!

When Emma came home the next day she ran over to me, threw her arms around my neck and said, “Do you want to know Emma’s sleepover was so much fun?”

“Yes!  I do want to know that!” I said.

“Emma had fun at Emma’s sleepover!”  She said and then ran into the other room to find her dad.  A few minutes later she came back and said, “Go to Gabby’s house?  Have a sleepover with Gabby?”  (Gabby is one of Emma’s cousins.)

I will have to take a page from Richard’s book, gulp down my nervousness and do something I would normally never do.  I will have to call my cousins and ask.  Maybe they’ll say no.  Maybe they’ll say yes.  Either way I have to ask because my daughter needs to do this.  She needs to have these experiences, they are important and my shyness and concerns have to take a back seat to the more important issue here, which is to do what I can to have Emma included.  The Autcom Conference gave me a glimpse into how important inclusion is, not just to those who are routinely excluded, but to all people; we all benefit from inclusion.

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

Posted on September 11, 2012 by | 74 comments
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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