Changing the Story

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Changing the Story

I have wrestled all summer with how to qualify the transition we’re in. For Henry this summer has been a perfect blueprint of his future — his plan is to take the rest of his life off. He describes graduation from High School as ‘retirement’. He’s told teachers, friends, disinterested passers-by, and members of the media that his next step would be ‘staying home and playing games’. Between graduation and moving house there was a good deal of ‘staying home and playing games’.  

I remember when he was an infant and I was warned that if I didn’t move from my weak breast milk to formula he would be diagnosed with ‘failure to thrive’. That is a gut punch of a phrase for a new mommy. I don’t know what the medical establishment means by it, but what it sounded like, smelled like, tasted like and felt like to me was: YOU are failing to thrive your baby.

This transition has felt like the adult equivalent to ‘failure to thrive’. I leave him in the morning with enough food for the day and text him every hour. He rarely texts back. I developed an infected tear duct in my left eye the week of his graduation. Two weeks later when we closed on our house it moved to the right eye. Did I mention we also bought a house?

In order to get Henry to do something, anything, I created a daily to-do list of hygiene behaviors, meal plans, and one chore — vacuuming, collecting the garbage, wiping down the bathrooms.  Everything had a check box. If I forget the daily print out, I come home to him in bed at 4:30 p.m. in the same clothes as the night before.  He gets up and has breakfast at dinner time.  If I leave the daily print out, I come home to a clean and fresh smelling young man who has proudly accomplished all his chores by 10a.m. so he can get back to ‘staying home and playing games’. 

While for me this feels like failure to thrive, I started wondering if for Henry this isn’t as dire a situation. Maybe the push to stay home and play games wasn’t so much a regression, a failure to thrive, but a true break. He’s been supervised on a 1 - 4 ratio for much of his life. His days were scheduled to the minute. What if he just wanted a break? My sister with her two adult children and my friend with her four, described their kids’ responses to graduation as a similar experience of waywardness, confusion and need for a break —  though the behaviors were slightly more sophisticated and involved tattoos, piercings, job quitting or living in a hammock in the back yard. 

Towards the end of August, I spoke with him in a meeting on our back porch. “Henry, most people who graduate take a break for the summer.  They back-pack in Europe. They go on a camping trip. They live at the beach and do odd jobs.  Summer is ending soon and you’ll need to get started on your work life now that your school life has ended.”

Changing the story from my failure to launch my son into thriving to he’s on the autistic equivalent to backpacking in Europe has at least caused my eye infections to clear up. His graduation is about him and about me — and we have two different stories about it. Finding the story that serves us both best is the challenge and the reward.

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People are looking for you...

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People are looking for you...

Every year Rodney Whitaker comes to Orlando to lead a jazz camp for students. I got to interview him and his colleague, Diego Rivera during that camp, right before they performed their 'Professors of Jazz' concert. When I saw Rodney and his other professors play together, I knew that jazz was what I love to do.  It's what I always want to be doing.  I'm not talking about the music, I'm talking about the exchange of ideas, the flow of energy.  They were playing songs that were known, recorded and written.  They were playing them in their own way, with their own unique contributions, making those offers right in the moment onstage, in front of an audience. To have that kind of flow within the prescribed music, they had to be in constant communication with each other -- looks, nods, feeling the groove, and sometimes talking to each other onstage, whispered picks ups or ideas, and always the encouragement of purely enjoying what the other was offering.  It was magic. It was inspiration. It was jazz. 

Here are some of the quotes from the conversation with Rodney that I go back to for inspiration. 

On your journey:  "I never made it back, but I made it back." In reference to leaving school and then becoming a professor.  

On finding inspiration: "Some people it’s Jesus. Some people It’s Jazz."

On stepping out: "People are looking for you. They are looking for you; they might not know it’s you specifically, but when they hear you or they see you, they know it’s you."

I hold that as my beacon when I get lost in the work or in the fear of producing the work -- people are looking for me, so get the work done and get it out there. You can take a listen to the whole conversation here.  

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Fragile: Move With Care

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Fragile: Move With Care

When we first moved into the third floor apartment overlooking Shingle Creek and the Mall of the Millenia, we knew it would be a temporary living space. It is an apartment, after all. Sitting on my balcony, sipping coffee and bird-watching at the headwaters to the Everglades has been a joy. Being within walking distance of Macy’s is also a joy but we're ready to move on. 

I thought Henry enjoyed it here, but was also pretty sure that he knew this was not our forever home. When I told him last week that we found a house and we were going to move, I didn’t expect a flat out NO. A frowning, head-shaking NO.  

Then we did all the things you do when you are managing a disorder that dislikes change. I showed him pictures of the house. I let him pick out his room. I showed him the pool and we talked about when he would swim. We created a calendar — packing days, Special Olympics Summer Camp days, staying at Mimi & Granddad’s while the house is painted days, moving days, in the new house day.  A full two months of events, all set out for him.  Then he was excited. Or so I thought.

I went into his room to give him a suitcase and noticed that he’d taken all the pillows and blankets off his bed. They were in the walk-in closet on the floor, arranged like a little sleeping cave.  Or maybe a cocoon. I’m hoping for a cocoon. 

Henry’s behavior got me thinking about my response to moving into our dream home with a writing room just for me. I thought I was doing great -- I'm excited! Then I noticed that I wasn’t sleeping very well. I was eating dinner, not meals exactly, but fists full of Cheez-its.  Every few hours I was snapping, “Where the hell are my glasses?!” 

I asked my husband to go look in Henry’s closet and tell me what he thought. He surveyed the tent-cave and said, “It’s ok. I’m nervous too.”  The mighty Egyptian man is nervous too.

Because that’s what we are when we make a change in life. Even though I am thrilled, my system — my body, my central nervous system, my emotions — are in a whirl. I don’t have autism, so I know how to cope. I pin home decor on Pinterest, cram Cheez-its and snap about the location of my glasses (you guessed it -- on top of my head. Every time.) Healthy? Maybe not, but socially acceptable. 

I want to be like Henry and know when I need to curl up on the closet floor. It’s ok to take time to be overwhelmed. Overwhelmed is a state, and it happens to my system, whether I like it or not.  Being overwhelmed isn’t a reflection of my truth or who I am and that's what it is for Henry.  A state that requires care. 

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French Fries, Faith and Losing a Friend. 

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French Fries, Faith and Losing a Friend. 

There was a particularly desperate time in my life. At seven years old, Henry was in the full bloom of behaviors. In the car, he’d reach from the back seat to my driver’s seat and pull my hair. He’d scream. I’d scream. Once, I pulled under an overpass and we shrieked until there was no more sound. Then we drove on. 

One of those shrieking, desperate afternoons I was wearing, sweat pants, and a pale t-shirt with a sweater, all purchased from the Longwood Goodwill, as were all my clothes at that time. Henry insisted we go inside to the play place. The play place was a particular trial for me. He’d loose his socks or shoes or some article of clothing up in the highest tube. His play would confuse and challenge the other kids. The fear of a toileting mishap was constant. That day I was too tired and beaten up to argue, so in we went.  

In the warm afternoon I removed my sweater and left it in the car. It wasn’t until after we were in line that I saw that the pattern on my bargain box bra was showing through the modest pale pink shirt. I looked Iike I’d been panhandling for the 50 cents for our fries. 

When we got to the counter, the kid stepped aside to let the manager assist us. I looked into the face of my friend and pastor, Orlando Rivera. He was getting a business degree and felt he needed to have real-world management experience. He was also pastoring a church downtown and had moved his family, his wife and and then three or four of what would ultimately become 10 children, to a home on Westmoreland Street. There in the poorest neighborhood, they lived church from their front porch.  

It was school pick up time, so the play place was miraculously empty. Orlando took a break and brought a tray of fries — GFCF for Henry, vegetarian for him. We started what would be a semi-regular session. Henry played in his way and I received the counsel of my friend, pastor and manager of the Winter Park McDonalds.  

Last week, I got a text from my friend Sheryl whose birthday falls on August 3rd, the same day as mine, the same day as Orlando’s.  “Our birthday brother…” it started. I read it several times without understanding. Tragic. Traffic. Accident. Lost. And then I found myself on the ground and heard a wailing sound. My husband was next to me holding my phone saying, “I’m so sorry.”  

Nothing in my faith tradition, religious practices or in holy text helps me make sense here.  There is no a+b=c to look up. There’s no information to apply that helps me understand. 

But here’s what comes to me from the mystery of faith: the resonance of a man who took time for french fries with a desperate mother is eternal. It rings now in the lives of his children. It rings now in my life and Henry’s life. And its beautiful sound is ringing now in the heavenlies. 

Orlando Rivera

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Being a Sustainable Nut or What Happens When Your Child Graduates

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Being a Sustainable Nut or What Happens When Your Child Graduates

It happened last week, a high school graduation.  It was expected, strived for, and it came as a total surprise. I knew, and yet I didn’t know, that this was an event for me as much as it was for him. 

I once told a new pediatrician Henry’s health history: Well, he had a placental abruption when he was born.

“Actually, you had a placental abruption. That was something that happened to you,” he said in that quiet way doctors have of sharing life-changing information.  Oh, yes. To me. I had that event. Henry had a linked event, that he was born needing to be resuscitated.  Same people involved, same time, not the same events.   

From senior photos through to the actual ceremony, I held on to this like a mantra, delivering it to myself in the same kind pediatrician tone: Actually, this is happening to you. 

He is graduating from High School.  Yes, that’s happening to him.  He’s thrilled.  He’s excited.  He’s the star of an event.  He gets to wear a costume. 

What is happening to me is that I am matriculating a boy into an adult life. I won’t be taking him to school in the mornings or sending in snack money. I deleted the recurring Tuesday/Wednesday  ‘Pick up HB & Giles’ appointments from my outlook calendar.  They will not recur. 

My friends and family came to the graduation. They brought cards for him, tucked with cash and gifts. One friend brought me a a gift. It is a necklace made from sustainable nuts. 

You don’t have to look very far for an apt metaphor of my 18 year effort towards getting him the education he needed. 

A Sustainable Nut:

A nut is a dry fruit consisting of an edible kernel or meat enclosed in a woody or leathery shell. 

Synonyms of sustainable include: 

continual

viable

feasible

unceasing

imperishable

renewable

supportable

unending

worthwhile

The meaty kernel of continual, unceasing, work created viable, feasible, imperishable results in a person who has turned it into fuel that will be renewable support for him in this seemingly-unending pummeling of life that is ultimately, worthwhile. 

It’s a perfect honor. And it’s really pretty too.

 

Sustainable Nut

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Good day, Orlando and Hello World.

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Good day, Orlando and Hello World.

There's an ongoing discussion with myself – am I Mama Rose, pushing her child too hard or am I the supportive mom, giving him opportunities to shine? It’s a line I’m always looking at and trying not to cross. I want Henry to shine.  I want everyone to experience the greatness of Henry.  Mostly I want Henry to experience the greatness of Henry. 

We were on a local morning show on the last day of Autism Awareness Month and originally, we were going to do some bits — Henry was going to read from the teleprompter, throw to commercial, talk show host stuff. But production schedules changed and instead we were interviewed. I said yes because I was so grateful for the opportunity but really, being interviewed isn’t his thing. He jumbles his syntax with a lot of “I like for my friends”, and likes to retain a talk show host patter, even when he has nothing to say so there’s a lot of babble before he gets to a point. 

I want him to be his very best. I want him to do his thing.  And I want him to be who he is.  Who he is, is an extraordinarily gifted person with a talent for entertaining others. Sometimes that quality is on fire.

And who he is, is a young man with autism.  Sometimes that is not so cute.  Like when he handles stress by projectile vomiting in the car. Which was a possibility for our TV appearance, so we travelled with an extra shirt, a plastic bag and a towel. 

Sometimes, it’s fascinating and intriguing — listening to his wild syntax and how he circles and circles and circles and then he lands with something beautiful, like when he was being interviewed by Leah Nash on her podcast. He was all over the place and then in the midst of some kind of crazy sentence I heard, “sometimes I get overwhelmed for my sensory.” I have never heard him talk about having sensory issues.  I’ve never heard him talk about being overwhelmed. 

Sometimes it’s warm and delightful, as he was on that morning being interviewed by Bob and Amy. He was nervous.  He rarely gets nervous.  Maybe because we were doing something different than we’d planned on.  Maybe because I was there and it was really an interview with me with him as the sidekick.  Maybe it’s because he hasn’t been in a real TV studio before.  When I asked, he said he was fine. He’s always Yes and always Fine and always Happy.  When tears are pouring down his face he’s saying “Happy”.  

For me, even though he didn’t get to do exactly his thing, he shined.  At the wrap up he kind of stops the conversation and says “I love you guys” to the hosts.  

I (on the Mama Rose side) wanted him to do hilarious bits and show-off his talk show hosting skills. On supportive mom side, I got to enjoy the greatness of Henry --  him being him with wild syntax, relating everything back to his friends, mentioning every teacher he’s ever had and telling the hosts, “I love you guys.” 

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Who Am I Anyway?

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Who Am I Anyway?

When everyone was playing the 'Old Headshot' game and posting their black and whites, the line from A Chorus Line "Who am I anyway, am I my resume?" sang through my mind all day.  On the day, I couldn't find any of my old headshots, which used to be in stacks in the closet. I finally found a few strays, each had a different version of my face and a different name.  I think my name has changed more than my face. 

When I was 10 years old I put my foot down. I would no longer be called Alice Ann.  It was a baby name.  Obviously.  I mean I’d been called that since I was a baby.  And double-digit me already realized the value of branding and Alice Ann felt too soft. I may have looked adorable with my toothy gap and blonde pigtails, but I was a force to be reckoned with. A fact, BTWS and PS, that was also the case since I was a baby.  

With our moving around Navy life, it wasn’t that big of an impact.  It wasn’t like people knew me from forever.  I didn’t grow up with anyone calling me Alice Ann who couldn’t break the habit.  Only family and we are pretty spread out.  On the occasion that I see my cousin,  she will still sometimes call me Alice Ann. She and I are about the same age and she happens to be Elizabeth Ann, so it’s makes sense. And I’m not as adamant about it now, especially since it turns out that changing my name became a habit. 

It seems that every 10 years I change my name.  11 years after my 10 year old move to Alice, I adopted a stage name: Alice Fairfax, from a place I lived not for my love of English literature. My maiden name was too challenging. If you’ve ever had to write me a check or call me for my table, you’ve gotten it wrong enough times to know. Henry’s last name is Bass, which I was for a time. When I got divorced, I didn’t change my name back to my cumbersome maiden name to help Henry but I wasn’t a Bass anymore. I didn’t know what to be. I couldn’t put my foot down or my finger on it. 

When I married my husband, I expected to be Alice Ahmed.  I really liked that.  Nice and smooth.  Except that when he came into the country, Immigration chose to adopt the last name on his birth certificate as his surname. There aren’t surnames in Egypt, you use your Father’s first name.  On his birth certificate are the names of his grandfathers up to the name of his great grandfather, Ramadan.  So then both he and I became Ramadans. Hilarious to his family in Egypt. Hilarious to my family in the U.S. A friend said, “You just don’t seem like the holy month of fasting.”  

When my husband became a U.S. citizen there was a box: check here if you’d like to change your surname back. Apparently, it’s still a real thing. So he checked the box and now he’s who he is.  But I’m still a Ramadan.  It’s not a confusing time for me but it is a launching time. Launching Henry from school to work.  Launching my creative work in a new way.  At the last seminar I led, I tried to introduce myself and I tripped over my last name.  Ramadan isn’t right.  I’ve been playing with my maiden name again, but when I tried to use it, I tripped again. I’ve moved on. It’s a baby name.  

So the launch continues. I’m trying Alice Fairfax on for size.  It seems roomy and comfortable. I ordered business cards with that name.  Alice Fairfax. Yes. That’s it. I’m putting my foot down. For now. Check back in 2028.   

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Your Performance Potential

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Your Performance Potential

Spring break in Florida means cool air, warm sun, good hair and a flood of family and friends visiting from the tundra. A month ago Rollins College theater alums descended for a reunion. My high school teacher, a Rollins grad from the '70s, and I stood on the stage at the Annie Russell Theater with my former classmates from the late '80s, alongside colleagues from my Disney career who graduated in the early '80s. An interesting discovery was that many had gone from lives in the performing arts to careers in counseling, mental health and life coaching.  It makes sense -- our art is discovering character and motivation.  It reminded me of meeting  Elma Linz Kanefield who pioneered the counseling program at The Juilliard School.  Her focus is on counseling and coaching the performing artist.  Here's an excerpt of our conversation. 

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There Are No Snacks

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There Are No Snacks

Henry called me on President’s Day.  He never calls me.  When I leave him home alone to grocery shop he has a set of rules:

  • Don’t Go Outside
  • Don’t Answer the Door
  • Answer Me When I Call
  • Don’t Jump On The Bed

He never answers, preferring to text me three days later to tell me he’s fine.

I was at work when his name and face appeared on my screen.

“Hi, Honey. Are you OK?”

“Hi, Mom.”

There was despair in his voice in just those two words.

“I fell. I’m hurt.”

“Oh no. What happened?”

“I fell. I’m hurt.  And there’s no snacks.”

“Oh no, I’m so sorry.”

Except that I’m not sorry. I’m the one who instituted the no-snacks policy.  He turned 22 and his teenage-boy metabolism is slowing to adult-man rate but he’s still eating like a teenage boy.  We met with his doctor who told him to lose weight. I printed up memos for the refrigerators of all three houses where he divides his time. The schedule outlines specific times for meals and one snack. Then for his science project he wouldn’t choose a topic, so I chose for him and titled it You Get A Serving Size! and he had to cut out pictures of serving sizes and we made a meme of Oprah for the heading. Yeah. I’m that mom. 

“So, you fell.  Are you at Dad’s house?”

“Yeah.  I’m at my Dad’s.”

“Did you talk to your Dad about being hurt?”

“Yeah, I talked to my Dad.  I’m hurt. And there are no snacks.”

“What hurts? Your knee, your head? Are you bleeding?”

“My tummy hurts.  There are no snacks.”

“Hmm.  Maybe the problem isn’t the fall, maybe it’s that you’re frustrated that there are no snacks.”

“I’m hurt and there are no snacks.”

“I’m so sorry.  I love you.  Do you feel better?”

“Yeah.” Click.

I followed up with a  congratulatory call to his Dad for maintaining the no-snacks policy under what was obviously intense pressure.

Giving up something that fills us is hard, even if the thing is artificially flavored and your goal is something much more fulfilling.  It feels empty in your tummy.  If makes every little bump hurt worse when there are no snacks.  The cosmic reality in this is that there are no snacks.  There are no short cuts to what we really want.  There’s no way to get that true fullness we crave by shoving something, anything, into that empty space.

I’m saying this from halfway through a Lenten fast from alcohol. How can there be three more Sundays of this?! Yesterday, I toyed with the idea of lying to my Muslim husband and saying that in the Christian faith we only fast for half the time, so I could have a chardonnay now.  NOW. Then I thought, that’s just me facetiming God and saying “I’m hurt and there are no snacks.” My tummy is empty and that space usually filled by a Sunday afternoon white feels uncomfortable and ill-fitting and a little boring. There is something I want that is filling. I’m not sure what it is exactly, but I know that the best way to find out is to clear out room, forgo snacks, feel empty and make room for something really filling. 

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A Chat with Broadway's Dan LoBuono

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A Chat with Broadway's Dan LoBuono

On Monday evening the Actor's Fund is producing the 15th Anniversary Reunion Concert benefit celebration of the 2002 Tony Award-winning Broadway production of Thoroughly Modern Millie. To celebrate, enjoy this interview  with Alice, Henry's Mom, and original Millie cast member Dan LoBuono.  We talked about inspiring the next generation, his Broadway career, his Millie experience and his advice to young actors.  

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Oh The Places He’ll Go…

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Oh The Places He’ll Go…

Last weekend I instituted a meal planning schedule for the weekends.  Henry has a habit of pouring out an entire bag of chips, a full box of crackers, and every sleeve of cookie onto a plate and grazing all day from Friday evening through Sunday evening.

The meal planner announcement went over as I imagined it would. He grumbled and fussed. He re-enacted Homer Simpson choking Bart with me as Bart. And then he did it -- he ate on a schedule and portioned out serving sizes.

I love that Henry uses every resource available to communicate his wants and needs.  Even though I don’t enjoy being choked and told, “Why you little…” by him as Homer Simpson, I appreciate the application. 

After a day and a half of scheduled meals and serving size conversations, I thought we were doing great. Then it was time to head to Dad’s house.  I was in my mother’s kitchen and Henry was doing one last lap around the back yard in the winter dusk when I got a call.  It was Henry’s dad.  Usually he just texts me if his schedule changed.  Naturally, I was concerned that he was calling — it must be significant.

It was.

He was getting text messages from Henry. I turned and looked out the glass sliding doors and there was Henry, his face lit up by his phone’s screen with the impish grin he gets when he’s working a plan. Here’s the content of the text:

At 8:00 Henry's having a serving size! 

He's gonna have a brand new grand prize!

Henry will get some chips and more!

He will have pop tarts…for four!

He's gonna have a great day!

I'll see you later and we're on our way!

Take a moment and read that again just to enjoy before we move into the literary criticism portion of this blog.

Now, let’s go deeper.  Three things are stunning about it.  First, it’s a fully-formed Dr. Seuss style poem.  Spectacular. Second, is the message of the piece.  I believe the author is saying: Mom’s serving size/eating plan won’t work for me at Dad’s house. Third, is the action. He’s literally texting behind my back.    

When you understand that some of the qualities of autism that we were told to expect were —little to no imagination, little ability to communicate in a meaningful way, and children with autism aren’t manipulative, they have meltdowns instead — you can understand how I feel about this piece.  And about this spectacular child, magnificent creative being, wonderfully manipulative schemer, and resourceful communicator — oh, the places he’ll go. 

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Autism Life Hack #7 How Deepak Chopra Saw My Essence. Hint: He looked.

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Autism Life Hack #7 How Deepak Chopra Saw My Essence. Hint: He looked.

Dr. Deepak Chopra  came to Dr. Phillips Center last year and did a talk on his latest book, You Are The Universe.  My role was to help with the VIP book signing and take photos for social media. I was in our event room with the VIP guests who were having a glass of wine and a nosh, waiting on Deepak…which sounds like the title to a play.

I had strict orders about when Dr. Chopra was to be back to his dressing room.  So, I organized the book signing to give everyone a nice moment with him within our schedule. At 5 minutes to 7 p.m. Deepak Chopra arrived with several of the arts center staff, all directors and senior directors, mostly in charge of production. 

When Deepak entered the room, I turned and looked him in the eye.  I went towards him with my hand extended.  He looked me in the eye. As we shook hands I said, “Dr. Chopra, I’m Alice and our group is excited to meet you.  I understand you need to be backstage at 7:30 so I’m going to make sure you leave this room at 7:25.”

“Wonderful, Alice, I’m Deepak,” said Dr. Chopra. “Now, I have a video for the opening of the show that I really want to use.  I know it’s last minute but can I have someone email it to you and we can use it?”

Now, I’m not in production. I was there to take one photo on my phone for Instagram.  He just rode up the elevator with any number of people there to help him.  I have no idea why he didn’t mention this idea to them.  But here’s what I do know.  I know me.  I’m a performer and I am a leader. I am a presence. I know my energy is large and that often people respond to me as if I’m in charge.  A couple in the Paris airport once had me direct them to their terminal, in French. I speak very little French, and I’d never been in that airport before but I got them where they needed to go. So, I get that about me.

While I believe that Deepak Chopra, this master of awareness, met my presence, knew me and knew I was the one to get this task done for him, what I also know is that I looked him in the eye and told him my name.  He looked me in the eye and did the same.

Autism Life Hack #7 is Good Eye Contact! Henry worked on this in early intervention days when he was in Pre-K.  I would hold his face towards mine.  I would point to my eyes and say, “Give me good eye contact.”  In later years, he learned more subtle forms, more mature forms.  In High School, he’s very obviously been working on shaking hands and greeting people.  If you’re in the line at Walmart with us, watch out.  You’re about to have a beaming face invade your personal space with an outstretched hand and hear, “Hi, I’m Henry, what’s your name?”  (We’ll work on personal space soon, I promise.)

Yes, I would like to think that Deepak Chopra saw my essence and identified me as the one who would make something happen. Because it pleases my soul, I’m going to believe that my spirt rose up to meet his spirit, they communed, and I was known and heard and he was known and heard.

Very likely though, he responded to me because we shared good eye contact and greeted each other with our names.  He got his video for the opening of his talk because I said yes and then passed it off to one of the people he rode up in the elevator with.  Then Deepak and I went through our meet & greet plans for maximum efficiency and personal connection with his guests. He was backstage by 7:30.

Whether it’s a spiritual communion or a simple acknowledged request, it usually starts with good eye contact.  You can start practicing Autism Life Hack #7 today! I promise it will change your life.

 

 

 

 

 

 

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How David Letterman’s Retirement Personally Impacted My Life.

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How David Letterman’s Retirement Personally Impacted My Life.

David Letterman announced his retirement in April of 2014.  Within a year, Jon Stewart decided to leave The Daily Show.  Most families wouldn’t be altered by these events.  But we are not most families.  We are the incubator for the #AutismTalkShowHost and this not only had an impact on our daily lives—sadness, loss of routine, another of his mentors relegated to YouTube—but it affected our future planning.

In the last two years his teachers have been trying to prepare Henry for High School graduation. Bless them. They do this for every student that attends Access Charter School. The program is vocational focused, so from the time students enter the Middle School program, their academics are about job skills training.  And many students are excited about the work they do and the companies that partner with the school.   

Henry tolerates the work skills.  On every ‘what do you want to do after you graduate’ questionnaire he writes, “Be a talk show host.”  And because he actually does have the skills, and  an outlet, we’ve factored some of those skills into his IEP. So, we work on things like asking questions and listening skills, but there isn’t a job training program locally for Autism Talk Show Host. There no internship for that.

And yes, he and I have developed a keynote that we do, where he performs a Top Ten List.  But that’s not a daily job. He’s going to have to do something.  So, the teachers and the family started the campaign.  June 2018, you’re graduating from High School.  Where do you want to work?  What do you like to do? Do you like helping at Habitat for Humanity’s store or do you like prep work at Smokey Bones Restaurant better? 

“No. Nothing. No.”

After David Letterman and Jon Stewart mentioned retiring, he changed his answer. 

“June 2018.  I’m going to retire.”

WHAT?! 

“Yep.  No more school.  No more OCA show. Retire. I’ll name my replacement.”

Those bastards. How dare they retire from being talk show hosts?  How dare they implant the idea that when your run is done, you just step down. Jerks.

I admit it, I was angry.  I’m not really sure why my response was to feel betrayed by two people I don't even know, but I did.  I’d worked so hard, pushed him so hard, found the right school, did OT and PT and Speech after school.  Sensory Integration Therapy.  OCA after school program. Gluten Free baking for the GFCF diet. Special Olympics Bowling, Basketball and Soccer. Energy Work. Hiding krill oil and antioxidants in his yogurt.  And this is how he repays me?  By retiring before me?!

I let him know that David Letterman was in his sixties and that Jon Stewart was in his 50s and that was the age that people retired, after having WORKED for many years.  And that he would not be retiring in June of 2018. Then I plucked a date out of the air, “You may retire in 2075.”

“2075?”

What followed was several weeks of heavy sighs and a new response to ‘How was your day?”  “Siggggghhhhhh. 2075.”

And now we’ve arrived at his last year of school. He’s graduating in June.  And I’m filling out paperwork and working with government agencies and steeling myself for a new way of life. While Henry seems blissfully unaware that life is going to change.

Until this weekend. We were at Granddad and Mimi’s house about to go swimming.  Yes, global warmers, it’s November and the water in Orlando is just fine. When he jumps in he counts to three ala The Count (https://www.sesamestreet.org).  And he does a little show related to the counting.  This weekend’s show the script went like this:

#1 For counting to swim with Granddad and Alice.  And Mimi.

#2 For my job for my disability for my work and my job.

(my dad and I held our breath.  Did he just say he has a disability and he’s getting a job?)

#3 For my job. It’s for ideas for my job for working for my disability and for this year!

Splash.

Did David Letterman’s recent appearance on Jimmy Kimmel’s show help him lock in that life goes on after graduation?  Did he read Vanity Fair and find out that both Letterman and Stewart have new shows? Did the message from school finally sink in?

I have no idea what flipped the switch.  But here we are only in the first semester of his last year and there was joy and excitement about a job for his disability for his ideas. 

Sigh.2075. 

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Autism Life Hack Number 9: If Today is Bad—Christmas Comes Every Year!

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Autism Life Hack Number 9: If Today is Bad—Christmas Comes Every Year!

Last week my friend Olivia started a blog. She’s going through a transition right now—leaving her day job to start an artistic adventure.  And what she found was that her desire to be a free spirit was being squelched by her need for…structure.  

Of course, this seems backwards, but it makes perfect sense to me as an artist and an autism aficionado.

So, here’s what I know about being an artist. A film maker needs a producer. A writer needs an editor. Michelangelo needed the Pope. And do we rail against those tyrants and their deadlines? And their ‘this won’t work because’? And their ‘we don’t have the budget for that idea’?  Yes, we do.  And then we produce art. Sometimes it’s great art, sometimes it’s just art that meets a deadline. Limits frame us and we can find freedom within the framework. That producer’s voice challenges us in our idea phase and we push back, most often by doing the work. Otherwise we tend to get lost in the idea phase, coming up with endless ideas that never quite get done.

We don’t like to do the work. Making stuff is hard! I recently set a goal for myself to blog once a week. I won’t tell you when I set that goal, but suffice it to say that it wasn’t when I actually started producing work once a week.  It was well before that. 

So, the tyranny of the deadline, the expectation of the producer, the demands of the donor keep us on track. 

Now, here’s what I know about autism. Once again, I’m not an autism expert, I’m a Henry expert.  And as a huge fan of Henry’s I’m also a fan of his particular autism.  Autism needs structure.  It craves it.  When it doesn’t get it, it has a meltdown.  I’ve noticed this in more than just Henry’s autism.  It happens a lot with the people in our community and mostly the people in our car line at our autism program school. 

Henry is actually pretty loose with his scheduling needs.  He can go with the flow more easily than others I’ve driven to the field trip.  I’m sure that’s in large part because I dragged him from this event to that when he was a toddler.  He had to get used to my freelancer schedule. 

One of the ways Henry handles his stress if he’s in transition is that he goes back to his calendar.  I know I’ve talked about this before as it related to Hurricane Irma. But here’s the beauty move he uses that I love: If things really aren’t making sense and he’s going to have to go with the flow longer than he’s comfortable, he launches THE CALENDAR.  He goes through every major event, listing as much of the year as he needs until he settles. 

Here’s an example:

Me: Mom needs to pick you up Tuesday and take you to school on Wednesday instead of Dad.  And then Granddad’s out of town, so Thursday will be different.

Henry: and then October Halloween. November Thanksgiving. December Christmas.  Then my birthday and spring break.  Then Summer!  Go to Grandma’s house. Go to Idaho. Fourth of July!  Theater week summer camp.  Then October Halloween.

Me: yep.  That’s what’s going to happen, I’ll pick you up on Tuesday and then Halloween will happen.  Thanksgiving will be the 4th Thursday in November, then Christmas. And we’re good?

Henry: Yep!  We’re good.

If you are going through a transition in your life, if you don’t have the structure you need, remind yourself of the pillars.  There are pillars to life that likely won’t change.  Christmas comes every year. The fourth of July is always on the fourth of July. Ramadan will be here for a month, even though the dates change. These are things you can count on!

Autism has all sorts of great life hacks for us. Henry and I do a David Letterman style top ten list of the Top Ten Autism Life Hacks That Will Change Your Life and how they can help us. Number 9, THE CALENDAR, is a good one and I hope you’ll use it!

 

 

 

 

 

 

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Two Real Moms Acting Their Parts

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Two Real Moms Acting Their Parts

A few weeks ago, a friend sent me a link to this video about Mickey Rowe, the young man playing  the lead in a production of The Curious Incident of the Dog in the Night Time. A year ago, the Broadway tour of Curious was in Orlando and I had the opportunity to interview the actor that played the Mother, Felicity Jones Latta. I was interviewing her for a podcast for the arts center, so we were focused on the show: We discussed her journey as a professional artist and as an actor (two very different journeys) and her process for creating this character, the mother of a unique child.

We had a great discussion and then when the formal podcast was over, we had another discussion.  I admitted to her that, like the young man in the play, my child is unique.  My child doesn’t understand how life works.  My child thinks differently.  Oh, and he has curly hair and flicks his fingers, much like the actor Adam Langdon, who played Christopher in the tour. Only Adam was acting at flicking his fingers and acting about not needing eye contact.

Then she interviewed me. She wanted to know what it was like for me to watch the play and I told her the truth. I felt exposed.  I felt like everyone in the theater was looking at me to see how I responded. I know that all of my friends who saw the show during the run in Orlando would text or call or post “I was thinking about you the whole time!”  And that I didn’t want to be thought of. I didn’t want everyone knowing how it felt to be the mother of this child.

Which is kind of weird because I’m always writing and speaking and looking for opportunities to for Henry and I share what our life is like.  But then those audiences see our life and experiences in the way that we share them, which is usually hopeful, meaningful, inspirational and often funny.  Not in the visceral, sometimes dangerous, often frantic, usually frustrating way portrayed in this production.  Which is also an experience in how we live our lives.

But there it was all on stage for everyone to experience.

She asked me what the difference was between me and the mother she played. This was easy.  Her mother was in true crisis a part of which was that she didn’t know how she felt about being a mother, his mother.  She was also living in a way in which the disease, the disorder, was in charge of her life.  The autism was running the show. If it didn’t want to hug, then there’s no hugging. If it didn’t want to manage a meltdown, then there was a meltdown.  If it couldn’t go into a public place, then it didn’t go.

In my world, we are in charge.  I tell autism what we need to do.  If it doesn’t want to hug, ok we’ll train it to receive and give hugs.  Because I, Alice, Henry’s mom, needs hugs. If autism doesn’t want public places then we train it to manage being out in public.  We break it down.  We break its grip on Henry.

This is challenging work because it requires finding the dividing line between Henry and autism.  What does Henry want to do?  What is autism not allowing him to do? What gift is autism giving him that allows him to do things he might otherwise not be able to do? What does Henry actually not want to do?

The best example is the birds.  He hates birds.  We worked and worked on being in public places (parking lots, the zoo, Sea World) where there might be birds. And we survived those attempts.  But he hates them.  They freak him out.  So, we don’t go places where there are flocks of birds. And we move quickly if they show up where we are.

That dividing line was much clearer when he was small.  No one wants to have a meltdown or injure himself or someone he loves.  So, we did sensory exercises.  We practiced, timed our outings, over prepared, wrote social stories and we found out how far we could get.

Dr. Phil's teaching on dealing with addiction in a person you love is “You’re talking to the disease now.” I apply this liberally. Autism doesn’t get to tell me who I am or what my life looks like, and it doesn’t get to dictate who Henry is. I tell it what it’s life looks like. Now, my work as the mother of an adult is to give him the reigns to help him to make the distinction between autism and what he actually wants to do. He gets to break the grip.

That’s the biggest difference between Henry and I and Christopher and his Mom. In the play, they are subject to it. In my show, it is subject to us.

We didn’t record this part of our conversation because in our podcast we were representing the show, the character and the theater.  This conversation was purely personal—me sharing how her performance impacted me and hopefully giving her the support to continue performing her role. And her discovering how the mother of a unique, curly-haired young adult felt about the story she was embodying. It was a powerful hour of truth and art.  My favorite thing.  

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Soul-Full Creativity

Last weekend I spoke at the Caregiver Forum hosted by Share the Care, Inc. an organization that provides respite for caregivers and adult day care. Their Caregiver Forum weekend was scheduled for the week Irma hit and four of us local artists planned to lead sessions on improvisation and communication closing with a team keynote that focused on the arts and getting engaged.  But Irma shifted our plans by a month and I was the only one left available.

I’m often leading while being led. I think that’s mostly the way it is when you lead; the message comes back around to you.  But this weekend was different. These were my people in a way I hadn’t experienced before. When I lead creativity sessions it’s often for other creatives and we connect on the foundation of our work and our experience with doing what I call corporate creativity.  Or I lead trainings for nonprofits and HR departments on team building, creativity, inclusion, diversity, storytelling or branding. I connect with those groups based on a shared passion for team building or brand expression.  But these folks didn’t know about my work style or my writing process.  They knew about my day.  The minute by minute. The repeating instructions 3 times in a row. The can-you-please-not-eat-all-the-food-for-the-week-in-a-day Thursday afternoons. The seriously-enough-with-the-stacking-of-the-empty-water-bottle-Saturdays.

I led an improvisation breakout and gave a keynote Creative Caregiving. I shared exercises and ideas on how to find your own personal creativity and how to connect with it. My message to my peeps and therefore back to myself was: your creativity is your respite care.

Creativity is yours. It’s a spa date. It’s a connection to the divine. It feeds you. It restores you. It’s all yours.  So, find a way to retreat into your creativity every day. 10 minutes! Remind yourself of your essence. Explore your ideas. And come out renewed. Find that respite for your soul and you’ll be as joyful this little band of exhausted, yet energized, caregivers.

 

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Let There Be LIGHT!

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Let There Be LIGHT!

I’m always trying to get into Henry’s mind, I want to know what’s going on behind the flapping hands, the silly smiles and the intense looks.  That’s where his catch phrase came from—when he would giggle at something only known to him I’d ask, “What are you thinking about?”  His immediate response would be, “I’m thinkin’ about me!”

Sometimes the best way to find out what is going on emotionally is to ask him to write out his calendar, which tells me what he wants to be doing, or to ask him to pray, which tells me what he’s feeling. The stress of Hurricane Irma, the schedule disruption with no school I know was weighing on him.  Most challenging was his time with his dad.  The power is out at his dad’s house so he can’t go there. He has run over his schedule obsessively, almost hourly, trying to grab some control over the situation.  But there is no way to control this situation.  My answer to every re-listing of events is “Maybe we’ll do that, if the power is on.”

Added to this is that my husband, Mohamed, was not here during the hurricane and was flying in from Egypt on Tuesday night September 12th.  Would the airport be open?  Would Atlanta be under the hurricane?  Lots of stress for me. Oh, and my parents, Henry’s Mimi and Granddad, were still in Idaho.  We went to their Florida home to check out the damage and experience no power.  They come in this Friday.  How will two 83 year olds manage no a/c? Lots of unknowns. 

I know he’s stressed but what exactly is bothering him?  What are the pressure points being felt? We made it through Tuesday’s challenges and then on our way to pick up Mohamed at the airport, the school called.  Cancelled through Thursday.  And the calendar list started up again.  Wednesday no school Thursday no school Friday I want to stay home Wednesday at Dad’s HE HAS POWER! Thursday night at Dad’s HE HAS POWER!  And my nods or ‘no’ or ‘maybe’ were just making him ramp up more. 

We got home and let Mohamed lay down after his 30-hour trip.  Henry was still perseverating. I invited him to call his dad.  No. I asked him to update the calendar.  No.  “Ok, the only thing we can do is pray.  I want you to say, Lord Jesus, please give Daddy power. Amen.”

He climbed up on the bed next to Mohamed and took his hand.  I sat with them and he took my hand.  

“Lord. It’s for thanks and good for friends and for Hurricane Irma with just Mom and me.  And for Mohamed’s back.  Lord and for your friends we praise you.  For my Dad for Tim for the power on. Lord Jesus, turn the lights on for time for me and my dad. In Jesus Name!”

Well, amen and amen. He felt it all. And he is grateful and full of praise. And he knows we’ve been through something hard. And relationships are important to him. So thank You for friends and for turning the lights on always. 

 

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Preparing for the Storm

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Preparing for the Storm

With a hurricane, you can see it coming, so it feels like you have some control. But really it's a bizarre state of flux, fear, and fine. This is not easy for anyone, but for someone with autism who relies on consistency, especially in a schedule, it’s really tough.

What Henry and I do to manage the unknown is write out our plan. Here’s our plan for two of our Hurricane days:

Saturday, 9/9: Stay in the apartment. Call Granddad and say Happy Birthday. Charge electronics all day. Have some snacks. Maybe at night we’ll lose power and air conditioning.  Maybe we’ll take the sofa cushions and hang out together in the big bathroom.

Monday, 9/11: Wait for the police to tell us all clear. Call dad and see who has power! Make a plan to go see dad when it’s all clear. That might be Tuesday.  

Henry sat with me to talk it out and then we wrote it down. He took the papers and he’ll likely carry them with him for the whole weekend. Even if we end up in the bathroom with flashlights, pillows, bottled water, and a thermos of coffee with Baileys. We’ll both have some stress moments throughout the weekend so we’ll go back to the papers and look at the plan. We’ll read it out loud. And it will soothe us to see that Tuesday will be different than Sunday.

A friend at work mentioned that her young nephew gets anxiety. We talked about having him create his own Hurricane Preparedness Kit. What does he need to feel safe and in control?  Headphones to keep out the noise? A special blanket or pillow?  A favorite book or toy?  Have him make up that kit and keep it with him throughout the weekend.  Allow him to be in charge of his kit. He can lower his anxiety if he is in charge of what he can actually control.  

And isn’t that really it? This is how to handle the storms of life. We live as if we know what is coming because this day is Wednesday and it goes like this every Wednesday.  Then we see something starting to churn to the South, the wind picks up, we bring in the patio furniture, and bam! We’re in the eye.

A good spiritual storm plan is pretty close to a Florida hurricane plan:

1. Stock up on essentials that keep you hydrated and nourished.

2. Hunker down and have things to do, like a good book to read, so you aren’t looking at the predictions every five minutes.

3. If you need to evacuate, do so patiently and kindly.

4. Write out your vision and hold it close.

4. Re-read the plan and remind yourself that this will pass.

It’s good to have a plan in place long before we’re hit, so we can control what we can control.  So that we remember that by Tuesday, it will be different. 

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The Gratitude Grocery List

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The Gratitude Grocery List

Every Friday is pizza night for Henry and me. We have a party.  I put this in place after I separated from his father. I wanted Henry to have a routine that he could count on in a difficult and uncertain time.  And I wanted to do something fun he could look forward to every week. He likes being with his dad more than he likes being with his mom.  Sometimes it’s hard for me but I get it.  Dad is more fun.  Whether you are together as a family unit or in separate houses, dad is usually more fun than mom.  For instance, when Henry comes out of his room in the morning I greet him with joy and excitement. Then I ask if he’s going to brush his teeth, change his clothes, and put on deodorant and body spray. Moms have an agenda. So, a pizza party was good to remind him that we can have fun.

 

In order to have pizza night, we have to go get the pizza.  So, every Friday we go to the grocery store.  Henry started giving me a list of his desired foods on the drive from OCA to the store. It started out pretty basic, because the list of foods he actually eats is very short: pepperoni pizza, waffles, peanut butter, chips, chicken nuggets, applesauce, bananas, blueberry yogurt, graham crackers, fruit snacks and goldfish.  Over the last several years, he’s added to it. There’s cupcakes and cakes, pink sprinkle cookies, gummy bears, Swedish fish, ice cream sandwiches.  Almost every week he adds one new thing. 

 

It’s important for him to get the list out.  It’s important for him to be heard.  It is important for me not to get irritated with the amount of time it takes to get the list out of his system.  On days when he’s ramped up sometimes he’ll give me the list three or four times.  I treat autistic behaviors with respect but as I’ve said before, we’re in charge of the disorder, the disorder is not in charge of us. Autistic repetitive behavior can sometimes build on itself and not stop.  One technique I use is to say, “Ok, last time.” And let him do it (whatever the behavior is) one last time.  Another thing that works is for him to write the list down and put it on the fridge, just like my grocery list. One day he couldn’t stop, so I said, “I’m going to the store.  Text me your list.” By the time I got to the car, there was a full list on my phone.

 

What pleases me is his ability to say what he wants.  To be part of the process.  It pleases me more that there’s not a meltdown when the enormous list of junk food is not purchased and brought home every single week.  The basics, absolutely, and then I usually pick one treat from the list, a different one each week.

 

I want to be like this.  Do you know what you want?  Do you know what you need?  The bigger question is:  Do you ask for what you want and need? Henry boldly makes a list of what he wants and needs.  More boldly he asks for it.  Repetitively.  Then he is delighted with what he receives.  Every week.  I’d say that’s a pretty good way to live.

 

Here’s a link to the dash cam video of one week’s version of The List. 

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I Did a Great Job Today!

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I Did a Great Job Today!

Theater Week is the best week of our year. Henry gets to use his highest gifts, all day, every day and then share those gifts with others.  And does he ever share.

Henry’s innate feel for comedy is, well, stunning.  An improviser colleague of mine saw Theater Week for the first time this year and she was, well, stunned.  He reads the beats of the play, the pace of the actors, the flow of the performance and the energy of the audience. He delivers his lines to match all of that.

Oh, and he ad libs. 

Sometimes his improvisation is to pad his part.  Sometimes, he feels something is needed to connect with the audience.  And often he encourages the other actors.

This Theater Week he was on fire.  As the Narrator, he sat on the corner of the stage with his script on a music stand and a microphone.  Somewhat removed from the action and yet, totally in it, at the end of each scene, a millisecond before the applause, he’d say, “Great job, you guys!”  Of course, the audience would applaud a little more vigorously. 

During the three songs, he sang along but in the instrumental breaks he instructed the singers, and the audience: “Ok, now, one more time!” and “Everybody now!” or “With Conviction!”

After the performance, he ran around the hall, shaking hands with everyone ­-- actors, audience members, ushers, technicians, and teachers.  Because Theater Week happened at my place of work, Dr. Phillips Center for the Performing Arts, after the house cleared, we went back to my desk. As soon as he hit the open office he was greeted by applause from all the cubes.  He yelled loudly, “I did for a great job today!” 

Then he added, “You guys did a great job!” I asked, “As the audience?”  “Yeah!  They were the audience, and I’m the Narrator.  I did a great job as the Narrator!” Then back to his fans, “Thank You, Thank you!”

His exuberance for his work is inspiring. I want to enjoy my own work and celebrate it. I want to cheer others on and tell them they did a great job, just because they showed up. I want to pat my back and proclaim, “I did a great job today!”

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