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autism talk show host

Hurricane Redux: Preparing for the Storm

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Hurricane Redux: Preparing for the Storm

It seemed a good time to repost our Hurricane Prep tips for anyone with special needs, any caregivers, anyone with anxiety, anyone who is being driven slightly mad by the constant hysteria of every newscast, anyone watching “So You Think You Can Dance” or “MasterChef” and trying to ignore the hurricane tracker in the lower left of your screen…so all of us really.

When the Friday track of Hurricane Dorian showed a direct hit to my house as a Cat 4, I did a lot of deep breathing and repeating Byron Katie’s mantra “I’m a lover of what is.” Then I would notice “what is really'“ — it is sunny and beautiful; it is time for lunch; it is laundry-folding time. There was never a moment on Friday when a Cat 4 was ripping our roof off the house. It was only when I watched the news and lived in the land of what might be that I felt anxiety.

These behaviors along with our Write Out Plan should help not only Henry, who is already eyeing his calendar and saying Hurricane over and over, but will help me. It’s impossible not to be filled with anxiety when you spend five days playing out all the ‘what could happen if’ scenarios.

Hurricane Irma: Write Out Plan

September 8, 2017

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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Sharing Messy Stories or When Autism got Tweetable 

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Sharing Messy Stories or When Autism got Tweetable 

This summer there were at least three posts about children with autism that went viral.  I wrote about one in my monthly post on The Gloria Sirens, and how it reminded me of The One Question You Should Ask Yourself in the Middle of a Breakdown.

The posts were the kind of messy victory stories that I love — that adorable little boy in his cowboy suit breaking through to his first words.  The Universal Studios meltdown and deep breathing. I wondered how I would have handled our messiest stories if there was Twitter and Instagram back in the dark ages of the beginning of this millennia. 

When Henry was about five, we were in our Starbucks with a group of senior citizens. Henry was flapping a green straw — it was always a green straw which is why we were always in Starbucks. A tall, lanky gentleman with glasses got up from the group’s conversation to point at Henry and ask me, “Is that autism?  Is that what he has?”  

“Yes, how did you know?” I said. 

“I saw it on Diane Sawyer.” 

In that moment, I was no longer alone. I know it’s hard to believe but 20 years ago, it was unusual to see someone with autism. Collectively, we didn’t go out a lot. If you did see a parent braving the grocery store you probably wouldn’t have known what the deal was with that kid.

Other toddlers and pre-k kids had mousse in their hair and little khaki shorts with plaid shirts tucked in. Henry wore pull-on shorts and a t-shirt with marks on the neckline from where he chewed it. He had a scab on top of his nose from obsessively flicking his fingernail across the skin. I had the hollowed out eyes of someone always searching — for the next treatment, the next cure, his other shoe.  

We weren’t cute.  We weren’t victorious.  It wasn’t adorable.  It was filled with poop.  No, really. Some children with autism smear their feces. Henry was one of the some who did — on the walls of his room, on the keyboard of the desktop computer, into the CD rom drive. If you’re too young to picture a CD rom drive, imagine cleaning poop out of the port to your iPhone. 

Social media is filled with our sizzle reels while our blooper reels remain hidden from likes. So much of my early childhood parenting was more blooper reel than sizzle. I’m guessing that’s still the case for most families. But I’m hopeful that all of our stories will be more and more tweetable. That we’ll share the messiness in our lives along with the wins.  It makes those victories, and those meltdowns, richer for us all.

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Not That I'm Complaining...

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Not That I'm Complaining...

I came home to silence, the kind I needed — the whirr of the refrigerator, the click of the ceiling fan. It’s been two months without a day alone.

Not that I’m complaining. 

My husband — the beloved husband who crossed an ocean for me, for our life together, who is adored by his mother-in-law, adopted by his sister and brother-in-law and tolerated by his twenty-three-year-old autistic ‘step’ son — is training into a new restaurant which means a nine to five schedule with weekends off.  Same as my schedule. A departure from his two weekdays off and evening shifts.  How wonderful it’s been to spend time together. 

Well, spending time together isn’t really right — he was studying and fretting and exhausted from the ungodly regular person experience of a 6:30 a.m. alarm.  Also he’s Egyptian (Middle Eastern, man, traditional, blah, blah, blah) so requests for dinner and pressed clothes and his coffee were more like orders this month.  

Not that I’m complaining.

He’d do the same for me if I was learning a new job with all the executives in the company watching my every move. I’d do the same for you.  

His training was going on during the time that my parents were preparing to go north for the summer. While they are a very capable eighty-fourish, they are, well, eighty-four.  Requests for help with the thing on the thing (cable box) or the thing that won’t (internet) were coming rapid fire until they left.  They made it to the cabin and the Russians delivered their car. I kid you not, a family of Russians have a car delivery business and drive a rig from Spokane to Orlando for them.  So, all is well.  Except for the phone call last Thursday, “Can you stop by the house and look on the shelf upstairs, over the computer for my Powerball numbers and in the closet on the shelf above the shoes for the Bose noise cancelling headphones?”  One assumes that if dad wins, mom will need the headphones to cancel out the partying with the Russians.  

Not that I’m complaining.

It’s just of note that also my daily lunch hour for the last three weeks was devoted to picking up Henry, who is in a job training program. They needed to change the schedule last minute and I didn’t have the emotional ability to call Access Lynx and update his disability services van. Somehow mustering the strength for a daily drive across town was more doable than being on hold for forty-five minutes. 

Not that I’m complaining.

No. The complaining came when I stepped into my gloriously silent home sure that the husband would not be back until 11 p.m., knowing that Henry was with his dad until the next day and the parents are being cared for by the Russians.

I dropped my bags on the kitchen bar, stepped out of my clothes and headed to the sliding glass door.  I stepped into my bathing suit, opened the door and heard, no, it wasn’t thunder. It must be the neighbors rolling out their garbage. My feet hit the heated concrete porch and I heard it again. The roll. The boom. Then the pool which was reflecting the sun turned to gray in front of me.  

I started to feel the complaint rise up in me.  How could you, God. Universe.  Thundercloud.   How could you?  I stood looking at my beautiful pool, thinking about my how I hadn’t complained for two months. I wanted to scream but instead said to no one, since I was actually alone, “Well. That hurts my feelings.” 

With that admission I somehow moved from complaint to the understanding that I was tired, my energy poured out on people I love and on their well being.  And now I had a choice.  I could sit in the rain speaking out loud my What Have You Done For Me Lately complaints or I could choose me. 

I sat down at the piano, the one my parents bought when I was six or seven and showed an interest.  The interest waned at fourteen but not because I was fourteen, rather because I was terrible. Really. Very bad. It’s possible I haven’t played the piano in 20 years.   

I pulled out the Easy Classics and played. Mozart tepidly, Bach badly and found a Couperin that wasn’t horrendous. Then I made a BLT (turkey bacon, of course, Egyptian in-laws) and sat under the cover on my porch while it rained, amazed by what life is like when I can’t complain.  

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Text Your Independence

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Text Your Independence

I started to get worried.  Henry is independent/not independent — he can be left alone, a true blessing, but he can’t make himself a sandwich or use the microwave without supervision. I feel confident/not confident about him being home alone.  I’m so proud of him that he can and I’m terrified that maybe he can’t.  The only way to find out is to leave him home alone, with a very stringent set of rules. 

One of the rules is that you MUST text me back.  You must respond.  So when I sent a text about what lunch was and where to find it, I expected a response.  I even saw the little text bubbles that meant he was typing.  I waited a few minutes and then the terror started to creep in.  I sent a second message, “Are you doing OK?”.  


That’s when the first of three messages on what I call The List came in.  Paragraph-long messages during which Henry lists what else I can pick up at the grocery store.  He even answers my desperate ‘are you ok’ message in the midst of The List. 

I love everything about how Henry communicates.  You can feel the joy of being independent.  Of being able to state what he wants in every food item, some of which he’s never eaten in his life — pork chops?  Please!  

Enjoy the freedom of asking for what you want and doing so in a delightful way, with a sign off in three languages. 

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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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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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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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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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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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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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On Fireworks and Boat Parades

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On Fireworks and Boat Parades

Henry is an agreeable person.  He likes to like things.  He wants to like things.  He prefers not to dislike things. What is amazing is that it doesn't turn into a co-dependent, people-pleasing mess, like it does for me.  He somehow likes things and glosses over his dislike of things unless he needs to maintain his boundaries and then he says a very strong and clear, "No. No Thanks."  I want to learn this from him.

He and his acting teacher, Dana Brazil, are doing videos back and forth from their vacations. Henry loves to be on camera and usually I write some bullet points or a suggested script. Another thing Henry likes to do is improvise off of a script. So in the first video  (on our youtube channel or like us on Facebook to see Dana's responses) you can see Henry has a script and he improvs and riffs about as he likes.  He's confident and relaxed and adding his own interpretations. You can even see the joke he doesn't care for and how he drops it. 

In his next video he responds to Dana's question about what he did on the 4th of July. He did not like the 4th of July. I asked him to do color commentary on video of the boat parade. NO. NO THANKS. I asked him to come watch the fireworks on the lake that night. NO. I'LL STAY INSIDE. That was in private. Watch what happens when I ask him to do a video report back to Dana on his July 4th experience. He struggles to tell her his true reaction.  He flaps, he stitches together random thoughts and ideas into talk show style sentences. He says he likes it while shaking his head no. Finally, he admits it. 

It's important to me that we show it all.  He is the hashtag Autism Talk Show Host and a great deal of that is his entertainment savant gifting -- his ease at being onstage, his love for the audience, his feel for the energy, his ability to work a script. And the other part of that is his autism -- there's flapping, there's randomness, there's a desire to connect and not all the tools to do so.  I want you to see it all.  I want you to know what autism is and how he manages it. 

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Live from...Rathdrum, Idaho

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Live from...Rathdrum, Idaho

Most Talk Shows take a fabulous trip to the Bahamas or Hawaii to do a week of shows.  Well, we are in exciting Rathdrum, Idaho off 41 in between the Lighting Bar and the old Spirit Lake dump.  Despite our GPS coordinates, or lack thereof, it is a fabulous locale, noted mostly for it's tranquility, beauty and neighbors who have known us since my father was a kid summering here.  

The famous Dana Brazil (see previous post) decided that Henry should do his show remote from our lake cabin and she would reply back from her vacation via Facebook Live.  Well, we don't really have enough bandwidth for a live broadcast but that's ok -- we recorded a video.  It took us 3 tries with our technological challenges, and then our cue card boy, Granddad, had a moment of floating into view but after a few edits we posted our first OCA Show from an exotic location.  Here's to many more!  Join us on Facebook or Twitter to keep up with new episodes.  Tomorrow is the boat flotilla on the lake in honor of July 4th and I'm sure the color commentary will be riveting! 

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Peers

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Peers

When Jimmy Fallon announced he was coming to Orlando to do The Tonight Show the first week in April, Henry assumed that Jimmy would also come on the OCA show, starring Henry Bass. And he assumed that he would go to Jimmy’s taping. 

He actually doesn’t assume. I’m not even sure how to use words that we would use to describe ourselves to describe Henry’s understanding of who he is. We go to therapy to discover who we are. We do the Work, we meditate, we read and go to workshops, we journal. We do all manner of things to figure out who we are.  

Henry doesn’t need to do that. He doesn’t discover. He is. He is a talk show host. And Jimmy Fallon is a talk show host. One hosts the OCA show and one hosts The Tonight Show. They are peers. 

Henry knows who he is. He has always known. Before he had a talk show to host, he hosted any event at which there was a stage. He hosted all day long at home. He still hosts all day long. He watched videos of his mentors David Letterman, Conan O’Brien, Jay Leno, Rosie, Ellen, Ben Stein, Alex Trebec, Pat Sajak, Al Roker and now he’s added Jimmy and Jimmy and Seth and Stephen. He re-enacted their openings and applied their styles to his own material.

For two years straight, every week, Henry told Coach Silvia Haas, the Executive Director of OCA, “I’m the host of the OCA Show in syndication, starring Henry!” Every week he would tell her the guests he was having on the show, including the musical guests. He wasn’t asking her to create a show. He was telling her that there was one. That the show did not yet exist was not a concern. Because it is. 

Repetitive behavior is a hallmark of autism, so Silvia and me and all of Henry’s teachers and relatives are used to the repetitive statements. It can be exhausting. It can be tiring. Or downright irritating. Sometimes we give in just because it’s so irritating. That’s not what happened in this case. Silvia texted me and said, “I’m going to make Henry’s dream come true and create the OCA show.” Because she realized what Henry knew all along. There was a show to be done, he was the host and it was something we all needed.

And he was not thrilled or grateful. He dream was already his reality. It just wasn’t ours yet. We’re the ones that don’t get it. We’re the ones that have to find things, find ourselves. We could learn a lot from Henry and how he views who he is and what he has to offer. We are not Henry’s peers. Not yet at least.

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