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autism

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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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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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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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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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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We'd Rather Be Awesome Than Perfect

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We'd Rather Be Awesome Than Perfect

For Mother's Day, here's note I wrote a new mom of a child with a disability.

Hi Mama. Sooooo, it’s awful. It's wonderful. It doesn't matter at all. It totally matters and changes everything. It's exhilarating and you can do this. It's exhausting and some days you just can't.

It's about her and carving the best path for her to thrive. It's about you — what you can do and letting what you can't do be ok. 

Don't be fooled by the urgency of disability — you are in charge, not it. She is more important than it. You'll know when there is a true emergency. Living with disability feels like an emergency all day long. It's not. No need to panic. 

I live on autism time — x4 as long and x4 the effort. Figure out what your disability time is and make sure your expectations for yourself and her are at that timetable so you don't go insane. 

Remember you are a family so what's good for you, your other child, and your husband are also what’s good for this child. This disability does not trump all needs at all times. 

Release the need to cure. You have your own disabilities that you know how to manage, I have mine, Henry has his. I had to give up making every minute about curing him. And curing me. It's an imperfect life. Perfect is per some standard that has nothing to do with us. 

And we'd rather be awesome than perfect.

Love you & your beautiful girls. Let me know how I can help you.

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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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World’s Okayest Mom, Special Olympics Edition

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World’s Okayest Mom, Special Olympics Edition

I’m not your typical Soccer Mom and Henry isn’t your typical Soccer player.  In fact, I’m not even your typical Special Olympics Soccer Mom, and Henry definitely isn’t your typical Special Olympian. 

Henry was 6 or 7 when we started Special Olympics. We only started because the coach bugged me.  I am not a sports person.  I’m a theater person.  I never played team sports and I had very little interest in getting my child involved. I didn’t want to go to practices, I didn’t want to get up early and drive 30 miles to Apopka on a Saturday morning, and I didn’t want to own a fold out chair.   But Coach kept at me, “Get Henry into Special Olympics.”  I asked her straight up, “What’s he going to do, host?” “I promise you, he loves it.”  

So off we went to our first competition, track & field.  We drove 30 miles.  I didn’t get a camp chair.  The kids ran the 50 yard dash with a helper at the finish line holding their favorite item — a bag of cheetos, a People magazine, a bag of M&Ms.  Henry’s helper held a DVD case.  On your mark, get set, go! And they were off, hyper-focused on their goodies, except Henry.  His body was running down his lane, but his face was turned to the cheering crowd.  He was on fire!  We were jumping up and down and screaming like crazy.  He ran all the way to the finish line where Mr. Eric was waving his favorite Disney DVD.  And he stopped, right before the line, then he turned and waved to the crowd.  Mr. Eric was screaming.  We were screaming.  CROSS THE LINE! CROSS THE LINE!   The more we yelled, the more he soaked it in — standing 2 inches from the finish line, basking in the glory.  

The next year, Coach Haas did get him the opportunity to host.  He led the athlete's oath on a microphone and has done so off and on for years. We gave up on Track & Field for Special Olympics Bowling, Basketball Skills and Soccer Skills.  That’s 3 times a year for those still counting. Some years we make it to State.  Other years we enjoy our sixth place ribbon.  I still have never bought a camp chair. And I admit, that on occasion I cheer for him to get 4th place so we don’t have to go on to the State level.  Honestly, going to both the County and Area competitions of an elevated game of HORSE is enough, right?  This attitude has earned me the title World’s Okayest Mom, Special Olympics Edition.  

The truth is he does love it.  He loves the attention.  If he’s not the chosen host, he hosts anyway, introducing his team, taking to the court or the field when there is a lull in activities, and always entertaining the parents and the volunteers. And I remain the World’s Okayest Mom, Special Olympics Edition — I forget to bring water.  I forget what weekend it’s on.  I never have a chair.  I forget sunscreen.  I forget a snack.  The times I remember to bring water and snacks we’re there for 20 minutes, up first, play, get our ribbon and go and I have to haul all that junk back to the car.  When I forget to bring the giant cooler of treats, a magazine for me, an iPad for him, that’s when we’re inevitably there for four hours.  

There are many Special Olympians that are true athletes and the passion Henry has for entertaining, they have for their sport. It’s always a pleasure to watch them in action.  Henry does ok with his sport and he’s gotten better every year.  But here’s the thing about Special Olympics that I didn’t expect.  He loves the competition.  All the kids do. It does something to them.  Their energy changes.  Their focus increases.  Their passion gets channelled.  They work together as a team. They work to best their own performance. I had no idea that team sports would do this for Henry but it has.  He’s grown as a person, his disability has been challenged and his character developed.  And sometimes he gets to host. Now to entertain myself and Henry while we wait his turn, we create live streaming videos where he turns soccer skills into a Million Dollar Tournament.  This keeps me from being the worst soccer mom on the field and enables me to maintain my title World’s Okayest Mom, Special Olympics Edition.  This year, not only did he do videos, host, and hand out a trip to Jamaica but he played really well.  He got a blue ribbon and first place in his division.  Yay!  State Competition here we come…

 

 

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Story Corps

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Story Corps

Henry and I decided we'd share our story on Story Corps.  I really wanted to talk about the first time he hosted which was for the State Special Olympics.  

https://storycorps.me/interviews/henry-bass-talk-show-host-with-autism/

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Wilderness

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Wilderness

Every year Henry and I go on vacation to my dad’s summer home in Idaho.  Dad’s grandparents bought the property in 1937.  There are LOTS of stories. 

In the original cabin, there was a wrap-around porch where we all slept.  When the original cabin finally sank into the ground mom and dad had a nice, solid, winterized house built with 2 bedrooms, futon, cots and a fabulous deck that’s best for coffee or wine and reading.  

It took me several years to bring Henry to Idaho. I was afraid.The lake is right at the bottom of the stairs. The woods are next to the house. The Methodist camp is right behind us. The Lightning Bar is up the street. Any number of dangers await a small child with a communication disorder. 

Finally, I manned up. He was almost 10. My dad and my brother were going to be there at the same time and so between the three of us, everything should be OK.  Right?  Right?! 

When we got to Idaho, Henry’s response was the same as ours always is — total awe.  From the cabin with the many beds (Henry loves beds, for a special treat take him to IKEA where he will get into every single bed on display) to the deck on stilts on the hill to the stairs that lead to the rock-filled beach to the lake that stretches across to a mountain.  With sunny days, cold nights and sweater mornings it was as much heaven for him as it is for all of us. 

Each night he slept in a different bed (see IKEA note above). By the fourth night he exhausted his options so I put him in the first night’s bed under the window.  We woke up the next morning to find him on the floor in the front hall wrapped like a burrito in the rag rug that Great Grannymom made with her own hands.  

This got him a stern talking to.  I wrote a note for him that he was not to do that again.  So he didn’t.  The next morning we couldn’t find him anywhere.  I ran around the house screaming his name the panic rising in my stomach while dad and my brother Charles did the same screaming and running.  Then we noticed the antique handmade rag rug was gone from the front hall.  Find the rug, find the boy. 

He was under the stilted deck that provides a nice sort of shelter, wrapped in the rag rug, now more like a sleeping bag. 

Ah, ok. “Do you want to sleep outside?” Anytime I ask him a question that he has clearly been trying to communicate for a while, I get a ‘Well, duh’ look.  I’m the one with the communication disorder.  He’s been quite clear, it’s me that isn’t getting it.  

That afternoon we all drove up to Cabela’s, a store we suburbanites do not frequent, and Henry picked out acamouflage sleeping bag that came with it’s own canteen and flashlight. 

I was still pretty much freaking out about him sleeping outside. There are moose, deer, skunk, raccoons and Methodist teenagers out in this wilderness.  Charles & I devised a plan with the sleeping bag on top of the air mattress on top of the deck, the stairs to under the deck blocked off.  While we were setting up we sat down on the air mattress and looked at the sky, filled with stars.  

“Well, we’re idiots,” said Charles. 

Pretty much.  We missed out on this for the last 40 years.  

That first night I didn’t sleep much, my dreams haunted by Far Side bears eating campers.  But it’s been 10 years and from that year on Henry always sleeps outside, now in a tent in the yard with an extension cord for his iPad.

Henry’s ability to communicate his wants makes me want to be as clear and bold as he is about how I want to live.  

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