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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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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Happy Birthday to all of us!

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Happy Birthday to all of us!

Dana Brazil is changing the world -- our world.  When I first started working with Dana, the director of education at Dr. Phillips Center for the Performing Arts, the first thing I realized was that she was a culture changer.  Her drive is matched only by her innovative ideas.  In my first week of work, two months before we opened the arts center and four months before the school of the arts opened,  she said to me, "You're from here and you're a writer. I got a grant for a sensory friendly show with Spencer's Theatre of Illusion and a workshop with Kevin Spencer for kids with special needs.  I need someone to write a social story and I need a connection to the autism community. Do you know what a social story is, when can you have it written by and do you know anyone in the autism community?" 

"Dana, it's your lucky day," was all I could think to say. I'd been writing social stories for Henry since he was 2 before I knew what a social story was.  It was just the most effective way to get him to comply.  Tell him a story and put something in his hands to remind him of what we said we were going to do. 

As it is with Dana, we went way above and beyond. We produced a book and a video with a cast from Access Charter School.  The sensory friendly show, quiet room and workshop was staffed by OCA with an invited audience from OCA and Access.  

As it also is with Dana, I got sucked into her vortex of ideas and visions. "If you met Silvia Haas, the two of you would change the world," I said.

"I don't have time for that," said Dana. Which was true. She didn't have time to meet Silvia, the executive director of OCA, much less change the world with her. 

But these two women are those kind of people. They drive ideas. The push agendas. They move organizations forward. They do it with their passion, their big ideas and their ability to motivate others and work tirelessly themselves.  Silvia created OCA because she needed it for her son Matthew and the rest of us are along for the ride. Dana is creating an education programing that is world class to match a world-class performing arts center and in her first year the Broadway League (that's the Tony's, yes) gave her an award for her innovative outreach. Our job is to get out of her way or get onboard for the ride. 

So I set up a meeting. It got canceled. I set up another one. It got rescheduled. Finally, there was a need and an idea. What if Dr. Phillips Center, who is partnering with Florida Hospital on arts and wellness, helped produce OCA's Theater Week as part of our summer programming? The campers would rehearse an original play and build the sets & props from their location and come to the arts center to put on their performance.  

They met. They connected. They produced Theater Week. Now it's an annual thing. Dana needed more. They started a Theater Club. Dana had Second City lead an improv workshop the the Theater Club.  Then she created a residency with Pilobolous @Play for the club. Silvia became the Confirmation Sponsor for Dana's kids. Dana's son is nicknamed Ricky Haas. I think they talk on the phone daily. Silvia expanded the vision for the OCA village to include an auditorium and updated the plans. 

Dana's vision now includes a theater company of neuro-typic actors and actors with autism. They're not a club anymore. They are the Running Man Theater Company. She wants to tour. 

For her birthday she started a fundraiser on Facebook to donate to the Running Man Theater Company in lieu of gifts.  It's what I want for my birthday this year too. Happy Birthday to me. To Henry. To Dana. And to you. Throw a party. Get on board, because Dana's vision is coming your way and you need to get ready for your world to change. 

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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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I have a dream, a song to sing

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I have a dream, a song to sing

Sitting on my balcony on a Friday evening an unseasonably cold wind pushed my hair across my face. I could hear music from the neighborhood two blocks east. Every few months it seems like there’s a block party with mostly Latin music and if the wind is just right and the humidity is just so, the music carries to my neighborhood. I’m such a hermit that, I’ll admit, sometimes it irritates me. I just want my quiet and my birds and my little bit of sky. Most often I can reach back to the Navy family block parties from my childhood and then I can imagine the dancing, the kids running around, the women laughing, the men drinking beer, and I relax and let it be a secondary sound to my quiet.  

On this night, as I wrestled with a vision for my next chapter the wind was particularly strong and driving the music right onto my third floor balcony. The strange cold air made it sound like it was coming from our building. It was so loud it could have been coming from my own phone. 

I gathered my things and then I heard a familiar voice. It was the voice of Agnetha. The words I knew, but had forgotten that I knew them. But of course I knew them. 

I have a dream, 

a song to sing

To help me cope 

with anything

If you see the wonder 

of a fairy tale

You can take the future 

even if you fail

I belieeeeeeeeeve in angels

Something good 

in everything I see

I belieeeeeeeve in angels

When I know the time is right for me

I'll cross the stream, 

I have a dream

I thought surely the DJ would mix it into another song.  A dance song. But it went on. So, I stood and leaned over the railing. I knew what was coming next. I sang into the wind, joining my voice with the voices of my childhood friends.  

I imagined Benny & Bjorn writing those lyrics in their archipelago stuga. I imagined the call to our school.  Benny.  Bjorn. Agnetha. Annifrid! Can you imagine it? The children on your last album, the children that joined you onstage in Stockholm and Goteborg, are grown. Most of us 50, some not yet, some past it.  We are older now than you were when you recorded that song. And the joy and connection we had then — to each other, to that music, to that moment in time, to that city — gives me hope. It fuels me still today. The tears dripped into the lines around my eyes, thinking of the photo of me in the dressing room in the basement of a Stockholm stadium, my cheeks covered in acne. 

I have a dream, 

a song to sing. 

To help me cope, 

with anything.

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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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Adele

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Adele

It was one of those weekends, in which Henry was being 20.  Maybe not 20, maybe younger — it’s really difficult for me to gauge what age appropriate behavior is in him or, honestly, in myself.  I’ve been an entertainer so long that making faces, engaging children in strollers or making jokes to adults sharing a line with me seems completely appropriate. It might not be. 

People ask me all the time what Henry’s age is and by that they mean his understanding.  Well, it’s all over the map.  A quality of Autism or a quality of Henry?  The apple doesn’t fall far from the tree, so I’d say more the latter.  The pronounced delays in intellect are certainly autism but the wisdom beyond his years, the joyful approach to strangers, and the ability to command a crowd with his sheer will could be counted as ages 65, 3, and 42, respectively.  Those actions don’t seem very autistic-y to me. They seem like him working the autism system so he can behave as he chooses — he can take the stage at any event, even ones he’s not booked for, because the organizers usually find him charming in his autism. But I can tell you every actor is looking for a gig and we’re ready to rush the stage should there be a lull in your program.  He can also approach a total stranger in a store and shake their hands and adorably say ‘Congratulations.  I’m Henry’.  The stranger receives this from him because of his autism. But I'm not convinced that's autism. Sometimes the need to connect is completely overwhelming and I’d love to reach out and say to someone “I’m Alice!  What’s your name?” I just don't because I have social boundaries.  

We were having one of those days.  He was on fire. So excited and excitable.  We went into the Publix and he was talking and smiling at everyone.  In the check out line he was beaming, cheeks bright red, a giant grin on his face.  “Hi! I’m Henry!  What’s your name?”  He said to the couple behind us.  They introduced themselves and he shook hands.  First with his left then with his right.  He’s working on right handed shaking right now.  A man we greeted the same way in the McDonald’s in Northern Idaho instructed him, “Henry, I’m glad to meet you and now I’m going to show you how to shake.  It’s always right hand.  Let’s try it.”  This random act of mentoring did more than a year of instruction from his..ugh…mother.  

This day in Publix, he was like the mayor in a founder’s day parade — waving and smiling and everyone was eating it up. Until we got in the car.  Suddenly he turned.  He was absolutely disgusted to be with me.  He wanted to go to dad’s.  No more mom.  Sorry bud, it’s Thursday and we have 3 days together.  You’ll see your dad later.  He refused to look at me.  When we got home he wouldn’t speak to me.  He locked himself in his room and responded to any requests of mine with a growl through the door.  Well, if it’s going to be like that then the fun is over for me too.  It’s time to brush your teeth.  Wash your hair.  Clip your fingernails.  Do your homework.  Record a story with me.  Vacuum the kitchen.  I made random irritating requests like this every hour or so.  

Now, many are disturbed by this behavior from their child.  I am not.  I think it’s age appropriate.  What 20 year old wants to hang with his MOTHER?  Growl. Sigh. Stomp. I know if I was the mother of a neuro-typic child I would be bothered by it, as I see my sister-mothers struggling with the rudeness of their early adult children, but for me it’s a celebration.  Another developmental milestone hit!  He hates his mother!  YAY!!!!  

Of course it does get disheartening and I do feel lonely for my boy but I remind myself that this is what pushing out from the nest looks like.  And we’ll both be in a group home together when he’s 50 and I’m 80, so I get it — he can’t push very far from me, so push what you can.  

We made it to Saturday night and it was time to go back to dad the hero’s home.  So much more fun!  So much less…growl, sigh, stomp, WHATEVER.  (Yes, he says ‘whatever’.) I dropped Henry off early because he does like to be alone and if i can accommodate independence, I try to.  So when we can, he lets himself into his dad’s house with his own key, 30 minutes before his dad gets home from work and locks the door behind him. On this day, dad’s neighbor was out watering her garden.  And just like that, after 3 days of disgust Mr. Charming re-appeared.  

“Hi!  I’m Henry!  What’s your name?”  He ran over to the fence to shake her (right) hand. 

“Hi, I’m Adele.”  

He looked right at me, enraptured.  “She’s a singer!”  The beam was back after 3 days of darkness. 

“Yes, now everyone knows how to spell my name,” Adele smiled back at him. 

“I’m going in my dad’s house to be by myself.”  

I could tell Adele was wondering what this situation was, so I prompted him — 

“Henry,”  I said, “Tell Adele who I am.”  

“You’re Alice” 

“Yes, but who am I to you?” 

He looked at me confused.  He looked back at Adele.  He looked back at me.  

“My….best friend?”  

Adele put her hand to her heart.  I put my hands on his cheeks and he put his forehead to mine.  

Yes, baby. That’s me. I’m your best friend.  

 

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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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Super Soulin' with Jazz

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Super Soulin' with Jazz

Sundays are for restoring and being inspired.  I was looking for a little more inspiration, after church, Super Soul Sunday, yoga and porch time with a friend.  You'd think that was enough, but there was more inspiration to be had.  I went back to the conversation I had on the ArtsforEveryLife podcast  with Rodney Whitaker.  We were there to talk about jazz and instead he Aha!'d me and Super Soul Sunday'd me with lines like "People are looking for you.  They might not know it's you specifically but when they hear you, they see you, and they know it's you."  Take that in when the next risk for you to take appears.  

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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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Wear Henry's Catch Phrase!

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Wear Henry's Catch Phrase!

Henry had a great run on Monsters in the Morning.  For his last appearance for the summer, we had some t-shirts made.  The multi-talented Ian Suarez from Dr. Phillips Center  designed the shirts for us and Impress Ink did a quick turnaround for us so we could bring the gang at Real Radio 104.1 as a thank you gift. Carlos & Henry are rockin' those shirts! 

You can have your very own I'm Thinking About Me t-shirt!  We're doing a campaign for the next two weeks and a portion of the proceeds will go to the School of the Arts.  So get a shirt and enjoy telling everyone the catch phrase "I'm Thinking About Me!" 

Get your T-shirts here: TeeSpring Wear Henry's Catch Phrase 

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Wow. Congratulations.

Wow. Congratulations.

It was a big week for Henry, for me, well for us, really.  The first week of August usually means two things — Theater Week camp at OCA and my birthday. We added to that Henry’s third appearance on Real Radio’s 104.1 Monsters in the Morning. And as a bonus, we were interviewed on Dr. Phillips Center Podcast 'Arts For Every Life' and we created our Facebook Page, which I hope you’ll Like, and that you’ll like. Henry’s response to the week was to draw a picture of himself titled Wow. Congratulations.  

The adventure of being on the radio was unexpected and is producing unexpected results. We had the opportunity to be on Monsters in the Morning to talk about Dr. Phillips Center Florida Hospital School of the Arts and the many classes they have there that we participate in.  I’ll be honest — I just didn’t know how it would go. Henry live with an audience is his element.  But just audio?  Not sure.  No script? Hmmmm.  

His first segment was kind of amazing.  I remember a teacher once said about Henry, “He’s a fascinating case.” I have this response to him sometimes. Which may be a terrible thing for a mother to say, but he is endlessly fascinating. I’m always wanting to understand how his mind works --  sometimes it goes round and round a twist and then comes out as total brilliance…and other times it comes out and goes round another bend.  This was pretty much my experience with the radio show. He went into his talk show patter zone and off he went!  Lately, he talks about his friends a lot, weaving ‘friends’ into everything.  On the first radio show the patter went on and on about his friends and his friends and his audience.  Then somehow we got to his catch phrase — I’m Thinking About Me!  This was a huge hit.  But from the response of the radio audiences, it sounds like the twisting, talk-show host patter was also a hit.  Then we went to do a podcast for Dr. Phillips Center and the twisting began again, with the friends, but there was a landing spot that I only noticed on listening to it again.  He landed at least twice on ‘working on myself’.  

When he reincorporates an idea, that tells me that it’s important to him, that the idea has been moving around in his mind for a while.  And I think it’s fitting that as we launch this time in our lives, in his career, as we try new things, are available to different experiences and explore Henry’s talents that he could express ‘working on myself.’  Wow.  Congratulations. You are endlessly fascinating.