Taking life step by step is more like a cha cha than a straight line.
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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.”
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.
Last week my friend Olivia started a blog. She’s going through a transition right now—leaving her day job to start an artistic adventure. And what she found was that her desire to be a free spirit was being squelched by her need for…structure.
Of course, this seems backwards, but it makes perfect sense to me as an artist and an autism aficionado.
So, here’s what I know about being an artist. A film maker needs a producer. A writer needs an editor. Michelangelo needed the Pope. And do we rail against those tyrants and their deadlines? And their ‘this won’t work because’? And their ‘we don’t have the budget for that idea’? Yes, we do. And then we produce art. Sometimes it’s great art, sometimes it’s just art that meets a deadline. Limits frame us and we can find freedom within the framework. That producer’s voice challenges us in our idea phase and we push back, most often by doing the work. Otherwise we tend to get lost in the idea phase, coming up with endless ideas that never quite get done.
We don’t like to do the work. Making stuff is hard! I recently set a goal for myself to blog once a week. I won’t tell you when I set that goal, but suffice it to say that it wasn’t when I actually started producing work once a week. It was well before that.
So, the tyranny of the deadline, the expectation of the producer, the demands of the donor keep us on track.
Now, here’s what I know about autism. Once again, I’m not an autism expert, I’m a Henry expert. And as a huge fan of Henry’s I’m also a fan of his particular autism. Autism needs structure. It craves it. When it doesn’t get it, it has a meltdown. I’ve noticed this in more than just Henry’s autism. It happens a lot with the people in our community and mostly the people in our car line at our autism program school.
Henry is actually pretty loose with his scheduling needs. He can go with the flow more easily than others I’ve driven to the field trip. I’m sure that’s in large part because I dragged him from this event to that when he was a toddler. He had to get used to my freelancer schedule.
One of the ways Henry handles his stress if he’s in transition is that he goes back to his calendar. I know I’ve talked about this before as it related to Hurricane Irma. But here’s the beauty move he uses that I love: If things really aren’t making sense and he’s going to have to go with the flow longer than he’s comfortable, he launches THE CALENDAR. He goes through every major event, listing as much of the year as he needs until he settles.
Here’s an example:
Me: Mom needs to pick you up Tuesday and take you to school on Wednesday instead of Dad. And then Granddad’s out of town, so Thursday will be different.
Henry: and then October Halloween. November Thanksgiving. December Christmas. Then my birthday and spring break. Then Summer! Go to Grandma’s house. Go to Idaho. Fourth of July! Theater week summer camp. Then October Halloween.
Me: yep. That’s what’s going to happen, I’ll pick you up on Tuesday and then Halloween will happen. Thanksgiving will be the 4th Thursday in November, then Christmas. And we’re good?
Henry: Yep! We’re good.
If you are going through a transition in your life, if you don’t have the structure you need, remind yourself of the pillars. There are pillars to life that likely won’t change. Christmas comes every year. The fourth of July is always on the fourth of July. Ramadan will be here for a month, even though the dates change. These are things you can count on!
Autism has all sorts of great life hacks for us. Henry and I do a David Letterman style top ten list of the Top Ten Autism Life Hacks That Will Change Your Life and how they can help us. Number 9, THE CALENDAR, is a good one and I hope you’ll use it!
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!
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.
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.