Why Poets are the Super Hero’s of the New Year
There’s no better way to learn economy of words and compelling word choice than by looking to the poets. That’s their super power! Poets are like painters who start with the frame. They are constantly asking themselves, “How can I paint the picture I want to share within this tiny construct?” Economy of words! Read on to discover how poets can share their super power with you and make you a better story teller.
Poet Billy Collins reveals he’s Superman at a charity fundraiser with the author, Alice Fairfax.
I see poems posted all over social media on the first day of the year, every year. A favorite for 2021 was Maggie Smith’s poem Rain, New Year’s Eve. I also saw William Carlos William’s El Hombre and i am running into a new year by Lucille Clifton. Mary Oliver’s Wild Geese is not only a classic, it’s a classic New Year’s reminder of all we are — all we can be in our one wild and precious life.
I spent New Year’s Day 2022 on the back porch in a lounger intermittently napping and reading poems from my favorite seasonal read Winter Song, a collaboration between Madeleine L’Engle and her friend poet Luci Shaw. L’Engle’s cosmic eschatological ponderings are always a welcome treat as the year turns.
Poetry is a good reset — a way to change the pace of our thinking and alter our breathing. I mean that literally. I like to use this little poem by Billy Collins, I Am Not Italian. Reading it silently I end up breathing where he would, as I imagine him reading it aloud to a crowded room.
The compact nature of poetry is good for our creative minds. When you are trying to write story, pick up a poem and feel into the economy of words. Each word is so specifically and graphically chosen. See the scene the poet creates with a meter and just a few lines.
For those of us that use story in everything from an actual story to a copy tagline, poetry reading can build your skills. If you have time, consider the nap next to the book of poetry. One poem and a rest. Watch how your language alters, your writing leaps and your breathing changes.
Another good thing to do is to write a bad poem. I write one every New Year’s Day. They’re never good, but that’s not the point. The practice of writing bad poems is one I encourage. No one’s looking. You don’t have to share it. Just scribble it on the back of an envelope or buried mid-page of a journal. Use bad poetry writing to get in the practice of conveying deep ideas and big images in a small amount of words. If you do, I promise you’ll start needing poetry at least once a year.
Ok, ok. Here’s 2022’s New Year’s Bad Poetry Practice.
It’s the pace of the anhinga,
Not the storks running the length of the shore,
Nor the heron, still as a dress form.
Not the floating white egrets or the circling osprey.
No. It’s the anhinga’s waving wings while resting on the bank, then
the rhythmic pulse, pulse, pulse
as they take off
and skim the roof.
I’m OK. I’m OK. Are You OK?
During the evening news on January 6, my son came into the kitchen and said, "I'm OK. I'm OK. Are you OK?"
He is 24. He has autism. He doesn't watch live TV. He's not on social media. He watches videos on YouTube. I don't know what pop-up he saw but he knew things were not OK. I had just turned on the news myself. I muted it. We did some soothing exercises. I was honest. “I am OK. But this is not OK. What's happening is not OK. What do you feel? Mad, sad, afraid?”
“Afraid. I'm OK. I'm OK. Are you OK?”
It's very rare for him to be in the kitchen when I'm cooking. He's sensitive to smell. It's more rare for him to ask about me.
Both actions were disruptive to me. It meant he was past his threshold. It put me past my threshold. A 24-year-old with an IQ under 75 knew it's not OK. Knew he needed to soothe himself with positive words. Knew he needed to check on the people he loves.
I'm OK. I'm undone by the hope in him and the grief in me. But I am OK.
I'm OK. I'm OK. Are you OK?
Quoth the StoryMaven 1
Marketing is no longer about the stuff you make but about the stories you tell. Seth Godin.
“Marketing is no longer about the stuff you make but about the stories you tell.” —Seth Godin
#branding #entrepreneur #nonprofit
#podcast #digitalcourse #writer #speaker #training #marketing #message #blog
#storymaven #story #storyteller #storybrand
#disneyside #disneyworld #theater #actor #Broadway
#sethgodin #truth #marketingquotes #storyquotes
Three Sides of the Corona Coin for Creatives
Are you feeling the pressure to write your King Lear before Phase 3 gets you back to your regularly scheduled life? Me too. There are two sides of the Corona coin that the creatives in my life are struggling with right now. The A side is use this time to create your masterpiece. The B side is lean in and hibernate. The tension between the two is growing as we go into phased openings.
These three quotes can help unravel this tension right now.
1. “Writing is not a performance — it’s a service.” Donald Miller
When Donald Miller said this in a pandemic instagram video, I was struck. I had to re-think my approach to my writing project. As an actor, my performing life was marked by the idea that our work as actors was being there to serve the audience. At the time, this was a novel approach to make your audience the star of the show. I learned from Bernelle Hansen in our storytelling shows at Disney World to love the audience and serve them. Meet them where they are at.
There are writing projects that I’ve been slogging away at over the past year and now sheltered at home I have carved out more time, more space for writing. I built timelines that have me finishing in June rather than December. That isn’t what I needed. I need to remember that my work is not a performance. What really keeps me going is that thought: Serve the audience.
There were many times in my daily performing life that I prayed for the audience, prayed for the individual I was going to pick from the crowd to be in the show. Giving someone the stage is a powerful thing. Keeping the focus that creative work is an offering helps me to keep on those timelines, even when I feel overwhelmed. Which brings me to my next point.
2. It’s okay to not be at your most productive during an f’ing global pandemic
I have no idea who created this lovely graphic meme but my life coach Elizabeth sent it to me. And I love her for that.
One of my creative colleagues is almost bullying me with the demand to produce work, “This is the time to create your masterpiece. Keep going. You must!”
Except that I’m in the middle of an f’ing global pandemic. I’m sure you’ve read about our survivor brains. We are conserving energy to survive. The uncertainty is an attack on me — driving me to hoard resources. Then I get hopeless and feel like this will never change. My system is crying out to shut down until this winter of our discontent is over and we can emerge in a spring.
As much as I want to create and am creating, I also need to back off — definitely drop the pressure to create something brilliant. The King Lear thing needs to stop. The story that the Bard penned his greatest work during the plague got lots of play in the first few days of this plague. Here’s some news — I wasn’t Shakespeare before the pandemic and I won’t be as a result of hiding in my house with a ream of toilet paper from Costco.
This isn’t the Iditarod. I will not freeze and die on this journey if I lay down and take a nap. It’s ok. We will get through this and we will have created during it and after it. Because that’s what we do.
3. Behold, I am doing a new thing; now it springs forth, do you not perceive it? Isaiah 43:19
The Lord G-D Himself said to the prophet Isaiah during a time of exile that He was doing an new thing. Then things didn’t seem to change so much for a couple hundred years.
I want something to be produced out of this time. Like most creative projects, it will spring up. Do I not perceive it? I hope to be present and aware enough to perceive the good and the new that grows from this time.
The best thing to do during this global f’ing pandemic is churn good soil for something new to spring up. I am resting when spiritual and mental exhaustion hit me. I am writing every day — some of it good and some of it for the bin but it is a pleasure to write. I hope that when I look up from my desk in July I will see work that can serve the audience. It won’t be King Lear. Probably Shakespeare didn’t know it was King Lear when he was scribbling away locked in his home with no hand soap and no internet access. It was just what he was doing with his time.
We Were Born Socially Distant
Social distance for me means being physically apart while trying to stay relationally connected. Henry was born this way. I’d say social distance is the gap between desire and behavior in Henry’s autism. He loves to connect. He just wasn’t born with the tools or innate understanding of how to connect. Simultaneously, he wants to be left alone. He likes to be in a room with his peers doing his thing, but not engaging with them or doing their thing. We call this playing alongside.
Creating that physical distance while making sure the separation doesn’t lead to a social/emotional isolation is the challenge. We need physical distance to survive this crisis and social connection to thrive in the crisis. Here are three Henry tips for ‘playing alongside’.
1. Reach out in your own way.
Henry loves connecting with people. He greets every single person in the grocery store. “Hi, my name is Henry, this is Alice, what’s your name?” He doesn’t quit until he gets an answer. If the person he’s accosted with his greeting doesn’t answer, he heads to the next shopper.
In the last fourteen days, I enjoyed a girls night out group chat via Zoom, a one-on-one coffee meeting standing outside in a park six feet apart, and a call from my parents to join their Facebook live church service.
So reach out and connect in whatever way you enjoy. Don’t worry about what others think. If they don’t want to respond, they won’t and you can just move on to the next shopper.
2. Know this — you’re having a meltdown.
Change is really hard in our autism world. Disruption of schedule leads to meltdowns. I’m pretty sure that you are not biting your shirt collar to shreds or laying on the ground screaming. I’m just as sure that your entire being wants to do that right now. Snapping at the spouse, opening the fridge door too many times, not being able to sleep… whatever your response, remember it’s not you. It’s a meltdown.
Our best tip for meltdowns is to acknowledge them. We say yes to the need for a meltdown, but not always yes to the method. If the expression is harmful to ourselves, others or could break something, we find another way to release our body’s pent up frustration.
Believe me, your body is storing up frustration from having your regular routine altered without your approval. You may not know it but every kid with autism is here to show you that is actually the case. We often take three deep breaths with accompanying arm motions. Or, because talk shows are our world, Henry will say, “Let’s go to break”, cover his eyes and then pull his hands away and say, “And we’re back!”
Acknowledge that your system has been shut down improperly and find a way to restart.
3. Use what you’ve got.
Henry doesn’t have full conversations. Except with my husband Mohamed and for these Henry uses the Sunday morning TV show VeggieTales with Henry as Bob the Tomato and Mohamed taking the role of Larry the Cucumber. Bob the Tomato is a wise sage who helps the hapless Larry by explaining how life works. When Henry met Mohamed, Mohamed was more than a little lost, as an immigrant from Egypt. I think it makes Henry feel good to be the guide. Either way, Veggie Tales ends with Bob & Larry saying, “Always remember, God made you special and He loves you very much.” Which is how every single interaction from Henry to Mohamed ends. So, that’s nothing but lovely.
Use whatever tool is available to you to make connections in this new paradigm. Instead of bemoaning the loss the things I enjoyed — pedicures, happy hour, coffee meet ups, yoga class — I’m forced to use what I have in my reach. I had a few moments of wanting to give up and hide under the covers for the next 14 days. Instead I joined our yoga girls on Zoom and a Facebook group for local artists.
Don’t give up. Stay connected, because we want and need you and your unique gifts. Please give them to us. Because God made you special, and we love you very much.
How To Leave a Legacy Without Knowing It
In 1981 my dad pulled our sky blue K car wagon into the Corrine gate at the naval base in Orlando, Florida. This would be our home. He served his final post here and then retired from the Navy and like that, we were done with moving.
I went to high school here, joining the theater department to learn from local legend, Anne Derflinger. The first thing she said in her Intro To Theater Class was “You don’t want to make this your career.” Instantly, I knew. I would make it my career.
I didn’t want to move anymore, so I stayed in Orlando for college, majoring in theater. During my four years at Rollins College I visited New York regularly to see how I would like it. It was the only option for a theater professional — I certainly could not stay in Orlando and have a career in the arts.
There wasn’t a professional theater. There weren’t acting jobs. If you sang and high-kicked you could audition for one of Disney World’s three musical shows or a maybe a Carnival cruise ship. I would need to find a city I could live in and make a living in.
Or, I could do what I ended up doing — devoting my entire to career to creating culture in my city, Orlando. It wasn’t noble, I just didn’t want to move. Somehow it seemed easier to build something than to find something.
I was part of every launch of every theater that might one day pay their actors . Orlando Theater Project, SAK Theater Comedy Lab, Orlando Shakespeare Festival, Orlando Rep, the Orlando Fringe Festival. It sounds fancy but what it meant was scraping gum off donated chairs and scrubbing toilets in abandoned buildings (a funeral home, an office, a mall, a bar, three churches.)
In the early 90s two new theme parks opened with shows for comic actors. Lots of shows. Lots of actors moved in to town and they needed something to do artistically that wasn’t clock-in theater. After our shifts we created theater companies and made art for free, just to have somewhere to do it.
This week I met a young man from a local high school who gave a presentation about the opportunities the five-year old performing arts center in Orlando has given him. He wants to be a professional stage manger and he’s being mentored by professionals here. In Orlando. He spoke and I cried. I didn’t stop crying. All the stories floated in between me and his presentation. The Big Bang Bar on Orange Ave where we put on a three-person apocalyptic drama. The rehearsals in my living room. The now defunct Navy Base that brought me here, turned into an arts-loving neighborhood.
Looking too far ahead doesn’t help you do the task in front of you, especially when that task is sitting on the floor scraping gum. The only way to leave a legacy is to do the work of now. The work that you must do, you need to do for your own survival. For your own fulfillment.
Is it too dramatic to say that I cried realizing my life’s work was fulfilled in this young man? Probably, but then, I’m in the arts.
Sharing Messy Stories or When Autism got Tweetable
This summer there were at least three posts about children with autism that went viral. I wrote about one in my monthly post on The Gloria Sirens, and how it reminded me of The One Question You Should Ask Yourself in the Middle of a Breakdown.
The posts were the kind of messy victory stories that I love — that adorable little boy in his cowboy suit breaking through to his first words. The Universal Studios meltdown and deep breathing. I wondered how I would have handled our messiest stories if there was Twitter and Instagram back in the dark ages of the beginning of this millennia.
When Henry was about five, we were in our Starbucks with a group of senior citizens. Henry was flapping a green straw — it was always a green straw which is why we were always in Starbucks. A tall, lanky gentleman with glasses got up from the group’s conversation to point at Henry and ask me, “Is that autism? Is that what he has?”
“Yes, how did you know?” I said.
“I saw it on Diane Sawyer.”
In that moment, I was no longer alone. I know it’s hard to believe but 20 years ago, it was unusual to see someone with autism. Collectively, we didn’t go out a lot. If you did see a parent braving the grocery store you probably wouldn’t have known what the deal was with that kid.
Other toddlers and pre-k kids had mousse in their hair and little khaki shorts with plaid shirts tucked in. Henry wore pull-on shorts and a t-shirt with marks on the neckline from where he chewed it. He had a scab on top of his nose from obsessively flicking his fingernail across the skin. I had the hollowed out eyes of someone always searching — for the next treatment, the next cure, his other shoe.
We weren’t cute. We weren’t victorious. It wasn’t adorable. It was filled with poop. No, really. Some children with autism smear their feces. Henry was one of the some who did — on the walls of his room, on the keyboard of the desktop computer, into the CD rom drive. If you’re too young to picture a CD rom drive, imagine cleaning poop out of the port to your iPhone.
Social media is filled with our sizzle reels while our blooper reels remain hidden from likes. So much of my early childhood parenting was more blooper reel than sizzle. I’m guessing that’s still the case for most families. But I’m hopeful that all of our stories will be more and more tweetable. That we’ll share the messiness in our lives along with the wins. It makes those victories, and those meltdowns, richer for us all.
Creating a Path of Persistence, Positive Declarations
One of the things I’ve learned from Henry is how to train my own brain. When Henry was first diagnosed we were told we needed to get early intervention because wherever he was at by age five would be it. The time to train the brain was NOW, NOW, NOW.
You can imagine the pressure. Most autism moms, and really most moms and dads, could probably have told you then what neurologists came up with a few years later — that the brain is plastic. You can constantly train it. You can re-shape it. You can make it better.
When we see a groove in Henry’s behavior that is not positive or productive, we retrain.
For years he picked at the skin on his nose until he had a permanent scab the size of his thumb on top of his nose. SO stressful, so unpleasant to look at, and painful for him. But he couldn’t stop.
My friend Noel made a coconut balm in her kitchen from the flesh of real coconuts. I would give her twenty bucks and she’d make me a little container, of what turns out to be coconut oil — years before it became the answer to everything that kale doesn’t solve. I gave the little tub to Henry and anytime he had the need to pick at the skin, he put coconut balm on it instead.
The physical activity of opening the tub, scooping out coconut oil onto his fingernail, rubbing it onto his nose, washing his hand, and then replacing the lid created a new habit — and a new neural pathway. When the desire to pick would come over him, it was replaced by a desire to twist a cap, touch a soothing balm. It was replaced and then it went away. After all, opening a tub of coconut oil every few minutes grows tiresome.
Creating a neural pathway is important stuff when it comes to reaching your goals. Stretching my hand out to my dream of writing as a career was filled with roadblocks — all of my own making. I’m not good enough. I don’t have time. Who would care? Hey, there’s a cat video.
While I was stalling, Henry was telling Coach Silvia he wanted to be a talk show host. Except he didn’t just tell her his dream. Everyday at 4 p.m. he said “I’m the host of the OCA show in syndication.” Then he told her the guest line-up for that day.
Two years after he started this persistent, positive declaration she finally broke. I got her text: “I’m making Henry’s dream come true.”
Here’s the lesson for you and me: Persistent, positive declaration creates the neural pathway for your goal. When you speak your goal out, it’s not some woohoo speaking something into existence. You’re actually creating a path in your brain. Not only could it actually happen, you’re creating a path for when it does happen that your brain will accept it. Like a donor to a host. When the blood starts flowing, the vision starts unfolding, the host is receptive because you’ve created the room for it.
Here’s another lesson: When Henry started saying his mantra, the only way to have a talk show was to go to a TV studio and shoot one for broadcast. That the technology for Henry to have his own Youtube talk show was available two years later helped Coach decide to do it. If Henry had waited until the technology existed to tell us what he intended, we wouldn’t have been prepared to make his dream come true.
He declared it as a truth, not as a want, not as a possibility, but as a reality: I am the host of the OCA show in syndication. When the way to produce your own talk show appeared, we knew what to do. Our neural pathways were also trained by his declarations.
And, as of this year, or this season as Henry would say, he has a band! That’s right. He’s the host of the OCA show. He has a band made up of staffers and participants. He was featured in a syndicated newspaper about being a talk show host.
Create a new neural pathway today and proclaim your positive plan with persistence!
When I’m My Most Difficult Client
Create an environment for success with your most difficult client — even if that person is you.
Step two in planning a Creative Retreat is setting the expectations.
You’re the Client
I started writing about the Creative Retreat I gave myself as a gift. To make sure I got the most out of it, I needed to set the right tone. The first thing I know about myself is that I’m rebellious. (So difficult!, as my husband loves to say.) If there are rules, I’m going to find a way to rebel against them. This is a good thing in a creative setting, that mutinous attitude can produce all sorts of great ideas. Two things I need are structure and fluidity: A plan that is too open, I’ll wander aimlessly from room to room wondering what to do. Too rigid and I’ll reject it all and end up doing nothing.
You’re the Guest
I decided the best way to handle this difficult client was to create distance between me and the plan. So I treated myself like I was a guest to the retreat and sent myself a PDF welcome letter with a schedule.
Here’s the welcome letter I sent to myself, from me the Creative Retreat Director:
Creative Retreat
Welcome to the Creative Retreat! Your time here will be spent renewing your intention towards a project and recharging your creativity. We expect great things!
We encourage you to participate fully and to be fluid. Be aware of when you need to stop. Be aware of when you need to keep going (even when you feel like stopping.) Identify the difference between fatigue and fear. Start each day with stretching, meditation, a walk or a swim. Center yourself.
Here is your plan for the week. We hope and expect that you will stick to it and simultaneously make it what you need it to be in the moment.
You’re the Director
You are in charge of your creativity and your energy. When you put a little distance between yourself and your plan for your creativity (i.e. your NaNoWriMo schedule) you establish your own authority over your energy. Planning and executing a Creative Retreat as the Director and as the Client was really helpful to getting the most out of the experience for me.
Do-It-Yourself, In-Home Creative Retreat
For many years I’ve wanted to create a three or four day retreat. I toyed with the idea of a creative retreat for moms or spiritual seekers, writers, caretakers, or pet rescuers — you name a group and I thought maybe they needed one. I got to a point in my current project that I realized it was me that needed the retreat. Bu who would lead it?
It needed to be given by a skilled presenter with a passion for leading retreats, an understanding of the creative process, and a focus on writing. I looked at my LinkedIn profile and indeed, I fit the bill.
So, I did it. I took vacation time the four days after Labor Day which actually gave me nine whole days if you count the weekend before and the weekend after. Since I was the event manager and set up crew, as well as the creative leader and spiritual mentor, I needed all that time.
That it coincided with my husband’s visit to his family meant I could have the house all to myself and design a schedule that fit my particular needs for a creativity recharge.
In upcoming posts, I’ll debrief the days, so you can create your own retreat, because, believe me you need one. But here’s where it starts — with the intention to recharge and reconnect. The style is up to you — you can design a retreat that’s pure creative boost, or you can, as I needed to, focus on a particular project.
Here are the steps to enact your retreat:
Step 1: Decide on a date, time and place.
Look at how many days you actually need three, four, five? Look at your family calendar and your work schedule and see when the stars align for you to take off from both.
Then find the place that matches those dates. Can you book an Air BnB? Can you offer to housesit for a friend? Are your parents on vacation? Can you farm out your own family to other homes?
I’m cheap so I didn’t want to actually spend money. I housesit while my parents snowbird, so their place was an option. Ultimately, this project would take my total attention, and I had my husband’s support, so if I needed to I could have booked 3 days at a local Air BnB. Luckily, the perfect vacation time from work for me coincided with Mohamed’s annual visit to Egypt. My child is currently playing the role of sullen graduate who locks himself in his room so Voila! My home became the perfect oasis from it all.
Step 2: Design your retreat schedule.
My detailed schedule included an introductory welcome from the director (me) and activities like: creative exercise, focus exercise, pool time, yoga, timed writing, project draft, guest speaker, nap.
Step 3: Out of Office
Let employers, friends, family members and clients know you are going on a retreat. Use the word ‘going’. They would totally respect your time if you were booked at a conference and had paid for an expert staff and hotel. You are an expert on your creative needs and you have booked this time. You are not available. Do not elaborate. The moment you tell someone (as I screwed up and did) ‘it’s in my home, I’m leading it!” They will see fit to break down your boundaries and invite themselves for coffee, for a pedicure, or ask you to rewrite their website ‘super quick’. I set ‘out of office’ messages on ALL of my email accounts including the one for discount mailers from overstock.com.
Step 4: Do it. Do it!
I’ll walk you through my schedule in upcoming posts so you can adapt the idea for yourself. Just know that this is important. This work is important. Your creative spirit is important. It’s worth taking the time to feed the creative stream.
Fragile: Move With Care
When we first moved into the third floor apartment overlooking Shingle Creek and the Mall of the Millenia, we knew it would be a temporary living space. It is an apartment, after all. Sitting on my balcony, sipping coffee and bird-watching at the headwaters to the Everglades has been a joy. Being within walking distance of Macy’s is also a joy but we're ready to move on.
I thought Henry enjoyed it here, but was also pretty sure that he knew this was not our forever home. When I told him last week that we found a house and we were going to move, I didn’t expect a flat out NO. A frowning, head-shaking NO.
Then we did all the things you do when you are managing a disorder that dislikes change. I showed him pictures of the house. I let him pick out his room. I showed him the pool and we talked about when he would swim. We created a calendar — packing days, Special Olympics Summer Camp days, staying at Mimi & Granddad’s while the house is painted days, moving days, in the new house day. A full two months of events, all set out for him. Then he was excited. Or so I thought.
I went into his room to give him a suitcase and noticed that he’d taken all the pillows and blankets off his bed. They were in the walk-in closet on the floor, arranged like a little sleeping cave. Or maybe a cocoon. I’m hoping for a cocoon.
Henry’s behavior got me thinking about my response to moving into our dream home with a writing room just for me. I thought I was doing great -- I'm excited! Then I noticed that I wasn’t sleeping very well. I was eating dinner, not meals exactly, but fists full of Cheez-its. Every few hours I was snapping, “Where the hell are my glasses?!”
I asked my husband to go look in Henry’s closet and tell me what he thought. He surveyed the tent-cave and said, “It’s ok. I’m nervous too.” The mighty Egyptian man is nervous too.
Because that’s what we are when we make a change in life. Even though I am thrilled, my system — my body, my central nervous system, my emotions — are in a whirl. I don’t have autism, so I know how to cope. I pin home decor on Pinterest, cram Cheez-its and snap about the location of my glasses (you guessed it -- on top of my head. Every time.) Healthy? Maybe not, but socially acceptable.
I want to be like Henry and know when I need to curl up on the closet floor. It’s ok to take time to be overwhelmed. Overwhelmed is a state, and it happens to my system, whether I like it or not. Being overwhelmed isn’t a reflection of my truth or who I am and that's what it is for Henry. A state that requires care.
French Fries, Faith and Losing a Friend.
There was a particularly desperate time in my life. At seven years old, Henry was in the full bloom of behaviors. In the car, he’d reach from the back seat to my driver’s seat and pull my hair. He’d scream. I’d scream. Once, I pulled under an overpass and we shrieked until there was no more sound. Then we drove on.
One of those shrieking, desperate afternoons I was wearing, sweat pants, and a pale t-shirt with a sweater, all purchased from the Longwood Goodwill, as were all my clothes at that time. Henry insisted we go inside to the play place. The play place was a particular trial for me. He’d loose his socks or shoes or some article of clothing up in the highest tube. His play would confuse and challenge the other kids. The fear of a toileting mishap was constant. That day I was too tired and beaten up to argue, so in we went.
In the warm afternoon I removed my sweater and left it in the car. It wasn’t until after we were in line that I saw that the pattern on my bargain box bra was showing through the modest pale pink shirt. I looked Iike I’d been panhandling for the 50 cents for our fries.
When we got to the counter, the kid stepped aside to let the manager assist us. I looked into the face of my friend and pastor, Orlando Rivera. He was getting a business degree and felt he needed to have real-world management experience. He was also pastoring a church downtown and had moved his family, his wife and and then three or four of what would ultimately become 10 children, to a home on Westmoreland Street. There in the poorest neighborhood, they lived church from their front porch.
It was school pick up time, so the play place was miraculously empty. Orlando took a break and brought a tray of fries — GFCF for Henry, vegetarian for him. We started what would be a semi-regular session. Henry played in his way and I received the counsel of my friend, pastor and manager of the Winter Park McDonalds.
Last week, I got a text from my friend Sheryl whose birthday falls on August 3rd, the same day as mine, the same day as Orlando’s. “Our birthday brother…” it started. I read it several times without understanding. Tragic. Traffic. Accident. Lost. And then I found myself on the ground and heard a wailing sound. My husband was next to me holding my phone saying, “I’m so sorry.”
Nothing in my faith tradition, religious practices or in holy text helps me make sense here. There is no a+b=c to look up. There’s no information to apply that helps me understand.
But here’s what comes to me from the mystery of faith: the resonance of a man who took time for french fries with a desperate mother is eternal. It rings now in the lives of his children. It rings now in my life and Henry’s life. And its beautiful sound is ringing now in the heavenlies.
Being a Sustainable Nut or What Happens When Your Child Graduates
It happened last week, a high school graduation. It was expected, strived for, and it came as a total surprise. I knew, and yet I didn’t know, that this was an event for me as much as it was for him.
I once told a new pediatrician Henry’s health history: Well, he had a placental abruption when he was born.
“Actually, you had a placental abruption. That was something that happened to you,” he said in that quiet way doctors have of sharing life-changing information. Oh, yes. To me. I had that event. Henry had a linked event, that he was born needing to be resuscitated. Same people involved, same time, not the same events.
From senior photos through to the actual ceremony, I held on to this like a mantra, delivering it to myself in the same kind pediatrician tone: Actually, this is happening to you.
He is graduating from High School. Yes, that’s happening to him. He’s thrilled. He’s excited. He’s the star of an event. He gets to wear a costume.
What is happening to me is that I am matriculating a boy into an adult life. I won’t be taking him to school in the mornings or sending in snack money. I deleted the recurring Tuesday/Wednesday ‘Pick up HB & Giles’ appointments from my outlook calendar. They will not recur.
My friends and family came to the graduation. They brought cards for him, tucked with cash and gifts. One friend brought me a a gift. It is a necklace made from sustainable nuts.
You don’t have to look very far for an apt metaphor of my 18 year effort towards getting him the education he needed.
A Sustainable Nut:
A nut is a dry fruit consisting of an edible kernel or meat enclosed in a woody or leathery shell.
Synonyms of sustainable include:
continual
viable
feasible
unceasing
imperishable
renewable
supportable
unending
worthwhile
The meaty kernel of continual, unceasing, work created viable, feasible, imperishable results in a person who has turned it into fuel that will be renewable support for him in this seemingly-unending pummeling of life that is ultimately, worthwhile.
It’s a perfect honor. And it’s really pretty too.
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.
How Deepak Chopra Saw My Essence. (He looked)
Dr. Deepak Chopra came to Dr. Phillips Center last year and did a talk on his latest book, You Are The Universe. My role was to help with the VIP book signing and take photos for social media. I was in our event room with the VIP guests who were having a glass of wine and a nosh, waiting on Deepak…which sounds like the title to a play.
I had strict orders about when Dr. Chopra was to be back to his dressing room. So, I organized the book signing to give everyone a nice moment with him within our schedule. At 5 minutes to 7 p.m. Deepak Chopra arrived with several of the arts center staff, all directors and senior directors, mostly in charge of production.
When Deepak entered the room, I turned and looked him in the eye. I went towards him with my hand extended. He looked me in the eye. As we shook hands I said, “Dr. Chopra, I’m Alice and our group is excited to meet you. I understand you need to be backstage at 7:30 so I’m going to make sure you leave this room at 7:25.”
“Wonderful, Alice, I’m Deepak,” said Dr. Chopra. “Now, I have a video for the opening of the show that I really want to use. I know it’s last minute but can I have someone email it to you and we can use it?”
Now, I’m not in production. I was there to take one photo on my phone for Instagram. He just rode up the elevator with any number of people there to help him. I have no idea why he didn’t mention this idea to them. But here’s what I do know. I know me. I’m a performer and I am a leader. I am a presence. I know my energy is large and that often people respond to me as if I’m in charge. A couple in the Paris airport once had me direct them to their terminal, in French. I speak very little French, and I’d never been in that airport before but I got them where they needed to go. So, I get that about me.
While I believe that Deepak Chopra, this master of awareness, met my presence, knew me and knew I was the one to get this task done for him, what I also know is that I looked him in the eye and told him my name. He looked me in the eye and did the same.
Autism Life Hack #7 is Good Eye Contact! Henry worked on this in early intervention days when he was in Pre-K. I would hold his face towards mine. I would point to my eyes and say, “Give me good eye contact.” In later years, he learned more subtle forms, more mature forms. In High School, he’s very obviously been working on shaking hands and greeting people. If you’re in the line at Walmart with us, watch out. You’re about to have a beaming face invade your personal space with an outstretched hand and hear, “Hi, I’m Henry, what’s your name?” (We’ll work on personal space soon, I promise.)
Yes, I would like to think that Deepak Chopra saw my essence and identified me as the one who would make something happen. Because it pleases my soul, I’m going to believe that my spirt rose up to meet his spirit, they communed, and I was known and heard and he was known and heard.
Very likely though, he responded to me because we shared good eye contact and greeted each other with our names. He got his video for the opening of his talk because I said yes and then passed it off to one of the people he rode up in the elevator with. Then Deepak and I went through our meet & greet plans for maximum efficiency and personal connection with his guests. He was backstage by 7:30.
Whether it’s a spiritual communion or a simple acknowledged request, it usually starts with good eye contact. You can start practicing Autism Life Hack #7 today! I promise it will change your life.
Two Mom’s Playing 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.
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.