Taking life step by step is more like a cha cha than a straight line.
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!
What happens when you have to change plans mid stream? Changing course midway for someone with autism isn’t really a thing. You have to create a new plan for the unexpected.
We showed up at Special Olympics Saturday morning ready to play team skills basketball. It was raining and rain is not sensory friendly. So, getting there was a challenge. Apparently, it was too much of a challenge for several of the other team members and we had to forfeit our game.
I’m always interested in how flexible Henry might be, so I started just by letting him know: The team isn’t coming. We’re not going to be able to play today.
His face fell. Uh Oh. It meant more to him that I thought it did. He sat down in the EMT’s fold-out chair and said, “I’m not going.” Meltdown alert.
It was time to be find a version of flexible that avoids a meltdown. I could imagine an almost 6 foot, 200-something pound 22-year-old laying on the floor sobbing or maybe grounding himself in the chair and not moving for hours.
I’m not the most flexible person in the world. I like a plan. I like my plan even better. I’ve learned that to be flexible, it helps to envision a new plan. It’s when I get attached to the things of the old plan and my emotional energy rises, tinged with panic, that Henry reads it and gets REALLY nervous.
So step one of the new plan — deep breath for me.
Step two of the new plan — not too many options. If I offer a bunch of things that we could do, that’s just as overwhelming. Be decisive.
Step three of the new plan — acknowledge where we are at. We have been coming to this exact gym on some Saturday morning in December for over 10 years to play this game. “I’m disappointed,” I said. “It’s a bummer.” Giving context to the level of appropriate emotion helps everyone involved.
Step four of the new plan — do something that is satisfying. Henry’s main purpose at Special Olympics isn’t sports. While he’s improved over the years, and he’s quite tall now so making a basket does happen, he’s really there to host. Moments before the officials take over, Henry heads to the court and introduces himself, the teams, and his imaginary band, band leader, and announcer. The usual.
To satisfy our purpose there I asked one of the high school volunteers if he could shoot some baskets. He did. Then I told him if he wanted to cheer on the crowd, now was the time. He took to the floor and greeted the crowd, albeit more subdued than usual.
Final step — offer a treat attached to the moving on step. I asked him if he was ready to go to Chik-fil-a and then to Mimi’s house. Food usually works. He said yes, managed to make it to the car under an umbrella without incident, put his seat belt on and proclaimed, “Special Olympics. I won!”
Yes, you won!
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:
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.
I started to get worried. Henry is independent/not independent — he can be left alone, a true blessing, but he can’t make himself a sandwich or use the microwave without supervision. I feel confident/not confident about him being home alone. I’m so proud of him that he can and I’m terrified that maybe he can’t. The only way to find out is to leave him home alone, with a very stringent set of rules.
One of the rules is that you MUST text me back. You must respond. So when I sent a text about what lunch was and where to find it, I expected a response. I even saw the little text bubbles that meant he was typing. I waited a few minutes and then the terror started to creep in. I sent a second message, “Are you doing OK?”.
That’s when the first of three messages on what I call The List came in. Paragraph-long messages during which Henry lists what else I can pick up at the grocery store. He even answers my desperate ‘are you ok’ message in the midst of The List.
I love everything about how Henry communicates. You can feel the joy of being independent. Of being able to state what he wants in every food item, some of which he’s never eaten in his life — pork chops? Please!
Enjoy the freedom of asking for what you want and doing so in a delightful way, with a sign off in three languages.
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.
I have wrestled all summer with how to qualify the transition we’re in. For Henry this summer has been a perfect blueprint of his future — his plan is to take the rest of his life off. He describes graduation from High School as ‘retirement’. He’s told teachers, friends, disinterested passers-by, and members of the media that his next step would be ‘staying home and playing games’. Between graduation and moving house there was a good deal of ‘staying home and playing games’.
I remember when he was an infant and I was warned that if I didn’t move from my weak breast milk to formula he would be diagnosed with ‘failure to thrive’. That is a gut punch of a phrase for a new mommy. I don’t know what the medical establishment means by it, but what it sounded like, smelled like, tasted like and felt like to me was: YOU are failing to thrive your baby.
This transition has felt like the adult equivalent to ‘failure to thrive’. I leave him in the morning with enough food for the day and text him every hour. He rarely texts back. I developed an infected tear duct in my left eye the week of his graduation. Two weeks later when we closed on our house it moved to the right eye. Did I mention we also bought a house?
In order to get Henry to do something, anything, I created a daily to-do list of hygiene behaviors, meal plans, and one chore — vacuuming, collecting the garbage, wiping down the bathrooms. Everything had a check box. If I forget the daily print out, I come home to him in bed at 4:30 p.m. in the same clothes as the night before. He gets up and has breakfast at dinner time. If I leave the daily print out, I come home to a clean and fresh smelling young man who has proudly accomplished all his chores by 10a.m. so he can get back to ‘staying home and playing games’.
While for me this feels like failure to thrive, I started wondering if for Henry this isn’t as dire a situation. Maybe the push to stay home and play games wasn’t so much a regression, a failure to thrive, but a true break. He’s been supervised on a 1 - 4 ratio for much of his life. His days were scheduled to the minute. What if he just wanted a break? My sister with her two adult children and my friend with her four, described their kids’ responses to graduation as a similar experience of waywardness, confusion and need for a break — though the behaviors were slightly more sophisticated and involved tattoos, piercings, job quitting or living in a hammock in the back yard.
Towards the end of August, I spoke with him in a meeting on our back porch. “Henry, most people who graduate take a break for the summer. They back-pack in Europe. They go on a camping trip. They live at the beach and do odd jobs. Summer is ending soon and you’ll need to get started on your work life now that your school life has ended.”
Changing the story from my failure to launch my son into thriving to he’s on the autistic equivalent to backpacking in Europe has at least caused my eye infections to clear up. His graduation is about him and about me — and we have two different stories about it. Finding the story that serves us both best is the challenge and the reward.
Every year Rodney Whitaker comes to Orlando to lead a jazz camp for students. I got to interview him and his colleague, Diego Rivera during that camp, right before they performed their 'Professors of Jazz' concert. When I saw Rodney and his other professors play together, I knew that jazz was what I love to do. It's what I always want to be doing. I'm not talking about the music, I'm talking about the exchange of ideas, the flow of energy. They were playing songs that were known, recorded and written. They were playing them in their own way, with their own unique contributions, making those offers right in the moment onstage, in front of an audience. To have that kind of flow within the prescribed music, they had to be in constant communication with each other -- looks, nods, feeling the groove, and sometimes talking to each other onstage, whispered picks ups or ideas, and always the encouragement of purely enjoying what the other was offering. It was magic. It was inspiration. It was jazz.
Here are some of the quotes from the conversation with Rodney that I go back to for inspiration.
On your journey: "I never made it back, but I made it back." In reference to leaving school and then becoming a professor.
On finding inspiration: "Some people it’s Jesus. Some people It’s Jazz."
On stepping out: "People are looking for you. They are looking for you; they might not know it’s you specifically, but when they hear you or they see you, they know it’s you."
I hold that as my beacon when I get lost in the work or in the fear of producing the work -- people are looking for me, so get the work done and get it out there. You can take a listen to the whole conversation here.
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.
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.
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:
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'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.”
When everyone was playing the 'Old Headshot' game and posting their black and whites, the line from A Chorus Line "Who am I anyway, am I my resume?" sang through my mind all day. On the day, I couldn't find any of my old headshots, which used to be in stacks in the closet. I finally found a few strays, each had a different version of my face and a different name. I think my name has changed more than my face.
When I was 10 years old I put my foot down. I would no longer be called Alice Ann. It was a baby name. Obviously. I mean I’d been called that since I was a baby. And double-digit me already realized the value of branding and Alice Ann felt too soft. I may have looked adorable with my toothy gap and blonde pigtails, but I was a force to be reckoned with. A fact, BTWS and PS, that was also the case since I was a baby.
With our moving around Navy life, it wasn’t that big of an impact. It wasn’t like people knew me from forever. I didn’t grow up with anyone calling me Alice Ann who couldn’t break the habit. Only family and we are pretty spread out. On the occasion that I see my cousin, she will still sometimes call me Alice Ann. She and I are about the same age and she happens to be Elizabeth Ann, so it’s makes sense. And I’m not as adamant about it now, especially since it turns out that changing my name became a habit.
It seems that every 10 years I change my name. 11 years after my 10 year old move to Alice, I adopted a stage name: Alice Fairfax, from a place I lived not for my love of English literature. My maiden name was too challenging. If you’ve ever had to write me a check or call me for my table, you’ve gotten it wrong enough times to know. Henry’s last name is Bass, which I was for a time. When I got divorced, I didn’t change my name back to my cumbersome maiden name to help Henry but I wasn’t a Bass anymore. I didn’t know what to be. I couldn’t put my foot down or my finger on it.
When I married my husband, I expected to be Alice Ahmed. I really liked that. Nice and smooth. Except that when he came into the country, Immigration chose to adopt the last name on his birth certificate as his surname. There aren’t surnames in Egypt, you use your Father’s first name. On his birth certificate are the names of his grandfathers up to the name of his great grandfather, Ramadan. So then both he and I became Ramadans. Hilarious to his family in Egypt. Hilarious to my family in the U.S. A friend said, “You just don’t seem like the holy month of fasting.”
When my husband became a U.S. citizen there was a box: check here if you’d like to change your surname back. Apparently, it’s still a real thing. So he checked the box and now he’s who he is. But I’m still a Ramadan. It’s not a confusing time for me but it is a launching time. Launching Henry from school to work. Launching my creative work in a new way. At the last seminar I led, I tried to introduce myself and I tripped over my last name. Ramadan isn’t right. I’ve been playing with my maiden name again, but when I tried to use it, I tripped again. I’ve moved on. It’s a baby name.
So the launch continues. I’m trying Alice Fairfax on for size. It seems roomy and comfortable. I ordered business cards with that name. Alice Fairfax. Yes. That’s it. I’m putting my foot down. For now. Check back in 2028.
Spring break in Florida means cool air, warm sun, good hair and a flood of family and friends visiting from the tundra. A month ago Rollins College theater alums descended for a reunion. My high school teacher, a Rollins grad from the '70s, and I stood on the stage at the Annie Russell Theater with my former classmates from the late '80s, alongside colleagues from my Disney career who graduated in the early '80s. An interesting discovery was that many had gone from lives in the performing arts to careers in counseling, mental health and life coaching. It makes sense -- our art is discovering character and motivation. It reminded me of meeting Elma Linz Kanefield who pioneered the counseling program at The Juilliard School. Her focus is on counseling and coaching the performing artist. Here's an excerpt of our conversation.
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?”
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?”
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.
On Monday evening the Actor's Fund is producing the 15th Anniversary Reunion Concert benefit celebration of the 2002 Tony Award-winning Broadway production of Thoroughly Modern Millie. To celebrate, enjoy this interview with Alice, Henry's Mom, and original Millie cast member Dan LoBuono. We talked about inspiring the next generation, his Broadway career, his Millie experience and his advice to young actors.
Last weekend I instituted a meal planning schedule for the weekends. Henry has a habit of pouring out an entire bag of chips, a full box of crackers, and every sleeve of cookie onto a plate and grazing all day from Friday evening through Sunday evening.
The meal planner announcement went over as I imagined it would. He grumbled and fussed. He re-enacted Homer Simpson choking Bart with me as Bart. And then he did it -- he ate on a schedule and portioned out serving sizes.
I love that Henry uses every resource available to communicate his wants and needs. Even though I don’t enjoy being choked and told, “Why you little…” by him as Homer Simpson, I appreciate the application.
After a day and a half of scheduled meals and serving size conversations, I thought we were doing great. Then it was time to head to Dad’s house. I was in my mother’s kitchen and Henry was doing one last lap around the back yard in the winter dusk when I got a call. It was Henry’s dad. Usually he just texts me if his schedule changed. Naturally, I was concerned that he was calling — it must be significant.
He was getting text messages from Henry. I turned and looked out the glass sliding doors and there was Henry, his face lit up by his phone’s screen with the impish grin he gets when he’s working a plan. Here’s the content of the text:
At 8:00 Henry's having a serving size!
He's gonna have a brand new grand prize!
Henry will get some chips and more!
He will have pop tarts…for four!
He's gonna have a great day!
I'll see you later and we're on our way!
Take a moment and read that again just to enjoy before we move into the literary criticism portion of this blog.
Now, let’s go deeper. Three things are stunning about it. First, it’s a fully-formed Dr. Seuss style poem. Spectacular. Second, is the message of the piece. I believe the author is saying: Mom’s serving size/eating plan won’t work for me at Dad’s house. Third, is the action. He’s literally texting behind my back.
When you understand that some of the qualities of autism that we were told to expect were —little to no imagination, little ability to communicate in a meaningful way, and children with autism aren’t manipulative, they have meltdowns instead — you can understand how I feel about this piece. And about this spectacular child, magnificent creative being, wonderfully manipulative schemer, and resourceful communicator — oh, the places he’ll go.
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.
David Letterman announced his retirement in April of 2014. Within a year, Jon Stewart decided to leave The Daily Show. Most families wouldn’t be altered by these events. But we are not most families. We are the incubator for the #AutismTalkShowHost and this not only had an impact on our daily lives—sadness, loss of routine, another of his mentors relegated to YouTube—but it affected our future planning.
In the last two years his teachers have been trying to prepare Henry for High School graduation. Bless them. They do this for every student that attends Access Charter School. The program is vocational focused, so from the time students enter the Middle School program, their academics are about job skills training. And many students are excited about the work they do and the companies that partner with the school.
Henry tolerates the work skills. On every ‘what do you want to do after you graduate’ questionnaire he writes, “Be a talk show host.” And because he actually does have the skills, and an outlet, we’ve factored some of those skills into his IEP. So, we work on things like asking questions and listening skills, but there isn’t a job training program locally for Autism Talk Show Host. There no internship for that.
And yes, he and I have developed a keynote that we do, where he performs a Top Ten List. But that’s not a daily job. He’s going to have to do something. So, the teachers and the family started the campaign. June 2018, you’re graduating from High School. Where do you want to work? What do you like to do? Do you like helping at Habitat for Humanity’s store or do you like prep work at Smokey Bones Restaurant better?
“No. Nothing. No.”
After David Letterman and Jon Stewart mentioned retiring, he changed his answer.
“June 2018. I’m going to retire.”
“Yep. No more school. No more OCA show. Retire. I’ll name my replacement.”
Those bastards. How dare they retire from being talk show hosts? How dare they implant the idea that when your run is done, you just step down. Jerks.
I admit it, I was angry. I’m not really sure why my response was to feel betrayed by two people I don't even know, but I did. I’d worked so hard, pushed him so hard, found the right school, did OT and PT and Speech after school. Sensory Integration Therapy. OCA after school program. Gluten Free baking for the GFCF diet. Special Olympics Bowling, Basketball and Soccer. Energy Work. Hiding krill oil and antioxidants in his yogurt. And this is how he repays me? By retiring before me?!
I let him know that David Letterman was in his sixties and that Jon Stewart was in his 50s and that was the age that people retired, after having WORKED for many years. And that he would not be retiring in June of 2018. Then I plucked a date out of the air, “You may retire in 2075.”
What followed was several weeks of heavy sighs and a new response to ‘How was your day?” “Siggggghhhhhh. 2075.”
And now we’ve arrived at his last year of school. He’s graduating in June. And I’m filling out paperwork and working with government agencies and steeling myself for a new way of life. While Henry seems blissfully unaware that life is going to change.
Until this weekend. We were at Granddad and Mimi’s house about to go swimming. Yes, global warmers, it’s November and the water in Orlando is just fine. When he jumps in he counts to three ala The Count (https://www.sesamestreet.org). And he does a little show related to the counting. This weekend’s show the script went like this:
#1 For counting to swim with Granddad and Alice. And Mimi.
#2 For my job for my disability for my work and my job.
(my dad and I held our breath. Did he just say he has a disability and he’s getting a job?)
#3 For my job. It’s for ideas for my job for working for my disability and for this year!
Did David Letterman’s recent appearance on Jimmy Kimmel’s show help him lock in that life goes on after graduation? Did he read Vanity Fair and find out that both Letterman and Stewart have new shows? Did the message from school finally sink in?
I have no idea what flipped the switch. But here we are only in the first semester of his last year and there was joy and excitement about a job for his disability for his ideas.