Wednesday, February 1, 2017

Definitions for Kids

Upon reading this know that I’ve just turned 26. I’m officially in my mid-twenties, an old man. (Don’t laugh!) But I’m writing to my younger self--my silly, creative, bolder self--and I’m remembering how much that person still exists. One of the realities of being a disabled person is the question, “what’s wrong with [insert body part]?” as in, “what’s wrong with your eyes?” or “what’s wrong with your speech?” In my case, it was “what’s wrong with your arm and leg?” I have Hemiplegia Cerebral Palsy. It’s a neuromuscular disorder that keeps the left side of my body from moving voluntarily. Synaptic nerves travel from my brain, but misfire along the way, cutting off signals to my muscles.
And that would be my response, every single time. I would say it as I hung on the monkey bars with one-hand (and totally nail it); I would say it in line for Four Square and Wall Ball, where I would inevitably reign as king of the game. I said it when I turned six, and seven, and eight, but around sixteen they stopped asking. I started to get more looks than questions and though there was less talking to do, I still had to explain how capable I was. I did this by being silly, creative, and bold. By telling killer jokes as I tripped over my left foot, or learning to cut my waffles with a pizza cutter instead of a knife and fork, I became invincible. When I gave someone the definition of Hemiplegia Cerebral Palsy, I was ready.
Here’s a secret, though: I find it easier to just give a medical definition to a six-year-old when they boldly ask than it would be to live without the question at all. This is how I move through life; you may have another way, to which I would say, Yeeehaw! Please email me at… Ultimately, friends, I’m here to encourage you to be your version of silly, creative, and bold. Silliness tells the world you understand your value. Your disability doesn’t keep you from laughing because it offers the same ups and downs as grades, friends, and pizza slices – it’s a part of life, and life is funny. Creativity communicates to the world your higher intelligence. As you adapt to an environment with your disability, be it taking an elevator or striking up a conversation with a stranger, your brain is used a little differently, but always with cool results. Boldness changes as you grow, so there is no one way to be bold, either.
One way to be bold as a young person is to be unafraid to try new things. Once I wanted to rock climb, but I couldn’t do it because the equipment didn’t help me. But notice, I wanted and tried to rock climb, knowing there was a 50% chance it wouldn’t work. Boldness is also not being afraid of your own disability but embracing it as part of you, just like your hair and smelly feet are part of you. You might be thinking, “hey, I can change my hair color and change my socks! I can’t change my disability.” You’re right.
But here’s another secret: you can change how you think about your disability. I used to think my CP was an alien from another world; I didn’t know its language, and it seemed like it didn’t like or listen to me. Now I think of it more as a rambunctious cousin that just needs a PB&J to calm down. That same cousin, though, is the main reason I’m a professional dancer in New York City, working with Heidi Latsky Dance. As I learn to use him, I create really cool art that I never thought was possible. I think my CP and I speak the same language now, but sometimes we still don’t. Changing how you think about your disability opens up opportunities that you can’t imagine.
Back to this scary question of “what’s wrong?” I have rethought why people even ask. I used to think they wanted to hurt or ridicule me. Now, I think they’re curious. I’m so deliciously different from anything they’ve seen that they must know more. I’m an expert with all the answers to the universe (not really).
That’s why I think it’s a good idea to have your answer in mind, friends, to the question, “what’s wrong with [insert here]?” The answer could be a medical definition, or an entire life of rock climbing, laughing with your friends, dancing, or doing good work. Or the answer could also simply be, “nothing.” Each answer would be right.

Jerron Herman is a principal dancer and Company Associate at Heidi Latsky Dance, joining the company in 2011 having never danced before. Since then, Jerron has been featured with the company at venues like Lincoln Center, NYU Skirball, American Dance Festival, and the Whitney Museum. Through press and interviews Jerron was featured in an LA Press Club winning piece by John Bathke, Open Studio with Jared Bowen for PBS, and for his work in the world premiere of HLD's TRIPTYCH, the New York Times called him, "...the inexhaustible Mr. Herman." Jerron came to New York from the Bay Area in 2009 to pursue art and consumes it in varied forms, as a writer, lyricist, dancer, and history buff. 

Sunday, January 1, 2017

Yahaira's Words

I met Carmen, her husband Alex and their daughters in 2012, when I oversaw Space No. 1. That was Extreme Kids & Crew’s first playspace, a comfy room on the first floor of the Coop School, which we repurposed into a creative haven for families who had children with disabilities.  Yahaira was then 4, her older sister, Luz, was 9, and Milagros was a little baby.  Carmen had found us because of Yahaira, who did not communicate with language.  Instead, she announced herself with the brightness of her eyes and the speed of her movements. She was lucky to have an older sister in Luz, who was articulate on her behalf.  Both girls wore their hair in glossy black braids that whipped in graceful arcs when they jumped into the ball pit, or dangled down and brushed the big wooden art table when they sat to draw pictures. I enjoyed talking with their mother, Carmen, but we didn’t have much time as she was busy tending to her daughters, guiding them and giving them tools to play and express themselves.

They lived in East Harlem—a real trek from Space No. 1, which was in Bedford Stuyvesant.  But they made the trip often, and I was always happy to see them.  They were the sort of family that knew exactly what Extreme Kids was about—having fun and celebrating each other, regardless of quirks and oddities.  

When we moved to Red Hook, a more remote neighborhood in Brooklyn, the trip became too difficult for Carmen’s family. I didn’t see them in person anymore, but occasionally their pictures would pop up on my Facebook feed, cheering me.  Not long ago, Carmen posted a note, written in a child’s hand.  It was by Yahaira! She had begun to write.

The day after the presidential elections, I stumbled around Manhattan’s drizzly streets, mulling over how the shift in political power could hurt people with disabilities, people in general, and the earth upon which we all live.  My fellow pedestrians seemed to be in the same somber mood. Indeed, it seemed that we had all been hit with an unsettling medical diagnosis at the same time. When I got home, I checked my Facebook feed and noticed that Carmen had posted a picture of Yahaira. On hearing that Trump had won, Yahaira had spoken. “Hillary doesn’t give up,” she said. “We must never give up.”

“Never give up.”  I couldn’t think of a better message or, for that matter, a better person to deliver it.  I contacted Carmen and asked if I could visit.  I wanted to see the whole family, and I wanted to hear Yahaira’s voice for myself.

So it was that towards the end of November, on a rainy Tuesday afternoon, I took the Number 4 train up to 125th Street and slurped through the puddles to the seventh floor of the highrise apartment building where they live. Carmen greeted me cheerfully and led me into a cozy apartment with paper cutouts of leaves decorating the living-room window.  Her mother and brother were there, watching Spanish-language soap operas, and Yahaira was just home from school.  She had the same glossy braids that I remembered, and her sneakers lit up with different colors every time she stepped. I asked her if she had anything to tell me.  She said “nothing.” I said I’d love to hear what she was up to, and she said, “I’ll tell you after lunch.”

I talked with Carmen as Yahaira spooned her soup at a table by the window.  Yahaira is now nine years old, and Luz, who would soon return from school and show me her charming sketchbook, is 14. On learning that Luz attended Trevor Day School, a competitive independent school on the Upper East Side, I congratulated her mother.  Carmen gently shook her head.  “I didn’t get her in,” she said, smiling.  “She did.”

Yahaira is in a public District 75 program at the Mickey Mantle school on West End Avenue, where she has thrived in an 8:1:1 class. She
Carmen and Yahaira
speaks both in English and Spanish.

I asked Carmen my standard question about disability: how would you define it? Carmen frowned.  “I don’t like the word,” she said, after a while. “You are saying the person can’t do something that someone else can do, but they can.  Just in a different way.  Maybe you have to tweak it, or understand it differently, or slow down.  Maybe you have to be patient.” She told me that she doesn’t usually say Yahaira has disabilities or that Yahaira has autism.  “She has all kinds of abilities.  Her memory is awesome.  We all have things that we struggle with, it’s just that with some people you can tell, and some people you can’t.”

I asked Carmen for a recent wonder.  She told me about her last parent-teacher conference at Yahaira’s school.  The teachers had told her they thought Yahaira was ready to move on.  Every quiz she’d taken, she’d earned a 95 or 100.  The teachers showed Carmen things Yahaira had written, her ideas spilling out on the page, in legible handwriting.  “I was bawling,” she said. She loved the school and didn’t know if she was ready to leave it. But, apparently, Yahaira was.

Yahaira finished her soup and came over holding her iPad, which Carmen had procured through an Autism Speaks program that grants tablets to families with limited incomes.  I asked Yahaira what her favorite apps were.  She turned the camera to herself and showed me what the various filters did to her face: funhouse mirror effects, halo-like radiations, one with bright psychedelic colors that brought out the bones in her face.  “Scary,” I said, because in the picture, she had taken on the appearance of a many-hued skull. Yahaira disagreed: “I’m in the beautiful colors of the rainbow.” Then she demonstrated how to make an image of herself into a movie. She told me she was going to be a director.

I asked her if she had anything she’d like to say to other children, particularly those children like my son, Felix, who have a lively intelligence but do not have language.  She got on her mother’s lap and said, “Time for hugs.” Her answer resonated.  Hugging is one of the chief ways we communicate with Felix.  When he was small enough that I could lift him easily, we’d sneak in hugs throughout the day.  I grew to treasure transferring him from his car seat to his wheelchair, the way that his arms would hook around my shoulders, and his chest press close to mine.  The memory of those hugs brings me courage, as do Yahaira’s words.  I'll be carrying them with me, into 2017.

Thursday, December 1, 2016

My Brother's Keepers

As a gay kid growing up in Upstate New York during the 60s and 70s, I had to hide -- from everyone, including myself. It wasn’t until I came to New York City in the late 80’s that I was finally able to admit I was gay. I was fortunate to have the support of family and friends. In fact, my younger brother Marty is also gay.  Aimee, his twin, is straight. She and Marty, like my mother, both have degrees in special education. Our youngest brother, David, is severely disabled and was born with multiple birth defects. He has always needed us to support and advocate for him, and that has made us stronger.

David’s disabilities and our advocacy on his behalf form the axis around which my family turns. His is the birthday we all worry over; his are the holiday gifts we fuss to create. We make certain he gets many, because it frustrates him to watch other people open things. Then again, he never seems to care much about what’s in the packages; tearing them open is the fun part. And we have always loved watching him go at it with abandon. So we fuss.  

Mom and Dad worked hard to create a positive environment for David. Fussing over him is what the holidays are about. I’ll never not have the holiday spirit while David’s in the world. I can’t talk about caring for him always being a blessing necessarily, because it’s not, given some of the troubles my family has had in creating the kind of environment David needs. But I do know that our advocacy on David’s behalf has fortified us all.   

We were all still kids when David entered his first group home. My parents always encouraged the people working around and for him to grant him some control of his environment.  His toothbrush, his underwear, his bathrobe, his Reeboks, his suave slippers are special to him because they’re his. Either at our family’s home or his group home, they make up his world.

Advocating for David was always second nature to me and my siblings and, in some ways, it still is.  David uses one- or two-word phrases to ask for what he wants. He can’t tell us how he feels, so he usually focuses on simple needs. He might point to the refrigerator and say “Diet Coke” and mean, “Hey, is it okay for me to get a Diet Coke, now?” The caffeine in some drinks makes David upset or anxious, so we usually get the decaffeinated kind so he can have as much as he likes.

As little kids, we always knew how David was going to feel about a situation before he did. We were careful to redirect him when he went through phases where he was terrified of Santa Claus and the Easter Bunny. As kids at the mall, we’d spot the costumed character of the season and turn David toward something else we knew he’d love: a soft-drink stand, or anything related to sports or music.  

Music is a force for good in David’s life. He’s got his own headset, programmed with his favorite tunes that he wears around the house.  He loves Billy Joel, the Carpenters, John Denver, all the “Star Wars” music and Donna Summer (my influence). He loves TV shows with music and lots of action. Sports, too. He loves “Hee-Haw!” and, with modern technology, we’ve been able to get him a great collection of his favorite shows: “The Brady Bunch,” “The Partridge Family,” and all versions of “Star Trek.” The sounds of these shows and songs make David feel safe and cared for, but most importantly, they allow him agency: he can request his favorite things and have some control over his world.

When my parents passed away, David was relocated to a home farther upstate, closer to Aimee. He spends birthdays and holidays at her house with his adoring nieces and nephew. It’s a good life—his family makes certain of that, as do the wonderful folks in the world of special education and housing in New York State.  

“We all have the capability to create our environment so that we feel either safe or satisfied, or just not bored,” Aimee told me on the phone the other day.  “David doesn’t have that capability, that luxury. He needs our help.” Aimee, Marty and I are our brother’s keepers. We keep his environment healthy and whole.  But then, David is our keeper, too. For all the struggles the family has endured, advocating for David has made us closer, wiser, tougher. Wanting David to have the best life possible, the best environment possible, has not only helped us pursue our personal goals, but also made us capable of advocating for our own best worlds, lives, and environments.  

Tuesday, November 1, 2016

Jess and Jeremy on Unseen Disability

Jess looks and acts like a typical, healthy 29-year-old female. She rides her bike nearly 50 miles a week, participates in dragon boat, has a degree in environmental science, volunteers for multiple organizations, takes care of our dog and reads a book a day. Jess is disabled.

When people hear the word “disabled,” they immediately think of someone who can’t walk, or hear, or perform simple tasks on their own. Jess can do all those things and more, but she was diagnosed with cystic fibrosis, and received a double lung transplant over six years ago. 

For the most part, her disability doesn’t prevent her from doing things that she loves to do, though it hinders her in other ways. She wears a pain patch on her arm because without it she would be in constant pain. She takes a pill before every meal to prevent stomach pain, which sometimes happens, anyway. She feels enormous pressure to overcome that pain, to overachieve and satisfy everyone, which leads to stress. Her stress can cause bouts of pancreatitis. It starts in her abdomen and works its way around to her back. The pain is so severe that it usually puts her in the hospital for two to three weeks. 

A lot of people don’t get it. They don’t understand how someone who looks so healthy and acts so “normal” can be disabled. I suspect a lot of people don’t fully grasp what she’s gone through already, and what she goes through every day. They would never suspect the feeding tube in her stomach or the port in her chest. They see her smiling and laughing, but don’t see her take 50 pills a day. They see her running and biking, but don’t see the pain she sometimes experiences after eating something as small as a chocolate bar. 

Our friends don’t get it. They’re puzzled when we go out to dinner and she only eats half her meal. They’re confused by the bruising on her legs. They think she’s clumsy, which isn’t entirely false, but they don’t know that it’s a side effect of her medication. They’re disappointed when we have to cancel plans or leave an event early. They think she’s flaky or not committed, but in truth, she’s often on the couch in agony while everyone else is having fun. 

I admit that I understand where our friends are coming from; sometimes, I don’t get it either. I’m confused when she suddenly needs help with things I’ve seen her do hundreds of times. I’m baffled when we’re sitting on the couch, and she goes from a state of calm to one of pain in a split second. 

Here’s what I do know; Jess is strong. She laughs when I tell her that and asks me what choice she has. She has a point: if she didn’t take all those pills, work out to stay healthy and occupy her mind with work and books, she would not be with us today.

Jess doesn’t like people to know she’s disabled, because the term has such negative connotations. She doesn’t want pity and she doesn’t want people to think she is using her health as an excuse. She wants you to think that she lives just like you.

Cystic fibrosis is called “the invisible illness,” which is fitting. You couldn’t pick a person with cystic fibrosis out of a line-up. I certainly didn’t know it when I first met Jess at a mixer event. We immediately hit it off and talked for over two hours, ignoring everyone else around us. I didn’t even know after our first date: dinner, a movie and a stroll around an outdoor mall. But had I known, it wouldn’t have changed anything. I’m lucky—blessed, really—that she chooses to spend what time she has with me. It’s not always easy, but it’s always worth it. 

I interviewed Jess for Broken and Woken, and to follow are excerpts from the conversation we had. 

How would you define your disability?  If I defined anyone by their disability, that would tell me nothing about their true self.  People often say they aren’t defined by their disease, and I’d have to agree.  I’m a nearly 30-something active volunteer, dragonboat-paddling, jewelry-creating, ice cream-craving dog-mom and loving partner to my fiancĂ©. But between the cracks, you’ll find a chronically ill patient with a limited lifespan.  I’ve had cystic fibrosis since birth and had to have a double lung transplant when I was 23 because the constant lung infections had destroyed them beyond any other treatment.  I am also diabetic and experience daily pain because of my damaged pancreas.  I’ve always searched for normalcy in life, and currently feel as normal a young adult with chronic illness can.

Do you have contact with other patients with the same disability?  When I was waiting for a double lung transplant, the Internet became a wonderful place for me to talk with other individuals with cystic fibrosis. Because two people with CF can spread their infections with each other, it is frowned upon to meet in person. However, I find that the benefits of knowing someone in real life far outweigh the consequences and having normal working lungs helps assuage any fears of cross-infection. I have quite a few close friends that I visit with regularly.  I still have my connections with cystic fibrosis and lung transplant online, but I honestly cherish my real life experiences more.

Do you consider yourself disabled?  According to the government and my insurance companies, I am disabled.  Most days, I do not feel disabled. My life is fairly typical when I am not in the hospital with pancreatitis, a consequence of a lifetime of cystic fibrosis and medications.  I have a loving fiancĂ©, a dog, many friends and hobbies.  Sometimes, as odd as it sounds, I wish I had a career in my field of study. After my transplant, I finished two bachelor’s degrees and even was accepted to graduate school in Raleigh, NC for hydrologic sciences.  Unfortunately, a full-time job could be a deadly future for me.  I would need a full-time job in order to get insurance and the lack of time for medical appointments and the amount of stress I would incur on a daily basis would leave me in the hospital much more often than I am there now. I cannot be self-sufficient, and that is difficult for someone who craves independence.

What would you say to those in your situation?  To other disabled individuals, I would let them know they are not alone in trying to find identity in the term “disabled”. A little bit of denial goes a long way.  Try your best to live as “normal” a life as you can, outside of your illness or abilities. Work, find love, raise a family (or just dogs), discover new hobbies and love those closest to you.

Jeremy Lambert is a freelance writer who enjoys spending time with his fiance, dog, and computer.  When he's not writing, he's probably yelling at the TV during sports.  You can check out his work at

Sunday, October 2, 2016

How Special Sounds

By Danielle Boyce

It's too early to say there's anything wrong with him.
It's just teething.
It's just a growth spurt.
It's probably nothing.
Try to catch it on video.
Sometimes moms get nervous.
Have you been checked for postpartum anxiety?
The price of that drug is so high that we don't offer it here for ethical reasons.
He won't need early intervention.
We didn't properly review the first MRI.
One hundred seizures per day is your new normal.  Unless he has more than that for ten days straight, I don't want to hear about it.
That kind of surgery is not for kids like him.
He is not sick enough for nursing services.
He is too sick for day care.
He doesn't qualify for speech therapy because he can't talk.
I call the spasm seizures "Superman seizures" because their arms go up.  It's a cuter way for my patients' parents to look at it.
I think a three-piece puzzle is an unrealistic goal.
I wish I was that flexible.
Did you know when you were pregnant that something was wrong with him?
I know exactly how you feel.  My dog had seizures.
Will he grow out of it?

Your claim has been rejected.

Your request has been denied.

He is no longer seeing new patients.
Fill out this form.
We need more documentation.
He has been dropped from...
We no longer cover...
If he is hungry enough, he will eat.
How long do you think he will live?
What are those toxic medications doing to his body?
I only feed my child organic.  I hate to even give my child Tylenol.
Did he even notice you were gone?
Why don’t you just leave him at home?
Are you going to put him in a home?
If you have insurance, why do you need a fundraiser?
Did you take any medications during your pregnancy?
Do you think your age when you had him had anything to do with it?
There is a six-year wait for that benefit in this state.
If you fail three medications, the odds of anything working are almost nil.
We don't think he really has autism, but it's the only way to get services.
Can he talk?

Can he walk?

Can he feed himself?

You don't qualify for the study.
We can't watch him by ourselves.
That drug isn't legal in this state.
Just Google a list of approved private schools and visit all of them.
We can always go back in again and take out more of his brain.
Why does he drool so much?

Is he retarded?

Would you like to participate in a study?
Have you gone to Dr. Rockstar?
We no longer accept your insurance.
Please send in diapers and wipes.
Technically, it's a wheelchair.
He looks so normal.
...but we don't have one at this school.
...but we don't have one in this county.
He's doing great...for him.
Are you going to wear purple today?
Are you going to the epilepsy walk?
Do you think it's helping?
Even if we do find a mutation, there's a good chance we won't know what it means.
...but they are not allowed to change diapers.
Most kids with infantile spasms don't do half as well.
You have to be at home to sign for it.
He's too old for...
He's too young for...
The attending will stop by and then we will try to discharge you sometime today or tomorrow.
Too bad you don't live there.
Have you ever read Flowers for Algernon?

Please help.  

Please hold.

You are in my prayers.
You are such a good mother.
He's adorable.
We love him here.
The noise doesn't bother us.
We have some extra clothes that might fit him.
We will keep inviting you.
Just tell us what to do.
I will help you to get into the free diaper program.
Would you like to come over for a play date?
There are plenty of things we haven't tried.
He is my favorite patient.
We are thrilled with his progress.
Isn't he just delightful?
He is so smart.
He is just frustrated because he has trouble communicating.
We would love for you to come tell his story.
You are right.
Don't apologize.
I would be upset, too.
Let me see if we can squeeze you in.
I am so lucky to be his teacher.
He used his words today.
You must be working so hard with him at home.
How are you today, Charlie?
We are learning so much from him.
How is your other child?  Can I help her in any way?
You inspired me to hold a fundraiser.
I am proud to be related to him.
I shared your blog post.
Look how far he's come!
Great job, Mom!
He is perfect just the way he is.
I've been a neurologist long enough to know that I don't know everything.
We will cross that bridge when we come to it.
You can do this.
There's no shame in asking for help.
Scientists are making breakthroughs every day.
Your quality of life matters, too.
Let me ask my colleague what she thinks.
I know another parent who would love to talk to you.
I am so impressed with how you have handled all of this.
I will never look at kids with disabilities the same way again.
Hold on just a little while longer.
I am so sorry you are going through this.
I will sit right here and answer all of your questions.
We know you love Starbucks so we got you a gift card.
We will watch him so you can get your hair done.
You can work from home.
You can join us by phone.
I've been reading up on epilepsy.
I will run to the drug store and pick up his prescriptions.
We will send dinner to the hospital.
You're doing everything right.
This isn't your fault.
You could not have prevented this.
Let me change his diaper.
Would you like to talk to the social worker?
That doesn't sound right. Let me try to fix it.
I will schedule that for you.

You qualify.

You are eligible.

Let me take them for a few hours so you can have time alone.
My mom asks about him all the time.
I'll come to you.
He did great today.
He is such a funny kid.
Both of your children always look so nice.
Your request has been approved.
Let's have a girls' night at your place!
The case worker can handle that for you.
I have seen much messier homes.
Thank you for your help.

You're the expert.

He's your child.

Danielle Boyce is an award-winning advocate, clinical researcher, public speaker, and writer.  Her work has been published in dozens of scientific journals.  Her special needs-themed children’s book, Charlie’s Teacher, is used in children’s hospitals throughout the country.  Danielle’s blog, follows her journey as a mother of  a son who had infantile spasms and two brain surgeries. She is the founder of Neurology Parent Professionals, a networking group for researchers, clinicians, and nonprofit executives who have children with neurological conditions.  Danielle holds a Masters in Public Health with a concentration in epidemiology.  She is the 2015 winner of the Child Neurology Foundation Hope award and the 2015 recipient of the Lundbeck Your Partner in Epilepsy award.  She has served on the Board of Directors of the Lennox-Gastaut Syndrome Foundation, is a caregiver liaison for CURE’s Core for Precision Medicine, and is a member of the Steering Committee for the Rare Epilepsy Network.  She serves on numerous caregiver advisory boards for prominent researchers and is an FDA patient representative for pediatric epilepsy.  Danielle is the Director of Translational Research at The Brain Recovery Project and has worked as a Senior Research Data Analyst for Johns Hopkins School of Medicine since 2007.  She lives in suburban Philadelphia with her two children, Ryan and Charlie.

Thursday, September 1, 2016

The Challenge Bed

by Kevin Kinsella

One of my daughter's therapists told me
she was glad her work was challenging.
Because if it wasn't challenging,
she would likely be bored and unhappy.
So when I told her that I felt otherwise,
that I would rather that she be bored
and if not unhappy then less happy
and certainly less challenged
than she seemed to be with my daughter,
she disagreed vigorously, insisting
life is too short to avoid the tough stuff,
that she liked going home to her husband
and telling him about the challenges of her day,
Because who wants to hear about how easy it was?
And that was one of the things he loved about her,
that she liked to be challenged so much,
that she never shrunk away from a challenge,
never took the easy way out and, believe me,
he is quite a challenge himself.
But she wouldn't have it any other way,
because It's not about where you want to go
it's about the bus you take there. You know?
Then I imagined how wonderful their life must be – 
the two of them slipping into bed together:
He turning to her, whispering, How was your day?
She, welcoming his challenging yet tender embrace,
Terrific, I met a little girl who can't walk.

photo by Micaela Walker

Kevin Kinsella is a freelance writer and poet. His work has appeared in/on The Believer Magazine, Bomb Magazine, Tarpaulin Sky Magazine, Pif Magazine, and 2River View," among others. He is the translator (from Russian) of Sasha Chernyi's "Poems from Children's Island" (Lightful Press) and Osip Mandelstam's "Tristia" (Green Integer Books).

Micaela Walker is a photographer and freelance photo editor who has worked for Cosmopolitan, Seventeen, Allure, Lucky, Black Ink, Departures, Food + Wine, The Women’s Refugee Commission, Nomad-Chic, and the Go Vap Orphanage in Vietnam.  Her blog is roan and lula.  She serves on the board at Extreme Kids & Crew. 

Monday, August 1, 2016

Sunday, Early Summer

5:30 am.  I hear a familiar squeaking hinge and heavy uneven footfall.  Martin's up.  I wait for him to show up in our bedroom doorway, knowing that even if he doesn't appear, I'll have to get up and figure out what he is doing.

5:45 am. Back in bed. Maybe Martin will go back to sleep. Probably not. He was sitting on the toilet when I got up to look for him, but he didn’t have to go and seemed disoriented but fully awake. I told him to “rest” in his room “for a while.” Maybe he’ll play with his wooden trains. It’s happened before.

6:28 am. Thudding steps in the hallway. I’m up. “It’s not time to get up yet,” I try, guiding him back to his room. I stumble back to bed, glowering now. How does Jeff sleep through this, I think, not for the first time, as I nod off again.

7:15 am. Squeak. Thud. THUD. OK, enough. Martin is standing in the doorway. “Shower,” he says. I guess I’m up. “OK. Shower,” I say. I stretch out on my back and squeeze my eyes shut. I will savor every moment in this bed while I can. I hear the shower turn on. He’ll relish the hot water and steam for at least five minutes, I think, pulling the sheet up under my chin. After that, who knows? He’s been known to splash water all over the ceiling and walls or to squeeze gobs of shampoo and conditioner on the tiles, making a slippery, hazardous mess for the next person who stumbles in there not fully awake. Like his brother, who I am now picturing unconscious on the bathroom floor, having slipped on an invisible slick of Pantene. Shit. I’m up.

7:30 am. “OK, Martin, turn off the water,” I say. I am holding open his big red bath sheet, just like I always do. He complies, and I wait a moment before opening the shower door, watching him as he stands quietly in the warm fog. Then I open the door. He starts to script something under his breath as I tousle his wet head and wrap him in the towel. I can’t quite make out the words, but the volume gradually increases until the last syllable, which he shouts. Loudly.

“Martin!” I scold, but before I have a chance to give him a directive, he is mumbling something again. Something very similar, getting louder and louder and then, he screams. A sustained, ear-splitting shriek.

“Quiet voice, Martin,” I say sharply, “Keep your voice—” [Scream] “Martin, you must stop.” I usher him as quickly as I can out of the bathroom, through the bedroom [Scream], down the hall, and into his room. “Martin,” I say, trying to get his attention, “Martin, look at me.” I point to my nose to direct his attention to my face. Usually he points to his own nose, gives me a fleeting glance, listens. Now he looks past me, continuing the tape loop, something about Mater and the Ghost Light, then [Scream].

“No YouTube!” I announce, playing the only card in my deck, the one incentive that has always worked. The promise of YouTube motivates Martin to comply with almost any request, even hours in advance. He pauses. “YouTube!” he demands. “Yes,” I reply, “First no screaming. Then You—” [Scream]. “Martin!” He does not register what I’m saying. His whole body is caught in the loop of a script he seems compelled to repeat. He turns slightly away, steps forward, nods, mumbles about Mater and the Ghost Light. [Scream]. This time he holds the shriek, his whole face going red and taut with the effort. 

I grasp for a behavior strategy. In the 10 years since Martin’s autism diagnosis, the primary support we’ve received has been from behavioral specialists and special educators. No one can tell us why Martin stims and scripts, why he cannot tell us how he feels, why he can never explain why. We use visual schedules and positive reinforcement and simple directives to motivate him without ever fully understanding what he is thinking. “Martin,” I say, “Try to scream in a whisper.” I model this for him, then say, “You try.” He does. He tries it. I am praising him when [Scream]. “You must stop,” I say. “Mommy is sad,” I say. “You have lost YouTube,” I say. “YouTube!” he pleads [Scream].

8:45 am. We are in the kitchen. Martin has screamed through breakfast. He is pacing and mumbling and shrieking. Jeff and the older kids must be awake. Are they hiding? I can figure this out. I must figure this out. Martin is not responding to my stern voice. I am pleading now. He stares out, repeating his mumbled phrase, punctuating it with shriek after shriek. It looks like a compulsion, but is it? What does a seizure look like? What if he’s been having seizures for years? What doctor should I call?

9:15 am. Redirection. I try setting him up with MarioKart on the Wii. He is playing and mumbling and talking about Mater and screaming. I expect his voice can be heard outside. In a week we are leaving for our annual vacation, where we stay in an old cottage nestled among others near Lake Michigan [Scream]. We already get the side-eye from the cottagers there. I imagine someone hearing what I am hearing and calling the police to report child abuse. What if we can’t go to the lake anymore? Never mind that. What about today, tomorrow, every day? I can’t take him in public like this. What if he can’t go to school in the fall?

10:00 am. I am sitting in the dining room staring at the pieces of a puzzle I spread out on the table in an effort to distract myself. Martin is shrieking like clockwork in the kitchen, having abandoned the calculator and math homework page I offered in a last-ditch attempt at redirection. I hear Jeff on the stairs. He is calm. This makes me unaccountably angry. I want to talk to him, to figure this out with him, but by now Martin’s shrieks feel like blows. I can’t think straight. I keep getting up, yelling at Martin, telling him he must stop, there’s no more YouTube for you, stop, stop, STOP. Jeff quietly suggests that we should ignore the screams altogether. The more we call attention to them, he says, the harder it will be for Martin to stop fixating on the script. Jeff is right, but my ego is bruised. And I’m still mad. I pout over my puzzle pieces [Scream] and imagine that this is my life now. Martin walks into the room. “YouTube?” he asks, desperate. Then he mumbles. Then he screams. “Go away from Mommy,” I say. “Go talk to Dad.” He doesn’t want to walk away. He needs me to reassure him about YouTube [Scream]. I do not do this.

10:30 am. Jeff thinks I should get out of the house. “You need a break from this,” he says, “I’ll take over for a while.” Martin has moved into the living room. He is playing the Wii again, screaming every few minutes. Jeff and I talk in the kitchen, but all I can hear are the shrieks. I’m starting to brace for them now. Jeff does not look worried. He looks ready to spell me—this has been our approach to parenting Martin since his diagnosis. We have been spelling each other through every stage, taking turns immersing ourselves in Martin’s obsessive behaviors, monitoring him in public places, negotiating his outbursts and silences, treating the world to what we like to call Autism Performance Art. [Scream].

10:45 am. It helps to talk to Jeff. I focus on our conversation, willing myself to stay calm, puzzle this thing out with him. Then I hear Martin. “That’s better,” he says, “try marching.” We find him stomping across the living room floor; instead of screaming, he punctuates his script by slamming his feet against the rug with all the force he can muster. “That’s it,” he says, “Works every time!” He stomps again, and this time a picture frame slides off a side table. I eye the TV we recently mounted on the wall and wonder. Then I praise Martin. “What a good idea,” I say, “but marching might break something. Let’s try something else.” He moves to the recliner nearby, sits, mumbles his script. Then he slams his forearms against the upholstered arms of the chair, hard, over and over until the urge passes. “Whew,” he says, “That’s it.”

By the time I leave for the grocery store, Martin is quiet, only periodically slamming his arms against the pillows we’ve wedged between him and the chair. I am still worried. I think Jeff and I are anxious people who have passed on our broken brains, in one way or another, to each of our children. I think I am uniquely ill-suited for this job. I think it’s my fault. My thoughts are a persistent looping tangle. But at the same time, I wonder whether, even as he screamed, Martin listened to us talking in the kitchen, whether he, too, was puzzling things out, finding his own way around this new compulsion.

11:10 am. Sitting at a red light. I tell myself to focus on the positive. Maybe Martin understood our frustration. Maybe he was frustrated, too. At any rate he figured out a way to stop screaming on his own. I’m certain this won’t be the last episode, though. Will he be screaming when I get home? As encouraging as it is to know he can self-regulate, it would be better to understand why he started screaming in the first place. Why is the question I want an answer to—not just why is he suddenly unable to stop screaming? but why does his brain work the way it does? I think that if I could just understand why, if I could just understand, everything would be OK.

Inhale. Exhale. I will not understand this today or tomorrow or any time soon. I think about my grocery list and how I really should write it down and stop relying on my memory to fill the cart every week. I think about what I will make for dinner. I wonder whether Martin will try salmon again. The morning fades and I think, Jeff is there with Martin. I can worry over screaming and behavior strategies and worst-case scenarios later. I hear honking behind me. The light is green. I drive on.  

Nancy Quick Langer was born and raised in Pittsburgh, and except for the two years she spent in graduate school in Boston, the farthest she has traveled from home is through the Ft. Pitt tunnels to the suburbs south of Pittsburgh.  She is a writer and works as an English writing teacher at Duquesne University and Carlow University. She and her husband Jeff have been married for 23 years and have three children: Bea, Henry, and Martin. Nancy recently published a series of essays about Martin’s Bar Mitzvah journey in her blog not a man of words.