PICU

2002

This story was published recently in The Big Roundtable. Ariela had many hospital stays. The time in Pediatric Intensive Care was the longest and the most difficult.

I’m taking this opportunity to raise awareness for Rett Syndrome.  RS was Ariela’s underlying diagnosis, though we didn’t know that at the time of this story. About 80% of girls with RS have scoliosis (curvature of the spine). Like Ariela, many of them need the spinal surgery I describe in this story.

Please join me in finding a cure.  Scroll down to the end of the story to make a donation to the International Rett Syndrome Foundation (IRSF). All contributions, including The Big Roundtable’s commission, will be donated to IRSF. Thank you. http://bit.ly/1K6nqcm

3 Lessons from Pre-K

iguanaI read a story in Huffington Post last week about teaching kindness in kindergarten. Who could argue with that? Comments came in with praise for the program.

The story brought back memories of my daughter’s pre-K class. We had just moved to a small town in Massachusetts. It was late in the school year when I rolled Ariela into class. The teacher must have told the children that Ariela could neither walk nor talk, but that she could hear and understand everything they said. I saw the children at pick-up and drop-off and the few times I volunteered in the class. Many of them wanted to help. They brought her the crayons and gave her a turn at petting the class iguana. They understood that she needed extra time to do just about anything. Lesson #1: Patience.

The more the kids got to know Ariela, the easier it was to be friends. The talkative ones did all the talking and the quiet ones moved the puzzle pieces and sat next to her during story time. Ariela had all the qualifications of a good friend. She was a good listener, never complained, let you chose the games, and could be trusted to keep a secret. She would never abandon you. One little boy made a ceramic dragon for Ariela in art class. Lesson #2: Thoughtfulness.

Ariela had a one-on-one classroom aide. There were at least three during Ariela’s year and a half in pre-K and eight in the three years we lived in that small town. Some of Ariela’s aides were better than others. I’m not sure how well the aides modeled kindness. One of her aides was arrested for disturbing the peace. Another wouldn’t take Ariela outside for recess, because it was too much trouble to put on her parka and hat and boots and mittens.

Those aides could have used a lesson in kindness. They had only to look to some of the children for guides.

At the end of the school year, Ariela’s pre-K class joined a class from another school for playground activities. A boy from the other school stared at Ariela. He tilted his head and watched from a distance. He probably had never seen a child in a wheelchair before. “How can you be friends with her?” he asked a girl in Ariela’s class. “She can’t even say hello.”

Ariela’s classmate became visibly irritated with the boy. “She can too say ‘hello.’ She says ‘hello’ with her eyes.” Lesson #3: Acceptance.

Ariela’s Friends and Mine

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Ariela’s friends come to see me. I like to think they are my friends, too. But first they were friends with Ariela. They started as her aides, hired for the job. But it was never just a job, and they knew that from the start. In the past week, four of her friends came by, and two sent me emails.

I went to dinner with Kim. We came back to my house and my closet. Kim is my fashionista buddy and was Ariela’s before she was mine. She went through my sweaters and told me I needed to get a few new things for my trip to New York.

“These are fall colors. You need spring,” she said. “We’ll go shopping.”

That’s good, because I hate shopping by myself. I see a top or a dress and think, “Oh, that would look so cute on Ariela.” Then, I remember.

I used to love buying clothes for Ariela, though she rarely liked what I selected. She loved shopping for herself. I was never sure if she didn’t like my taste, or she just wanted to have some control over her life, or maybe she wanted to tell me she could buy her clothes without me.

I think clothes are all about communication. Ariela liked to make a statement with her outfits. So, it figures that she would want to pick out her own wardrobe. She went in for plaids and stripes and bright colors. I suspect she would have been more flamboyant in her dress if she could have found more things to fit. She wore a size 7 girls. It’s not easy to find trendy clothes in that size. I had a few things tailored for her. But most of the time, shopped in the children’s department and avoided anything that said, “juvenile.” She shopped with friends, like Kim, who knew what was cool and would buy things they liked. She liked Abercrombie’s and Forever 21 and the GAP.

So, now I shop with Kim, because she knows what’s in fashion. And like all of Ariela’s friends, she connects me with all things young, and hip, and springtime, and Ariela.

Saying What She Wanted

Ariela.Dynavox

The Huffington Post recently ran this blog post: “Man With ALS Tells His Wife ‘I Love You’ Out Loud For First Time In 15 Years.”

I thought, how sweet. His first words were his expression of love for his wife (and primary caregiver). I had hoped for similar sentiments from Ariela. Maybe she would say something like, “I love you, mom.”

She was around twenty, when she received a new communication device, a system that came with hundreds of short phrases, as well as an alphabet with word prediction software. She needed to select the first few letters and a choice of words would appear on the computer screen. A small speaker by her ear gave her the cues, and at that time, she used a switch on her forehead to choose the word she wanted. She was quick to use the phrases, experimented with the alphabet, but had yet to spell a word.

Not long after getting the device, some of her friends came for dinner. One friend brought a boyfriend, a good-looking guy with a goatee. He sat down across the table from Ariela and smiled at her.

Ariela looked directly at him and said with her synthesized voice, “K” and “I” and then “Kiss.”

Now for all of you who participated in the Ice Bucket Challenge:  Like Ariela, people with ALS rely heavily on assistive technology to communicate.  Ariela was fortunate to have had private insurance pay for her communication device, commonly called Speech Generating Devices (SGDs). The man with ALS might have had coverage for his SGD through Medicare and/or Medicaid. However, changes in the last year are threatening this coverage. You can help. Contact your U.S. representative and ask for support for H.R. 628. Here are the details.

Not Your Typical Artist

hoopoeThis story was published today in Huffington Post.

The ad in Craigslist read “Not Your Typical Attendant Position.” I was trying to be clever, to stand out from the other ads that read “Wanted – Personal Care Attendant.”

The attendant was for my daughter, Ariela. “I’m an active twenty-three year old woman looking for a fun-loving, bright, energetic, and reliable person to assist me. I’m quadriplegic and nonverbal. I use a communication device to speak.”

I waited for the initial phone interview to explain her other medical issues — epilepsy, restricted airways, a feeding tube. “She has a tremor,” I told applicants. “Her head bobs. Her legs shake, and her arms wave in a rhythmic motion, like she’s following a Latin beat. She has no use of her hands.”

I’d tell them all that, and then I’d ask if they were scared. Sometimes I’d explain how she got that way: Rett Syndrome, a genetic disorder primarily affecting females. I refrained from singing “How Lucky to be a Woman,” until they knew me better.

“You will accompany me to City College and to Crissy Field, where I’m a volunteer trail docent,” the ad read.

I cautioned candidates not to treat her like a baby. “She may look like a little kid, but she’ll hate you if you treat her like one. She’s trapped in a body that doesn’t work. Inside, she’s just like you.” I said this to the millennials who applied. We rarely hired anyone who wasn’t a millennial. Ariela wanted to be with her peers.

 

Ariela conducted the in-person interviews. She listened for cues from a small speaker placed near her ear. When she heard the word she wanted, she hit a chin switch to activate her computer and speak with her synthesized voice.

She needed a team of four or five, each covering different shifts. When one would move on, usually for graduate school, she’d hire another. She made the hiring decisions.

I looked for people who wanted a future in medicine or therapy. Ariela had her own criteria. Over time, she hired a professional hair and make-up stylist, a fashion consultant, and a bartender.

A few years ago, a young woman with a Masters of Fine Arts answered the ad. “Why would someone with an MFA want this job?” I asked.

“The time I spent as a caregiver influenced my artwork,” she said.

That seemed a bit artsy to me, but she had a cheery voice and personal care experience.

Ariela sat at our kitchen table and fired out questions in fast succession. “What are your favorite sports? What books do you like to read?”

Amy sat across from Ariela. “I enjoy swimming, and I read books about art and artists.”

“That’s cool,” Ariela said.

Amy was a cute blonde with cherry red lipstick. She smiled a lot. She looked to Ariela for the next question.

“What do you like to do for fun?” Ariela asked.

“I’m an artist. Maybe you and I could work on an art project together.”

“Well, let me say a few words here,” I interrupted, and Ariela was not pleased. I could tell she liked Amy. I had a good feeling about her, too. But, she just walked in. What could she possibly know about Ariela?

“Ariela likes going to museums and galleries,” I told her. “But forget about creating art. Believe me, we’ve tried. I’ve strapped a brush and those fat magic markers to her hands and then guided with hand-over-hand assistance. She doesn’t like people grabbing her hand and pushing it around. She just closes her eyes or stares up at the ceiling. It’s just too frustrating.”

“OK.” Amy would never contradict me, even after Ariela hired her. If Amy was skeptical, she never let on.

Amy worked evenings and weekends. She took Ariela to movies and concerts and shopping malls and art museums.

Then, one day when Amy had been working with Ariela for several months, I came home and saw two paintings drying on my kitchen table. It was hard to hide my amazement. Amy and Ariela passed collusive glances back and forth, both of them grinning.

Bold, bright colors exploded in broad strokes on the canvas panels. The images were ill-defined, but there was intensity and intention in the brushstrokes. Ariela’s tremors were evident. The acrylics were in motion.

“We had a great time,” Amy said. “Ariela really got into it.”

Paint splatters covered the arms of her wheelchair and Ariela’s sweatpants.

“How did she hold the brush?” I wasn’t sure what I was seeing.

“She didn’t,” Amy said. “I strapped the brush on her forearm and held the canvas close enough for her to reach. She needed a little support at her elbow. Not much. She did the rest. She picked all of the colors and told me where she wanted to place her brush.”

I picked up the first painting and held it in front of Ariela. “It’s really beautiful,” I said. Her excitement caused her arms to take a wilder sweeping motion. I could see she was pleased.

Ariela began painting with Amy several times a week. She started with still lifes, then landscapes, then animals, especially birds.

She didn’t want to sell her paintings. She donated one for a charity fundraiser. It sold for several hundred dollars.

Before she died, one of her watercolors was selected for a juried show. I pushed Ariela at the opening. We stopped for a while in front of her painting, a bird in flight, wings spread wide, fluttering in space. We liked its placement at the front of the gallery. I could imagine the bird flying off the paper and out the front door.

The art director greeted us and asked me if I was the artist. I looked down at Ariela, her arms bent, waving. I thought about how she had found her own way to express herself, how she had gone beyond the limits of my imagination.

“No,” I said. “She’s the artist.”

 

 

A Question for Stephen Hawking

I just saw The Theory of Everything. I put off going, afraid to see things I didn’t want to see. And, yes there were scenes that felt similar to experiences with Ariela – the regression, the first wheelchair, the choking, the loss of speech. Then, Gary reminded me about the time Ariela met Stephen Hawking.

November, 1998: Thousands came to hear Hawking speak in San Jose. Preceding his lecture, he asked to meet with a much smaller group of students who used assistive technology for communication. Ariela’s teachers had briefed her on Stephen Hawking. She was excited to meet the celebrity scientist. We arrived early. Doormen at the Fairmont Hotel greeted her at the door. We rolled her down a long corridor with flocked wallpaper and crystal chandeliers. The pomp and grandeur of the place wasn’t wasted on Ariela. Dressed in a new outfit and patent leather Mary Janes, she felt like she was a celebrity, too. Questions for the professor had to be submitted in advance, and her question had been selected.

There must have been about one hundred students of all ages in the conference room that afternoon. Ariela was one of the youngest. When her name was called, Hawking rolled toward her. I had pre-programmed Ariela’s communication device with her question. All she had to do was hit her switch with her chin. She paused. I hoped she wouldn’t take too long. We all waited. Then, she hit her switch, and with her synthesized voice she asked, “When you were in the fifth grade, what was your favorite subject?”

It took Professor Hawking a few moments to respond. He had a small communication device mounted on his chair. It looked like he used one finger to scan through what must have been thousands of letters, words and phrases and another finger to select. “How old are you in the fifth grade in the U.S.? We have a different system in England.”

I suppose I was a bit awestruck by the man and the event. Forgetting that Ariela had a button on her device to say her age herself, I jumped in and answered for her. “She’s ten.” To this, Professor Hawking answered, “Science. That was my favorite.”

The movie is beautifully executed. His story is told without sentimentality. It portrays the man as the very real person he is – exceptional and flawed, as we all are.

“We are all different, but we share the same human spirit. Perhaps it’s human nature that we adapt and survive.” Stephen Hawking July 18, 2013.

Grief and Me

It Allowed the Seas....

It Allowed the Seas….                            Ariela

Last Sunday, The NY Times ran the article “Getting Grief Right.” The title is curious — as if there is a right and wrong way to grieve. There are so few spaces to talk about grief, and our immediate response is to fill that space with something uplifting. Sometimes in the ever-current quest for happiness (Are they playing the “Happy” song again?), we forget that grief is a part of being human. Here’s the comment I posted in the Times.

I don’t know how grief can be delineated in stages or chapters. For me it is amorphous, with many deep and mixed emotions. I go back and forth and around with grief and guilt and relief and anger and despair and longing and love.

My daughter had a rare condition that left her a quadriplegic and non-verbal. She also had a severe seizure disorder. She required care 24/7. I’ve been grieving almost all of her life, ever since I learned she would never live normally. In spite of her disabilities and medical issues, she lived 26 years, far longer and fuller than many experts predicted. Her many accomplishments and strong will made her an inspiration to many. But, I am not consoled by her wonderful life.

Since her death last year, I have donated time and resources to charitable causes in her name. I have travelled and read books and gone to movies that I never had time for before her death. All distractions. Nothing fills the gaping hole in my chest.

We all grieve in our own ways. Judging from the number of people who have responded to Dr. O’Malley’s article and the intensity of their responses, we have a lot to say about a subject many people don’t want to talk about.