5 Truths from The Curious Incident of the Dog in the Night-time

 

1423x593_showpg_CURIOUSlogo.jpg Gary and I saw The Curious Incident of the Dog in the Night-time in New York two years ago. Now, this Tony awarding winning play is here in San Francisco. Go see it. You may see me in the audience. It’s worth seeing again. It’s that good.

During the first act, I shifted nervously in my seat. The play had scenes that were painfully familiar. The end of the first act was very disturbing for us. I’ll say no more so not to spoil it for you. At intermission, I looked at Gary. “Should we leave now?”We decided to stay. A lot can happen in the second act.

There were a lot of truths in the portrayal of Christopher, a teenage boy with autistic behaviors who tries to solve a murder mystery. Although my daughter, Ariela, did not have autism, we had a lot in common with the family in the play. Without giving too much away, here are just a few of the play’s insights.

  1. Teachers.One teacher can change a life. Christopher had one gifted teacher who encouraged his talents. Ariela had many teachers who misunderstood her, dismissed her or neglected her. In all of her years of school,  I can count on one hand the teachers who supported her, believed in her, and nourished her. They were the ones who wouldn’t stop until they could find a way for her to learn.
  2. Animals.Sometimes it’s easier to connect with a pet than with another person. Christopher had a pet mouse. Ariela connected with horses. Two therapeutic riding programs in our area wouldn’t take her. “She’s too medically fragile,” they said. But Joell Dunlap (another great teacher/trainer) at Square Peg Foundation accepted Ariela without condition. The horses came to know Ariela’s unique body. They gave her comfort, and she loved them for it.
  3. Fighting. Parents of children with disabilities have a lot to fight about. When there are no roadmaps, there are no right answers. Like Christopher’s parents, some of our biggest fights were about who did what and how much for our daughter. Those were hurtful battles. It took us years to begin to acknowledge that we both did the best we could do.
  4. Motivation.With great difficulty, Christopher navigated trains and subways. He desperately wanted to find his mother. Ariela had just started to use a new communication device, a complicated system that required patience and practice. She wanted to speak for herself, to be her own advocate. When her doctor told her she needed surgery, she used her communication device. “I’m afraid,” she said, looking up at the doctor. She wanted him to know that.
  5. Controls.We all have our own ways to control the overwhelming stimuli in our environment. Some meditate, some medicate, some move to the country. Ariela closed her eyes and put her head down. Christopher turned to mathematics. I believe the last time I studied the Pythagorean Theorem was in the ninth grade. In The Curious Incident of the Dog in the Night-time, I saw its beauty through Christopher’s eyes. If I had seen this play in the ninth grade, I might have become a mathematician.

There’s a lot more packed into this two-hour production, but I don’t want to spoil it for you. Go see it for yourself, and don’t leave at intermission. It gets better. After you’ve seen it, tell me what you think.

Beach Tires

crissy fieldI’m very excited to see my story, “Beach Tires”, in Hippocampus Magazine. Ariela was very proud to be a trail docent in Golden Gate National Park. The photo in Hippocampus shows her trail at Crissy Field. Ariela’s painting on my website banner is a view from her trail.
http://www.hippocampusmagazine.com/…/beach-tires-by-harrie…/

Abandoned

patio

The five-year old girl sat waiting in her wheelchair. When she tried to speak, all she could say was a mournful “aaah.” She was scrubbed clean. Her pink leggings matched a pink t-shirt matched her pink sneakers and pink socks. Her tight black curls were cut close for easy care. Her head swished back and forth as if she was scanning the room with her deep brown eyes.

Abandoned by her birth mother. Abandoned by her foster parents. She was denied placement in kindergarten, because her constant crying disturbed the other children. No one knew if she had ever received any therapy. Continue reading

More than a Cookie

IMG_1628 (1)

It’s Girl Scout cookie time. I bought a couple of boxes a few days ago. The Scouts were in a prime spot, outside Lunardi’s Supermarket. Location is everything. I remember standing in front of Safeway with Ariela and her troop. She used her communication device to call out to customers, “Girl scouts cookies. Would you like to buy some Girl Scout cookies?” Her digitized voice sounded like a girl’s version of Stephen Hawking. People stopped. Then another member of her troop would swoop in to close the sale. Continue reading

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.

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.