Have You Seen Santa?

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It’s that time of year again, and hidden amidst the gazillion catalogs are the holiday cards. I love to get them. I always felt badly about not sending anything in return and envious of mothers who managed to put together the family photo shoot and sign and send. If you’re reading this and wondering why you weren’t on my holiday card list, that’s because there was no list. I just never got it together. The best I could do was an Instagram video of my dog.

Yesterday, I found an old photo that would have made the perfect card. It’s at least twenty-five years old. I didn’t use it then. It’s a good time to use it now. That’s three- year old Ariela sitting on Santa’s lap. The photo was taken at the holiday party at Ariela’s preschool, the early intervention program at UCLA. You can’t see much of Santa’s face, but it’s the same color as his large, dark brown hands. Santa was a UCLA undergrad. I can’t remember his name or what position he played on the Bruins football team. He volunteered at the preschool.

I love this photo, because it reminds me of Ariela’s happy times at UCLA. She especially liked the parties. They were always celebrating something. She loved Santa. All the kids did. He was jolly and fat, but not too fat to have a lap. And he was fun. Every child got a gift. She didn’t care what color his skin was. The colors of her clothes were the only colors that mattered to her. (At the time, pinks and purples were her favorites.) Skin color was irrelevant. Like most preschoolers, she only cared how someone treated her. Were they kind? Patient? Silly? Did they give her presents? I can’t believe any three-year old gives a damn about skin color. Unless, of course, that three-year old is on Twitter.

What you may not realize from the photo is that this Santa is holding her up. Without his caring hands, Ariela would have toppled over. That’s enough to make even this Jewish mother believe in Santa.

Now on YouTube

If you missed me in person, here I am reading at the ‪#‎ListenToYourMother‬ show in San Francisco. http://bit.ly/29HYgaS  Ariela didn’t want me to write about her, but here’s one story she really liked.

The Horse Boy’s Dad

Rupert“Following a child’s interests, going with what motivates them, spending time in nature, and if possible working with animals — these things seem to help all children.” – Rupert Isaacson

Like his bestselling book, The Horse Boy, Rupert Isaacson is intense, inspirational and candid about his courageous journey to help his son with autism.

Motivated by love, faith and desperation, he traveled to Siberia, rode on the backs of reindeers, and sought the healing powers of shamans. The results were life changing for his son and his family.

For me, he represents many parents of children with special needs who would go to the end of the earth to help their children. Nothing is simple when you have a child with special needs, and crazy becomes part of every family’s story.

Rupert is an engaging and generous raconteur. He was visiting SF to promote his new book, The Long Ride Home, and to work with Joell Dunlap of Square Peg, the ranch where my daughter enjoyed many years of therapeutic riding. He took time out to give me much appreciated encouragement and advice.

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

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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.

She and her caregivers met with several doctors and therapists at the clinic. The physical therapist said her legs were stiff and contracted, and her spine was curved and would continue to twist as she grew.

The communications specialist at the clinic saw she had something to say. “See how she raises her eyebrows, when she likes something,” the specialist told the caregivers. “See how she frowns when she doesn’t.” The girl’s head swished left and right.

The specialist showed the girl a computer with an eye-gaze communication system. Cartoon pictures lined up on the screen with a preview of three videos. The girl’s head stopped swishing long enough to gaze at each one. She found a video she didn’t like. The specialist showed her the comments page. The girl found the button she wanted. “It’s boring,” she said with a digitized voice. Then, with her eyes, she found a video she liked and smiled.

It was time for the clinic’s dietician to speak with the caregivers. The girl was crying. She had been listening to people talk about her for over three hours. She was bored and tired of being poked and stretched. I rolled her wheelchair outside to the sunlit courtyard. Her head swished, and her arms flailed. I started to sing to her, just like I used to sing to Ariela when she was a little girl. I sang all the songs I could remember, the songs that made Ariela laugh.

“I Know an Old Lady Who Swallowed a Fly.” When the spider wriggles and jiggles inside her, I tickled the girl’s tummy like I tickled Ariela, The little girl didn’t laugh. “Aaaah, aaah” she moaned. Maybe she didn’t like my voice.

“Yellow Submarine.” The girl continued to cry. I wondered if she knew what a submarine was, or if she didn’t like yellow, or pink.

“I Love You a Bushel and a Peck.” Ariela loved the silliness of that song. But I didn’t hug the girl like I hugged Ariela or give her a peck on the cheek with a loud smacking noise.

I looked at the girl and wondered if she had ever heard, “I love you”? How do you know you’re lovable unless someone tells you? Or hugs you? Or gives you a peck? Or says you are the best, most wonderful child in the whole wide world?

As I sang, the girl’s crying lessened. She looked up at my face, her eyes burrowing into me. Then she stopped crying, and my off-key singing wafted into the courtyard.

More than a Cookie

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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.

While I waited outside Lunardi’s for one scout to show another how to charge my credit card, I asked them, “How’s business?” The mother (There’s always an adult at the cookie table.) said they were doing well.

“I was the cookie chair for years,” I told her. “For my daughter’s troop.”

The mother smiled. “And where is your daughter now?” she asked.

I hesitated.

“She died,” I said.

The mother got up from her stool, came around the cookie table, and gave me a hug.

“I have many fond memories of the Girl Scouts,” I told her.

Cookie chair was a huge headache. I had to call the girls several times to turn in their orders, and to pick up their cookies, and to collect the payments, and to turn in the money. Lots of calls and pick-ups and deliveries and nagging and a house full of cookies and tallies that never added up. I don’t regret a minute of it.

Once a week, Ariela donned her green vest with all the badges and joined a group of girls her age for meetings and hikes and service projects and fun. Ariela was always included and accepted along with all the other girls. Girl Scouts has long been committed to full inclusion and nondiscrimination. How many other organizations deliver on that promise?

Girl Scout cookies aren’t gluten-free, dairy-free, or nut-free. They have lots of calories, sodium and carbs. Buy them anyway. The money goes to help girls develop important life skills and to do good work in our community and beyond. I could tell you they’re yummy, but you know that. No Girl Scouts in your neighborhood? You can buy your cookies online. You’ll want to stock up. When Ariela was in Girl Scouts, we ran out of Samosas. Avoid this tragedy. Get yours while they last.

Rolling Along in Cuba

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Gary handed me a CUC (Cuban Convertible Peso used by tourists) and motioned to the boy on the sidewalk. Candy bars were arrayed on his wheelchair tray table. He could have been fourteen or fifteen. I wondered why he wasn’t in school, and how he managed to get to that spot on the pavement.

I asked our tour guides about children with disabilities. “They go to special schools,” he said. He didn’t need to add “segregated.” I knew what he meant.

Cuba is committed to education for all, but with a strained economy it’s hard to imagine hi-tech equipment in classrooms, especially in the special schools. Until 2008, Cubans were barred from buying their own computers. The latest statistic I could find was from 2011. At that time, there were only 783,000 PCs in the entire country, and 50% of those were government owned. Everyone must share the limited resources. People who need hi-tech speech generating devices, the kind Ariela used to communicate, probably go without.

The boy selling candy bars was a rarity on the street. In my 7 days in Cuba, I saw only two other people in wheelchairs. There are no curb cuts and many of the sidewalks and streets are pockmarked and full of broken pavement.

Because of Ariela, I am forever conscious of stairs and other barriers to people who use chairs. Aside from our Spanish owned hotel with ramps in the middle of the lobby, there were steps everywhere, with no evidence of alternatives, much like the U.S. before the Americans with Disabilities Act became effective. Our Cuban tour guide seemed reluctant to answer my questions, but he finally acknowledged that the reason I saw so few people with physical disabilities on the streets was because they had little means to get out and get around.

In Santiago de Cuba, I saw a man in a wheelchair rolling down a busy street. Without curb cuts it was impossible for him to get up on the sidewalk. I approached the man to ask if he wanted help. Before he could respond, two burly guys emerged from a nearby crowd and waved me off. They had been watching out for him. There would be help when he needed it. That’s when I saw the true nature of the Cuban people.