Not Always Happy

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Not Always Happy by Kari Wagner-Peck is not about raising a child with Down syndrome. It’s not about raising a child with a disability. It’s not about raising an adopted child. Not Always Happy is about doing whatever it takes to nurture a child and to help that child grow and flourish and thrive. All children should be so lucky to have Kari and Ward for parents. Hey, they can be my parents. Continue reading

I’m Doing This for Her

election-day

I’ve never volunteered in an election before. OK, I admit, maybe for Eugene McCarthy. Remember him?

This election is too important to sit back and do nothing. I want a future in which everyone’s rights are protected. That includes women and children and people of color, the LGBT community, immigrants, workers, students, and people with disabilities. Continue reading

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.

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

curiousOn Sunday night, Broadway will hand out Tony Awards. The Curious Incident of the Dog in the Night-time is nominated for best play. Gary and I saw it on our recent visit to New York. During the first act, I shifted nervously in my seat. The play had scenes that were painfully familiar. 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. 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 be her own advocate. When her doctor told her she needed surgery, she used her device to tell him she was afraid. Then, when she was in pre-op with the IV inserted in her arm, she looked up at her surgeon. “This isn’t going to be easy,” she said with her synthesized voice. She wanted him to know that.
  2. Teachers.One teacher can change a life. Christopher was fortunate to have one gifted teacher in his corner. Ariela had many teachers who misunderstood her, dismissed her or neglected her. In all of her years of school, from pre-K through grade 12, 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.
  3. Animals.Sometimes it’s easier to connect with a pet than with another person. Christopher had a pet mouse. Ariela connected with horses. She loved to ride. Two therapeutic riding programs in our area wouldn’t take her. “She’s too medically fragile,” they said. But Joell Dunlap at Square Peg Foundation accepted Ariela without condition.
  4. 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.
  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.

There’s a lot more packed into this two-hour production, but I don’t want to spoil it for you. I just read that The Curious Incident of the Dog in the Night-time will be on tour next year. I hope it comes to a theater near you. Go see it for yourself, and don’t leave at intermission. It gets better.

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.