Monthly Archives: August 2017

Sometimes best advocates for those with special needs are the individuals themselves.

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During our recent stay in Colorado, my husband Larry and I hiked to Adam’s Falls in Rocky Mountain National Park. As we were finishing our walk, we saw a group of young adults with intellectual disabilities hiking up the trail. We learned later that they were on a field trip with Adam’s Camp, part of a non-profit organization which offers intensive therapy, family support, and recreation in a camp environment for children and youth with special needs.

Seeing the group brought me much joy. On that beautiful afternoon in Colorado, the campers were happy, glowing, involved. Less than fifty years ago, they would have had a good chance of being marginalized at best, institutionalized at worst. Claudia “Clyde” Lewis’ sister Andrea Gregg almost suffered that fate.

Clyde’s parents met in high school, and Clyde was born soon after graduation. Her father, Robert Pinard, went into the Navy and would never meet her until she was nineteen years old.

Her mother Iola married Arthur Gregg when Clyde  was ten years old. Andrea was born two years later. Clyde, her mother, and step-father were delighted with the newest member of their New Hampshire family.

When Andrea was about six months old, the pediatrician recommended that Iola take Andrea to the Dartmouth Medical Center, citing ‘respiratory problems’ as the reason for the evaluation.  “My mother recalled Andrea getting a great deal of attention,” said Clyde. “She thought it was because there was only one other baby on the medical center’s floor.”

Then the doctors gave Iola the life-changing news. “You realize that your little girl has Down syndrome, don’t you?” Predicting that Andrea would never walk, talk, or function normally, the doctors recommended placing Andrea in an institution and “forgetting about her.”

The devastated parents reached out to the family for help. Iola’s brother insisted that the family move near them in California, one of the few states at the time that offered special programs for children with intellectual disabilities. Iola and Arthur decided to make the move as soon as Clyde finished her school year in June.

Clyde’s parents didn’t share the news of Andrea’s condition  with her until the family on their way to California. “It was the saddest car trip of my life,” said Clyde. “I cried the entire time, not able to accept that my beautiful little sister was different.”

Once the four of them settled in Santa Ana,  however, Clyde didn’t let Andrea’s differences get in the way of loving her. She took her sister under her wing, mothering her and helping her learn to walk and talk. It changed Clyde’s outlook on life. “If you wanted to be my friend,” recalled Clyde,” you had to accept the fact that Andrea would be tagging along. She was my sidekick.”

Clyde also advocated for her sister when Andrea started special education classes. “Andrea was always bugging me when I was doing my homework,” said Clyde. “So I put up a chalkboard and started her on her ABC’s. Soon she was writing her own name and reading. I went to her teachers and showed them what she could do.” Andrea also learned to write in cursive, which she regarded as one of her greatest accomplishments. “She loved telling people she could sign her ‘John Hancock’” said Clyde.

Clyde graduated Santa Ana Valley High School in 1963 (a relatively unknown band, The Beach Boys, played at her senior prom) and enrolled in UC Fullerton. In her junior year, her birth father, Robert Pinard, connected with Clyde and asked her to come to Vermont that summer to meet him, his wife, and her seven half-sisters and brothers. Clyde agreed to go as long as she could also bring Andrea.

Robert owned and operated the ski shop/shoe store at Norwich University, a private military college. He asked Hal Lewis, one of the  Cadres breaking in the incoming cadets to “watch out” for the daughter whom he had never met. “I fell in love with Clyde AND Andrea,” said Hal. After her college graduation, Clyde flew back East to attend Hal’s graduation. The two were married and settled in New Hampshire.

After she graduated from her special education program, Andrea worked different jobs at Wendy’s, McDonald’s, and a local supermarket. When Arthur retired, the three of them moved to Charlestown, New Hampshire to be closer to Clyde, Hal, and their support. Clyde would drive the six hour round trip  from her home in Plainstov at least once a week to  take them shopping and to doctors’ appointments.

Andrea enrolled in a sheltered workshop program. She also became involved in a local Special Olympics track and field program. Although she wasn’t good at the sport, her reading and writing skills made her an ideal “administrator” for the team. Her success in those duties resulted in her appointment to the board of the New Hampshire’s Governor’s Council for the Disabled. Once a month, she went to Concord to participate in the meeting and attend workshops on how to handle themselves and their interactions with others.

Both parents passed away by the time Andrea was forty-eight years, and she came to live with Clyde and Hal. They set her up in the lower level of their home in a area with her own private entrance that contained a bedroom, a room, and a kitchenette. Andrea was thrilled. “I never had my own apartment before!” she exclaimed.

Soon after her suitcases were unpacked, Andrea and Clyde made a trip to Walmart to buy needed items for her new “apartment.” After trips through all the aisles, they headed to the check-out line with a shopping cart filled with kitchen items, towels, and bedding. Suddenly, two women pushed in front of Andrea with their cart.

“Move your fat ass,” one of the women told Andrea.

“What did you say to me?” she demanded.

“You heard her,” the second woman said. “She said, ‘Move your fat ass!’”

Andrea pulled herself up to her full five foot height. “People see my disability when they look at me,” Andrea said loudly. “People can see YOUR disability when you open your mouth!”

As the two women deserted their cart and slunk away, the people waiting in line burst into applause and cheers.

Clyde beamed with pride. “I guess you can take care of yourself.” she said.

“And I guess those advocacy classes are finally paying off!” said Andrea.

Andrea lived with Clyde and Hal until her death at 53 from heart disease, a complication of her Down syndrome. Clyde keeps a picture on her refrigerator of  her beloved sister. They are standing together, with their arms around each other, smiling broadly.  “She will always be with me in my heart,” said Clyde.

Scott Hamilton, the Olympic skater said, “The only disability in life is a bad attitude.” Thanks to advances in public education, the intellectually challenged have opportunities to reach their full potential. Thanks to programs like Adam’s Camp and Special Olympics, these same individuals have opportunities for recreation and personal fulfillment. And thanks to people like Andrea, Clyde, and her family, we all are made aware that every individual—no matter what their challenges—can offer much to our world.

Loveys “Make It Better!”

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Rerun and Foxy
Mark Silverstein and Evey with her lovey

Rerun, like his distant English relative Paddington Bear, has had quite an interesting life.

Two days after my daughter Julie was born, “Big Brother” Adam visited her in the hospital with a brown stuffed bear in tow. He and my husband Larry had picked it out at the toy store that morning. They named him “Rerun,” the moniker—hats off to Charles Schultz— we had given my increasingly growing tummy during the pregnancy. Rerun took his place at the corner of the hospital bassinet, allowing Adam to recognize his sister in the nursery. Julie reciprocated the day she came home from the hospital when Adam found a Spiderman doll waiting on his pillow.

Thus began Rerun’s journey through Julie’s life. He was a permanent resident of her crib, her “big girl” bed, and her college dorm room. Rerun traveled cross country with Julie when she started her new life in Colorado. He even had a place on Julie’s bed stand after she married Sam.

And now my daughter’s daughter has her own lovey. Sylvie latched onto Foxy when Julie brought  the big-eyed Beanie Boo home from an airport gift shop. Sylvie carries him with her everywhere, tucked securely under her arm. When he isn’t being held, Foxy watches over Sylvie when she eats and when she takes her bath. And every night, Foxy accompanies Sylvie to bed, where they are joined by Rerun, who now has a special spot in the crib.

While writing this story, I posted a request on Facebook for people to share their  “lovey” story about a toy or item with which they or someone they knew were totally attached. Over a dozen people responded—with tales as far away as Israel. Anne Rothenberg shared that her grandson Amiad is attached to large stuffed dog named “Clavlavi” (“puppy” in Hebrew).  The dog has been a part of their family for almost a decade. “He is pretty bald from years of stroking and washing,” Anne said, “but the whole family loves him so much that he is included in all family pictures.”

People reached back decades into their own childhood to talk lovingly of their favorite toy or blanket. Lee Ryan, my former student, wrote, “At age sixty, I still  have Teddy.  Of course, I can be without him, but I am grateful he’s still around.”

Susan Lenigan recalled that over sixty years ago, her sister Judy had her “Kitty.” As time went by, the stuffed animal’s eyes fell out and his face became faded. During one of her visits, their grandmother  decided to “fix” Kitty while Judy was in school. She sewed on new button eyes  and painted on a new face.When Judy came home and saw Kitty, she cried and ran away from her precious companion. She gradually—and grudgingly—accepted the imposter.

Linda LaFlure Nelson also learned that loveys often were best untouched. She and her daughter still remember the sad day that Linda washed Sara’s beloved “blanky” “Sara burst into tears sobbing that it no longer smelled like her.”  Linda said. “I felt like a bad mommy.” Blanky ended up as nothing more than a smelly knotted ball of tattered material. Nevertheless, Sara, now in her thirties,  has “Blanky” tucked away in a drawer in her home.

And like Rerun, loveys have traveled the country—and world. Becky Silverstein’s daughter Evey had a crocheted pink blanket with yellow edging that Becky received at her baby shower. Whenever Evey was hurt or fussy, Becky would sing “Mr. Blankey makes it better, yes, he does.”  Evey held it all day, flipping the corners back and forth repeatedly, self-soothing and settling herself down.  It went everywhere: in the car, in the crib, in the high chair, in the playpen, on every family vacation.  Eventually, Mr. Blankey also went with sixteen year old Evey for a two week stay in Scotland and for a three month trip Israel after she graduated from the Jewish Day School in Maryland. Mr. Blankey then went to college in Boston, moved with her and her fiancee to California, and went on their honeymoon cruise in the Mediterranean.  Now Mr. Blankey has a place of honor on their bed in San Jose, California, providing a cozy napping spot for their dog, Kiwi. As Becky said, “Mr. Blankey still makes it  all better.”

Losing loveys can become  a major emergency. Sharon McLelland’s daughter’s cow, which still is “alive” with more stitches than body, once was FedEx’d overnight soaking wet as he was so needed. And those emergencies sometimes spill over to adulthood. Lynn Urgenson’s daughter Sue had a hand crocheted  “Blan-key”that she slept with even up into her adult years. When Susie moved to Israel, it was the one item Lynn forwarded to her. Unfortunately, it got lost in the mail. When the package finally was returned to Lynn six months later with “Address Unknown”  stamped on it, Lynn decided to avoid further heartache and deliver the tattered blanket in person next time she saw Sue. “My granddaughter Sarit has a beautiful one I made for her,” said Lynn, “but she doesn’t have same attachment!”

Can one avoid disaster with back-ups? My daughter has two more Foxy’s tucked away in case Sylvie loses her constant companion. Sometimes, however,  even that plan backfires. Judy Lynch’s daughter Katie slept with a stuffed panda. When Katie was twenty months old, Judy went back to work and bought a second Pandy so one bear could stay at home and the other could stay at the sitter’s. Katie became attached to both Pandys and had to have both of them in both places.  Judy recalled,”Who knows how many times we had to drive back to the sitter’s when we realized we’d left a Pandy behind!”

Fortunately, some children accept change. Jackie Betters’ grandson had a blanket named “Meme” that he slept with every night. His mom washed it so much from his dragging it everywhere with him that it got really thin. She folded it in half and sewed it. After several more washings, it got thinner. So she folded it again into a twelve inch square and, eventually into a six inch square. His mom has it tucked away in her dresser just in case he should ever need it again —even though he is a grown man with a newborn son of his own.

Now that children and parents are gearing up for school opening, don’t be surprised to find loveys hidden away to provide needed security. Over thirty years ago, Julie Thompson Berman’s son had a beloved “blankie.” All through kindergarten he carried a tiny piece of it in his pocket. He never took it out, but  he would just put his hand in his pocket, touch it, and be comforted.

Rerun. Foxy. Teddy. Clavlavi. Kitty. Pandy. Assorted pieces of tattered, smelly blankets. Each one treasured, loved, and often still part of their owners’ life.