CINDY ELLEN RUSSELL / CRUSSELL@STARBULLETIN.COM
Donna Otto feels blessed to have three healthy sons, who were all born premature. Twins Blake, left, and Carsen are 3, and Devon, who carries a doll that depicts his size at birth, is 6.
Paving rough roads
Easter Seals Hawaii turns 60
Crippled, lame, spastic. These are a few of the hurtful terms used in the 1940s in reference to physically or mentally challenged children. Wheelchairs were not seen outside, and the mentally retarded were locked behind closed doors.
Easter Seals stories
Easter Seals is seeking families that have been touched by the organization through the decades. Families are asked to submit personal, inspirational stories. On April 23, families, staff, volunteers and board members of Easter Seals will gather at Les Murakami Stadium for a reunion and take over the field for an aerial photograph. Participants will be given an "I'm history" T-shirt and treated to a University of Hawaii baseball game. Call 536-1015 or visit eastersealshawaii.org.
The terms have changed, along with the services available for those with disabilities, largely thanks to Easter Seals Hawaii, which celebrates its 60th anniversary this month.
Today, many children with special needs are attending public school and growing up to be adults able to make a difference in the community.
In 1946, Dorothy Devereux and John Burns went to Washington, D.C., to lobby for services for local disabled children. That same year, they established Hawaii's chapter of the National Society for Crippled Children and Adults.
Contributions from Olga Sultan, chairman of the Sultan Foundation Distribution Committee, were used to establish and maintain a therapeutic nursery school on Oahu for children with cerebral palsy. During the '50s, Sultan expanded services to include children of all ages and disabilities. The Sultan Nursery School moved from a Quonset hut to its current location on Green Street in 1959; 30 years later, facilities reached out to Kauai and the Big island.
Today, Easter Seals serves more than 3,000 families annually and continues to grow. Twenty-two programs operate on Oahu, the Big Island, Maui and Kauai. Groundbreaking on the newest Easter Seals facility takes place in Kapolei in April. Gov. Linda Lingle issued a $1 million grant-in-aid check for the multipurpose service center.
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Hawaii has offered strong support through the years for youngsters with disabilities. Prominent residents like Duke Kahanamoku showed they cared.
BACK TO TOP
Donna Otto gets help caring for three preemies
SOMETIMES the best things in life come in small packages. Donna Otto can attest to that. When her kids make a mess, Otto cheers on their creativity. She counts her blessings that they survived those first few years of life.
All three of her children were born premature. Her oldest son, Devin, now 6, weighed in at 1 pound, 14 ounces. Twins Carsen and Blake, now 3, weighed just 1 pound, 12 ounces each. "They all came home on oxygen and monitors," she said. Devin could wear his father's wedding ring around his arm.
The Sultan Early Intervention Program at Easter Seals, for children newborn to age 3, helped Otto and her husband, Rory, cope. "The program is for kids that have a rough start ... or may have trouble reaching their goals."
COURTESY OF THE OTTO FAMILY
Devin Otto could wear his father's ring on his arm when he was born.
Parents are taught how to challenge their children and encourage them to catch up. Occupational, physical and speech therapists work with the families.
Premature babies are not the only children who are helped, said Debbie Smatresk, program director. "We work with all different children, from a 2 1/2-year-old who has a speech delay to a child with cerebral palsy," she said.
Children with autism, developmental delays or who are bilingual are other candidates. The program also works with young mothers and families with a history of drug use and domestic violence.
"Anyone can refer a family and the services are free," Smatresk said.
The gap of developmental differences between preemies and babies of normal birth weight usually closes between the ages of 2 and 3, Otto said. All three of her children have graduated from the program and have caught up developmentally.
"It was like going to a play date. It was a wonderful program, the reason my kids are growing up and leading normal lives," she said.
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While pregnant, Otto did all the right things. She maintained a healthy diet, rested and received proper prenatal care.
"People expect to bring a baby home; everything is perfect," she said. "When that didn't happen, we were floored."
She certainly did not expect the same experience the second time around with her twins: "I was healthy and thought the first time was a fluke."
All three babies underwent hernia operations; two endured heart surgery. They were given a 50 percent chance of survival.
"It was a roller-coaster ride," Otto said. "We would take two steps forward and one step backward. We would make some progress, and the next morning, all hell would break loose. You get numb."
Otto now wants to helps others in similar circumstances. She is working to raise money for research with the March of Dimes. "Giving birth premature is epidemic," she said.
Otto is also involved in the formation of a Neonatal Intensive Care Unit family support group: "It's so nice to have someone to talk to who really understands what you are going through."