Our Stories

Leticia

Leticia Gloria-Cervantes helped break through some old stereotypes and change current perspectives of people with cognitive disabilities when she started full-day kindergarten. Her mom, Theresa, boasts, “I would do this experience 100 times over. I became a better person because of Leticia.”

Theresa found help and support through Raising Special Kids after the birth of Leticia, who has Down syndrome. “You have helped me to realize that the way you present your child to the world, is the way the world will perceive your child.”

Theresa encourages families to learn as much as they can about their child’s disability. “What we don’t understand, we become fearful of,” she said.

Theresa enjoys an active role as a Parent-to-Parent volunteer, and as a member of the Family Faculty. She noted “I receive the greatest pleasure in helping other Hispanic families walk this journey.”

Patrick

Patrick can usually be found surrounded by his favorite books, filled with stories and colorful pictures about fantasies, says Amy Bonner. Patrick suffered a brain injury when he was 10 months old and has cerebral palsy. After receiving Patrick’s diagnosis, Amy and her husband didn’t know what to expect. “We learn as we go along,” she reflects. “We just adapt as needed.” Amy became an expert on her son’s therapies, and advises parents to live life as normally as possible.

After meeting with staff at Raising Special Kids, Amy was given suggestions about how to set up Patrick’s IEP (Individual Educational Plan) as he entered Kindergarten. “Patrick has been mainstreamed in school. The assistance we received from Raising Special Kids helped to get what we felt was best for our son. We feel we’re very lucky.”

"I wish we had learned about Raising Special Kids sooner," added Patrick's father Kevin Bonner, now a member of the Board of Directors. "Raising Special Kids provided invaluable information about educational options. But the staff and volunteers provide so much more than that, including Parent to Parent support for families who have just learned their child has a disability. I wish I had known about that support network when Patrick suffered his injury."

Mark and Priya

Priya is a second-generation baby born with special needs. Mark feels his experience has helped prepare him for the journey ahead. “I know in the future I can turn to Raising Special Kids for resources, especially when Priya enters school,” stated Mark.

As a volunteer with Raising Special Kids’ Family Faculty, Mark shares his experience with physicians in residency programs.  While hosting residents for in-home visits, he discusses the family perspective and helps residents understand some of the challenges families face each day. “I enjoy speaking to new physicians so they can learn the best ways to interact with families,” says Mark.

 
Lainee

It was two and-a-half months before Cee Cee Tassinari could bring her infant daughter, Lainee, home from the hospital. “She was in Neonatal Intensive Care and required a lot of care to help develop her premature lungs,” reflects Cee Cee. “We thought we were out of the woods when we finally brought Lainee home, but that was just the beginning of our journey.”
While waiting for surgery, Lainee “coded.” Later, Lainee was diagnosed with cerebral palsy and visual impairment. “I was given the number for Raising Special Kids, and they connected me with another family. ” Cee Cee remembers her Parent to Parent connection, “It was so wonderful to talk to someone who knows there is hope.”
Cee Cee was so inspired by her experience that she decided, “There was someone out there who needed my help.” The experience with Lainee inspired her to want to share with other parents. “I tell them, don’t give up, stay positive, even on those toughest days,” she advises parents as a Parent to Parent volunteer. 
Today, Cee Cee looks back and says it’s been a remarkable experience. “We are so lucky to have Lainee.”

Teresse

Twila Pochoema discovered Raising Special Kids while taking a course on advocacy. She began as a Parent to Parent volunteer giving support to families and then became a liaison for Raising Special Kids to the Hopi Tribe.
“We have used many of the services to help us with our daughter, Teresse: special education consultation, advocacy training, and guidance in locating resources—which can be difficult to find in rural areas like ours,” said Twila. “When we received a diagnosis for Teresse, all our expectations for the future were turned upside down. But learning more about our daughters’ disability has been so helpful for our family. Our older children have become advocates within their own peer groups for other people with
disabilities as well.”
Twila’s efforts in helping to form the Turtle Nation Partnership, a parent advocacy group, has brought many families together and increased awareness. She noted her personal growth as well, “I’ve learned to speak in front of groups comfortably and change things for our community.”