There’s a poem Darneyelle Washington shares with parents of children with special needs. Titled “Welcome to Holland,” it sums up in a few lines what it’s like to suddenly face life with a special needs child.
The poem recounts the story of a person headed on a dream vacation to Italy, only to find upon landing that they have arrived in Holland. Upset at first, the traveler finally decides to focus on the wonderful things the new destination has to offer. As the poem says:
“If you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”
Written almost 30 years ago by Emily Perl Kingsley, a writer for “Sesame Street” and mother of a son with Down syndrome, the message still rings true: Holland isn’t Italy, but it, too, is a beautiful place.
Beautiful, yes, but also filled with challenges and tough days. Washington remembers when her son, Tyler, was born with Jacobsen syndrome, a condition caused by a loss of genetic material from chromosome 11. As a result, Tyler, now 15, is near-sighted and has hypoplastic left heart syndrome, meaning the left side of his heart is critically underdeveloped. He walks with a slightly unsteady gait. His speech is impaired so he communicates with hand gestures and signs, along with an iPad.
“It took me at least a year before I was able to just stop saying, ‘Why me?’” Washington recalled. “It just wasn’t fair. I was angry.”
Her sister and her friends all had babies that were fine. Why was she chosen to have a child who would require life-long care?
Fifteen years later, Washington still doesn’t have the answer, but she wonders if it was so she could help other parents in the same situation.
Washington has been the director at the Charles Webb Center for more than two years. Operated by the Disabilities Board of Charleston County, the center serves children ages 6 weeks to 10 years, including special needs and typically developing students. The majority of the 45 children in the day care and after-school care program have special needs, Washington said.
For working parents, the center provides a day care option until their child turns 3 years old and can receive services through the public school system. If parents are hesitant to make the transition to public school, Washington is there to help and reassure them about the decision.
“You’re opening yourself up to more services and suggestions the school district is able to make,” she explained.
Plus, the added structure and education can have long-term benefits for the child, she said.
Washington knows raising a child with special needs is scary and hard. She can relate to the parents at the center who are navigating the maze of services available to children with special needs.
“I try really hard to help out our parents,” Washington said. “It’s scary and it’s a lot. There were some really nice people who helped me along the way.” LCP