(Third story in a series on special needs in early learning.)
When Anna’s son was born with a rare disorder four years ago her world changed and that included her child care. Her options shrank to nearly nothing.
During her four-month maternity leave, Anna looked for a high-quality program around Seattle, but nothing seemed to work. Initially, she hoped to enroll her new baby in a home-based child care near her North Seattle home. While they said they would be happy to add him, they were not equipped for his special needs tied to Ohdo syndrome, a disorder characterized by eating, movement, speech, learning and other disabilities.
“I would rather have that answer than have him sit in the corner and not get what he needs,” Anna, who requested that her name be withheld, said.
Eventually, Anna found an option, Northwest Center, a long-running resource for children and adults with disabilities. But, the center was too expensive for a family that relies on Anna’s public teacher’s salary and her husband’s income as a Boeing Co. Machinist.
They tried an Au Pair for 18 months, but it didn’t work out. Then Anna heard of a good nanny through friends – an expensive option she was unsure would meet her son’s needs – and hired her. Three years later, the nanny remains a sweet and helpful part of the family, but also a costly addition to their already complicated juggle of half-day preschool at the University of Washington’s Experimental Education Unit, medical appointments and weekly physical therapy.
Parents often complain about the challenges of finding high-quality child care – waitlists, extensive individual research and the shock of fees that can run as high as college tuition. But families with special needs children have a far harder time. They may need accommodations, though not as expensive as some think, have few choices and bigger bills. These barriers may explain why one parent often stops working.
But Anna didn’t have that option. Like many modern American families, she and her husband live in an urban area where two salaries are often needed to cover the steep cost of living.
“I have to work. I don’t have a choice,” said Anna, who also has an 11-year-old child.
Hurdles in special needs child care not only make Anna’s life and others more difficult, but may push these families and their children further outside the mainstream. At a time, when many educators say they are striving for greater inclusion of children with disabilities in kindergarten through high school, these kids often start the first years of their education on the outside.
Complicating their child care juggle, Anna’s family, like many with special needs children, has bills other parents don’t. Their son has medical treatments, prescriptions and physical therapy that sometimes are not covered by their health insurance.
And while some people may think Anna gets a lot of help with these bills from state and federal programs, Anna points out that isn’t the case.
“I don’t have any assistance from the state,” Anna added.
As Anna’s son prepares for kindergarten next year, everything is once again changing. Anna will need to find care for her son before and after school. They are on the waitlist for Northwest Center, but they don’t think they will get in.
Anna and her family are not looking for sympathy or charity. It took Anna a year to grasp the idea that raising her son will be a lot different than raising her first child. But now the family accepts the future will always hold unknowns.
“It is just a different lifestyle, and you just accept it and go on. You don’t have a choice. You just do,” Anna said.
Perhaps they should have a few more choices for child care as they do.