When Amy Parker-Stayton delivered twins, she and her husband, Corey, both police officers, did not anticipate the struggles ahead in finding the best childcare fit for her sons, Christian and Christopher.
Taking care of two infants was just too much for a well-intended relative. Later, the twins were bumped out of part-time day care in favor of a family who wanted full-time.
Christian has physical and developmental needs due to cerebral palsy, requiring assistance with daily living. Parker-Stayton said a St. Louis daycare advertised that it cared for children of all disabilities, but she soon discovered that was not the case.
“One of the teachers told me, ‘Well, he has cerebral palsy. What does that mean?’” Parker-Stayton said. “That was the deal-breaker for me. You advertise on your website that you take kids with disabilities but you don’t know what cerebral palsy is, which is a common disability?”
Cerebral palsy (CP) is a group of neurological disorders that appear during infancy or early childhood, which permanently affect body movement, muscle coordination and motor skills. The brain damage usually occurs before or during a baby’s birth. Parker-Stayton said it is thought that Christian was deprived of oxygen at some point during her pregnancy, causing CP.
The National Institute o0f Neurological Disorders and Stroke states other neurological symptoms that commonly occur with CP include seizures, hearing loss, impaired vision, bladder and bowel control issues, pain and abnormal sensations.
“If you are going to advertise that you can accommodate kids with disabilities, get the training, talk to an inclusion (specialist), talk to some of these organizations like St. Louis Arc,” Parker-Stayton said. “They can come in and show you how to accommodate these kids.”
Through a recommendation, Parker-Stayton found St. Louis Arc’s Childgarden, where her 3-year-old twins are doing well. Christian is thriving in an early childhood education center where he can learn, develop and receive physical, occupational and speech therapy onsite, and whenever possible, in the classroom.
She also appreciates that teachers work well with the therapists that come to Childgarden to work with Christian.
“The teachers would listen to the therapist, they would take and do what the therapist wanted them to do,” she said. “Even when the therapists weren’t there for that hour, the teachers were still doing the therapy – the positions, the techniques that the therapist had taught them to do,” Parker-Stayton said, adding, “I know that has to be extremely hard,” with having other children to work with in the room as well.
Childgarden, located in St. Louis’ Central West End, includes children with and without disabilities, offering early education, intervention and consultation to other community resources.
“Childgarden is leading the way among child care facilities because of its emphasis on inclusion,” said Mark A. Keeley, president and CEO of the St. Louis Arc. “From the moment you walk through the doors, you’ll recognize that this is an environment where children of all abilities learn and play together. No one is left out.”
St. Louis Arc provides support and programs to more than 4,000 children, teens, and adults with Down syndrome, autism, cerebral palsy, and other intellectual and developmental disabilities.
“One of the things I always tell families is that they are not alone on this journey,” Keeley added. “We support the individual with a disability, along with their family, for a lifetime.”
The other big issue for her as a parent of a child with disabilities was finding out about resources. While there are organizations offering tremendous support, services and supplies for the children, there seemed to be no one-stop shop.
With limited suggestions from health personnel, she searched online to find what was available.
“The Arc and Miss Julia from Capable Kids and Family started coming to the house and she reached out to some parents,” Parker-Stayton said. “I think once he started First Steps, they may have told me, hey, have you ever tried Variety Club?” His doctor’s office told her about Missouri First Steps, an early intervention program for children with disabilities or developmental delays.
He also gets support for equipment needs (not covered by insurance) from Variety the Children’s Charity of St. Louis, which paid for special chairs, a custom-made adaptive bicycle made for his particular disability and weekly equine therapy at from TREE House in Wentzville, Mo.
“Horse therapy – this is one of the therapies he has benefitted from the most … because kids with cerebral palsy, their muscles are either too loose or too tight. Christian has the really tight muscles. When they put his legs on the horse, it loosens him because you have to straddle a horse,” she said.
On a note of social correctness for persons who have limited or no knowledge on what to say, how to say or how to ask about a child or individual with disabilities, Parker-Stayton suggested, “Don’t be so judgmental or don’t be quick to think something is wrong with a child because they have a disability. They are just like you and me – and they may be even smarter than you and me.”
For more information, visit http://www.childgarden.org or www.slarc.org.
