School offers structure to parents of children with special needs
GREENWICH — Fiveyearold Andrew Katz wakes up every morning with a bang.
At 6:30 a.m., he hops out of bed and empties all his clothes, shoes and stuffed animals from the closets and drawers and “basically destroys the room from the second he gets up,” according to his mother, Michelle Katz of Stamford.
Andrew, who has Down
syndrome, often sings children’s songs like “Old MacDonald Had a Farm,” during the routine before waking up everybody in the house.
“It’s adorable, but it’s a pain in the neck,” Katz said. Children with disabilities need constant stimulation, she said. “When they’re bored, they’re like destructive.”
Although Andrew’s morning routine always includes rearranging his bedroom, the damage isn’t as severe during the school year, when there’s less time for ruination and more focus on getting ready for class.
Caring for a child with special needs poses a significant challenge for many caregivers. For Katz and other parents of children with intellectual and developmental disabilities, backtoschool season brings a sense of relief.
The school year provides structure for the children, who often thrive with repetition and constantly engaging activities. During the summer, many parents must find creative ways of filling their children’s schedule all day, every day.
“Their attention span is just so short,” Katz said of Andrew and many other children with special needs. “It’s hard and it’s a long day and it’s exhausting.”
It can be difficult to find or afford local summer camps that accept children with disabilities, she said.
Andrew attended Apples Early Childhood Education Center, a Stamford Public Schools preschool for children with and without special needs. During the school year, Andrew received speech, occupational and physical therapy. When the school year ended in June, the school district provided a free fourweek program that ran for twoandahalf hours per day where Andrew received those same services. But throughout August, when it ended, Katz had no outside support in caring for Andrew.
The break in services over the summer caused Andrew’s speech, academic comprehension and motor skills to decline, Katz said. During the school year, his mother would often hear him reciting his ABCs or narrating stories in children’s books, but she didn’t hear that as much in the past couple of months.
“You worry, is he regressing? Is he forgetting all this stuff ?” she said.
To help combat regression, Katz paid out of pocket this past summer for a speech therapist to work with Andrew.
“He can’t go all summer without speech therapy,” she said. “Last summer he was barely talking. To have him come this far and stop in the summer for three months, he’d start kindergarten not saying a word.”
Still, the speech therapist wasn’t enough.
Katz had hoped to place Andrew in summer camp, but local options were either too far away, too expensive or they wouldn’t accept children with Down syndrome. Other specialized camps required an aide for Andrew, an added expense his mother couldn’t afford.
Karen Feder, director of therapeutic services at Abilis, a Greenwich organization supporting people with disabilities, said camps are unaffordable and scarce because kids with special needs often require experienced staff and specialized services. The camp shortage affects children of all ages with developmental disabilities, she said.
“In Stamford, school only runs for the month of July. That leaves you the whole month of August with nothing for your child, no structure,” Feder said. “And even in July, it’s a reduced program. It’s less hours; it’s to maintain your skills, not to improve on them. They don’t provide the same level of service you’d get through the year. So, that’s all parents really have from the schools. These are the kinds of struggles that they have.”
In Greenwich, children with disabilities are eligible for the school district’s extended school year program, determined by their individualized education program, according to Sasha Houlihan, the district’s public information officer.
For Laura Andersen, the Greenwich mother of a 6yearold boy with Down syndrome, the program has allowed her son to receive all the same services he had during the school year, including his three therapists, an aide who works with him oneonone and a teacher for the hearing impaired. Unlike the Stamford summer program, the Greenwich service lasts for six weeks and for six hours each day, she said.
“We’ve been really lucky,” Andersen said. “I don’t know what I would do if I didn’t have the six weeks.”
To help parents maintain structure during the summer, the state Department of Developmental Services provides resources and assistance to eligible families to send loved ones to summer camps or programs, according to the agency.
Katz said she has applied for state funding three times but was denied each time. In one application, she offered to pay for half of one camp’s expenses, if DDS would pay the other half, $1,200.
“I would have made it work, and figured it out, but they wouldn’t even budge,” she said.
In response to questions from Hearst Connecticut Media, DDS responded with a written statement.
“Depending on availability, DDS may provide financial support for camp tuition or additional funding for support services to facilitate camp participation,” they wrote. “Many DDS supported families successfully participate in summer programs; however, DDS is also aware of families that have experienced difficulties accessing programs for various reasons. DDS continues to work with these families to assist with available options.”
While Katz is relieved that Andrew is back in school, in kindergarten, she will face the same problem come June and wonders if she’ll ever receive assistance with finding him a summer camp.
When asked how she copes with attending to his complex needs while caring for two daughters who are 4 and 19 months old, she said, “It’s the only thing I know.”
“So, one day at a time. One hour at a time,” she said.