By Danny Teigman
But for East Rockaway resident Janice Fulgieri, whose 15-year-old son Anthony is developmentally delayed, summer is far from a carefree vacation.
Although Anthony volunteered at a village recreational summer program through most of July, August weeks loom large on the calendar with not much planned, and Fulgieri describes her frustration and heartache that her son has no friends and limited social interactions.
³It kills me,² she said as she watched her son gaze longingly out a bedroom window at a next-door neighbor¹s swimming pool, which is often filled with the laughter of other neighborhood children. ³It breaks my heart. There¹s a constant sadness every day in my life.²
Anthony, an East Rockaway High School student who is enrolled in the district¹s Life Skills class, wants what most children want: friendships, good times and respect. But Anthony, his mother explains, fits into a narrow sub-category of the disabled ‹ he is intelligent enough to know he is different, but struggles to connect with other mainstream students.
³We¹re between a rock and a hard place,² Janice said. ³I don¹t find anyone like him.²
Unwilling to blame anyone in particular, Fulgieri, like other parents coping with disabled children, feels overwhelmed by a bureaucratic system that she says has done little to inform her about the programs available to her family and her son. ³I think the very worst thing is it¹s all so confusing,² she said.
Tim O¹Hagen, East Rockaway¹s recreation director, admitted that his department¹s programs, which include youth basketball leagues, sports clinics, dodge ball Fridays, tee ball leagues and even adult hip-hop classes, are not geared toward the disabled, and that to the best of his knowledge, only a few village children require such services.
To gain a better idea of the community¹s needs, O¹Hagen suggested increased communication between the village and the school district. For instance, with parental approval, a list of disabled children in the district could be provided to the recreation department before next summer. That way, O¹Hagen said, his department could begin preparing early.
³We have not done that yet,² he said, ³but it¹s something to look into. It¹s just something that every community should have.²
A lack of summer programs for the disabled is hardly limited to East Rockaway. Don Dreyer, director of the Nassau County Office for the Physically Challenged, said that on average, only three camps per state cater to disabled children and adults. The Town of Hempstead¹s Camp Anchor in Lido Beach offers such a program, but seasonal waiting lists are long. For teenagers 14 and up, the wait can be as long as a year. ³People have waited as long as three years for younger age groups,² said Camp Coordinator Jo Lentini.
Fulgieri does not even know whether such a program, which she said has a reputation for enrolling many children with Down syndrome, is suitable for her son.
Dreyer attributed the limited number of programs in part to the complexity of organizing a summer camp schedule for so many children who have such a varied range of abilities. Other challenges include the need for a highly trained staff and a lack of open space on Long Island for new development.
³One of the things I¹ve always thought [is that] there are certainly a lot of regular camps out there,² Dreyer said. ³It would probably be a somewhat easier, more practical initiative to take a good camp with fairly well developed property and then bring in, as a kind of addition, a component of the camp available to children with disabilities.²
Regardless of the reasons why few programs like Camp Anchor exist, the Fulgieri family must continue coming to terms with the fact that their son is different. And that other problems ‹ like his breathing problems at birth and his subsequent need for a tracheotomy and a feeding tube ‹ may still lie ahead.
³My concern is the lack of compassion from [some of] the other kids in East Rockaway,² Fulgieri said. ³They just don¹t want to play with him. ... I don¹t want him to be sitting in a room the rest of his life. ... No one¹s ringing our doorbell.²
Comments about this story? DTeigman@liherald.com or (516) 569-4000 ext. 246.
