All In The Family
A relatively new initiative, the Baltimore Jewish Abilities Alliance, is housed at the JCC and is designed to support and connect individuals with special needs and their families and to encourage their inclusion in the Jewish community and Jewish life.
There’s also the local branch Friendship Circle — a Chabad-Lubavitch-run network of programs for families and children with special needs — whose teenage volunteers have helped the Givre family by providing fun and companionship for Rozie, as well as freeing up the parents and Rozie’s brothers so they can spend time together.
Sibshops, a program facilitated for the past three years by Sarah Beale, a certified child life specialist at Mount Washington Pediatric Hospital, caters specifically to siblings of those with special needs. It offers one program per year for children 4 to 7 years old and three programs a year for children 8 to 13.
“The main purpose of the group is to provide a safe environment where siblings can hang out with one another and learn that they are not alone in their feelings,” said Beale. “We play high-energy games, do different craft activities and learn about various disabilities through activities, skits and games. While we don’t market ourselves as a group therapy, participants do have the opportunity to share what’s in their hearts, ask questions and talk to one another.”
Children can be jealous of all the attention showered on a sibling with special needs, discovered Beale. “We often see them upset because they do not get the same treatment as their sibling with special needs or they do not get as much attention from their parents.”
Beale recommends that parents spend one-on-one time with their typically developing child on a regular basis.
“Siblings tell me that their some of their favorite times are just getting time alone with their parents, whether that’s eating a meal together, playing a game or watching a favorite TV show or movie,” she explained.
Band similarly counsels parents to make an effort to focus on their typically developing child as much as possible.
“Families need to step back and look at their schedules,” she said. “Especially if they are involved with a lot of early intervention therapies with the sibling with a disability, it can really take a lot of time. … Make arrangements to spend time alone with the other siblings, even if it’s just for a Sunday morning bagel run.”
In the case of the Baltimore family preserving their anonymity, their eldest child ended up going to college. Last fall, the child enrolled in a demanding arts program out of state, meaning that for the first time, with the exception of brief periods during the summers, the younger sister had her parents all to herself.
“We said, ‘Oh, this is what parenting could be like!’ We could just do things,” said the mother. “The three of us went to a Shabbaton with other families with children nearing their b’nai mitzvah years. We had a great time. We could never have done the things we did with [our other child] around. She would have been needy and bored. We have peace at home when she’s away.”
The peaceful household didn’t last long, however. The older child’s behavior got out of control at the out-of-state program; she had to come home. The re-entry did not go easily, and the parents and younger sibling were frequently overwhelmed.
Sometimes, though, the challenges of growing up with a brother or sister who required special care can make siblings better people, said Drew Taubenfeld, pointing out that having a sister with autism has made him more caring.
Annie taught the Taubenfeld brothers “humility and how to be comfortable with who or what you are, wherever you go,” said Evan Taubenfeld. “She’s taught me to see the best in people.”
Band noted that she frequently sees siblings of those with special needs entering the helping professions when they grow up.
Israel, the JCC coordinator, and Emily Hecht, who is pursuing her master’s degree in occupational therapy, fit that trend.
“I don’t know if I would have had this interest if it were not for my brother,” said Hecht, who by seventh grade was volunteering with children with special needs at the JCC and worked with special needs campers at Camp Milldale’s inclusion program and at the Shafer Center for Early Intervention in Owings Mills. “[My experience] helps me to relate to them. It’s second nature to me.”