Spanish-speaking parents of children with Hermansky-Pudlak Syndrome from around the country are meeting once a week via telephone to share information and experiences, thanks to a special program offered by the Jewish Guild for the Blind, based in New York. The Guild was able to obtain a grant to fund the program.
Parents are given access to a toll-free number and the calls are moderated by Lilly Jackanin, a social worker from the Jewish Guild. Carmen Camacho, a board member of the HPS Network, represents the Network on the calls.
Since the calls started several months ago, Jackanin has not only been able to provide parents with a forum to get to know one another, but she’s been able to help families access resources in their own communities to benefit their children.
“ Sometimes we can help parents understand what services are available and what their child might need, say, in an educational setting,” says Jackanin.
Parents often have emotional needs too.
Jackanin says often parents have shared experiences such as people staring at their children in public, or asking questions that can be offensive. Some new parents express fears about their child’s future and what will happen to them during the course of their lives.
“Another issue that often comes up are experiences with the medical system,” says Jackanin, “Parents talk about taking their child to the emergency room where no one knows about HPS, yet feeling as though the doctors aren’t listening to the parent.”
Other parents are able to share strategies for coping with all of these situations. “Often parents say they feel alone,” says Carmen Camacho, “We want to change that situation. We want to take that feeling of isolation away.”
“The group showed me that I’m not by myself, and I can learn to deal with my child’s medical needs,” says Milka Lopez, “It’s assured me that my child will be okay and that when we need it, we will always have a place to go to get answers and support.”
Ariel Rancel, another parent participating in the calls, says the group is a great extension of the HPS Network’s annual conferences. “The internet and e-mails are great, but they aren’t like talking to other parents. These groups, whether in English or Spanish, allow us to remain connected beyond the conferences,” says Rancel. He adds that the calls are also a great way for other interested family members, who might not be able to attend a conference, to learn more about HPS.
In July the Jewish Guild for the Blind also started a once-a-month group for English-speaking parents.
To learn more, or to participate in the call-in support groups, contact: Lilly Jackanin, E-mail: email@example.com , Phone : 718-384-2945 or
Carmen L Camacho, E mail: firstname.lastname@example.org , Phone : 508-395-7523