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New Book, Staying Afloat, Helps Families Dealing With Illness

Written by SIBS place staff, the book focuses

on the experience of the ‘well children’

Located in Hewlett, SIBSplace is a unique, free support program of South Nassau Communities Hospital that serves the children living with a sibling or parent who has a devastating illness. The donor-funded program is offered on Tuesdays and Thursdays after school to help meet the needs of the well children by offering activities to help them discuss the wide range of emotions they are dealing with and to help them learn coping skills. The mission of SIBSplace (Survivorship in Brothers and Sisters) is now reaching more people through a new book, Staying Afloat, which is a support guide to help parents and well siblings cope with family illness.

The book was written by Suzanne Kornblatt, LMSW and Joanna Formont, LMHC and also with Arlene Basner, MA, Joan Perkell, LCSW and Diane Silver, MA. Kornblatt and Formont are licensed mental health professionals who have worked at SIBSplace for several years and have much experience with helping the well children in families struggling with an ill sibling or parent. In an interview with Healthy Living Digest, Suzanne Kornblatt and Joanna Formont went into more detail on the book and the SIBSplace program.

The format of the book includes sections that address specific emotions, such as abandonment, anxiety, jealousy, disappointment, and guilt. In each of these sections, the well child with a sick family member tells a story that relates to the particular feelings. For example, one child referred to as “Pamela” (age 9) tells the story of going away to sleep-away camp. Before she left for camp, her little sister got sick, but Pamela’s parents told her not to worry. She had a great time at camp and didn’t think a lot about her sister. Then on visiting day, her family arrives and Pamela sees that her sister has lost all of her hair and even though she is 6 years old, she needs to be carried by her father. Pamela feels terribly guilty that she has been having fun at camp while this was going on at home and she also wonders, “Why didn’t they tell me that my sister was so sick?”

The next part focuses on effective techniques and strategies to help a child like Pamela. This includes advising parents to be open and honest about an illness and to prepare their children for physical changes that may accompany an illness. The books states that if Pamela had known her sister was undergoing treatment that would make her lose her hair, she might have been able to decorate a bandanna for her while at camp, which would have been a meaningful item to give to her sister on visiting day.

Each section ends with a creative project the child can work on that will help them to open up about the particular emotion they are experiencing. For a child like Pamela, the project is called “Breaking the Chain of Guilt.” The well child writes about each feeling of guilt on strips of paper that are then chained together. Then the feelings of guilt are discussed and coping strategies and positive self-talk statements are provided to the child. Once this is complete, the child is told to pull apart the chain, crumble up the paper and throw it in the garbage in order to symbolically “break free” of these feelings.

In explaining how she and Suzanne Kornblatt developed the curriculum and these creative projects over the years, Joanna Formont said that it was important for the children to have multi-dimensional activities because not every child is going to respond to verbal work. “It’s always finding a different way to get them to either talk about their feelings, talk about their support systems, or talk about what coping skills are available to them,” Formont said.

Kornblatt said, “Feelings are not wrong: it’s how we act on them. When we get the children comfortable enough for them to reveal their internal world and how they are emotionally feeling, then we can work to develop the healthy coping skills.” She added, “We like to think of our coping skills as the magic within, because like magic tricks, it is really a learned skill and the more you use it the quicker you are at being able to pull out that coping skill when you need it.”

Both also spoke about the important aspect of peer support at SIBSplace, since the children interact with each other. Formant explained that the well children deal with many difficult emotions. For example, many of the children say, “Sometimes I wish I was sick.” If they said that to their classmates at school who are not in the same situation, they probably would not understand that feeling. However, other children in the same situation do understand. “To have professionals and peers validating those feelings and saying it’s okay to have them, it is so powerful,” Formant said, also adding that it is a safe environment for the children where they can say what they want and still be accepted.

“If you are going to talk about being embarrassed of your sister, brother, or parent who is bald because they have been undergoing treatment, your friends who have not had that experience and cannot relate to your feelings of being embarrassed, and you feel very judged,” Kornblatt said. “Here, the kids can say, ‘I know how you feel.’ And we might be able to say, ‘How did you cope with that?’ And we can then go around and give suggestions and all of the professional staff here can help them to come up with some good ways of managing their thoughts and feelings.”

SIBSplace also offers support for parents. “When Joanna and I came here, it became clear that you cannot help children in isolation. You can teach them all the skills you want to, but when they go back in the home, families have to work together to develop the consistency of using those skills,” Kornblatt said.

With this view in mind, they began to encourage parents to join a support group offered by SIBSplace for that particular purpose. “Over the past eight years the group has really evolved so that parents are not only talking about better parenting skills but they’re also talking about the challenges they have with the different illnesses,” Kornblatt explained, and added that as they became more comfortable with each other, they also started speaking about their spousal relationships, which are so stressed. “Until you have this type of traumatic illness enter into your family, you’ve never seen the way your spouse responds to the anxiety… and the whole loving relationship is put to the side because you are so busy meeting the medical needs that you are forgetting to tend to the relationship,” she added.

The interaction with the parents also helps facilitate questions that the well children might have about a difficult topic. Sometimes, it is the parents who ask for help in talking about a difficult topic, such as a diagnosis. “We have no shortage of mental health workers who are capable of sitting with a parent and a child when there is a difficulty,” Kornblatt said.

Every child experiences problems from time-to-time that require help from their parents, and for the well children with a sick family member, they might feel like they are not allowed to have problems since their parents are already so overwhelmed, and the professional staff at SIBSplace can help intervene in these situations. “Sometimes you have to fight for the other child’s life as well. It could be a child who is dealing with a learning disability, and the parents are so overwhelmed they don’t want to recognize that,” Kornblatt said, adding that they have homework support at SIBSplace, where these issues are sometimes discovered. She explained that several retired teachers, including a special education teacher, volunteer at the center to help the children with homework, so they have the ability to recognize when a child is in distress and the parent might need to go to the school district and ask for an evaluation.

High school students also volunteer at SIBSplace and several have also been helping with fundraising efforts, such as basketball tournament to raise funds, a bowl-a-thon, and a fashion show. South Nassau Communities Hospital runs a major auction every year to contribute to the program, but the fundraisers conducted by people who have been touched by the program also help to enhance their services. Kornblatt explained that the much-needed funds go towards sending the children on field trips to places like museums or the aquarium over the summer, which then allows them to have something fun to talk about with their classmates when they return to school.

Formant added that they also try to do a lot of parent-child events like going to the circus or even an Islanders game. “It gives them permission to have fun and it is such a big deal because they need that nudge to get out of all the chaos that’s going on,” she said. Formont added that having permission to laugh is an important issue for these families. She related how at pick-up time when the whole family usually arrives, the sick sibling of one boy once said to a counselor, “My brother doesn’t laugh anymore and I really miss that.” Formont said, “Here’s a kid who’s been through the ringer himself and he misses that relationship too.” She explained that the program helps to deal with the issues, and by doing so, it is also to the benefit of the sick family member who really needs an environment at home that is as healthy and comfortable as possible.

All proceeds from the book, Staying Afloat, will go towards supporting the program. Kornblatt added that this book was written to not only help families and children who are dealing with a serious illness, but it was also written as a support guide to inform the mental health staff in schools, and the teachers, on the experience of the well child. “The book is helping the parents to understand what is going on with the children, it’s helping the children to understand themselves better and normalizing the experience, and it is also helping other adults who have the opportunity to work with kids to understand the experience.”

Since the book focuses on the child’s perspective, it helps readers to put themselves in that’s child’s shoes. Kornblatt said that they were aiming to create a relatable situation in an emotional way as opposed to an intellectual way. “I think that was the most wonderful thing about having five women write this book together, because one person could not have come up with so many thoughts, feelings, and vignettes,” she said. Formant added that they wrote the vignettes based on a compilation of numerous kids’ experiences over the years.

“It was a work of love,” Kornblatt said, adding that they are grateful for South Nassau Communities Hospital’s support. She also noted that the hospital supports this free program, which is offered to all well children with a sick family member, meaning that in many cases, the sick family member is not even being treated at South Nassau Communities Hospital. “For a hospital to recognize that when there is an ill patient, that’s not the only person impacted by the illness, and for a community to support that truth and to allow a place for the whole family to gain the skills that will allow for resilience, for them to get through the challenge effectively and feeling cared for and taken care of, I think that in our hearts we’re forever aware and appreciative of the fact, especially in these difficult economic times,” Kornblatt said. She added, “It is not always the easiest path to support something without bringing in income, but rather just from the heart. If the ill person can live in a healthier environment with the other members of the families, have a little more strength because they’re being propped up with coping skills and support from the community, then it’s a win-win for everybody.”

For more information on SIBSplace, Staying Afloat, or how to donate to this program, visit the website www.south nassau.org/sibsplace.