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New support group is launched for siblings of medically complex kids

Photo courtesy of Kelly Mussehl
Siblings Kelly Mussehl and Andrew Miller

When Kelly Mussehl was growing up, she’d sometimes feel frustrated that her younger brother Andrew was getting most of her parents’ attention.

In some ways, this imbalance was inevitable, because Andrew, who was born when Kelly was 4 years old, had a severe form of spina bifida, and needed 24-hour medical support. Still, even though she loved Andrew and understood that he needed extra care to thrive,  there were days when the young Mussehl felt like she was living under a serious attention deficit.  

“It’s a long time ago now, so it’s hard to remember the details all that clearly,” said Mussehl, 34. “But I asked my mom the other day if I acted out when I was younger, and she said I did because I didn’t know how to express my feelings and emotions when my brother was getting all the attention.”

As she reached elementary age, Mussehl began to understand that her life was different from other kids’ lives.

“When I was younger, I just thought that the way my family had to adapt to my brother being sick and having all those people in the house helping him was the norm,” she said. “As I started going to my friends’ houses, I saw that other people didn’t have all that kind of stuff going on. ” The realization made Mussehl feel isolated. 

“I didn’t know any other kids who were in the same situation,” she said.

Siblings need support

Mussehl’s experience is not unusual, said Monica Handlos, MSW, LICSW, a clinical social worker at Pediatric Home Service (PHS), a Roseville-based for-profit agency that provides medical home-care services for some 4,000 children.

Kids who have siblings with complex medical issues like Andrew’s often face many of the same concerns as Mussehl did, she said. Addressing those issues can be complicated: A medically complex sibling has more obviously pressing needs, and even with the most loving parents, a typically developing kid can feel relegated to the background.

Because of these very real concerns, Handlos is launching a new support group for able-bodied kids ages 6-11 with medically complex siblings. The “small, intimate” group of 4-6 children will begin meeting for 12 weeks at PHS starting March 3.

“Kids with medically complex siblings need a support group, because it is possible — though not guaranteed — that it could feel quite isolating for a kid to see all the services and attention that their sibling is receiving,” Handlos said. An able-bodied sibling may wonder, “‘Why does my family look different from little Jenny’s family?’ A group like this helps build support within the community and limits that isolation for the child — and their parents.”

This sibling support group is a new direction for PHS, which has for the last quarter century focused on helping children whose complex medical conditions used to mean that they would require long-term hospital care have the option of being cared for at home. The agency’s focus has always been on the medically complex child, not on their family members. With this support group, the program is branching out to able-bodied siblings and parents.

“Our motto has always been ‘Taking care of the child,’ ” Handlos said. “That’s always been our focus. This new service is about taking care of the child’s family members as well.” Only children will attend the support group meetings, but at the end of each session, there will be a special debriefing time set aside for parents.

“The kids will stay and play with each other,” Handlos said (a social work intern will supervise), “and I will meet separately with the parents. We’ll discuss what I worked on with the children and what reactions parents should look for. Each support group session will always include a ‘feeling of the day’ with an activity. We’ll provide normalcy to a variety of feelings. We’ll also discuss feelings about having a brother or sister with complex needs. We’ll break that all down for the parents.”

A friend in need

Mussehl continued to feel isolated from her peers until one day, when she was in fourth grade, a new girl came to her school.

“Her sister had had a stroke at a young age,” Mussehl recalled. “She understood what I was going through with my brother in a way that the other kids didn’t. She and I became best friends and a support team for each other. She let me know her information and I let her know mine. That was the only thing I had. There were no other support groups available for me, even in the hospital world. If I didn’t have my friend, I would’ve been alone.” 

One of the major stressors in Mussehl’s childhood was the fact that her parents needed to spend time apart while Andrew underwent major medical treatments. “Every time my brother got sick and had to go to the hospital, we basically had to have a split family,” she recalled. “My mom stayed with my brother and my dad took care of me.” The situation was tough, because even though she knew her brother needed special care and attention, and even though her dad was a warm, comforting presence, Mussehl still missed her mom. But there was no other option for her family.

Today, Mussehl, works as a licensed respiratory therapist at PHS. (“My brother inspired me to be become a respiratory therapist,” she said.)  She thinks a support group for kids in her situation would have made her growing up years much easier. Though she had her friend to lean on for support, “I would’ve liked to have more information about how to be able to cope with these issues and be able to communicate better with my parents so they could help me deal with feelings as they came up,” she said.

Mussehl’s work brings her into homes that feel much like hers did when she was growing up.

“I always feel so sympathetic toward the family, especially the siblings,” she said. “I have the empathy of knowing what those kids are going through, of having new equipment and supplies being brought into their house. I feel for the parents, too.” No one expects that their parenting journey will take such a turn.

Group participants’ siblings do not have to be PHS clients, Handlos said. And the medically complex siblings don’t need to have as severe a disability as Mussehl’s brother. “We have a large population in our own client base that would be a good fit for the program,” she said, “but it will be open to any child with a medically complex sibling.”

These days, other sibling support group programs exist in Minnesota, but this is PHS’ first attempt. Handlos feels confident that the group will take off, and hopes to eventually expand the program’s support-group offerings to a “full-hour parent group and also a group for older kids.”

The support groups might help create a network of caregivers, of people who love their medically complex children and siblings, but who also need help and support to live happy, healthy lives. Caring for a child with serious medical needs is hard: It’s OK for parents and siblings to feel jealous or frustrated or even angry.

“What I worry about is not the acting-out behaviors that people might see or witness,” Handlos said. “I worry about the internalization. With these groups, I want to help children and parents express their feelings and get in tune with how they are feeling. I want them to find the support they so desperately need.” 

Shared responsibility

As Mussehl grew older, she accepted her familial attention imbalance as a fact of life.

“Because of my brother’s needs, he will always get that full-on undivided attention,” she said. “He needs that. I don’t. As I got older, I got more proud of him and less jealous. When I was in high school, I played basketball. When he came to the games, I was proud. I liked to introduce him to my friends.”

These days, Mussehl is married and long out of her parents’ house. She and her brother are close; he still lives at home, and when her parents need extra help, she steps in. It feels good to help — and to spend time with her little brother.

“When my parents are out of town, I’m the primary caretaker,” Mussehl said. “My parents have been so wonderful with him: It’s hard to fill those shoes. Sometimes it is worrisome stepping up to the plate, but at the end of the day, I feel like I’m responsible for him, too.”  

Comments (1)

  1. Submitted by Emily Cameron on 07/21/2016 - 06:21 pm.

    Wonderful!

    Kelly, how wonderful that you chose the field that you are in! I’m sure you are having a huge impact on these families since this is something you understand being a sibling of someone with a disability.
    I also have a brother with a disability. I internalized my feelings rather than act out. My parents didn’t realize the impact it had on me until my adolescence. I was starved for love and attention. I have a daughter now and my parents love on her very much She loves her uncle so incredibly and there’s no jealousy there 🙂
    So refreshing to see there are some support groups out there for young siblings as it is vital.

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