by Christina Medvescek

Siblings of children with neuromuscular diseases have a distinctive growing-up experience that shapes them in positive and, in some cases, negative ways.

It used to be thought that unaffected siblings would grow up “maladjusted” because of a lack of parental attention. But more recent studies have found that siblings’ adjustment level is generally good.

But the sibling experience isn’t easy, especially as children see their affected brother or sister decline physically. Sadness, resentment, jealousy, embarrassment, frustration, guilt and not a little fear — all are part of the story.

Siblings usually have the longest-lasting relationships in a family. It’s not uncommon for an adult sibling, having outlived the parents, to take on caregiving responsibilities for an affected brother or sister.

Families that foster a climate of security, belonging, love and caring — all the positives of a healthy family system — generally have children who cope well with the daily realities of neuromuscular disease, says Arden Peters, a psychologist who ran an MDA family support group in Wichita, Kan.

But a good family climate can’t guarantee that kids won’t struggle with their difficult roles. Signs that sibs may be having trouble coping include: greater-than-normal bickering, anger, jealousy and complaining; acting out at school or home; sleep disturbances; clinging; and (ironically) overachieving and trying to be “perfect.”

How do you set a good family climate?

• Be open and honest with kids about the disability.“Parents should openly communicate about the disease process, treatment regime and especially their feelings,” says Laura Frobel, a social worker and MDA support group leader in Warwick, R.I.

  When younger kids start asking questions about death, they’re ready to begin talking about it. If older children haven’t asked about death, maybe they’re worried they’ll cause something bad to happen by bringing it up.

  “Children need to know that when parents cry about such things, it’s a sign of love and the children have done the right thing, not the wrong thing, in talking about it,” Peters says. “They need to know that Mom and Dad can handle tears and the child should never try to protect them.”

• Listen. Kids don’t always need you to fix things. A sympathetic ear and a hug can go a long way. Be strong enough to bear their “bad” feelings.

  Aays one mother, “After our son got his diagnosis, my oldest daughter asked if he would be in a wheelchair. She was concerned about him, and also about her being embarrassed. As much as I did not want to hear that, I had to let her express it.”

  Counseling can be a valuable tool for some kids, but nontalkative kids may just need to know they can talk to you if they need to.

• Treat them as individuals. “Outside the home, children strive to be as much like others as possible. Inside the home, they want to stand out and feel special,” says Becky Speulda, social worker and MDA family support group leader in Portland, Ore.

  Don’t lay on guilt by emphasizing how much luckier they are than their affected siblings. Find time to connect privately with each child. Give them private space. Take vacations that cater to their interests, not just built around hospital visits or physical limitations. Help them connect with a caring adult who is there just for them. Let overachievers know you love them for who they are, not what they do.

• Don’t expect children to assume adult roles. Caregiving is a character-building experience and many sibs say they’ve benefited from it. Too much caregiver responsibility robs siblings of their growing-up experiences and can make them bossy and authoritarian.

  How much is too much? The key is that the parents remain in charge, and that they ensure helper siblings get to be kids, too.

• Remember they’re young. Even though they understand intellectually that their siblings with disabilities need more attention, children don’t yet have good emotional control and often act immaturely. Be patient.

• Plan for the future. Even if you have few assets, it’s important to draw up a will, appoint guardians, outline your wishes for the affected sibling’s care, and establish a special needs trust, in case your affected child outlives you. Even a small inheritance can derail state and federal disability benefits, putting an additional burden on siblings. In addition, talk with older unaffected children about their possible status as carriers of a genetic neuromuscular disease.

Excerpted from The Other Children in the Family, Quest, January-February 2004, ©2004, Muscular Dystrophy Association Inc.