Lately, finally, stories about the challenges of being a sibling of a child with mental retardation and/or mental illness are emerging in the press. With that increased visibility has come a dawning cultural awareness of just how difficult it is for families to maintain their balance as they try to care for, educate, and manage their disabled children and, at the same time, provide for the needs of their other children. There’s no question about it: It’s hard; very, very hard.

Adult siblings are now speaking out about what they needed and, in many cases, what they missed as kids. It’s not a question of love. Most report feeling loved by their parents and love for their sib. What it comes down to is a longing for information, protection, room to be a normal kid, and parental time and attention. To manage it, parents need the support of family, friends, and professionals.

Most of the following list is not new for any parent of both disabled and non-disabled kids. In pulling together information from many sources, not the least being my own experience, my intent is to provide a quick but friendly reminder to fellow parents about practical ways to support all of our kids. The last thing any of us need is more guilt about what we’re not doing. But it sometimes helps to have an organized way to give ourselves a check-up with a check-off list.

INFORMATION

·        Non-disabled children need information presented with sensitivity to their age and stage. Young children need a simple, straight forward explanation of why their sibling can’t do the things other kids can do. Older children are able to understand nuances and feel more respected if given the full story. In recent years, many story books have been published to help children make sense of their family’s situation.

·        Sibs need specific instructions about how to handle it if other children tease or provoke their disabled sib or tease them about having a disabled brother or sister. They need to have an age-appropriate way to explain their sibling’s condition and behavior to those who are only curious and they need to have some strategies for extricating themselves from those who are mean.

PROTECTION

·        Non-disabled sibs need specific instruction about how to handle it if their sib starts behaving in unusual or harmful ways. Younger sibs are often smaller and weaker than the disabled child. Clear directions about when and how to protect themselves and when and how to just leave make everyone safer. Parents need to remember to update these instructions as the disabled child grows and/or shows new behaviors and as the non-disabled sib matures.

·        It the disabled child is intrusive or destructive or aggressive, the siblings may need locks on their doors or a special locked cupboard or box for special possessions. They have a right to some privacy and a safe place to retreat to. They have a right to have their things protected.

ATTENTION TO NON-DISABLED KIDS’ NEEDS

·        Parents and other caring adults need to regularly take a moment to stop, take a breath, and take the emotional pulse of all the children in the family. When stressed by the multiple demands of caring for a disabled child, it is understandably easy for the other kids to be lost in the shuffle. Setting aside a few minutes at a regular time each day to stop and think hard about how everyone is doing is a discipline that pays off.

·        Siblings need to be allowed to be kids as much as possible. This means limiting the amount of time they are expected to help provide care. When they do help out, their efforts need to be recognized and appreciated, not taken for granted.

·        Siblings should not be expected to always include their disabled sib in their play with others. Certainly they can be expected to be kind and to share their playmates some of the time. But they also need opportunities to play at their own developmental level without having to worry about their brother’s or sister’s needs.

·        Sometimes siblings need to be reminded that they don’t have to be perfect to be good enough. In their efforts to relieve their parent’s stress or to compensate for their sib, they may become extremely anxious to do well. This is a tough one for lots of adults because we want our children to excel. It’s important to be aware of when the good performance is on over-drive.

NEED FOR PARENTAL TIME AND ATTENTION

·        Non-disabled children need time with their parents separate from the disabled child.  One of the best gifts a friend of a family can give is care for the disabled child so that the parents can attend their other children’s events or just hang out with them for awhile. Even occupying the disabled child in the living room so that the other children and parents can go out in the yard can provide much needed attention for the sibs.

·        Don’t under estimate the importance of alone time with a parent. It doesn’t have to be anything special. Just going grocery shopping can be extremely important if time in the car and time going up and down the aisles is also spent getting caught up on what’s new.

·        Non-disabled children need validation for their feelings – all of their feelings. Yes, they should be praised and supported for their help, love and care for their less capable sib. They may need their parents to encourage the expression of their frustrations, anger, and confusion as well. They may need reassurance that their feelings are okay and that they are not in any way to blame for their sibling’s illness or condition.

·        There is a limit to how much and how often a non-disabled child can be asked to “understand” that the sib’s needs come first. It’s important to find ways to respond to the non-disabled child “first” at least now and then.

SUPPORT FOR THE KIDS – AND THE FAMILY

·        The non-disabled child needs other influential adults who can be supportive of their growth and an activity that provides them time out from the family stress. They  may need to be encouraged to develop an interest that takes them out of the home regularly and where they can have an identity separate from their disabled sib. This can be membership in a sports team, in a band, with the Boy or Girl Scouts, a youth group, a theatre company, a dance troupe, etc.

·        Participation in support groups for sibs of disabled kids can provide a special and valued peer group. Just as adults find it helpful to talk to other adults who share the same problems, these kids find relief in having a place where they don’t have to explain everything; where their feelings are accepted and understood.

·        Parents need to develop a network of helpers so that time for other children is more possible and predictable. Disabled children are more likely to manage having their parents out of sight for awhile if they are with a familiar person they like. Families need to work on developing relationships with a number of “ sitters” so that they are not left high and dry when someone moves or moves on. It’s important to use the network often, even for small pieces of time. The care-givers need to get acquainted with the disabled child’s needs and to see themselves as being a “regular”. The disabled child needs to get used to being left with his or her “special people”.

·        Family counseling is not just for troubled families. It can also be a vital support for overwhelmed or stressed parents and children. A regular weekly time with an experienced counselor can help parents and children express their feelings and develop effective ways to solve family problems. The sessions provide a predictable time to address important issues that might otherwise be relegated to “when we get around to it”.

·        Parents need to practice finding silver linings whenever and wherever they can. We know from the research on resilience that people who engage with their problems and who find ways to give them some positive meaning have better self-esteem and generally are more successful in life. Kids need parents and family friends who can model finding positive aspects to the situation.

Finally, we take better care of the kids when we take good care of ourselves. It is not selfish to find ways to go to the gym, go out with friends, or have a parental “date night” once in awhile. Without a break now and then, it’s difficult to find the energy and inner resources to keep on keepin’ on. Staying on top of the needs of all the children in the family is a tall order.