“Help! I will have a house full of relatives over the holidays. I know exactly what will happen and I don’t know what to do about it. Everyone will shower lots of attention on my daughter with special needs and basically ignore her younger sister. It makes me so mad! Any ideas?” – Mom of a child with developmental disorder. “My five-year-old son had to go to the hospital and I stayed with him. His older sister was so angry with me for leaving her that she wouldn’t even look at me when she came to visit the hospital. What can I do to get her over her anger?” – Mom of a child with cystic fibrosis,
Special needs kids face plenty of special challenges and so do their siblings. According to Don Meyer of SibShops, much of the medical world is focused on the affected child and siblings are often forgotten. Don points out that brothers and sisters are too important to ignore for many reasons including the possibility that they will be in the life of a child with special healthcare needs long after parents and other caregivers are gone.
So how can parents nurture the sibling relationship, take care of the affected child and manage to squeak in a little time for parental self-care? It’s not easy, but understanding a little bit about relationship dynamics and having a good parenting toolbox can go a long ways.
When healthy children live with a special needs sibling, whether that child has psychological, neurological or medical problems, they naturally have an understandable potpourri of feelings that swirl within depending on the situation, the family culture and their mood at the moment. Such feelings may be love, resentment, protectionism, feelings of helpfulness and hopelessness interspersed at times with “just wishing my sister would die!”
Surprisingly, although children “lean” toward one feeling or another, parents consciously or unconsciously validate certain feelings and those are the feelings that become most habitual or primary. In our book, Parenting Children with Health Issues we note that there are various unconscious and insidious ways parents, without realising they do so, validate dysfunctional or unhappy feelings in the healthy sibling. We can look at one example here:
Understandably, parents may vibrate feelings of guilt about the time and energy they must spend on their special child. This encourages blame in the healthy sibling. So a mother might respond to an upset sibling with: “Paul, honey, I’m sorry, but Nate needs a lot of my time right now.” Especially if this is said with a tone of slight plead, the response of most healthy siblings will be, “Well, it’s not fair! You should be spending more time with me!” How different this is than when the parent says, with love and understanding, “I understand that you’re frustrated. And I appreciate your understanding about the time Nate is taking right now. Not every kid could handle it so well. Thanks.”
When confronted with a child’s upset feelings, there are two common mistakes parents make: They validate the child’s upset by responding with too much sympathy or defensiveness or they invalidate the child’s feelings by dismissing their concerns. The solution? As shown in the example above, respond with empathy and acceptance of the child’s feelings while not giving approval of “acting out” behaviours and giving the child the “you-can-cope message.”
One of the best gifts a parent can give any child is the ability to cope well with the challenges life throws their way. As adults, we know that life will always have problems and frustrations but it is how we handle them that will ultimately determine the quality of our lives.
When children have the experience of coping well with problems, they are confident and they take responsibility for their lives. It is too easy for siblings of disabled kids to take the victim position: “If it weren’t for John’s illness, my life would be easier” or “If it weren’t for Susie’s disability, I’d be happy,” etc.
There are a number of ways that parents can help the healthy siblings of a special needs child to cope:
- Parents need to spend some individual time with the healthy child. Parents may need to play tag-team to do this. Even a quick dinner at McDonald’s can be a time of important one-on-one connection.
- Expect (with great appreciation) that the healthy child will help with some of the necessary routines concerning their brother and sister and other jobs around the house. Chores are an important way all kids to contribute to the family and human beings love what they contribute to. But be sure to pay a child for special duties above and beyond what is usually expected and keep expectations reasonable.
- When and if the child expresses negative or angry feelings listen with acceptance, not necessarily approval. Everyone needs time to vent and wants his or her feelings to be accepted but that doesn’t mean parents have to agree with the content of the complaint. Words that show acceptance without necessarily agreeing with the feelings are:
Thanks for letting me know how you feel.”
I appreciate your telling me these things.”
I can understand that you feel that way”
- After listening, questions may help children move toward resolution:
“How long do you think you’ll be upset about..?”
“What is your plan for handling..?”
- Special needs children may require more than average physical contact from their parents and siblings are sure to notice. Make sure you give the healthy child equal touch, hugs, and eye contact.
- Be sure siblings are getting accurate information about the disability or disease. Where there is a lack of information, kids often fill in the gaps with misinformation or they might blame themselves for causing the problem.
- It is helpful to educate extended family members, schools contacts and close others about the siblings’ special challenges and needs. But be sure to talk this over with the sibling first - especially an older child. Make a plan together ahead of time about the best way to handle those family members who are coming for the holidays! This will reduce stress and hard feelings.
- Make the effort to find out what your children need as individuals; there many good books on personality styles. By becoming aware of your child’s personality style, you will be more able to respond effectively to the behavioural or emotional challenges that come up. You might think that the sibling who is spending time all alone in his room with his books is depressed- and that might be the case. Or it might be that your child is an analytical introvert who simply prefers books to people! Take the time to understand who your children really are.
So, as you navigate the ups and downs of family life with a special needs child, keep these tips in mind:
Remember that the siblings of special needs kids are kids first.
Before “blaming” sibling problems or family issues on the challenges around living with special needs, first see if there is another reason that is unrelated to the special needs. Maybe the sibling is acting out because he or she is having a hard time at school or a problem with friends or a girl/boy friend. Look at the whole child first, before assuming that it is the issue of special needs that is causing the problem. Again, when parents feel guilty, the situation is more easily confused.
Parents set the model for good problem solving, conflict resolution and coping skills.
The children will learn to cope with hard times and the sibling’s special needs by watching and learning from the parent. Does a parent whine and complain about the situation? Is a parent angry and frustrated? Do the parents fight with each other over the problems? Do they “blame” the ill child for their financial, marital, and relational problems? If so, you can bet the siblings will, too.
Parents must take good care of themselves.
Not only is this important to avoid burnout but again, it sets the model for the children. This means that parents take the time for date nights and self-care time. This also means that parents do not tolerate disrespect from the children (or each other). They set healthy boundaries around the many demands that come with raising a disabled/ special needs child.
Focus on thankfulness and the positive.
Foster a spirit of helpfulness, cooperation and appreciation for each other and the blessings that are present. Make it a practice to count your families’ blessings together each day: jobs, a roof, food, medical insurance, freedom, friends and family, resilience, compassion, depth, love, faith and hope.
Learn effective parenting skills.
Parents must have good, effective parenting skills to rely on. There is no substitute for knowing how to defuse arguing, setting limits without causing power struggles and communicating about difficult issues.
Don’t always make ill/disabled children the focal point of the family.
They are a part of the family, not the family. Don’t define/ label yourselves as parents of a child with a disability. We are all people, first, with hopes, dreams, fears, needs and gifts.
Don’t overcompensate for your guilty feelings of not being able to spend enough time with the siblings.
Some parents try to “make it all better” with material things and not setting limits when it is appropriate to do so. This creates more problems than you actually solve. Entitlement (aka “spoiled child syndrome”) can become a real danger in homes with special needs kids because it leads to kids who become hostile-dependent. This is when people think they are entitled to something and when they don’t get it become angry, resentful, blaming and bitter. We’ve seen far too many relationships destroyed by these sad responses.
It is true that in the end, siblings will be there long after parents are gone but a parent’s influence, both positive and negative, can last generations. By purposefully nurturing relationships and responding effectively to the challenges that arise, parents can leave a legacy of children who grow up to be responsible, resilient, independent, and supportive.