Caring for Your Other Children

Children are just as affected by their sibling’s diagnosis as the rest of the family, and it may be hard for them to sort through their feelings and concerns. Talking about the diagnosis and letting to them share their feelings will help them to understand that their sibling will be okay, and that they will be okay, too.

• Talk with your children about their brother’s or sister's diagnosis, including the behaviors and symptoms that are part of the diagnosis.
• Encourage their questions and listen to their concerns.
• As you learn more about your child’s diagnosis, teach your other children about it, too, and reassure them that they can share the information with others when they feel ready.
• Help them understand that their sibling’s diagnosis is nothing to feel ashamed about.
• Let them know that it’s no one’s fault.
• Let them know that their feelings are important. Seek sibling support groups or "sibshops" in your area to help your children connect with other kids who have siblings with disabilities. Sibshops help kids accept and understand disability and consider it "no big deal."

As a parent, it may be hard to understand or deal with some of the feelings that your child may have toward his or her sibling with special needs, and you have your own feelings to deal with as well. Give everyone in the family time to work through their feelings, which may be different at various points during a child’s development. Such feelings may include embarrassment, sadness, anger, denial, and fear. You can best address your child’s feelings by being patient, listening and accepting these feelings, letting them know their feelings are valid, and helping your children manage their feelings in a healthy way. Sometimes this means simply going about your daily routine to show that your child’s feelings are normal. Sometimes it means having a difficult conversation with your child.

You can also help by encouraging your children to invite friends into the home when they feel ready to do so. In one family, the siblings don’t bother to tell friends about their sister, who is in a wheelchair and does not talk, before the friends visit their house; if the friends don’t tolerate this experience well, they “aren’t worth it as friends.” The parents in this family provide quiet support by being present to answer questions as necessary. However, this might not be the type of support your children need; there is no one “right” way to support your children and their friendships. For some children, talking with friends in a casual and positive way about their sibling with special needs before the friends’ visit will offer a better chance for those friends to understand and learn.

Occasionally, it may be helpful for you to simply acknowledge something your child is feeling—to voice that yes, it is a bummer that your child with special health care needs had a "meltdown" at another birthday party, or that it is disappointing that a holiday celebration has been cut short because of a visit to the emergency room. Acknowledging such feelings (and that you may share those feelings at times) may help a sibling see that his parents understand, and he may benefit from hearing her own feelings expressed by you. It is important to be honest about your own feelings, too, and sometimes that means expressing disappointment or frustration along with love, support, and an understanding that some needs are necessary, even when it is not so fun.

Sometimes siblings of children with special health care needs will feel embarrassed and/or responsible for public perceptions of their sibling, such as people staring or using unfriendly language that hurts their feelings. In these situations, try to model your best behavior and discuss proper responses with your children later. For example, to help a child manage her feelings when someone has said something inappropriate, you might offer both an acknowledgement and a suggestion for how to handle the feelings: "I know you are angry, but it’s not okay to punch Paul. He wasn’t referring to your sister when he used the word ‘retard.’ Instead, you can tell him about the Spread the Word Inclusion campaign."

Make sure that your child has a safe place to discuss problems, talk about moments of embarrassment, and be completely open with his feelings and thoughts without fear of hurting you or his sibling with special needs. Special time alone with parents, extended family, or other adults may be helpful. Counseling can also be valuable. There are support groups and “sibling workshops” that can be great opportunities to offer children a sense of normalcy and help them understand they are not alone - lots of other kids have sisters and brothers with special needs just like they do. The Sibling Support Project may be a helpful resource. The Sibling Support Project is also on Facebook.

One of the realities of caring for children with special needs is the cost associated with their healthcare. Financial difficulties are sometimes a reality, but it is best to avoid telling another child you “can’t afford” an activity with friends, a family outing, or extracurricular functions. Instead, you might suggest fun alternatives to expensive outings, which may be just as good.

Another challenge that parents face is how to deny the requests of their other children when sibling-related health complications take precedence. For instance, it is not advisable to tell a child, “We can’t go to the water park because it’s too difficult for your sister.” While this may be a legitimate reason for not choosing the water park as a family event, it is important not to place the blame on your child with special needs, as it could possibly create sibling resentment. A more appropriate answer in the situation mentioned above might be, "We will plan an outing to the water park when your cousins come to visit, but this weekend we’re planning a hike and a picnic in the park for the whole family."

One family with a good sense of humor is quick to point out to the typical sibling that the child with the disability has made certain situations easier for the family: "Your sister got us to the front of the line at the amusement park!” or “Your brother gets us the best parking spaces!"

Typically-developing children often want to assume a care-giving role with their sibling with special needs because they want to be an active part of their life and show that they are committed family members. Providing care for a special needs sibling can expand a child’s empathy for others and create a feeling of connection between siblings. However, take care that your child does not to take on too much responsibility. Young siblings may be given some care-giving responsibility if they offer to help, but it should be clear that this is the exception rather than the rule. Express gratitude, and let your child know that he is never alone in his efforts. Dismissing a child’s desire to help care for her sibling with special needs can result in isolating siblings from each other. Sibling relationships are special to children with and without special needs. Your goal as a parent is to help your children establish a healthy balance between care, responsibility, and support.

As they get older, siblings sometimes realize that they may someday need to become responsible for the care of their sibling with special needs. This is very real and can be sometimes overwhelming for both parents and siblings. As usual, the key to working through this issue is communication. Early and gradual discussions about the future are important. Make sure that your children understand the options, which may include someday having their sibling with special health care needs live with them if they choose, but also includes alternatives for them to live somewhere else. Discussions should emphasize that there is no single, correct answer to caring for a sibling, and decisions should be made together, always including the person with special needs and allowing them to have a voice if possible. Parents worry about burdening the typically-developing sibling with what they view as their own responsibility, but siblings often express their willingness and desire to assume the primary caretaking responsibility if the time comes.

Siblings and parents of children with special needs are very resilient. Every family may have a different solution to a problem, but most find a balance that works for them. The balance is not always the same, but changes over time, and needs to be actively nurtured by the family and the providers who work with them. As in most things, keeping open and active communication with your children will help all of them to know that they are loved and supported.