Siblings of Special Needs Children

Caring for the needs of both a typically developing child and a child with special needs may prove to be challenging, but having the knowledge and awareness of how to meet these needs can help lessen the burden. This section is intended to educate parents about some of the issues typically developing children face, and highlight issues for these children that, at times, go unnoticed. Consider the following issues with respect to the sibling of a child with a chronic illness:

• specific language used when communicating to a typically developing child about their sibling with special needs
• the importance of regular healthcare for siblings
• consideration of the feelings a child may have towards his or her sibling with special needs
• the importance of devoting quality time to a typically developing child
• sibling-as-caregiver issues

Language: Words To Avoid
One of the realities of caring for a child with special needs is the cost associated with their healthcare. Financial difficulties may be an unavoidable reality, but it’s ideal to avoid telling a typically developing child you “can’t afford,” an activity or an outing, as those two little words could lead to resentfulness, even toward a sibling with special healthcare needs.

Another challenge parents face is the choice of language when denying the requests of their typically developing child when sibling-related health complications arise and take precedence. For instance, avoid telling a child “We can’t go to the park because it’s too difficult for your sister.” While this may be a legitimate reason for not going to park, it’s important not to place the blame on the child with special needs, as it could create sibling resentment. Furthermore, a typically developing child may give up on the possibility of participating in desired activities, and may feel that her needs and wishes are less important than those of a sibling with special needs.

Language: Simple but Accurate Terminology
Parents may have a difficult time explaining to a typically developing child, especially a young child, exactly what development disorder, terminal illness, or disease their sibling has. While a parent can explain the health issues to the child, it may be difficult for the child to fully understand the information you have given her. Simple yet accurate language should be used when explaining a diagnosis to your typically developing child. The use of simple language will give her a basic understanding of their sibling’s needs, allowing them to comfortably relate the health issues of their sibling in social situations.

Healthcare for Typically Developing Siblings
Ensuring proper healthcare for a child with special needs can be a full time job that often takes priority within a family. At times, the healthcare of typically developing siblings receives less attention. Ensuring that a typically developing child receives regular medical and dental care is essential to their health, and is the best way parents can keep track of both physical and mental development milestones.

Sibling Embarrassment
Parents may find it difficult to understand the embarrassment a typically developing child may feel towards their sibling with special needs. Children will be children, however, and it’s important to allow them time to work through their feelings. Parents can best help address this issue by showing patience, acknowledging siblings’ feelings, encouraging siblings to invite friends into the home when they feel ready to do so, and by simply going about their daily routine. Eventually, most typically developing siblings will realize that they are a part of an average family that happens to have more responsibilities than most.

An additional way to handle this rather sensitive issue is to ensure that your typically developing child has a safe place to discuss problems, relate moments of embarrassment, and be completely open with their feelings and thoughts without the fear of hurting the feelings of their parents or sibling with special needs. Support groups and ”Sibling Workshops” are great outlets for typically developing children, as they offer children a sense of normalcy and affirmation that they are not alone in having siblings with special needs.

Make Special Time for Typically Developing Siblings
Caring for a child with special needs demands an enormous amount of time and energy from parents. To a healthy sibling, it may feel like there isn’t any time left for him. Taking just a little bit of time out of the day to devote attention to a sibling allows them to feel special, too. Taking time to watch a movie, read a story, or simply ask about his day, activities, and interests shows him that you are as in invested his life as you are in the lives of his siblings.

Siblings as Caregivers
One of the most common mistakes parents make is allowing or encouraging their typically developing child to assume a major care-giving role for his or her sibling with special needs. Typically developing children often take on a care-giving role because they want be an active part of their sibling’s life and show that they are a committed member of the family. Not allowing a child to help in the care of their sibling with special needs can often feel just as unfair as pushing that care-giving role onto a sibling. Families should strive to establish a healthy balance between caring for children with and without special health needs. Siblings may be given some care- giving responsibility if desired, but it should be clear that this is the exception rather than the rule.

Siblings often realize that they may ultimately become responsible for the care of their sibling with special needs later in life. This may be an overwhelming issue for both parents and siblings. The key to working through this issue, as with most, is communication. In this particular instance, early communication is necessary. A sibling must understand that as an adult he or she may become the caregiver for their sibling with special needs. It must be emphasized that the decision to care for a sibling with special needs (and in what capacity) is theirs. Parents should make sure that their typically developing child understands all available options, such as living with a sibling with special needs, home health resources when available and appropriate, and alternative placement settings outside of the home.

by Meredith G. Warshaw, M.S.S., M.A.

It can be difficult for parents to help siblings of special needs children to understand that parents are not favoring the special needs child, that he or she truly has severe learning issues, yet at the same time letting the NT (neuro-typical - a term often used to denote people who do not have special needs) children know that we empathize with their frustration.

It can seem unfair to a child when parents have different expectations for different children. There are no easy answers. One thing that sometimes helps is for parents to explain that that they expect the same amount of difficulty for each child where difficulty is measured by how difficult something is for the child, not the end result. For example, if one child were on crutches, it might be equally difficult for her to walk 1 block as it is for a child who is not on crutches to walk 1 mile. So, expecting different output (1 block versus 1 mile) is still expecting the same amount of work from each child.

Here are a few things that can be helpful:

• Let the NT child know that you understand that the situation is very frustrating and that it can seem that you have different standards for the special-needs child. Listen empathetically, acknowledging her needs and opinions. Realize that no one, not even parents, can realize how difficult it is to be the sibling of a high-maintenance child.
• Have the NT child try writing a 1-page essay using his non-dominant hand, being told it will be evaluated for content and spelling and neatness, and see how tired he is at the end, then explain that this is how his sibling feels after many academic tasks that would be easy if he didn't have his learning disabilities.
• Let the child tell you if any of the expectations you have for her seem unreasonable - not in comparison with your expectations of her sibling, but on their own merits. If she thinks something is unreasonable, listen to her argument and see if there is any room for compromise.
• Children with special needs often need extra attention from their parents, which can be hard on the NT siblings. If possible, try to schedule some special time for the NT child with one of his parents - he may feel that his sibling gets all the attention and he only gets attention when he's in trouble.
• Be sure that you are not expecting the NT child to hide her achievements in order to keep her sibling from feeling badly.
• Make sure that you recognize the NT child's achievements, not just his short-comings. Otherwise, he can feel that he is in a double-bind - he gets in trouble if he is not perfect, but does not get praise for doing well because that is what's expected of him.
• Don't expect your NT child to behave more maturely because your special needs child is difficult. The NT child is still a child with the same needs as her peers. Do the best you can to meet your NT child's needs; when you can't, let her know that you realize that she has legitimate grounds for being upset.

NT children may be angry about the difficulty of having a special needs sibling. In addition to taking away their parents' time and attention, the special needs child may embarrass his or her siblings at school or in other settings. NT children may also mourn the loss of the "sibling that might have been" had the special needs child been NT. These are normal feelings, and it is important to recognize them in an accepting, understanding way, and validate the truth of the NT child's experience. NT children may feel guilty for having these negative feelings; it is important to reassure them that there are no forbidden feelings, only forbidden actions.

Some areas have support groups for siblings of special needs children. NT children may find it helpful and reassuring to meet other children in similar situations and find out that they are not alone.