This post is adapted from an article that was written for our newsletter a few years ago.
When a child in the family is born with special needs or diagnosed with a disability, one of the first questions frequently asked by parents is, “What will I tell the other children?” At some point in time, parents must decide how they will share the news with other family members. The questions that arise are typically, when do I tell, what do I tell, and how much shall I tell? These questions do not seem easy to answer, yet for many families the experience has been much simpler than anticipated. After all, with children of all ages and abilities… predictability can be very unpredictable!
Many families choose to tell others when it becomes clear that the family is being impacted by the disability or diagnosis. There are as many variables as there are families. If a diagnosis requires a lot of medical intervention, the impact is very evident on a daily basis. If parents are devastated or overwhelmed by the news, it may be difficult to hide these emotions from others. If the family is able to return to a pattern similar to what was routine prior to a diagnosis, then telling a sibling may not be an immediate concern. Should the diagnosis present upon the birth of a new brother or sister, the family will already be experiencing adjustment or “growing pains” related to having a new baby in the house. Parents report that their rule of thumb is to only explain as much as the sibling needs to know or is curious about. The age of the sibling provides fairly good ground rules for deciding when, what, and how much to tell.
Preschoolers cannot always share their feelings with words, but their behavior may speak loudly! Keep explanations simple and centered around the interest or curiosity of the preschooler. They may not be able to understand that their brother or sister has special needs, but they will understand that the extra care may be taking Mom and Dad’s time away from them.
School age children can understand a lot and require explanations that may be more involved. Proper terms can be used with the school age sibling. What can be shared with a second grader will not be as comprehensive as what will be shared with sibling in the sixth grade. They may experience guilt at being the “healthy child” or they may be embarrassed. They can also feel guilty about being embarrassed. The emotions of the school age child are broad and changeable.
Like a preschooler, teens can be very self-centered. Teenagers like to “fit in” and not be perceived as different from their peers. They have the ability to question the impact of the diagnosis on the family and the impact on their future as an adult. Some teenagers have explained that, as much as they love their sibling, there were times they felt their responsibilities as a sibling were a lifelong sentence.
Parenting a child with special needs may require more time and attention and it can sometimes be challenging to meet the needs of the typically developing siblings at the same time. Here are some ideas from local parents that help their households to stay balanced:
♥ I let friends and family help by taking care of my child with special needs so I can devote time just for each of my other children.
♥ Make sure every family member has responsibilities at home, even the child with special needs.
♥ Encourage friendships and interests outside of the home.
♥ We make sure to all eat dinner together as often as we can.
♥ I answer all her questions with honest answers and try to watch for signs of concern or worry.
♥ Because of my daughter’s medical needs, we can’t always do things as a family, so sometimes we leave her with a caregiver while the rest of us go places. This was hard at first, but she is happy and has fun, so we are too!
We are currently exploring some options for offering programming or support groups for siblings of people with special needs. If you have any feedback on what types of programs you would like to see at Alpha please reply to this post and share your thoughts with us! We would like to be able to provide supports to siblings of all ages.