Raising a child with a disability of any kind can be highly stressful, but most parents step up to the plate and do what is necessary to take care of the needs of the child no matter how difficult it may be at times. The added stress and expense makes it hard for them, but they love the child so they continue to do what must be done. With everything going on, parents often feel that talking to the siblings of the child about what is going on may not be the best idea. How can you even begin to explain to children about disability? Would they even understand what is going on? Shouldn’t they be protected from the reality? How could talking to them about the reality of the situation possibly help anything anyway?

These are questions that many parents are faced with every day. Having a child with a disability is difficult to understand even for adults and the prospect of discussing the disability with the other children may seem like an impossible task. The truth is, that disability of any kind affects everyone in the family, including the other children. No matter how much we want to protect them, they already know that something is going on and they have no way of finding out exactly what. At a young age, children begin to notice things around them. They may see that Johnny is getting extra help and attention, but they don’t understand why. They know that he isn’t acting like the other children or that mummy and daddy are having to take him to the doctor a lot, but they don’t understand the reason behind it. They are left to speculate and come up with their own scenarios, which in many cases is worse than the reality. Talking to siblings about disability and keeping communication open between members of the family can help them to understand and cope with what is going on around them.

So why is it so important to talk to siblings about disability?

Without the facts, children are left to draw their own conclusions as to what is happening around them. There aren’t a lot of resources available to young children, and many times they end up learning about disability from others or believing myths that they hear about the problem. Many times, young children feel left out and neglected by parents and caregivers because of the extra energy and time that goes into helping the child with the disability. Without knowing why their brother is getting extra attention, they may feel like he is more important or that the parents care more about him than they do them. Many times, children growing up with a disabled brother or sister feel the need to over-compensate, become the protector, or take on more responsibility than they are ready for. They often feel a range of emotions including fear for their sibling, empathy, jealousy, embarrassment, anger, or even guilt because they can do things that their sibling can’t do. It is important to communicate with these children and provide reassurance and support for them as well. Helping them understand what is happening allows them to better cope with the situation. Children need a safe environment where they can feel free to ask questions and get answers that are simple and on their level.

Studies show that the way a family reacts to the disability has a profound effect on how children adjust to the situation. Parents in particular play a particular role in how the other children relate to the disability. If the family never discusses the problem in the home and they aren’t allowed to talk about what is happening they may interpret it to mean that the disability is a bad thing or something to be ashamed of. Many times, they come up with scenarios that are far worse than reality. They often develop a fear of losing the sibling with the disability because they have to have so much attention and need to go to and from doctors so much. Without having a reliable source to talk to they have no way of finding out what is actually happening. This can lead to the development of emotional difficulties and problems within these children. Talking about the disability in a positive environment helps give their siblings a sense of reassurance and inclusion.

Siblings of disabled children need to feel included in the situation instead of feeling left out and secluded. Many times parents of severely disabled children can find help to cope in support groups that are available. Researchers have found that including siblings in support groups and treatment helps them develop an understanding of the disorder and helps them feel connected to the situation and their family. It helps them to increase self-confidence and adapt to the situation. Including them in conversations and encouraging them to ask questions is important to their overall wellbeing and may have a positive effect on their relationship with their sibling.  This is why here at Little Miracles we are so passionate about involving the siblings in all of the activities.

When should you begin talking to children about disability and how do you even start?

This question is very difficult for most people to answer. Studies show that children who learn early about disability and grow up with early experiences of disability often adapt better and have a better relationship with their disabled sibling than those who don’t. Communication and discussion about disability should be part of daily life. Disability is not a bad word and it is okay to use the technical term for the problem. Keeping calm and talking in an encouraging positive manner is important as well when dealing with children. It is important to remember they are young and conversations need to be kept simple and on their level. Teach them that the disorder is not anything to be ashamed of and encourage them to ask questions. Create an open honest environment where they are free to express their concerns and ask about things that they don’t understand. If Johnny is Autistic and can’t really talk yet and they want to know why or start to mimic his speech, explain that children with Autism often have difficulty talking because it causes them to think and act differently but that Johnny is still ok and that it isn’t something he can control. Children may not be able to understand technical details but they can understand that Johnny’s struggle is not the same as theirs and he needs extra help because he has a problem he can’t control.

Parents often find it difficult to explain a disorder to their children, but there are resources available to aid them in helping children understand. There are numerous children’s books, for instance, that deal with disability. Using literature to aid in discussion can prove to be a valuable tool. If the child has autism, for example, you may pick a story like “My Brother Charlie” or “Ian’s Walk” both of which are stories related to children with Autism. Parents may want to read through the story and point out similarities between the character and their own child to help their siblings understand that this is common in children with this particular disorder. If a child has Down-Syndrome parents can choose a different book such as “My friend Isabelle” or “We’ll Paint the Octopus Red”. There are a variety of children’s books dealing with different disorders that focus on helping children understand what is actually happening. This is a good way to strike up a conversation with children about disability as well as spend some quality time as a family.

There are many times when real life situations provide opportunities for discussion with children. When they see their brother or sister with a disability struggling with a task, for instance, it is a good time to explain to them why they are having trouble and encourage them to help and support their sibling. Often just including them in the solution makes a world of difference in how they perceive the situation. When people don’t understand a disability, they may act and treat those suffering from it differently. As sad as it is children pick up on this and may have questions about why they act this way toward their sibling. It is important to let them know that people don’t always understand a problem and they don’t know how to react. Teach them that having a disability is nothing to be ashamed of and many times people aren’t educated enough and don’t always know how to react to someone with a disability. When children go to school, they may be confronted with questions from peers about their sibling which could lead to additional questions that need to be answered. The most important thing to remember is to keep the lines of communication open in any scenario.

No matter what the situation, it is extremely important keep open communication about disability between everyone in the family. Children need to know what is going on and feel included. They need a safe place to talk to adults and ask questions about the disorder and their sibling. They need to be reassured and confident in what is going on around them. The more they know the better able they are to cope. Avoiding conversations with siblings can be potentially harmful and lead to an increased risk of emotional problems and misconceptions about their sibling. Talking to them early on can increase their ability to understand the problem and learn patience.