Huntington's disease, known as HD, is a genetic brain disorder affecting one in 10,000 people in the US. Symptoms of HD include mood changes, memory deficits, and involuntary movements. As of now, there is no cure for HD and it is eventually fatal. Families affected by HD have additional stressors when children are involved. Parents and caregivers may feel the best way to protect children is by shielding them from the knowledge that HD is in the family. While many might think this coping style may benefit the family by avoiding distress at that time, it's unfortunately quite detrimental to the child in the long run. Let's discuss why.
First, a child has the right to know about anything that affects the family. By not sharing this knowledge, children learn there is limited trust in the family. Even if the topic of HD is not discussed children may recognize that there is something wrong. They may even have fears that are far worse than the reality. For example, they might imagine that they did something to cause a family member to become ill. In turn, the child might develop anxiety and guilt. Not talking about HD also gives the message that it is a subject too terrible to discuss. If HD is not discussed within the immediate family it is almost certain to come up somewhere else. Sooner or later children will find out the truth. HD and other genetic illnesses are continually highlighted in the media. Genetics is also a topic that comes up more and more in school curriculums. It takes a lot of energy to "hide the truth". When you attempt to hide HD you spend more energy trying to remember what you have said. In contrast, when you talk openly about HD it's easy to be consistent. Furthermore, it is important to know that children who are informed about HD can be a great comfort to you. Remember, children have an amazing ability to deal with difficult situations. Fears are learned. If something is hidden from a child, the message they get is that this is scary. If a child is told what is happening, it becomes part of their normal routine and there is no need for them to be afraid. Instead of pulling away from the person with HD due to fear, children are empowered to continue to show affection and respect towards that person.
Who Might Best Talk to Kids About HD
If you are capable of doing so, you should be the one to tell the children. There may be reasons why this is not possible. If that is the case, then the next option might be a well-informed, family member or friend. The important thing is to insure the child feels comfortable with this person AND that person is well informed about HD.
If neither of these options work then you might decide to have an HD-educated professional healthcare provider help you talk to the child. It can be helpful to first give the child basic information as to why they will be meeting with this person. If the child did not expect to get this information it would be scary for them to meet a new person in a new place and have that person tell them someone in their family is ill.
When Should I Tell the Kids?
Children can be told at any and all ages. Obviously, the younger the child is, the more basic the information should be. The earlier you talk about HD however, the more normal it will be for the child and they will be better able to participate in changes within the family later on.
How Should I tell the Kids?
The way you feel about discussing HD with your children will likely be based on your own experiences of how you learned about HD. Do you feel confident that you can create a positive experience or are you feeling angry and resentful? If you are feeling angry, please consider talking to a professional about this. Working out these feelings before you speak to your children will not only benefit them, it will go a long way to empowering you in the days ahead.
ALWAYS THERE: Tell children they will always be loved and cared for. Besides having children worry about you and other family members, a child is likely worried about what will happen to them if you are not available.
What and How Much Should I Tell the Kids?
Remember that you will eventually need to talk to children of different ages in stages. A good idea is to begin the basic conversation with everyone present. You will be giving the unconscious message that no one in the family is being left out. Provide basic information such as the name of the disease to everyone first. Later you can talk to each age group in more detail. Make sure you think the conversation through in advance. Anticipate the tough questions and practice your answers. Detailed, appropriate information is available at multiple sources, including the Huntington's Disease Youth Organization (HDYO). It is important to know that the experience of talking to kids about HD is almost always less distressing than the anticipation leading up to the talk. All the things you are thinking about and all the fear you experience in having this discussion usually go away once you begin to talk to your kids about HD. Realize, however, this is not a one-time discussion. This topic will need to be revisited to make sure everyone in the family has the most up-to-date information and a chance to ask questions.
Tell Children Information They Can Understand
Gradually share bits of information with children. Like feeding a baby, give kids a small amount at a time and observe whether they take it in. Tell children they will always be loved and cared for. Besides having children worry about you and other family members, a child is likely worried about what will happen to them if you are not available. Assure them their needs will be met. Always leave a conver sation with a feeling of hope. Now more than ever there is hope that we are getting closer and closer to treatments and a cure. Let children know that scientists are searching for a cure for HD every day.
Listen to Children
If a child asks questions, listen to what the real meaning is behind the question. Answer their questions simply. It is very helpful to ask children what they think HD is once you have explained it to them. One way is to say, "I need to make sure I did a good job of telling you what HD is. Can you tell me what you heard me say to you?" This provides an excellent opportunity for you to correct inaccurate information or impressions.
You may also want to ask kids directly whether they are worried about you or the affected family member. It is important to recognize that children don't want their parents to think they are concerned about them. They think this will over-burden their parents or make their parents feel sad that the child is afraid about the future. If the child says, "No, I'm not worried", you can say something like, "Well, I want to let you know, when I heard about HD I was worried. I found out that it is normal to feel this way. While we can't make the HD go away we can support each other. So, if you ever feel this way, I want you to know you can always talk to me".
me". Many parents fear they will say too much. That is also a normal feeling. Parents and caregivers know their children best. Once you see the classic "glazed over" look it is a good time to stop and say, "I have gone over a lot of information today. Do you have any questions so far?" If not, tell the child you will check back with them in a few days and continue the conversation.
Things Not To Do
• Whatever you do, don't lie. Lying takes a lot of energy. When you are honest you don't need to burden yourself with the added stress of trying to keep track of what you said.
• Don't overburden children with a lot of medical details. Give facts but keep them simple. One helpful tip is to say to a child, "Did that answer your question?"
• Don't trouble children with financial concerns unless it impacts them directly.
• Don't make promises you can't keep. Telling a child that you promise they will not have HD or promise that you will always be able to care for the person with HD can be misleading. This can lead to profound resentment later on. It is much better to say that you will do everything you can to make sure the family member gets the proper care they need.
• Don't be afraid to say "I don't know." All that means is you either need to get the answer from someone else or that no one knows what will happen in the future.
• Don't push kids to talk. The goal is to provide a safe place for kids to come back and talk when they have questions. Be one step ahead of kids and tell them you understand they might feel more comfortable talking to their friends however if they have questions or concerns about HD you can connect them to people who talk to kids (like HDYO).
• Don't trust everything on the Internet! Tell kids to beware of the Internet and social media. There is a lot of information out there about HD and not all of it is correct. Guide them to trustworthy information if they want to explore on their own (HDYO.org).
Ways to Talk to Kids About HD
Feel free to use language familiar to you but be cautious that the child doesn't become confused. If you use the word "boo-boo" for a scrape or cut you might not want to use this to describe HD. It can be better to label HD right away so the child knows this is different. You might say, "Daddy has an illness. It is called Huntington's disease, or HD".
Dealing with Changes
It is important to gradually let children know that there will be changes in what the person with HD can do. Work and driving are two such issues. Letting children know about these changes just prior to a parent stopping work or driving is enough time for them. It will be take time to adjust to these changes but you don' need to worry them too far in advance. Again, let them know their needs will be taken care of even if it is not in the usual manner. It is helpful to be flexible and have back up plans since behaviors due to HD might cause plans to change. The more you are prepared the easier it will be to have the rest of the family work together. Think through all possibilities and plan for changes even though you are hopeful these "emergency plans" will not need to be used. Let children know there might be changes in family plans that are due to HD as an illness, not due to the person with HD.
Continue to show kids you love them by continuing to set limits for them. It is normal to see some acting out when there is a crisis in a family. If children are anxious, fearful, or regress in their behavior, it is a good idea to seek out professional support. Take time to share special moments together as a family and to laugh. Besides creating positive memories, you will also be giving your children a gift. You will be teaching them it is okay to find enjoyment even in the midst of sadness. If you take care of yourself you can then take care of your children and you can teach your children to take care of themselves.
A Silver Lining
Children who are aware that HD is a normal part of their lives may become more self-confident and independent. They may become sensitive to the needs of others and become more responsible. It is possible for children to grow in their ability to understand and love another person despite the differences or limitations. Sharing information with all family members, including children, is important and empowering.•