Talking with children about HD and your family’s history is helpful at any age. It’s not easy, but having these conversations lets you and your family control the message and teach your child or children about this disease before they learn about it from other people or on the internet. Having ongoing, honest communication within the family about HD establishes trust. Your conversations will develop over time as your child gets older and the symptoms they are witnessing progress.
Children have an incredible ability to deal with difficult situations, and being honest up front lessens the burden on you to have to tip toe around the truth.
Kids who know about HD won’t need to be afraid of it. In fact, children who are familiar with HD and its symptoms can continue to show a person with HD affection and respect instead of pulling away from them out of confusion or fear.
These conversations can be hard, here are some tips to make it easier:
- Who should talk to the child?
- If possible, Mom and Dad should have the conversation. The next best option would be to have a close family member or friend start this conversation. The most important thing is to make sure the child feels comfortable with the person talking with them and this person is knowledgeable and has accurate information about Huntington’s Disease. If both these options are off the table, a professional healthcare provider can also help you talk to your child.
- Other family members and trusted friends may be great supports for your child. Seek out extended family members or very close friends to offer care and reassurance. Does your child have a close relationship with a teacher, coach or spiritual leader? If so, give them information about Huntington’s disease to help them understand what your child is going through. Then ask them to let you know if they notice any changes in your child’s behavior. Poor grades, not paying attention, playing alone or being aggressive can be signals your child is having a hard time and needs extra help adjusting.
- When you’re just starting to talk about HD, remember this is the first of many conversations.
- Before you start talking, learn as much as you can about HD. If you’re asked something you don’t know, promise to find out then reach out to HD Reach or another healthcare provider to make sure you’re answering accurately.
- Conversations can be emotional so pick a time and place when you’ll have few distractions.
- Be honest and focused on the here and now.
- Share what you know, but not everything you know. Too many details can be confusing and overwhelming.
- Listen. You want to know what your child is feeling and what their questions are.
- Listen with your eyes. Some children are better at expressing their feelings through art. Keep looking at their drawings for clues on how they’re feeling.
- Give your child(ren) examples of ways symptoms of HD can make things different in their life. Mom may start eating dinner slower. Dad may forget to do something he promised to do. Mom may get cranky about little things. Dad may be shaky and unable to balance.
- Reassure your child(ren) they are cared for and the person with HD is receiving the care they need from a great team of healthcare professionals. (If you don’t have a team, call HD Reach and we’ll help you find a team.)
- Be upfront talking to your teenage children about genetic risks and the importance of using birth control.
- Let your children know that talking to people they trust about HD is helpful, but posting about things related to HD might not be a good idea. HD affects everyone in a family in different ways that are connected through genetics. The internet is a notoriously bad place to keep secrets.
Some Questions you might need Answers for:
Q: Is Mom/Dad going to die with HD?
A: HD stops the brain from working properly over 10-20 or more years. Death may be very far off and we have lots of time to focus on living.
Q: Am I going to get HD?
A: Every child with a parent who has HD has a 50/50 chance of developing the disease. Fortunately, there are many smart scientists working on cures and treatments for HD.
Q: If I don’t get HD, will my sister/brother definitely get HD?
A: Each child has a 50/50 chance of developing HD. It’s possible you and your sister/brother don’t have HD.
Q: Can I find out if I will get HD?
A: Genetic tests are available to tell someone if they will develop HD. The test is available when you turn 18. If you want to talk more about testing, you can talk to a counselor at HD Reach or a genetic counselor that works with HD families.
Q: Why isn’t there a cure?
A: There isn’t one yet, but there is lots of research happening all over the world. If you’re interested, we can learn about how we can get involved with research.
Q: If you’re not there, who will take care of me?
A: [Name of guardian] will be there to take care of you if anything happens to me.
Q: Can I tell my friends?
A: You can let your friends know your Mom/Dad is sick, but it’s not contagious. You can tell them your Mom/Dad isn’t feeling well and it’s making him/her upset. You can let your friends know the illness also affects Mom/Dad’s muscles so that’s why they are walking or talking differently.
Q: Why didn’t you find out if you had HD before you had me?
A: There are many “right” answers to this question. Tell your child your truth. Perhaps you didn’t know you could get tested. Perhaps you wanted this child so much and hoped they would be ok. Perhaps you didn’t know HD was in your family.
Q: A question you don’t know the answer to.
A: That’s a good question, but I don’t know the answer right now. I’ll ask the doctor and find out.
Predicting how someone will react is difficult. To make the conversation goes as smoothly as possible, keep your reactions calm and listen to what your child is saying. If you do become emotional, that’s ok. Just let your child know that you want to take a break and will continue talking again in a few hours/days.
Talking about inheriting the gene
At some point, your child will react to the reality that they may have the genetic mutation causing HD. This realization can be a heavy burden for a child (or anyone). They may be even more concerned about a sister/brother. Mental Health counselors can help your child work through their fears. HDYO provides opportunities for kids with HD in their families to connect to other kids with similar concerns.
If you need help talking to your kid(s) or your family about HD, please contact HD Reach. We can also send copies of "Talking to Kids about Huntington's disease" by Dr. Bonnie Hennig-Trestman. HD Youth Organization is a great resource for children and parents.