Open communication is essential for healthy relationships, growth, understanding and knowledge. Communication can be verbal, written and non-verbal through emotions, reactions, facial expressions and behavior. Outlined below is information about engaging in discussion and on-going communication with your children about Huntington’s Disease. Good communication with your children can assist all members of the family in coping and dealing with the changes and loss that will occur over time.
Reasons for Talking with Kids about HD
- Children are great observers and can often sense when something has happened through your facial expressions, behavior and emotions.
- If children need answers and don’t feel they can get them from family they will get them from outside sources and risk getting incorrect information.
- Remember, it takes a lot of energy to “hide the truth.”
- Fear is learned. By not discussing the diagnosis children will learn to be scared of HD and potentially the person with HD.
Who Should Tell the Kids?
- Ideally the person with HD should discuss the diagnosis so the children feel free to talk to them about any future questions or feelings.
- Other persons can include: spouse, close family member, close friend, professional healthcare provider.
- It is important to make sure the child is familiar and comfortable with the person who is sharing information.
When Should I Tell the Kids?
- Children should be told at all ages as close to initial diagnosis as possible.
- The earlier you talk about HD the more normal and comfortable it will be for you and the child.
- It is never too early to tell the children and there is never a “right time”.
How Should I Tell the Kids?
- Environment should be comfortable, familiar and safe with minimal distraction so you and the child are free to express your feelings honestly.
- Understand that the initial conversations may be uncomfortable for you and the children and will likely get easier as the foundation for open communication is established.
- Remember that you will need to talk to different age children separately as they will have different questions, concerns and reactions.
- Be present and prepared to spend the necessary time to needed to address any questions or feelings.
What Should I Tell the Kids?
- Be honest and genuine. If children don’t believe you they will not feel comfortable asking for more information or sharing their feelings.
- Remember children are great observers, they are going to be watching you more than they are listening to the words.
- Share age appropriate information they will understand.
- Actively listen by respecting what children have to say, addressing their questions, and acknowledging their feelings.
- Have the child direct the conversation. They will ask what they want to know.
- Be comfortable saying “I don’t know”. Admit that HD is confusing and difficult to understand. Let them know that you are doing your best to find out as much information as possible and you will share what you know.
- Only make promises you can keep.
- Give the child time to process the information and his/her feelings. Some children may not want to talk during this initial conversation. Provide them space and offer to discuss with them in the future if they would like.
- Keep information simple and brief.
Different Ages and Stages
Giving your child information about HD – the right amount at the right age – will give him or her tools to deal with the changes in the family while helping him or her to feel secure and live positively.
- These children will sense your feelings and react to your emotional state. Their behavior, appetite and sleep may change and developmental milestones may be delayed due to feeling anxious or depressed. During this age you should interact with a soothing voice, hugs and affection and patience.
- Intense discussions or arguments should not take place in front of children this age. They will not understand what is being said, but will definitely react to how you are feeling.
- Tell them small bits of information, define the illness.
- Mom/Dad has an illness called Huntington’s Disease.
- Allow them to ask questions if they have them, answer with simple, brief explanations.
- Children of this age may experience anxiety, changes in behavior, sleeping (nightmares) or attachment fears when leaving caregiver or feelings received from nonverbal communication.
- Keep routines as consistent as possible. If they know what to expect they are better prepared to cope. Function on day-to-day basis: tell children the schedule for the day.
- Reassure them nothing they have done has caused HD or can change the situation. Children at 4-5 may feel they have “magical” powers and if they wish for something (good or bad) it will come true.
- Can be overly concerned about health. Do not overwhelm with details of appointments as they may worry about them to the point they may become ill.
- Let the school/teachers know what is happening as they can be part of the child’s support while not with the family.
- Children of this age may experience changes in eating, sleeping (nightmares) and may have anxiety about leaving caregivers or going to school. Children may also have changes in school performance, social withdrawal, changes in friendships and may even regress to bed wetting, sucking thumb, etc.
- Provide children with attention and affection.
- They will need to feel included and aware of family situation/changes.
- Children of this age are prone to mood swings, anxiety and depression (w/out presence of illness in family) and this may increase with the HD information.
- Confusion between wanting to be independent, yet still dependent on adults.
- Not sure how to handle their own emotions.
- Teens may express anger and withdraw when HD is discussed.
- Assure them any feelings they are having are natural, normal responses.
- Provide information, allow them to ask questions/express their feelings when they are ready. Written materials to support the information you are discussing may be helpful.
- Teens may seek support from outside family (peers, teachers, etc.)
- HDYO (Huntington’s Disease Youth Organization): Talking with Kids about HD
- HDSA Family Guide Series: Talking With Kids (PDF – 28 pages)
- HDSA: Talking With Kids About HD (PDF -112 pages)
- HOPES: For Kids
- NYA (National Youth Alliance): Explaining HD to Kids
Adapted from an article by: Lisa Kjer-Mooney, LCSW