Bonnie Hennig-Trestman, DSW, is the Director of the Carilion Clinic Huntington’s Disease Program in Roanoke, Virginia, Assistant Professor at Virginia Tech Carilion School of Medicine in the Department of Basic Science Education, and the Special Programs Director at HD Reach. She has provided educational lectures to national and international audiences and has written a book called, “Talking to Kids About HD”. Dr. Hennig-Trestman serves as the Research Co-Chair for the Huntington’s Disease Youth Organization and Chair of the Huntington Study Group’s Credentials Committee.
Helping Children Understand and Copy with HD
Coping with a diagnosis of Huntington’s Disease (HD) is difficult. When families with HD have children, the family members can experience additional stressors. During my 25 years of working with people in the HD community, I have found that families who openly discuss HD, as well as work towards ensuring support is provided to children, fare much better than families who do not openly talk about HD.
A Child’s Right to Know
There are many reasons to support open communication about HD in families. First, a child has a right to know about anything that impacts the family.
By not talking about HD, children learn not to trust. Many young adults I have worked with tell me that they understand their family members wanted to protect them from HD, but when they eventually found out about HD, they felt betrayed. They felt there was something important they should have known about when younger. This led to much anger and resentment.
When they were children, they made up stories in their mind to explain the feeling they had that something was different in their home. They also worried that they caused something bad to happen. In turn many of them developed anxiety and guilt.
In addition, when families don’t talk about HD, it gives children the message that it is a subject too terrible to be discussed. I remind parents and caregivers that fear is a learned behavior. If HD is discussed in a “matter-of-fact” way, children can learn how to cope with their feelings about growing up in a family impacted by a chronic disease.
It’s Never Too Late to Talk about HD
When children, especially those with access to social media, find out about HD in the family from someone else, it can be a challenging time. Parents and caregivers who talk openly about HD may not need to spend energy remembering what information a child was given about the person with HD’s behavior, what medications the person might be taking, or what appointments the person is going to. In addition, if the person with HD does show behavioral issues, the child will have an explanation and tools to cope with this behavior.
They might also continue to show respect towards the person with HD since they will understand that the behavior is part of the illness.
It is important for families to know that children can be told about HD at any age. People come up to me at conferences after I give talks on this topic. They say to me, “I did it wrong. I didn’t talk to my children about HD. Now it’s too late.” I reassure them that it is never too late. I tell them that they did the best they could at that time with the information they had. I remind them that many times people don’t talk openly about HD because they feel they should shield children from the sadness and difficulty HD can bring. I also tell them they can go forward and let the child know they learned more information and that they want to talk about something important in the family.
I have worked with many families who have tried to keep HD a secret and then have decided to openly talk to their children about HD. In situations where HD was not initially discussed, family members admit it was more difficult to build up trust. Looking back, they do wish they had talked about HD from the beginning. They also report, however, feeling positive about the discussions moving forward. Not one family or child has ever said to me that they wish they could go backwards and keep HD a secret.
Use Developmentally-Appropriate Language
When families do decide to talk to children, I always suggest they first reflect on their own experiences. If people have strong feelings about how they were told about HD, it can be helpful to process these feelings with a therapist. It can also be helpful to talk to experts on techniques to talk to children.
I always tell families that I can give them generalizations about ages and stages of childhood development, but each child is unique. I have worked with young adults who have a very difficult time comprehending HD. I have also worked with eight-year-olds who can have lengthy discussions about the molecular components of HD pathology. It is important to consider the maturity and comprehension level of each child you speak with.
Include Every Child
The important message is to make sure all children in a family are at least provided with basic information all together. Some families feel that telling one or some children is better. They will explain that there is a large age gap between children or one child “worries a lot.” While I let them know I understand their concerns, I tell them that while telling one or some children in the family might feel like the right thing to do, it adds an additional burden to the child(ren) who know. Inevitably what happens is that either the child who knows will tell the other children but then swear them to secrecy, leading to more distrust, or it puts a very heavy burden on only the child who knows the truth.
It is much better to give all children at least some information. For children who have anxiety, they typically have a medical healthcare team who works with them. Let the team know what is going on and ask them to help support you and the child.
Prepare and Practice Answering Hard Questions
I also tell parents to be prepared. Children can ask very difficult questions. They might ask if you or the parent with the HD gene are going to die. They might ask if they themselves will get HD. They might want to know who will take care of them.
I suggest role-playing in advance and making sure you have answers that are gentle but honest. Most important is not to lie to children. If you are not sure if they have the gene for HD, let them know you don’t know if they will get HD. Provide the facts in simple terms and let them know you might not always have the answers. If you show children you can cope with “the unknowns,” you are teaching them to accept this as well.
Sometimes children will not ask questions right away or they will say that they aren’t worried or scared. This is typical and is their way to protect you. I tell families to be honest and be a role model for children. Tell the children that it is okay that they don’t have any questions right away but let them know at times you worry and get scared. Let them know the best way you cope with this is to reach out to people for support and to experts for answers.
You can also let them know who else they can talk to if they don’t feel comfortable talking to you about certain topics related to HD. At the end of each discussion, always leave children with a feeling of hope. Let them know that researchers, scientists, and doctors are working hard to try to find ways to treat HD. Also, make sure you have a plan and let them know that no matter what, they will always be cared for.
Start Simply
A simple way to start a discussion is to say that you received some important information about the person with HD that you want to share with them. You can say that Mom/Dad, etc. went to the doctor and found out that they have something called Huntington’s disease (HD). You can tell them there is a lot you will learn about HD, but it is a brain disease. Tell them you can’t catch it by touching or hugging. If the child can handle more information, you can begin to talk about the symptoms of HD. Then you can ask if they have any questions.
A good tip when answering questions is to finish conversations with the phrase, “Did that answer your question?” This way if they need more clarification they can ask.
There are many resources to help families talk to children about HD. Two of these resources are the Huntington’s Disease Youth Organization (HDYO) and the Huntington’s Disease Society of America (HDSA). You can look up both of these organizations online and read about tips to talk to children, connect with experts who can help guide you, and obtain support for parents, caregivers, and children.
Considerations for Child Caregiving
Another important discussion involving children in families impacted by HD is caregiving. Some families who do openly discuss HD rely on children to provide hands-on care to siblings or adults who are ill. Research has shown that children who are caregivers, even if they state they want to provide this type of care, generally have more physical and psychiatric issues later in life. This can be a complex problem since it is well-known that people with HD have a difficult time obtaining daily care. In fact, many countries do not have the infrastructure needed to provide care to people affected by HD. Some countries offer insurance such as long-term care coverage, however not all families can afford to purchase these policies. I have personally worked with many of these families who feel their only option is to have a child or children provide care. These families feel desperate to find care or feel too stigmatized and overwhelmed to ask for care. The children then become the default to provide hands-on care. The result is children who become parentified and lose their “youth”. They are no longer able to “just be children” and instead sometimes work around the clock to care for symptomatic family members.
When this does happen, I strongly advise these families to work with healthcare teams, local organizations, and insurance companies to try to find alternative options. It is understandable that families do not want strangers coming into their homes to provide care. It is also well known that many long-term care facilities aren’t equipped or educated on how to care for people with HD. Yet, while it is true that many of these options are not ideal, they will allow the child to focus on “being a child,” instead of a caregiver who provides the needed respite for the family.
Some families I have worked with insist there are no options except to enlist the help of the children, but once I am given permission to advocate on their behalf, we find that many times they are entitled to at least some type of assistance.
Promoting a Healthy Family Life
Children can, of course, help with minor roles in caregiving. They can interact with family members who have symptoms of HD by helping with tasks such as engaging in recreational activities. As children get older, they may decide as adults to take on the role of caregiver. I encourage these individuals to talk openly about their expectations and work with a healthcare team to determine when and what type of care can and should be provided by others.
In summary, it is my experience, and this is supported by researchers who have studied the topic of growing up in a family impacted by HD, that open communication is best. While each family is unique, there are many similarities families impacted by HD face. Reaching out to advocacy organizations can benefit families and provide children with the resources needed to provide education and support.
In terms of caregiving, there are no absolutes to determine the best options but important factors to keep in mind are safety and long-term effects that caring can have on caregivers. It is not uncommon for families to feel overwhelmed when faced with HD. Organizations such as HDYO, HDSA, and local HD experts can provide guidance.
Families do not need to navigate their HD alone.
