Kids were a big focus for part of the questions asked of the HIPE panel in Sacramento, at our Highly Interactive 📷Participant Education (HIPE) Day. Our panel of experts, Lisa Mooney (social worker at UC Davis), Dr. Sasha Duffy (neurologist at UC Davis), and Dr. Vicki Wheelock (neurologist and director of the Center of Excellence at UC Davis) fielded questions that included telling kids about Huntington’s disease and setting boundaries for kids with Juvenile Huntington’s disease.
The following is a transcript of the questions and answers. Questions are always de-identified for the privacy of HD/JHD families.
Question 1: What suggestions do you have for telling children? What age, and how?
Response 1: (Lisa Mooney) In general, kids know a lot more than we give them credit for. They are probably aware that something is going on, and they are probably aware that something strange is happening to Mom, Dad, Grandpa, Grandma, whoever. It is important to name it for them, and not just say, “Oh, Mom is sick, or Dad is sick.” Remember, we all get sick, right? We all get colds; we get sick. That can be very confusing to kids, so it is important to have a label for it. Whether you want to call it Huntington’s disease or just call it HD, or call it something else, that’s fine. But you need to label it for kids to make it less confusing for them. Of course, how you tell your kids will be 📷totally dependent on what age they are and what developmental level they are…you can label it and leave it at that. Tell them if they ever have any questions or concerns, they can come to you. Of course, if they’re older, teenager years, and they’re able to understand a little bit more, you give them a little bit more information. Give them safe places to go to get information outside of you, like Huntington’s disease youth organization (HDYO), or they can call [the social worker], or they can come to you to ask you questions. It is important to tell kids. Usually, it doesn’t end well if it is a family secret because eventually it does come out, and there is usually a lot of anger, resentment, guilt, and things of that nature if it’s not talked about. It’s not something you have to talk about every single meal. It doesn’t have to consume every single day. But it is something you need to let kids know about so that they know what is going on, and they aren’t scared because a lot of times, if they think something is going on, or if they see Mom crying or see Dad crying, they’re worried, and they need an outlet to sort of talk to a person about it.
*HDSA has a resource packet with “How to talk to kids about HD,” available on their website.
Response 2: (Dr. Sasha Duffy) A couple of situations that I can think of are at time of diagnosis, so when some people come to us for predictive testing, and they find out they have the gene, and they will get Huntington’s disease at some point in their life, and where they come to us and get a new diagnosis of Huntington’s disease, and there is a question of, “What do I tell my kids?” I will often say, “Just take a moment and let it penetrate you, ok? Just let it sink in for you; let it be a little bit clearer for yourself before you are ready to pass that information on. It’s ok to just take that moment before letting your children know.”
Question 2: With a child with JHD, what limits are acceptable? So if they don’t get their way and they throw a tantrum, what should you do? What are the limitations with a child with JHD? She wants to take her clothes off inappropriately, or she wants to hug and kiss strangers, things of that sort. What limitations should we put on a child with JHD?
Response 1: (Lisa Mooney) Kids are still kids, sick or not. With Huntington’s or not, it is important to give them responsibilities that are appropriate for their developmental level. It is important to make sure that they follow the rules that you set forth. It is o📷k to give them time-outs or to have consequences for what has been talked about as not appropriate behavior or something of that nature. That being said, kids are still going to push their boundaries, and still try and do everything. Consistent routine is key, really for all of us, definitely for a person with Huntington’s. Adult or juvenile, routine is key. Some of the kissing and hugging strangers and some of that is probably more HD-related and a little bit more challenging to sort of manage. I would say, just try and have conversations that are developmentally appropriate for that child, and see if you can’t talk about it, or maybe try and avoid situations where they may be overstimulated, if you will. There could be other triggers; there could be things going on that could be triggering this behavior. Maybe it’s grocery stores, maybe they’re scared, maybe that’s their defense mechanism for that particular situation because they’re anxious. It’s hard; it’s not easy, as we know parenting is not easy in general, and parenting is even harder if you are parenting a child with Juvenile Huntington’s disease. You guys are all amazing. You are doing your best, and your best is all that anyone can ask for.
Response 2: (Dr. Vicki Wheelock) The other side of that, though, I think is that you want to always make sure the person with Huntington’s is safe, and I think you are touching on something where sometimes there is a safety issue, and it’s about understanding who is a stranger and who is a friend that you know, that type of thing. I want to say that this goes to teens and young adults where sometimes, because of some of the brain changes, they aren’t judging danger adequately, and that’s one of the hardest things—you want your child to mature, be as independent and to follow their own dreams as much as you can, but you also have to watch out for them; you want to try and help them understand. So I think it has to be developmentally appropriate; something for a six year old is different than a 12 year old and an 18 year old, but if you can do that consistently and get into a plan with them, it will be easier for them to accept guidance. The hardest thing about this is that the disease is progressing, and that’s why we have to adjust how we’re maintaining their safety. For every person, it’s always going to be different, but I do think that creating a culture of safety and safe boundaries and talking to them about that, not to scare them, just to help them understand that sometimes things can happen that you wouldn’t expect and that there is a reason I don’t want you to do that [is important], and then try to redirect.
The Huntington’s Post is made possible by grants from Teva Pharmaceuticals and The Griffin Foundation.