Info for Kids
Growing up in a family where someone has Huntington's disease (HD) or Juvenile Huntington's disease (JHD) can be very hard. But you are not alone! Many NYA members have done just that. We are or were once children growing up in an HD home. We have dealt with HD first hand, becoming aware of how hard it is for the person with HD and for the people taking care of that person. Here are some ideas to help you. If you have any questions please contact us at nyaboard@gmail.com or reach out to our supervisor Mynelly Perez at mperez@hdsa.org.
Just because you are young, does not mean you can't help when living in an HD home. There's much to be done! Helping can be as simple as doing an extra load of laundry or sweeping up the kitchen, taking on an extra task is very helpful to other caregivers in the home.
You can also find fun ways to spend time with your family.
Just because you are young, does not mean you can't help when living in an HD home. There's much to be done! Helping can be as simple as doing an extra load of laundry or sweeping up the kitchen, taking on an extra task is very helpful to other caregivers in the home.
You can also find fun ways to spend time with your family.
Some ideas listed below:
- Have a family game night once a week or month, to get the family back to having some fun!
- Take a trip to the local library and share an hour or so reading your favorite books.
- Like sports? Go out to a local game of football, baseball or basketball... you can even throw a few in your yard.
- When things become tense, go for a family walk around the neighborhood, fresh air and exercise are always a good stress reliever.
- Help your HD family member by getting their meal together or offering a snack that they like.
- Spend time with them, even if it is just sitting next to them for a while.
- Have a movie night complete with all the major junk foods!
- If you are more creative, write your family member with HD a poem, story or paint them a picture.
Many times as a child in a HD home, you might feel a little left out, or like you don't know where you belong. Too often children take on a lot more emotionally than they are willing to admit in these types of situations. Always remind yourself that even though times might get hard, or harder, you cannot trade these moments for anything. Every little bit helps, so don't feel discouraged.
Visiting the Nursing Home
Having a family member in a nursing home or being part of their placement can be very hard to deal with. When a loved ones symptoms become difficult to care for at home, many times the family members seek a nursing facility to help with the care of our HD loved ones. For a child, this can be a very emotional and exhausting experience.