Available Resources
I have often heard experienced parents say that telling a child about Huntington's Disease is a lot like telling them about sex -- you answer their questions honestly with age-appropriate information.
As with the birds and the bees, you want to be your child's primary source of accurate information, but that may not be the case. If you tell your children the name of the disease that is affecting their parent while hoping to postpone the issue of their at risk status until another time, you may not succeed. Children who are computer proficient may do an Internet search to find out information. Biology textbooks for junior high school and high school students often use Huntington's Disease as an example to teach genetic concepts.
There are several good resources for children and young people.
The Hopes site has a section for young people which includes the popular "Bryan's Dad has Huntington's Disease." http://www.stanford.edu/group/hopes/basics/forkids/ac0.html
Social worker, Janet Howes has written "Is Daddy Okay? A Kid Looks at Huntington's Disease." This is a story of two children who must cope with their changing world as their father develops the illness. http://www.delospublishing.com/
The Huntington's Disease Association of the UK has a book "Huntington's and Me - A Guide for Young People" written by social worker Allison Gray. Ms. Gray interviewed young people with HD in their families to get their perspective and ideas before writing the book. Some of her writing is available from the New Zealand link below.
http://www.hda.org.uk/charity/books.html#HuntingtonsAndMe
For parents, there is Talking to Kids about Huntington's Disease by Bonnie Hennig, MSW, LCSW, http://www.talkingtokidsabouthd.com/book.html The book provides information about how to handle the topic at various developmental stages.
Provided by Marsha L. Miller, Ph.D.
Answers to this question can be found through these links:
- Telling the Children
- Published by the International Huntington Association. Go the above link, click on articles, then click on HD Living.
- From the viewpoint of the children.
- The Huntington's Disease Associations of New Zealand ran a series of summer camps for young people at risk for Huntington's Disease. The campers were asked a series of questions about their experiences at camp and about living at risk. Their informative responses are presented here.
- Talking to children about Huntington's Disease
- Published by the Huntington's Disease Association, London.
- Information for teenagers
- Published by the Huntington's Disease Association, London.
