Talking to Children about Parkinson's Disease

TALKING TO CHILDREN ABOUT PARKINSON'S DISEASE

Don't try to hide the truth from your child, because you can't. The child will feel instinctively that something is wrong and their fantasies of what could be wrong can be far more frightening than the truth.

Give brief, clear, age-appropriate information about PD. If you need advice about how to do this, your child's teacher or pediatrician may be helpful. Or call the APDA Young-Onset Information & Referral Center at (800)223-9776 for suggestions or educational materials.

Ask for help from your child when you need it so that the child does not have to guess, get it wrong or feel guilty that he or she did not help in time.

Listen with an open mind to any thoughts and concerns that the child may have and try to alleviate fears. Children of all ages want to know whether you will die from the disease. Younger children may need assurance that they did not cause you to be sick by not being "good enough" or by anything they did (or didn't do). Older children may be concerned about whether the disease is genetic. They may be angry that you are "different" and cannot do things like everyone else's mother or father.

Remember, each child is unique. What one child in the family needs or feels or how they manifest their feelings may not be the same as another child.

Explain about changes within the home and how this will affect everyone. Assure them that by talking and working together you will all be able to manage and work things out.

Show the child that it is alright to have worries and concerns and that you can manage these.

Be realistic and hopeful about the management of PD.

Show by example that life is good and that every day is alright, despite living with PD. Your attitude will help shape how your children perceive and handle their own adversities that inevitably occur in everyone's life.

To order the free APDA booklet, "My Mommy Has PDBut it's OK!" call (800)223-9776 or visit www.youngparkinsons.org and click on "publications." The booklet was written for a third grade reading level; however, it can also be used as a read-aloud booklet for younger children or as a means of beginning a dialogue with older children. "Daddy," or the name of any loved one can be easily substituted for "Mommy." 

TOUGH STUFF

All parents need a little advice now and then. Get the lowdown on parenting basics like discipline, homework help, and how to talk to your child about tough subjects, like sex, tobacco, and alcohol. Plus, find out where you can turn for help and support. www.kidshealth.org/parent/positive/index.html

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