Learning that your child has a disability or chronic illness can trigger powerful and conflicting emotions: powerlessness in the face of the disease or disability, fear of what is to come, and relief finally to have an explanation.
As with everything else in parenting, there is no simple formula for coping with these feelings. There’s just research, practice and patience.
Although you may feel overwhelmed right now, remember: You’re not alone. You have resources, including your child’s doctor, your family and friends, and other parents facing similar situations.
To get you started, here is some guidance from the American Academy of Pediatrics (AAP) and other experts:
Learn about your child’s condition. Accurate information will help you better understand and react to your child’s symptoms so you can keep him or her as healthy as possible. But be sure the information you’re getting is reliable.
“There’s a huge amount of information on the Internet,” said Ellen Roy Elias, a member of the AAP's Council on Children with Disabilities. “Parents should remember -- not everything on the Internet is reasonable or accurate. Also, make sure your information is current. Things have changed so much for children with special health care needs. A problem that was untreatable 10 years ago may now be more benign with many options for treatment.”
When you have questions, turn first to your child’s physician, says Elias. He or she can steer you toward trustworthy books and websites. For example:
-- “Woodbine House publishes a whole series of well-written books to help families with new diagnoses,” she says. Books on topics such as autism, Down syndrome, physical disabilities and more can be found at www.woodbinehouse.com.
-- The National Dissemination Center for Children with Disabilities also has up-to-date information about specific disabilities, ranging from attention deficit disorder to traumatic brain injury, at nichcy.org/disability/specific.
Keep a positive perspective. Here are three strategies:
1. Remember that this is your child. The diagnosis is just a label. It can be useful or harmful, depending on how and when it’s used. Focus on the love you have for your child and the other good things about him or her.
2. Try to stay in the moment. Though it can be difficult, don’t spend too much time worrying about things you can’t control. Try to keep as normal a routine as possible, and take things one day at a time. Practicing this habit seems to produce some normalcy and consistency when life becomes hectic.
3. Get organized. Over time, you may accumulate a library’s worth of information about your child’s condition, a long list of medications, and a calendar full of appointments with doctors and specialists.
Whether it’s a color-coded, cross-referenced filing system or just a big box you keep everything in, come up with an organization scheme that works for you. It’s a resource that can help your child get the best care possible, and it may help you feel more empowered and less stressed.
Take care of important relationships. The financial, emotional and physical stress of caring for a child with a disability or chronic illness can take a toll on some families.
Maintain open, honest communication with your spouse and all your children. Talk to kids at a level they can understand. Listen to other family members, too, and try to understand how they’re feeling.
And know that sometimes, difficulties bring out the best in families.
“I’ve seen wonderful examples of everyone pulling together in times of stress,” Elias said.
Ask for help when you need it. Seek out the resources that are available to you. It may be in the form of babysitting from friends, guidance from a spiritual counselor, or a monthly support group meeting with other parents.
“Don’t try to go it alone,” said Elias. “There’s a lot out there that can be helpful for you. Try to seek that advice and support.”