How can families best care for themselves and their child? My daughter has multiple disabilities. Primarily we’re facing autism and kidney disease. But she has the “combined type” of autism which includes ADHD (Attention Deficit/Hyperactivity Disorder) and LD (Learning Disabilities). As her kidney function decreases, she has developed hyperparathyroidism (thyroid), hypertension (high blood pressure), hypercholesterolemia (high cholesterol), osteodystrophy (bone disease) etc. She also has spina bifida, scoliosis, and vision/hearing/dental problems.
Ok so now that you have the picture I’ll tell you how I deal and hopefully it’ll help some of you parents out there. The first thing I did when she was born was call every kidney disease organization listed in the Exceptional Parent Resource Guide. When we received the secondary diagnosis of autism when she was 7, I felt a little overwhelmed until I thought back to what I did before…then I called all the autism organizations in the EP Guide. Also, if your child has an uncommon condition like mine, you can call the National Organization of Rare Disorders.
Everyone deals with things differently, but I found out the more I knew about her condition, the less I felt helpless and hopeless. Once you know what options you have for treatment, you can make educated decisions about your child’s care. Families who have information are empowered. They don’t feel as stressed. They don’t feel like they’ve lost complete control of their children’s lives, but rather can partner with professionals in joint decision-making.
Sometimes though, families also need to talk to other parents. Besides Parent-to-Parent matching, I would also recommend support groups. There is actually a listing of all support groups nationally through the American Self Help Group Clearinghouse. There’s nothing like getting support and ideas from other families who’ve “been there.”
By getting information and support they need, families can take the best care of their children with special needs, as well as themselves.
Exceptional Parent magazine call (800) E-PARENT for a free pocket guide
National Organization on Rare Disorders (800) 999-6673
Parent-to-Parent www.p2pusa.org (click on “view U.S. Map)
American Self Help Group Clearinghouse www.mentalhelp.net/selfhelp