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Raising a child with special needs

Bookmark and Share Parents who have just found out that their child has a congenital health problem, or birth defect, experience many emotions. Along with the joy of having a baby, they may feel overwhelmed and uncertain they will be able to care for their child properly. But, with assistance from health professionals, parents find that there are lots of people and resources to help. They can also find that raising a child with special needs can bring them as much joy as any child. Congenital health problems can lead to neurological, cognitive or physical disabilities. There are more than 4,000 different known congenital problems ranging from minor to serious, and although many of them can be treated or cured, they are the leading cause of death in the first year of life. According to the March of Dimes, about 150,000 babies are born with congenital problems each year in the United States. The American College of Obstetricians and Gynecologists (ACOG) says that out of every 100 babies born in the United States, three have some type of major congenital problem.
Helpful information
Following is helpful information for the parents of a child with congenital problems:
Acknowledge your emotions
Seek support
Seek information
Explore options for paying for treatment
Seek early intervention
Celebrate your child Acknowledge your emotions. “Parents of children with special needs initially experience shock, denial, grief and even anger,” states Ellen Brooks, MD, Virtua Health psychiatrist. “It's important to acknowledge your feelings and to give yourself permission to mourn the loss of the healthy child you thought you'd have. Talk about your feelings with your spouse or partner and with other family members. You might also consider seeing a counselor.” One of the best things you can do for yourself and your child is to seek support. Getting in touch with someone who's been through the same thing can be helpful; ask your doctor or a social worker at your hospital if they know any other parents in the area who have children with the same condition. Joining a support group may also help - consult your child's doctors or specialists for advice about finding a local or national support group. Seek information. The amount each person would like to learn varies, but try to gather as much information as possible. You can start by discussing your questions and concerns with your child’s doctor. You also can get information from the following: Keep a binder with a running list of questions and the answers you find, as well as suggestions for further reading and any materials your child's doctor gives you. In addition, keep an updated list of all health care providers and their phone numbers, as well as emergency numbers, so you're able to access your child's providers quickly as needed. While you’re gathering information, you also should explore options for paying for treatment and ongoing care for your child. In addition to health insurance, there are many resources available to parents of children with special needs, including non-profit disability organizations, private foundations, Medicaid, and state and local programs. Seek early intervention. “For children with special needs, early intervention is usually the best strategy for helping them reach their fullest potential,” states Lisa Demko, speech therapist and manager of Virtua’s early intervention program. “Designed for children from birth through age 3, the early intervention program brings together a team of experts to assess your child's needs and establish a program of treatment. Services include feeding support, identification of assistive technologies, occupational, speech and physical therapy, social work and teacher services.” In addition to identifying, evaluating, and treating your child's needs, early intervention programs can:
  • Connect you with area resources and support groups
  • Help you find information about your child's disability
  • Help you enhance your child’s developmental needs in his or her natural environment
  • Provide counseling to you and your family
  • Help you determine your payment options and locate local services
You don’t need a physician referral to access early intervention services. For more information on early intervention services in your area, or to schedule a free evaluation, call Virtua Health toll-free at 1-888-Virtua-3 (1-888-847-8823). Celebrate your child. Most importantly, remember to let yourself enjoy your child the same way any parent would. Cuddle and play with him or her, watch for developmental milestones (even if these are different than they would be if your child didn't have a problem), and share your joy with family members and friends. January is National Birth Defects Prevention Month. To find out what you can do before and during your pregnancy to prevent birth defects, go to www.virtua.org/kidshealth.