July 01, 2010 Every parent comes to terms with their child's Special Needs diagnosis in their own way. Yet, once a parent accepts the diagnosis, there is the inevitable first question: now what?
Suzanne Aaron, parent liaison for the parent-to-parent organization About Special Kids (ASK), knows first-hand the overwhelming and urgent feeling of needing to become an immediate expert on the diagnosis and related issues such as healthcare needs and special education.
"It is mind boggling. Your brain is just spinning with all the things you have to be an expert on," she says.
There are a few initial steps families can take that may help them feel more in control of the situation. Fortunately there are also resources like ASK that help families get their bearings enough to move forward in the right directions.
Get support. Caring for a child with special needs can be isolating. Connecting with others who are in similar circumstances is an important lifeline for parents as well as siblings. Find area support groups through your child's pediatrician's office, by calling ASK or through an association that advocates for your child's condition.
Learn about the diagnosis. Aaron says families should first talk to their pediatrician to learn about the condition and suggested course of treatment. Then get information from books, conferences, other medical professionals and families who have stood where you are standing. The Internet is another large source of information, but as Aaron says, "stick to reputable Web sites and hold on to your wallet."
Understand the financial ramifications. While every family wants to provide the best care for their child, healthcare is expensive. Will your child qualify for the state's Children's Special Health Care Services or federal Supplemental Security Income? Can Hoosier Healthwise come into play? What can you expect from your current private insurance?
Learn about educational programs available to your child. If your child is 3 or younger, look into Indiana's First Steps early intervention program. Older children may be eligible for an Individualized Education Program (IEP), which is a written statement of the educational program designed specifically for your child. If your child qualifies for special education under the Individuals with Disabilities Act (IDEA), then he or she will need an IEP. If your child does not meet IDEA requirements, then look into Section 504 of the Rehabilitation Act of 1973, a civil rights law that prohibits discrimination because of a disability.
Organize information. Keeping track of your child's medical history can be lifesaving and timesaving at a minimum. Cincinnati Children's Hospital has uploaded a comprehensive Parent Notebook to its Web site, www.cincinnatichildrens.org, that may be helpful for your family and caregivers.
Take a breath. Talk to anyone in the special needs community and you know this is not a simple suggestion. In the moment it can seem out of the question, but over the long haul taking care of yourself is among the best things you can do to be a better parent for your special needs child.
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Carrie Bishop is a freelance writer and mother of two young sons, whose daily antics inspire her work and her life. Contact her at firstname.lastname@example.org.