Resources For Your Special Needs Child

By Katie Kelley Schmid

“I don’t care whether I have a boy or a girl, as long as the baby is healthy.” How many times have you heard those words—or even said them?

Most babies are born healthy, but each year many parents are faced with their infant or toddler being diagnosed with a disability or delay. A parent’s first response can range from shock to guilt to fear to anger. But once a parent is aware of a disability, delay, or issue, the first step is to do research, says Dr. Ron Levin, director of the Center for Infants & Children with Special Needs at Cincinnati Children’s Hospital Medical Center. “Learn as much about that condition as you can,” he says. Children’s Hospital’s Resource Directory lists both diagnosed conditions (such as Cerebral Palsy) as well as specific concerns (such as feeding problems) because many children with different diagnoses have similar issues.

In addition to doing research into the condition, Suzan DeCicca, a social worker also at the Center, advises parents to look at their own resources. “I would advise families to look into financial resources, health insurance—find out what’s covered, what’s allowed, who manages their policy, in regards to therapies their child might need,” she says. DeCicca also recommends finding support from other parents, healthcare providers, teachers, and family members you can depend on.

Help for your child

Once you’ve done the research and you have support, be sure to get your child the help that is needed.

For children under age three, your state’s early intervention program is a good place to start. Early intervention (Help Me Grow in Ohio and First Steps in Kentucky) will evaluate your child and put a plan into place, providing free or low-cost services for children with developmental delays or diagnoses known to cause delays. While often doctors or social workers will refer a child, parents can self-refer if they see a concern, says Mary Carol Heidrich, a point-of-entry supervisor with Northern KY First Steps.

After an initial evaluation, children who qualify receive an Individualized Family Service Plan (IFSP), which will spell out—with the family’s input—how frequently the child is seen by developmental specialists and/or therapists and set goals for development. First Steps uses a consultant model, Heidrich says. “It is the providers, developmental specialists or speech therapists (for example) educating family and the primary caregiver to support development.”

In a recent study at Penn State all participants (young children who had a variety of disabilities) showed increased communication as well as turn-taking and social-interaction skills after receiving early intervention services. Getting help for your child early can certainly pay off!

Special Needs Resources

Cincinnati Children’s Hospital Special Needs Resource Directory

513-636-3000; www.cincinnatichildrens.org/special-needs.

Offers local resources as well as national and international website links. Features information on specific disabilities, strategies to help advocate for your child, community connections for ongoing support, and ways to overcome barriers to accessing healthcare resources.

Help Me Grow (Ohio’s Early Intervention System)

See website for county phone numbers: www.ohiohelpmegrow.org.

First Steps (Kentucky’s Early Intervention System)

Northern Kentucky Counties: 859-655-1195 or 888-300-8866; www.chfs.ky.gov, search “First Steps.”

What local parents and guardians wish they had known when their child was diagnosed:

“I wish someone would have told me how important it is to search out support groups, to network, network, network. It's THE only way to find a plethora of resources, information, ideas, and solutions.”

~Chris, Erlanger; Grandma with custody of a grandson, age 4, with traumatic brain injury/cerebral palsy

“I wish someone had told me that trusting your gut is the best thing you can do. That, and finding people who truly support you and your child.”

~Katie, Cincinnati; Mom to a daughter, age 4, diagnosed with Asperger's syndrome

“I wish someone would have told me that an elevated bilirubin in a first child due to a blood incompatibility would (in my case) cause an even higher bilirubin in subsequent children.”

~Tammy, Independence; Mom to a daughter diagnosed with hypertonia at 2 days old due to blood incompatibility

“I wish someone would have told me about all the resources out there for deaf children. We primarily had to find out things on our own.”

~ Debbie, Amelia; Mom to a son, age 13, diagnosed with profound hearing loss in both ears at age 2