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Shahbahrami WebStory

Most two week-old babies are just getting used to being out of the womb, surrounded by the smell of baby powder and the cooing of their family's voices. At two-weeks, little Sophia Shahbahrami was hooked up to tubes, monitors and life-support as her tiny body underwent open-heart surgery.

Born with a severe heart condition and a genetic disorder, chromosomal deletion syndrome, Sophia's family watched helplessly and wondered how they could best help their fragile daughter. Sophia's mom, Carrie, contacted First Steps, an early intervention program for infants and toddlers with special needs.

First Steps worked with the family in setting up a therapy plan for Sophia and also suggested they contact ASK. Carrie called ASK parent liaison, Stacey Stillinger, who is also the parent of a child with special needs. "Stacey was someone I could relate to. I had joined a support group, but the kind of personal connection I had with Stacey just didn't happen with anyone else. As a parent of a child with special needs, Stacy has been there, done that, knew the system… I could bounce ideas off her. It was great to have her to talk to, especially with questions no one else seemed to be able to answer for me," Carrie said.

Typically, parents who call ASK have been overwhelmed by their child's diagnosis and with all they have to learn and know to help their child. "I wanted to get more information… as much as I could find about my daughter's condition and everything I needed to help her," Carrie recalled. "Stacey gave me ideas, resources, and information on funding, Medicaid, waivers, and specific information on insurance issues I was having."

ASK parent liaisons go through extensive training and keep abreast of changes in issues and legislation related to special needs. Carrie said, "I had been searching for answers on specific issues and no one else here seemed to know the answers or who to ask. Stacey knows the system and followed up on it for me. It's so nice to have a contact person who's in the loop."

Sophia is now ten months old and busy doing baby things. Relieved, Carrie recalled her conversations with her ASK parent liaison, "At first, all I ever did was cry when I called Stacey. But Stacey has helped bring us emotional peace of mind. We're settling into our new norm since Sophia's diagnosis. We've made some adjustments in our day-to-day lives and found ways to keep Sophia healthy and safe."

Asked what she would tell other parents of kids with special needs, Carrie said, "They should call ASK. First and foremost, ASK parent liaisons are unbiased and know intimately the role a parent plays with a special needs child. Parent liaisons listen. They're a voice of reason. They can help you find answers. They don't just answer your call… they call you and check up on you. I felt so lost. I felt so much better now about everything. Call ASK."