Fallsnewspress.com - Diagnosis is prescription for action

by Ellin Walsh

Reporter

Cuyahoga Falls -- Negotiating life with a child on the autism spectrum has given a local mom a new purpose: advocating for those with special needs.

Stacy Youssef says her son, Zane, now 13, was a typical toddler until 2 1/2, "Then," she recalls, "he started losing speech and it was because he was having seizures, but we did not know it. They were absence seizures, where he appeared to be staring off into space."

Zane had had a very clear vocabulary, Youssef says, and then, every day, he began to speak less and to act more erratically.

Convinced the loss of speech was a medical emergency, Youssef says she kept taking Zane to the pediatrician, knowing instinctively "something was wrong." It wasn't until Zane was 3, Youssef says, that the possibility of an autism diagnosis was raised. Placed on a waiting list to see a Cleveland autism specialist, Youssef enrolled her son in speech therapy classes in the meantime to try to salvage his deteriorating social skills. Within five minutes of walking into the specialist's office, Youssef learned her second-born son was autistic. While she was expecting the diagnosis, Stacy says it was "hard and sad, but a relief to know what the problem was." Since that moment, Youssef hit the ground running -- turning the diagnosis into a defining moment in which she decided to fight on behalf of her son and others like him.

Autism is a "spectrum disorder," meaning its symptoms can surface in a variety of combinations and range from very mild to severe. Autism is more prevalent in boys than girls, Youssef says, but she stresses there is no "average" person with autism. Two children diagnosed with autism can have varying skills.

"But while such a diagnosis is very much life-altering," Youssef promises, "that doesn't mean your life is over. My plan for my life certainly has veered in a different direction, but I can't imagine it any other way. We're thrilled to have Zane. He's the glue of our family."

Two years ago, the Youssefs were preparing to head to Florida for spring break when Zane became ill. Suffering from acute pancreatis and hemorrhaging, Zane was in the pediatric intensive care unit of Akron Children's Hospital for about a month and then spent months recuperating. When Zane was discharged, Youssef says the hospital bill totaled nearly $500,000 -- but the Youssefs didn't owe a cent. "Not even a co-pay," Youssef says in amazement. That's because Zane has a Level 1 waiver from the Ohio Department of Developmental Disabilities.

In gratitude, Stacy founded Zane's Foundation as a way to give back "for people's support and their prayers, the meal cards and home-cooked casseroles." While she and her husband, Sami, had discussed the possibility of starting such a foundation before, the timing was right and that summer they started the paperwork.

"Funding for families with special needs children is the cornerstone of Zane's Foundation," according to Youssef. Zane's Foundation provides financial assistance to families through grants and fundraising efforts for items like medical equipment, therapies and respite care/baby-sitting.

The nonprofit incorporated in July 2008. Its volunteer Board of Directors includes Youssef, president; Lisa Poppenhouse, secretary; Deb Anzelc; Kim Fabry; and Cheryl Hanna. The foundation accepts donations through credit card and paypal accounts; donations are 100 percent tax deductible. Youssef says a roller coaster is the logo of Zane's Foundation because when you have a child with special needs, you ride the ups and downs with them.

"As parents, we have to band together," Youssef says. Because a special needs child does not follow the normal developmental trajectory, Youssef says parents may have difficulty understanding their child's behavior; problems in obtaining a diagnosis; and adapting to the condition within family life.

The foundation sponsors a monthly community meeting at Journey Covenant Church, 2679 North Haven Blvd., on the second Tuesday from 6:30 to 8:30 p.m. An educational speaker, the opportunity for networking and resource books are featured.

As a parent mentor, Youssef often serves as a mediator between parents and school officials in developing Individualized Education Programs.

To apply for assistance, write to Zane's Foundation at 2995 Bailey Road, Cuyahoga Falls 44221 or visit www.zanesfoundation.org/

"Autism can't be cured," Youssef says, "but Zane led us to help other people and that feels so good!"

E-mail: ewalsh@recordpub.com

Phone: 330-686-3908