Living with Autism

April 1, 2008 8:31:29 PM PDT
The world of many Valley families living with an autistic child is often very isolated.The diagnosis of this frustrating and frightening disorder is the first challenge but parents and children alike will need every ounce of strength possible to face an uncharted future together. And that has been the case for the Ohanesian family living in a small town in Central California. Their struggle began a few years after their only child was born.

Nikki's birth was a joyful one for Debbie and Michael Ohanesian. But at the age of two something changed with their beautiful baby girl and silence began to settle over their home. Nikki's father : "She started, you know, not saying anything. And that, you know, raised a red flag."

The family's pediatrician sent them to a neurologist who diagnosed Nikki as autistic. He told the couple there were two diagnosis's he hated to pass along: Cancer and Autism. He didn't offer hope or encouragement to the devastated couple. "Michael Ohanesian: We just held each other and cried a little bit because this was outta left field. "Debbie Ohanesian: You just don't - no one's every ready...our precious little baby." "Michael Ohanesian: Something like that. Yeah. You're just not ready for it."

What parent could be ready for the way autism affects a child sending them into fits of uncontrollable tantrums unable to communicate and frustrated? People stare and often question the parenting skills of families with autistic kids. "Debbie Ohanesian, Nikki's mother: It changes everything. It changes your relationship with your family members, with your friends."

The challenges at home are equally exhausting. Nikki's crying and screaming occur any time, day or night, for reasons she can't communicate to her parents. Debbie describes those first few years: "Those were tough years, those were tough years." But these parents refused to accept that their child would never improve, never learn to show affection or be able to attend school. Debbie worked relentlessly with her daughter to find a better outcome: "I knew that Nikki could learn to read and write. If it was one word at a time." She was right. Debbie told us it required daily bouts of literally holding her daughter in one spot and insisting she pay attention: "It was her in the chair beside me, my legs kicked up on either side holding her in there, little word cards. Her screaming, lots stress, but just a little bit each day."

At the age of twelve Nikki has come a VERY long way. She attends school in a special education class in Reedley. The classroom is on a regular K-8 school campus but staffed by teachers from the Fresno County Office of Education with the training to augment what parents are doing at home. Nikki can read and she works hard on her writing skills. Her mom is a volunteer in the class, but unlike other children at the school these youngsters in Nikki's class don't relate to each other as friends. The autistic child has difficulty relating to others in that way. Autism may have stolen Nikki's ability to make childhood friends but there are glimpses of affection toward her parents. We watched as the two embraced at home after a long day at school. "Debbie: She may not be able to relate to other people, but I have no doubt she loves mom and dad."

Mom and Dad both encouraged her artistic skills as they moved from crayons and paper to the computer. Nikki taught herself to use the Paint Box feature to create image after image from her mind's eye. "Debbie: It showed me what an amazing child I have what an amazing mind she has, the way she sees the world."

There are whimsical rabbits and dancing power pole people. Images she can't express verbally come to life on her computer. Nikki's school psychologist created a DVD of her artwork set to music. The result was recognition last year by Fresno County's Superintendent of Schools with a bound book of the reflections she sees in the world around her.

After school other life lessons at home are the focus for Nikki and her Mom. How do you find out what your autistic child wants for dinner. For Nikki and her Mom a new "talking" computer program is helping with that question.

When Nikki types what she wants into the computer the words are spoken out loud by the voice of the computer program. The day we visited the decision to be made was between Mac & Cheese Hamburger Helper or Salisbury Hamburger Helper. The answer was loud and clear as Nikki typed and the computer voice said "I want Salisbury."

A decade of very hard work is paying off. Nikki dresses herself. She keeps her room neat although in "her" image" of order. She likes school and field trips. And every day she and her family work to hold onto what she has learned. Her mother is determined to insure that her daughter is a life long learner: "By no means are we done, there's so much farther for her to go."

Hope and perseverance are powerful allies and you will find them in abundance within our abc30 Children's First Special "Living with Autism".

Join Warren Armstrong and me Sunday, April 6th, at six-thirty pm here on ABC30 to learn more about the disorder and what's available in the valley for children and families living with autism.


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