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The life of a 4-year-old with FAS

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MERRIFIELD — A 4-year-old Merrifield girl has had more turmoil to deal with in her life than any child should have to endure. And this girl will have more struggles to deal with for the rest of her life.

When someone first meets Jade York, who was adopted officially June 13 by her biological grandparents Sheila and Barry York, they will see a typical and sweet 4-year-old girl. But she is not typical. Jade has Fetal Alcohol Syndrome (FAS).

FAS is among the disorders of Fetal Alcohol Spectrum Disorders (FASD) that can occur in a baby when the mother drinks alcohol during pregnancy which causes the baby to have physical problems and problems with behavior and learning, according to the Centers for Disease Control and Prevention (CDC). The CDC reports that each person is affected by the disorders differently and can range from mild to severe.

Sheila and Barry York have taken care of Jade since she was 15-months-old. When they got her she was an unhealthy 13-pound child. Sheila York said that her son and Jade’s biological mother, who has since passed away, got married when she was 9-months-old, but split three months later. York said both her son and the mother were drug addicts and drank alcohol. The mother drank throughout her pregnancy.

“I was in contact with my son and he was being evicted and they had no hot water or electricity and were having a hard time financially,” said York. “The money they had was going to drugs. So they asked me to take Jade until they got back on their feet.

“We had to drive to Illinois to get her and when we got home we brought her to the doctor and she had multiple medical conditions. She was sexually abused, neglected and was not cared for. They (the parents) denied it all, but they didn’t take care of her. When she was pregnant she was drunk all the time. I told her to stop, but she was 22 and she wasn’t going to listen to me. After they had her I told them not to smoke pot in front of Jade because of the second-hand smoke, but they again didn’t listen and didn’t believe me that it could harm her. I was getting no where.”

York said when they took Jade in she was ecstatic to have her and get her away from the neglect, but it also was scary for her as she had just turned 50.

“When we picked her up she hadn’t eaten for three days,” said York. “We started her on milk and introduced her to baby food. We had to force feed her because she didn’t like the texture or the taste. But eventually we got her on real food. She also didn’t talk when we got her. She’d grunt.”

York said the doctor said that Jade has some of the typical physical signs of a person with FAS, which were having a smooth ridge known as the philtrum between the nose and upper lip and smaller eyes. Then when Jade went to the Early Childhood Family Education program, they found out how delayed she was academically. Jade was evaluated by the Paul Bunyan Cooperative and learned she was developmentally delayed. York said Jade worked with a psychologist from St. Cloud and then went to be fully evaluated for FAS at the Lakewood Health Systems in Staples. The doctors diagnosed Jade with full FAS. York said there are three types of FAS: FAS (the worst type), alcohol related neuro-developmental disorders and partial FAS.

“I was not shocked,” York said when she learned that Jade had FAS. She knew deep in her heart that Jade did have the disorder, but she didn’t want to believe it. “I was more confused on what to do next.”

York said when she was in high school she worked with developmentally delayed children, who were violent and had a lot of mental problems. So she knows how challenging it will be to work with Jade. York is concerned about how Jade will feel once she gets older and realizes that she is different from the other students.

“Right now at age 4, Jade is at the level of a 2-year-old,” said York. “But it will go down because of the brain damage.

“Longevity of life for people with FAS is down because they are suicidal, a lot are in the judicial center because their ability to understand consequences for their actions and they don’t understand danger ... Some FAS kids live a normal life, but it is a minor proportion of the population.”

York said her and Barry’s biggest challenge is re framing how they themselves think about Jade’s condition.

“She acts like a normal kid and has all the energy of a 4-year-old,” said York, but she is not normal. “She has more meltdowns than a normal kid and she must be supervised 100 percent of the time, otherwise she could get something that she shouldn’t or get injured. If we were not here right now, she’d eat Mr. Potato Head’s ear.

York said that Jade does not understand abstract thinking and everything is black and white. For instance, York said Jade doesn’t understand innuendos. She also is a “2-minute kid,” where she goes from one activity to the next every two minutes.

Jade is seen by a personal care assistant (PCA) daily for five to eight hours a day, when she is not in school. Tristan Warwas of Advantage in Brainerd is her PCA. Jade also is seen by an occupation therapist.

York wants the public to be educated about FAS. York said according to the FASD organization in Minnesota that as many as 8,500 babies are born in the state with prenatal alcohol exposure. Nationally, FASD affects one out of every 100 births.

York said it is never OK for women to drink while pregnant, not even one drink. York said there are many cases of children who are diagnosed with attention deficit hyperactivity disorder or autism, who could very well has a type of FASD.

“If a medication or treatment is not working a parent may want to look into seeing if the child has FAS,” said York.

York said even her son, who lives in Illinois, does not believe that Jade has FAS. She said he talks to her two to three times a week on the telephone or through Skype.

“To really be able to see her struggles, you have to be around her for a few days. She looks normal, it takes time.”

As for the Yorks life being changed as they have become parents of a FAS child, York said, “We were looking forward to our retirement years, growing old together and enjoy my time as a wife. We never thought we’d go back and be taking care of a baby and have our life turned upside down. But I wouldn’t change it for the world. It’s a full schedule every day.”