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FASD: An invisible disorder

Posted: May 10, 2014 - 11:03pm

It was the angelic sound of his flute that imbued a calm, peaceful setting. The music wasn’t only for Morgan Fawcett, who plays the flute to calm himself before presenting, but also for the audience at the Fetal Alcohol Spectrum Disorder conference in February.

“I’m not here to lecture,” he said, “but to converse and connect. Forgive me if I don’t say everything exactly right. I am still learning. My mom drank the first 90 to 100 days of my life, and I have physical and neurological disabilities.”

While Morgan’s brain was damaged due to alcohol in the womb and he suffers from Post Traumatic Stress Syndrome as a result of spending his early years in an alcoholic, abusive environment, his main goal is to help people understand there is no guilty party.

“We can’t blame our mothers,” he said, “because in the end we are all responsible as a society. I am what I am today because of what happened to me.”

Morgan is committed to raising awareness for FASD. His commitment was reiterated by “Uncle Ric,” Morgan’s fond title for Ric Iannolino, one of the facilitators at the conference and former coordinator of the Juneau FASD Diagnostic Clinic, who shared that Morgan had donated half the proceeds from his CD to the clinic. Music has been his main support with one exception, his grandmother, whom he lovingly refers to as “Gram.” Both literally saved his life.

Prior to playing his flute, Morgan’s GPA was 1.5. After, his GPA increased to 3.86 in 10 weeks. According to Morgan, such an academic

improvement is not typical of those with FASD.

“You can’t expect to see immediate growth,” he explained, “and what may be a mild improvement for one child may be astronomical for another.” However, Morgan is an amazing example of the possibilities for children with FASD if their disability is identified early and supports are put into place based upon the child’s strengths. By age 18, Morgan’s IQ had increased from 73 (age 14) to 83.

Because of his difficulties at school and his home environment, Morgan learned early on to get his own needs met in the only way he knew how. He was living on the streets by age 11. As a result, he gained a false sense of independence and turned to stealing and manipulating people to survive. He became a skilled con artist, making friends with children whose families could clothe and feed him, which furthered his language abilities, a strength he always had. Morgan was reading at college level in the third grade, which led his teachers to believe he was gifted, and he was, at least for verbal skills, where he scored in the 90s. So, while parts of his brain were underdeveloped, other parts functioned above average. Early assumptions regarding his abilities, therefore, resulted in Morgan not receiving the critical and needed academic support and accommodations he desperately needed.

Morgan was 14 when he first noticed he was different. Until then he knew he was struggling, but he didn’t understand why. He was smaller and underweight. He had a dangerously high tolerance to pain, which could result in severe injury without his awareness. He was sensitive to touch and struggled with bright light. He has neither clean clothes nor the ability to do laundry; his smell pushed groups of kids to the other side of the hall to avoid walking next to him. He was an easy target for bullying and once was thrown into the dumpster. Perhaps to no surprise, events like these led to thoughts of suicide. Because of Morgan’s learning difficulties he didn’t like school, and if not for leaving Juneau he likely would have turned next to drugs and alcohol.

Morgan began to connect with his Tlingit culture when he moved in with his Gram at 14. Two years ago, he began to study the Tlingit language. “You can’t understand one without the other,” he stated. “Language and culture are two things that are integrated.”

Once he started learning his language, he explained he felt a sense of completion. “It was like coming home.”

According to Morgan and his grandmother, language, music, art, dance and sports stimulate the other side of the brain, supporting academic learning. This suggests cutting languages and arts from the curriculum would be devastating for children with brain disorders.

While some claim having a diagnosis labels children for life and sentences them to an academic track that is limiting, Morgan and others with FASD view diagnosis as a support — a vehicle to obtain access to relevant and needed assistance and services. While a diagnoses is not who the person with an FASD is, a diagnosis is crucial to understanding where to start. The diagnosis explains the behavior, and the supports, accommodations and other modifications to manage behaviors. It is also critical to identify PTSD, as a trauma is common in the lives of children with FASD.

Today, with support from his Gram, who travels with Morgan on speaking engagements and provides daily assistance, he is a success. Morgan has worked at the White House as an intern, is currently attending college and he travels the nation speaking and raising awareness for FASD.

“Although there are days when I think, ‘Why can’t things just be simple and run smoothly,’” he said.

Morgan concluded: “I enjoy a good challenge. I am able to raise awareness because of my own disability.”

• Alex Pastorino is a retired educator and mediator. She participates on the local FASD Working Group, which is committed to raising awareness of FASD.

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