"(Music) is what makes my days go round," Fawcett said. "It's been there for me my whole life and always brought a smile to my face even in the roughest of times. I start out my day listening to music and I end my day falling asleep to music."
photo courtesy of SEARHC Morgan Fawcett, a Native Alaskan musician and sufferer of Fetal Alcohol Spectrum Disorder, will perform in Juneau FASD Awareness Week, with a benefit concert on Sept. 7.
Fawcett began raising awareness about FASD and this mission, like his flute, is something he will never put down. Fawcett will return to Juneau this week to perform and teach for FASD Awareness Week in Juneau. The week's events include a benefit concert Sept. 7 and a wellness walk and suicide vigil Sept. 9.
"I do it because I know what it's like to live with FASD," Fawcett said. "I have pain every day and I have a lot of problems."
Fawcett has performed and spoken at schools and festivals around the country, sharing his music and message with anyone who will listen.
"I, on the spectrum of things, don't have it as bad as some kids do," Fawcett said. "And it's entirely preventable. (Pregnant women) just have to stop drinking for nine months and nine days. I want to spare the children the pain that I go through, and the adults who care for the children. The effect from FASD isn't just the child but everyone around that child. That's why I think it's important."
"We are scratching the surface," said Ric Iannolino, who coordinates the Juneau FASD diagnostic clinic, run by Tlingit and Haida Central Council. "Forty to sixty percent of women who do drink, drink during pregnancy. Children affected by this disorder have a bunch of problems their whole life. It's an invisible disability which makes it a difficult thing for everybody to understand."
The Juneau clinic, which boast the largest number of professionals in the state, still relies primarily on volunteers to diagnose and treat clients. The clinic can only diagnose two people each month. The only other diagnostic clinic in Southeast is the SEARHC neural behavior clinic in Sitka.
There are several facial features that will help diagnose a person with full-blown FAS, Iannolino said. Prenatal alcohol exposure can cause the groove between the nose and upper lip to flatten, the upper lip to thin and the eye width to shorten.
But these features only occur if a woman consumes alcohol between the 18th and 24th day of pregnancy. If alcohol is consumed at other points during pregnancy, these features will not appear. Parents might not suspect anything wrong and then later wonder when the child has behavioral problems and learning disabilities.
Children with FASD usually have trouble at school. Even something as small as school lighting can trouble sensitive eyes, which is common among those with FASD. There are a number of learning disabilities associated with FASD.
In a damaged brain, a simple task can take far more brain power to perform. Iannolino compares it to a marathon: just as runner are exhausted after running a marathon, FASD kids who perform a "brain marathon" each time they do their homework, for example, are going to have a hard time on the next task, unless they have two or three days to recoup.
Another common characteristic of those with FASD is very concrete, literal thinking. The children's book character Amelia Bedelia, who sprinkles dust on the piano when asked to "dusk the furniture" could have FASD, Iannolino said as an example.
Once FASD has been diagnosed, much of the clinic's work involves modifying the client's environment and creating structure and routine so the person with FASD can function in the world.
"It has to be the same thing every day," Iannolino said. "Any change creates a lot of complexity for someone with FASD."
The clinic has diagnosed all ages, from two-year-olds to grandparents. There is typically a three-month waiting period for diagnosis, but nobody should be deterred by the waiting period.
"We have a whole bunch of kids who have not been diagnosed, who are not getting help," Iannolino said. "A diagnoses helps a person understand what's going on."
Courage to get help
"The most courageous people on the planet are women who drank during pregnancy and realize their children needs help," Iannolino said. "The heroes of this whole topic are the birth parents who come forward and say, 'It's not about me. It's about helping the kid.'"
The clinic is confidential and the focus is always on helping the child or person with FASD, never about criticizing the mother.
"In the clinic it's never about mom, it's about helping the kid and the community," Iannolino said. "We give support to family and clients affected by FASD. We do it with dignity and respect and cultural confidence"
The stated mission of the diagnostic clinic is "to provide hope for individuals with FASD and their families through education, screening, diagnosing, and making recommendations for effective intervention and treatment."
Morgan Fawcett is a strong advocate for diagnosis as well.
"I'd like to thank the mothers who come out and have gotten their children diagnosed with FASD," Fawcett said. "I am very proud and very happy they have come out...Gunalchéesh. (Diagnosis) is very important not just for the child but for everyone (involved with the child)."
Recognition and celebration
Fawcett's original idea for teaching about FASD was that it had to be about awareness, but it also had to be fun.
His benefit concert Sept. 7 will not disappoint this mission: he has invited renowned Australian musician Ash Dargan to perform with him. Dargan plays the didgeridoo, an indigenous Australian wind instrument.
"He's a talented musician and a very good guy," Fawcett said of Dargan, whom he met at a festival in 2006.
When Fawcett travels, he often donates flutes and teaches others to play. He expects to have at least 40 flutes to donate to young people on this trip.
As excited as he is about the week's events, for Fawcett, who has hundreds of family members in Juneau and Hoonah, this is also a homecoming.
"It's going to be good to be coming back home," Fawcett said. "I always enjoy coming back home."
Morgan Fawcett and Ash Dargan will perform in a benefit concert Sept 7. at the JDHS auditorium. The Woosh.ji.een dance group and the Eagle Raven Dancers will perform at 6:30 p.m. and the concert will begin at 7 p.m. Tickets are $10 for adults, $5 for students and seniors and are available from Hearthside Books.
Sept. 9 is International FASD Awareness Day. From 6:30-7:30 p.m. there will be a FASD awareness/wellness walk and suicide vigil. Meet at Dimond courthouse at 6:30 p.m., then walk to Marine Park.
On Sept. 10, Fawcett will be at the Douglas library for story time at 7 p.m.