Four mothers of children with Fetal Alcohol Spectrum Disorders organized the panel. (Dan Carpenter/KTUU-DT) |
Experts gathered this week to discuss how to deal with it, but this time they went to the source: parents of children with the developmental disability.
The panel is made up of four women from different backgrounds living in different parts of the state with one thing in common -- they are parents of children diagnosed with FASD.
In front of a room filled with dozens of service providers and specialists, the women shared their personal experiences.
It was insight that, until now, had not been presented in a setting like this.
"What happens quite often when you do a seminar or a conference that's focused on allied health there's a lot of theory, there's a lot of research, there's a lot of data information shared, but quite often they forget to include the voice of the people that are living with it," said Cheri Scott, a parent of an FASD child.
Scott facilitated the panel and says experts need to hear from families firsthand on what works and what doesn't.
"You can do all of the book learning and talk about systems change 24-7, but unless it really reflects what the needs of families and the individuals that are affected by this disorder are living with, you're really not going to build a system that is responsive to those people," Scott said.
The women discussed the importance of service providers and educators communicating with them about what's best for their child.
"I think it's really important for people to know from the family perspective," said Jeanne Gerhardt-Cyrus, another FASD parent who was on the panel. "So that they sort of see the human side of it and to hear from them what families need, what families want, would like to have, what kind of supports would make a difference."
Panelist Arydce Turner says oftentimes children and adults with FASD are in the service delivery system and seen as not being successful, but she noted that even the smallest achievements should be celebrated.
"There is hope, there is a lot of hope, and to continue to use what works and what is very successful for their children every day, even if it's the littlest thing," she said.
FASD is the only birth defect that is 100 percent preventable.
In February, new data released by officials with the state's Division of Behavioral Health showed that Alaska's rate of fetal alcohol syndrome has dropped by about one-third.
Health officials attribute the drop to a decrease in rates among Alaska Natives.
Contact Lori Tipton at ltipton@ktuu.com
