When Tonja Updike's son Garrett was diagnosed with autism at 18 months old, she and her family were faced with "innumerable challenges" and a feeling of not always knowing where to turn for help.
Garrett's 7 now, and Updike is striving to be a resource for the community.
Updike, of Soldotna, was recently appointed to the Governor's Council on Disabilities and Special Education, an 18- to 28-member council that serves as the interdepartmental planning and coordinating agency of the state Department of Health and Social Services and other departments offering services or special education to disabled Alaskans.
Updike said the council is made up of members from around the state who look at a wide range of issues.
"It's kind of a gamut of different things," she said. "We look at priorities for the state, we talk to different communities so we can make sure we meet the needs of all Alaskans."
Updike said she hopes to use her new position to foster better communication between other families that have relatives with disabilities.
"I want families to feel like they have a voice and know they can be involved," she said.
At the same time, Updike acknowledged that the council works as a group.
"The council is all about systematic change," she said. "It's not about one person saying, 'This is my problem.'"
Updike's foray into advocacy is relatively new. For a long time, she was too consumed with reorganizing her life to meet the needs of caring for a child with special needs.
"I had to reinvent the wheel," she said.
Everything from finding a baby sitter to finding a school and a teacher became difficult.
Updike said she considers herself lucky, though.
Being born and raised here, she had help from her extended family, which lives nearby.
She said that's not the case for a lot of area families, though.
"Many people who move to Alaska don't have their whole family around them," she said.
She found herself acting as an advocate for autism in many common, everyday situations.
"It's not easy for someone who sees us in a grocery store for 10 minutes and sees Garrett screaming and flailing his arms in a way that someone might consider to be inappropriate and not understand what's behind that," she said. "So I felt I needed to be a voice for him."
"I find myself educating other people," Updike said.
More recently, she's begun to take an interest in policies and the decision-making processes relating to disabilities and special-education issues.
"I'm not the only parent here who has a child with special needs," she said. "We're all sort of united and we want the best for our children."
Updike said any concerns directly relating to the council should be addressed to them by visiting their Web site, www.hss.state.ak.us/gcdse/.
She said she was also open to discussing issues with area families, and can be reached at 260-6933.
Dante Petri can be reached at firstname.lastname@example.org
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