"Parents have more to offer than they realize," states August Button.
A year and a half ago, after a difficult pregnancy that included August being in labor for weeks on end, Jesse Button became the new member of the family. He joined Chloe, Jonathan, August and Tom. Jesse was born with a condition that has been diagnosed as sotos-beckwith-werdeman, which is a "skeletal overgrowth syndrome." Today, at eighteen months, Jesse weighs 32 pounds, about the same as four-year-old Chloe, and is almost as tall as six-year-old Jonathan.
August was introduced to Parent to Parent of Vermont when Paula Manzi, Family Support Coordinator for the Northeast Kingdom, accompanied another service provider who was visiting August and the children. That visit and subsequent relationship with Paula and Jan Hancock, another Family Support Coordinator at Parent to Parent, was the equivalent of 'sunshine after a cloudy day' for August's family.
When Jesse was five months old, Paula searched the Parent to Parent database for a Supporting Parent for August; she identified three other families with children who have the same syndrome as Jesse. Conversations started and August's Supporting Parents invited her to visit them and meet their children. August was awed by this available resource. While she sometimes finds it difficult to make the time to keep in touch with this new network, the families continue to send her emails with information about their experiences.
Last spring, while August was completing her coursework for her Associate of Arts degree in Human Services, she trained as a Parent to Parent Supporting Parent and she did her internship under Paula's direction. As part of her field work, August visited the Parent to Parent and Vermont Parent Information Center libraries in Williston. This gave her access to more of the specialized information she needed to understand Jesse's condition and helped inform her about getting Jesse all of the appropriate services he needs. August also attended a support group Parents with Children who have Special Needs in Lyndonville run by a parent, Gail Fortin.
With this new knowledge and confidence in herself, as well as her recent positive experience in Gail Fortin's support group, August applied for a grant from Parent to Parent to start a family support group in Orleans County, located in the Northeast Kingdom of Vermont. The splendid success of this support group has been the 'safe space' it provides family members -- a place for them to be able to talk to each other about their children's struggles and achievements.
What August has learned from Paula and Jan about available funds, respite care and other services from Parent to Parent of Vermont, she shares with other parents at the meetings. Parents listen thoughtfully to each other and offer each other solutions to the barriers that are sometimes encountered when working with medical professionals, school administrators, and teachers. Other issues are also discussed.
"I wish doctors and service providers would think more about the parents and not just the children they're treating and give us more information about what services and organizations are available for our families," said August. "Parent to Parent is awesome, everyone I've worked with from Paula to Jan to Steve, have been compassionate and helpful. If they don't have the answer to my question, they will connect me with someone who does."
These days find Jesse, a child who medical professionals said would never walk, scurrying around after the kitty. Sometimes Jesse topples over if his head throws his balance off, but then he gets up and keeps on going.
| "Someday,
I hope to be able to provide the level of support for parents that
Paula does" August
Button
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Through all of this, August has undergone her own transformation. Because of her partnership with Paula, Jan, and Parent to Parent, she has taken what some might consider the challenges of having a child with special needs and made it an opportunity to share her strengths with other parents and their families. Y
For more information on Supporting Parent Training, starting or finding a support group, or teaching medical professionals call Parent to Parent at (800) 800-4005.