Strength in numbers: Parent Leadership Program helps parent find community in special needs world

jeanne

“Every class, conference, webinar, lecture, vendor fair gave me new ideas to investigate,”

The Parent Leadership Program added many classes for learning but also a place with friendly people who looked at autism as more than just the child’s needs.

Jeanne Kacprowicz applied for Parent Network of WNY’s Parent Leadership Program in 2013 to learn more about life in the special needs world. Her son Danny has severe autism with very few word approximations, severe aggression and is self-injurious.

Testing when he was young showed scattered skill levels, ranging from 12-18 months for expressive language, to 3 years ahead of his age for his computer use and spelling skills.

Few experts could help Jeanne figure out how to help him. But upon joining the Parent Leadership Program, Jeanne was able to find pathways to begin navigating her life as a parent of a child with autism.

“Every class, conference, webinar, lecture, vendor fair gave me new ideas to investigate,” Jeanne said.  “The Parent Leadership Program added many classes for learning but also a place with friendly people who looked at autism as more than just the child’s needs.  It really is about building skills as a whole family to support the child and everyone else in the family.  As parents we weren’t expected to let the experts make the decisions but to learn and work with the experts to make decisions.”

Jeanne said she learned “there is strength in numbers” as it becomes very lonely to parent a child with “big” behaviors when the general public is not always kind. But she recommends Parent Network to families looking to learn with people who understand that special needs parents’ lives are not simple and straightforward.

“People make comments to a single family and many times those comments are brutal,” she said. “It’s hard to feel strong when you are trying to contain a meltdown and fend off nasty comments.  The fear that someone will call the police and report abuse is real when you are trying to keep a child from self harm and get them to a quieter more private place.”

Through the years, Jeanne ran a parent support group in her school district to build a rapport with other parents and advocates, therapists and teachers.

“I realized I could fight Danny’s battles alone or I could fight for all the kids in our school district,” she said. “The Parent Leadership Program gave me new tools to use to help our school district correct some substantial deficits and craft a better program for those whose needs they could meet and recognize that there are some kids, like Danny, who needs more support and more expertise than is usually found in local districts.”

Jeanne now knows parents and caregivers do not need to walk the “twisty path” of special needs alone.

She learned parents and caregivers need to always share the knowledge they gain with others and learn from the experiences of others to build bonds and skills we can use and continue to share.

“[The path is] messy and hectic, full of twists and turns, and the closest thing we get to a roadmap is a network of people who can help us find the information we need to help our children.  But I also encourage families to also reach out to others and share what they learn,” she said.

She said one of the most valuable things Parent Network offers is a vast network of people with knowledge and understanding to all work together like a “giant safety net” to help parents “learn, grow and live” the best lives they can.   

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