When you’re raising a child with a disability, every day comes with new challenges, new questions, and new opportunities to advocate. For Lisa, the mother of 6-year-old identical twin boys with Autism Spectrum Disorder (Level 3), who are nonverbal and also have ADHD, OCD, and global developmental delays, advocating for her children has become a way of life. She is constantly researching, learning, and searching for resources that can help her family thrive.
That search led her to Parent Network of WNY.
“I am always researching, advocating, and continuing to educate myself,” Lisa shared. “I came across Parent Network’s website and started signing up for different online programs and educational Zoom sessions, hoping they could offer more support and resources.”
What Lisa found was more than educational workshops and information. She found a team that listened, encouraged her, and walked alongside her as she navigated the complexities of raising two children with significant support needs.
Through Parent Network, Lisa connected with Jessica from the Family Behavior Support & Advocacy Program. Jessica quickly became someone Lisa could lean on when questions or challenges arose. “Jessica is like a second set of eyes and ears into our world,” Lisa said. “She has helped with concerns involving our care coordinator and OPWDD, asks questions that make me think deeper, and always checks in to make sure I’m doing okay, too.”
While Lisa has built a strong partnership with her sons’ school, having another trusted advocate in her corner has made all the difference. Jessica has attended Life Plan meetings, helped Lisa work through concerns, and provided guidance while always allowing Lisa to lead the conversations and decisions for her family.
When Lisa first connected with Parent Network, she admits she was overwhelmed. Like so many parents caring for children with disabilities, she had become so focused on meeting her children’s needs that she rarely stopped to care for herself.
“I realized it’s okay to ask for more help,” Lisa said. “They listened, I felt heard, and they kept checking in. Even if I didn’t finish my checklist or couldn’t make a Zoom meeting, there was never any judgment.”
One of the biggest lessons Lisa learned was to give herself grace. “I put a lot of pressure on myself with taking care of the boys’ needs. I learned I need to take better care of myself. Jessica was easy to talk to, kind, educational, and understanding.”
Today, Lisa feels more confident advocating for her family. She has learned to set boundaries, speak up sooner when something doesn’t feel right, and trust her instincts. She now documents conversations, creates checklists, follows up through email, and feels more prepared to navigate services and advocate for her sons’ future, including working toward OPWDD Waiver services.
“Parent Network is a great resource for families,” she said. “Whether you’re able to fully participate or you’re simply listening while giving your child a bath, you still feel heard and supported. The staff are educational and resourceful, and if they don’t know the answer, they’ll tell you they’ll get back to you—and they do.”
Looking back, Lisa says Parent Network came into her family’s life exactly when they needed it most. “Honestly, they came at a time I really needed it, and I feel like I’m not the only parent who feels this way. I’m very grateful for an agency like this.”
When asked about the most important lesson she has learned, Lisa’s answer is one every parent deserves to hear: “Be kind to yourself. You can be doing all the right things for your child, but it’s okay to ask for help. Continue to educate yourself, keep advocating, and remember you don’t have to do it alone.”
Lisa’s story is a reminder that no family has to navigate the journey of raising a child with a disability by themselves. With the right support, resources, and compassionate guidance, parents can feel empowered to advocate for their children while remembering to care for themselves along the way. At Parent Network of WNY, we are honored to be part of that journey and grateful to families like Lisa’s for allowing us to walk beside them.
