Family Resource Group- September 26
DeafBlind Edition
As a new school year gets underway, September naturally brings a sense of fresh starts, new learning goals, and renewed routines. In this edition, we are excited to reconnect and share meaningful support for the journey ahead. Whether you are navigating new classroom transitions or settling into fall schedules at home, we hope this issue offers encouragement, inspiration, and practical connections for your entire family. We are honored to be part of your village, and we wish you and your loved ones a smooth, successful transition into the new school year!
As always, if you have any questions or feedback, please feel free to contact us at any time. We also invite the teachers, therapists and school staff who work with your child who has combined hearing and vision loss to register to receive a copy of the newsletter as well. There is a question on the registration page for professionals so that we can contact them. Please pass this on to everyone that supports your child.
Abby Denis & Patti McGowan
Family Resource Group (FRG) Editors
The Pennsylvania DeafBlind Project is excited to announce that we have been funded for the fourth year of the DeafBlind Project Grant Cycle, covering October 1, 2026, through September 30, 2027!
We are grateful for the continued opportunity to support children and students who are deafblind, their families, and the professionals who serve them across Pennsylvania. This continued funding allows the PA DeafBlind Project to build on the work of the past three years and provide ongoing resources, training, technical assistance, and support to help ensure meaningful educational opportunities for students who are deafblind.
We look forward to another year of collaboration, learning, and supporting the Pennsylvania deafblind community!
Now's your chance to let us know how we can help your family best over the next year.
Every family's journey is unique, and your voice matters. Please take a few minutes to complete our Family Needs Assessment and share your family's experiences, priorities, and support needs. The information you provide will help us plan meaningful resources, training opportunities, and family supports that reflect what is most important to children who are deafblind and the families who care for them.
Every family's journey with deafblindness is unique, but no one has to navigate it alone. This fall, families have two virtual opportunities to connect with others who understand their experiences, share resources, and find encouragement along the way.
Family-to-Family Communities (F2FC)
Don't miss your chance to register for the 2026–2027 Family-to-Family Communities!
Family-to-Family Communities (F2FC) bring families together through monthly Zoom meetings to connect, learn, and support one another. Whether you're looking to exchange ideas, discuss challenges, celebrate successes, or simply connect with other families who "get it," F2FC offers a welcoming space for meaningful conversation and community.
Meetings are held September 2026 through May 2027, with a variety of groups designed to meet the needs of families supporting individuals who are deafblind.
Learn more and register:
F2FC website: https://tinyurl.com/f2fc-deafblind
Direct registration: https://tinyurl.com/F2FC2026
Stay connected by following the Family-to-Family Communities Facebook page:
https://tinyurl.com/F2FCFacebook
Questions? Contact Carol at f2fc.deafblind@gmail.com.
Sensing Connections – Level 1: Peer-to-Peer Grief Support
Beginning in September
For parents who have experienced the loss of a child with deafblindness, Sensing Connections offers a compassionate, peer-to-peer support group where participants can share their experiences, process grief, and learn coping strategies alongside others who understand this unique journey.
This free, web-based group meets on Wednesday evenings for 90 minutes (5:30 PT / 6:30 MT / 7:30 CT / 8:30 ET). Participants are asked to commit to the full seven-month series (10 meetings) and will receive a participant packet with discussion topics and helpful resources.
To register, visit:
https://www.surveygizmo.com/s3/5577916/Grief-Support-for-Families-of-Children-with-Deaf-Blindness
For more information, contact Melanie Knapp at rmknapp14@gmail.com.
Whether you're seeking connection with other families or support through the grieving process, these opportunities are designed to remind families that they are part of a caring community. We encourage you to share this information with families who may benefit.
Evie was born in July 2024, and from the very beginning, she has brought so much joy into our lives. She is a very happy little girl with a smile that can light up the entire room. She loves swinging, playing with light-up toys, and being surrounded by the people who love her most.
We first learned about Evie’s Deafblindness through her newborn hearing screen and genetic testing. In the beginning, there were a lot of unknowns. We had more questions than answers, and that was one of the hardest parts. We were trying to understand her condition while also learning how to be the parents she needed us to be.
Those early days were not easy. Evie spent time in the hospital early in her life, and when we finally got home, it was difficult to find a rhythm. Everything felt new, uncertain, and overwhelming at times. But through it all, Evie kept showing us how strong she is.
Today, Evie spends most of her days with her Nonna, who plays such an important role in her life. They spend time playing, working through therapy-type activities, and helping Evie continue to grow and develop. Because Evie is not mobile yet, she relies on us to help her move and explore the world around her. That can be hard, but it has also taught us to slow down and appreciate every small step forward.
Evie communicates mostly through gestures and touch. Spoken language is still very early for her, but we continue to work on it and celebrate every bit of progress. One of our most meaningful memories was the first time she wore her hearing aids and started giggling. It was a moment we will never forget.
Evie has already been through more than most children her age. Between two broken legs and the challenges she faces with hearing and vision, she has given our family a completely different perspective on life. She has taught us how lucky we are, how powerful perseverance can be, and how much joy can exist even in hard moments.
Our greatest hope for Evie is simple: we want her to have the same opportunities as everyone else. We want her to be supported, included, challenged, loved, and given every chance to thrive.
We have been incredibly grateful for our early intervention specialists and for our immediate family, who have been fantastic throughout this journey. At the same time, we believe services should extend beyond age three. For children like Evie, especially if they are not yet able to attend a school that can fully support their needs, early intervention could make a meaningful difference.
To other families walking a similar road, our message is this: find a strong support system and keep pushing for what your child needs. Never settle. Ask questions, advocate, and surround yourself with people who believe in your child’s future.
Evie brings a smile to us every single day. Her story is still just beginning, but she has already changed our lives in the most beautiful way.
The National Intervener & Advocate Association will be moderating an online session especially for parents of children who are deafblind. The session is designed to empower families with clear answers, real examples, and practical guidance.
Tuesday, October 13, 2026 at 7 PM ET for 90 minutes
Registration information is coming soon.
Questions? Contact Donna Robertson at horndoctor@gmail.com.
Join us for an Ask the Expert Panel on CHARGE and Autism. The panelists are Dr. Kasee Stratton, Julie Maier, and Dr. Lily Slavin. The panel will be moderated by Dr. Tim Hartshorne.
Date: September 22, 2026
7:00 - 8:30 PM ET
Many children and youth with CHARGE syndrome are also diagnosed with autism. Is this additional diagnosis appropriate and useful? Three experts on both CHARGE and Autism will share their perspectives and address this question from their various experiences. Each panelist will speak for about ten minutes, and then the floor will be opened for questions from the audience.
Parents, educators, and other interested individuals are invited to join PaTTAN and the PA DeafBlind Project on Thursday, October 15 for a webinar exploring meaningful learning opportunities for students who are deafblind.
From 12:00–1:30 p.m. Eastern, participants will explore the Expanded Core Curriculum (ECC) for students who are blind or visually impaired and the Expanded Core Competencies for students who are deaf or hard of hearing. The session will highlight specific considerations for students who are deafblind and explore how a team approach can support meaningful, individualized learning opportunities.
Participants will:
- Integrate ECC concepts for students who are blind/low vision with Expanded Core Competencies for students who are deaf/hard of hearing to develop meaningful learning opportunities for students who are deafblind.
- Explore learning experiences that maximize communication, access, independence, and participation.
- Apply team problem-solving strategies to identify student needs and develop meaningful, individualized goals.
Webinar Agenda
- 12:00–12:20 p.m. — Expanded Core Curriculum for Students who are Blind or Visually Impaired; Expanded Core Competencies for Students who are Deaf or Hard of Hearing
- 12:20–12:40 p.m. — Expanded Core Concepts Considerations for Students who are Deafblind
- 12:40–1:00 p.m. — Using a Team Approach
- 1:00–1:30 p.m. — Discussion and wrap-up
Parents are welcome to attend! This webinar is an opportunity to learn more about the Expanded Core concepts and considerations that can support meaningful learning and participation for students who are deafblind.
