Our guest for this month is Carol Spicer, an experienced pediatric occupational therapist with real life practical knowledge of how a diagnosis of a blindness or low vision can affect mealtime development!
Carol has worked with many families of children with blindness and low vision in both educational and medical settings, guiding them through mealtime developmental challenges. While her strategies she shares on Feeling This Life this month are research-based and promising practices, she will be the first one to remind us that the “occupation of children is play” and mealtime should be a positive experience for all.
The OT Toolbox: https://www.theottoolbox.com/
Feeding Matters: https://www.feedingmatters.org/
Children’s Colorado Hospital: https://www.childrenscolorado.org/just-ask-childrens/articles/sensory-processing-disorder/
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Children who are blind and low “Vision AND” have additional needs may receive early intervention services from multiple professionals. A list of those services can be found here.
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Paige sits down with Kacey Poynter for the first episode of season 5! Kacey shares her experiences as a parent of a child with several medical conditions. Kacey is Mom to Sonny, who has Dandy Walker Syndrome and is impacted by blindness/low vision. Sonny also has a tracheostomy and other medical needs. Kacey discusses her journey through diagnosis, treatment, and therapy for Sonny, highlighting both the challenges and triumphs she has faced along the way. She emphasizes the importance of parental advocacy, support systems, and listening to one's intuition when navigating medical and educational challenges for children with special needs.
Cathy, Jenny, and Paige reflect on the power of Kacey’s words.
Sonny's hashtag: #SonnyStrong
Kacey’s Blog Post:
https://adayinthelifeofkacey.wordpress.com/2022/09/13/the-incredible-story-of-sonny-jules/
Dandy Walker Alliance: https://dandy-walker.org/
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Children who are blind and low “Vision AND” have additional needs may receive early intervention services from multiple professionals. A list of those services can be found here. Please give us your feedback using this survey link: https://educationutah.co1.qualtrics.com/jfe/form/SV_39OmBvMih6MlgNw
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Get ready to join us for season 5 of Feeling This Life! The theme of season 5 is Vision AND, focusing specifically on how vision intertwines with all aspects of development and its relationship with other conditions.
This season's book talk (October Episode): "Life in 5 Senses" by Gretchen Ruben
https://gretchenrubin.com/books/life-in-five-senses/
https://www.amazon.com/Life-Five-Senses-Exploring-World/dp/0593442741
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Thank you for joining us for Season 4 of Feeling This Life! Please help us plan Season 5 by using this survey link: https://educationutah.co1.qualtrics.com/jfe/form/SV_39OmBvMih6MlgNw
Season 5 will start on September 1, 2025!
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Cathy spends time with Gina Fugate, computer science and technology educator, doctoral scholar, and teacher of the visually impaired. Gina, whose vision is impacted by Retinitis Pigmentosa, is the coach of the DOT5UDOGS, the robotics team at The Maryland School for the Blind. Gina remembers her early life and how changes in technology over the years have impacted her and the students that she works with. Cathy connects coding and robotics to early learning and basic concepts that benefit all. Gina shares her wisdom with families regarding technology and gives us a peek into what happens at robotics team meetings.
Jenny, Cathy, and Paige demystify some computer science terms that may be new to our listeners. Jenny tells about a free program that makes literacy accessible for readers, and Paige shares more free resources that families can access.
Gina’s website:
Dolly Partin Imagination Library and American Printing House for the Blind (APH) collaboration (Braille Tales):
https://www.aph.org/braille-tales/
https://www.aph.org/imagination-library-collaboration/
APH listing for Code and Go Mouse:
https://www.aph.org/product/accessible-code-and-go-mouse/
Amazon listing for Code and Go Mouse:
“Connecting Dots: A Blind Life” by Joshua A. Miele with Wendell Jamieson
National Library Service equipment and materials:
https://www.loc.gov/nls/services-and-resources/equipment-for-nls-materials/
First LEGO League:
https://www.firstlegoleague.org/
Dash Robot:
Blocks4All iOS app:
https://apps.apple.com/us/app/blocks4all/id1446492589
Swift Playground iOS app:
https://developer.apple.com/swift-playground/
Joy Player:
https://www.aph.org/product/joy-player/
Seedings Book Angel Program:
https://www.seedlings.org/free-programs/
Braille Institute Special Collection, referred to in this episode as Dots for Tots:
https://www.brailleinstitute.org/library/special-collection/
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Paige sits down with VIPS preschool teacher, Laney Reed. Laney, who has low vision due to bilateral colobomas, shares a look at the ups and downs her early life and schooling. Her experience as a person with low vision who teaches young children who are blind and have low vision gives us a unique perspective. Laney shares her humor and wisdom as a lifelong learner and talks about how she found a new tool.
Cathy, Jenny, and Paige consider the impact of Laney’s parents, and the impact that parents of children who are blind and have low vision can have on their children and their communities.
Link to “The Great IDEA Gameshow” episode:
https://open.spotify.com/episode/5kIwOomBrJkeh1FOfzSux5?si=rK9C3AdPSQmgq42ktTFC4Q
Link to IDEA statute:
https://sites.ed.gov/idea/statuteregulations/
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Dr. Penny is back to share with us her personal experiences growing up with low vision and how important it was for her to develop independence, whether it involved having chores at home, exploring and accessing textbooks at her university, or getting around as a non-driver. Check out her latest resources at the links below.
Links:
Dr. Penny's previous Feeling This Life episode: https://open.spotify.com/episode/2iSBlbAUjaCE6KuvzlFVqh?si=21Gi3BYOTLqcWxQYVfMRtQ
Project Inspire 2: Access and Equity in STEM Learning for Individuals who read braille
https://www.pathstoliteracy.org/resource/project-inspire/
Finding Wheels: Strategies to Build Independent Travel Skills for those with Visual Impairments
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Jenny interviews Kate, Kelsey & Hillary. Kate, Kelsey & Hillary are mothers who met through their children’s therapists. They have formed a unique friendship and help support each other through life events. Paige reflects on the amazing experience she has had working with these families. Cathy, Paige & Jenny all agree there is much to be learned from these amazing ladies!
In the episode we discuss stuffed animals called Tubie Friends and siblings.
Learn more:
https://tubiefriends.com/main/
https://siblingsupport.org
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Friends and VIPS graduates Addy Clarkson and Hailey Hitner join us for this episode of Feeling This Life. Along with Paige, Hailey and Addy reminisce about their early intervention and preschool years at VIPS. They explore how they became friends, their favorite ways to spend time together, and finally, they offer valuable advice to families on helping children build friendships. Cathy, Paige, and Jenny reflect on Addy and Hailey’s perspective about being magical unicorns, and Cathy shares some encouraging research about the impact of spending time with friends.
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Feeling This Life - December Book Club Little Bear Sees: How Children with Cortical Visual Impairment Can Learn to See
This month we discuss Little Bear Sees, a book written by a family who shares their journey in having a young child with a visual impairment. Aubri and Andrei Tallent, and Lukas’ grandmother Fredy Bush, walk us through Little Bear’s early medical and educational interventions as they learn to support his visual development. We will hear from other families of young children and their experiences and we hope that this read will inspire you to “Never give up” in creating a responsive learning environment for your child.
Find the book and related resources at https://littlebearsees.org/
Resources mentioned in this episode:
The early intervention vision staff of Anchor Center for Blind Children have created a collection of one page “Idea Sheets” that can be shared with families of young children with blindness or low vision. These Family Focused Vision Development Idea Sheets provide:
Simple strategies to enhance functional vision focused activities in to daily routines
Simple ideas to adapt the home environment for the identified visual behavior.
We hope that the Idea Sheets will be used in collaboration with a teacher of visual impairment in the home. Each Idea Sheet is available in English and Spanish. Find the Family Focused Vision Development Idea Sheets at this link:
https://anchorcenter.org/programs-services/family-support/family-focused-vision-development/
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In this episode of Feeling This Life, Cathy sits down with Paul Frazier, a graduate of VIPS who has albinism. Paul shares his journey of overcoming challenges and how he’s forged a path in diverse careers—from working with airplanes to serving as an athletic director.
Paul opens up about the importance of community, starting with his early life and his mother’s proactive role in finding support. Her example shaped his own approach to building connections and finding his community. Paul’s story is an inspiring reminder that resilience and the right support system can make all the difference.
A memorable takeaway from this episode is Jenny’s advice on finding and nurturing your own community—an insight that resonates for anyone looking to build a supportive network.
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Jenny interviews Carol Dahmke. Carol is the HR Manager and IT Coordinator at VIPS. She is the mother of three and grandmother of five. Carol has a unique perspective to share as she has raised two sons with a visual impairment, has a grandson with a visual impairment and grew up with a father having a visual impairment. Paige, Cathy and Jenny reflect on the ways the Carol felt during different times in her life and how early intervention changed the experience throughout the years.
More information about the PICCOLO: https://brookespublishing.com/product/piccolo/
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Rachel Bennett travelled a path that many mothers with a child with Cortical/cerebral Visual Impairment (CVI) encountered. The diagnosis was a long time coming and when it was discovered new world opened up for her son, Henry. Now Rachel helps to support and advocate for other families like hers through CVI Now at the Perkins School for the Blind. Listen as Dr. Cathy encourages Rachel to tell her story as the first episode of Season Four on Feeling This Life.
Want to learn more about CVI Now and their resources?
CVI Now Website: CVINow.org
CVI Now on Instagram: @cvinow
Subscribe to the monthly CVI Now newsletter
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The theme of season 4 is "Stories Beyond Sight: The Power of Perspective". We have a host of guests whose stories we can't wait for you to hear!
This season's book club: Little Bear Sees by by Aubri Tallent, Andrei Tallent, and Fredy Bush
https://littlebearsees.org/little-bear-sees-how-children-with-cortical-visual-impairment-can-learn-to-see/
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Email: feelingthislife@vips.org
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Cathy engages in a heartfelt conversation with Tammy Miller, dedicated teacher of the visually impaired (TVI) and mother to Nicole, who received early intervention TVI services. Tammy shares her journey of navigating her daughter's visual impairment and how the support of TVIs like Cathy inspired her to pursue a career in the field. In this episode, we explore the pressing need for teachers of the visually impaired and we invite you to consider becoming a TVI!
Jenny and Paige further delve into the theme of caring for your mind, sharing practical insights for families. From pursuing higher education to integrating mindful practices into daily routines, they emphasize the importance of nurturing mental well-being. We hope this conversation inspires you to consider ways to care for your brain!
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This episode is a follow up to Lola’s Story with Meredith Howell that was released on September 4th. If you have not listened to Lola’s story we recommend you listen to that episode before listening to this episode. Jenny interviews Rita DeVore. Rita is mother to Meredith and grandmother to Lola. Rita is also the Special Projects & Volunteer Coordinator at VIPS. Rita tells us about her relationship with Lola, how she supports her family and encourages other grandparents to get involved in the lives of their grandchildren no matter how difficult the situation. Dr. Cathy, Jenny & Paige reflect on the need families have for this special kind of support. Paige includes some great ideas on how to be involved with your grandchildren whether you live next door or across the country.
In Lola’s story Meredith discusses creating the NR2F1 Foundation with a group of other mothers. For more information on the NR2F1 Foundation visit their website: https://nr2f1.org/
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Cathy interviews Catarina Rivera, public speaker and disability and education inclusion advocate. Catarina, who has retinitis pigmentosa, has worn hearing aids from a young age and was diagnosed with a progressive vision disability at 17 years old. Paige, Jenny, and Cathy consider how knowing what is available and having a choice about it is both inclusion and self-care. They consider the positive impact of considering your strengths and how accidental accessibility makes life easier.
Catarina’s Socials:
Instagram: http://instagram.com/blindishlatina
X: http://twitter.com/catarinarivera
Facebook: http://www.facebook.com/blindishlatina
Linkedin: http://www.linkedin.com/in/catarinarivera
YouTube: https://www.youtube.com/@CatarinaRivera
Website: www.catarinarivera.com
Mentioned in today’s episode:
Haben: The Deafblind Woman Who Conquered Harvard Law, by Haben Girma, with a forward by Stephen Curry: https://habengirma.com/book/
Navigating Blindness: https://www.instagram.com/navigatingblindness?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==
Prevail and Braille Mama: https://www.instagram.com/prevailandbraillemama?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==
Crip Camp documentary: https://www.youtube.com/watch?v=OFS8SpwioZ4&pp=ygUJY3JpcCBjYW1w
Book: Demystifying Disability, by Emily Ladau: https://www.amazon.com/Demystifying-Disability-What-Know-Ally/dp/1984858971/ref=sr_1_1?hvadid=676936614912&hvdev=c&hvlocphy=9014255&hvnetw=g&hvqmt=e&hvrand=12604771403547326959&hvtargid=kwd-1990405576204&hydadcr=22167_13517494&keywords=demystify+disability&qid=1707748629&sr=8-1
Book: Disability Visability, by Alice Wong: https://disabilityvisibilityproject.com/book/dv/
Bret Dahmke Memorial Scholarship, a $500 scholarship that assists a Kentucky family of a child with a visual impairment to attend a local or national conference that is related to blindness/low vision.: https://vips.org/bret-dahmke-scholarship/
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Paige speaks with Sarah, Mom to Max, about caring for herself, for Max, and for her relationship with her husband, Garrett. Max is a young adult who has CHARGE syndrome and is deafblind. Over the years, Sarah and Garrett have grown closer together in their love for one another, and Sarah shares her advice for healthy relationships, including when to say "yes", and when to say "no".
Cathy, Paige, and Jenny discuss the encouraging statistics surrounding marriages of parents of children with disabilities, and Jenny shares her own relationship successes.
**Intimacy is briefly discussed from 30:00-32:00**
Article by Robert Naseef, Ph.D. and Brian Freeman, Ph.D.: Maintaining+a+Marriage.pdf
Sarah's YouTube channel: https://www.youtube.com/@sarahcawthon7511
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Paige interviews Ashley Reynolds and Brian Runyon, both graduates of VIPS. Ashley and Brian share what self-care means to them and their favorite ways to care for themselves. Ashley shares encouraging words for families of young children with vision loss.
Paige, Jenny, and Cathy reflect on how technology skills learned in the classroom can help children with blindness and low vision access activities they like to do.
Ashley and Brian's YouTube channel: https://www.youtube.com/@MiracleMarshmallows
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