Feeling This Life

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.  

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:  

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**

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.  

This season the Feeling This Life team read the book Thunder Dog by Michael Hingson. Thunder Dog is a New York Times bestseller telling the true story of a blind man, his guide dog, and the triumph of trust. The book tells the story of Mr. Hingson’s life and how he and his guide dog, Roselle, escaped the Twin Towers on 9/11.

In this episode Paige, Jenny and Dr. Cathy will share their thoughts on the book focusing on what stood out to them the most including how Mr. Hingson was raised and the courageous story he shares. Dr. Cathy discusses research and a brief history of visual impairments and how society and medical advancements have changed since the 1950’s.

Thunder Dog can be purchased on Amazon using the link below or wherever books are sold. It is also available as an Audible Audiobook.

Jenny interviews Amy Nichols, Amy is a teacher of the Visually Impaired at VIPS and has been in the field of education for over 30 years. Amy encourages families to concentrate on what their children can do and celebrate those milestones. She reminds us not to compare our child to others. Amy shares her own struggles as a parent and what helped her through the challenging times. Paige, Jenny and Cathy reflect on how encouraging Amy is and how important it is to focus on what we can do.

Dr. Cathy interviews Ali Huckins a Developmental Psychology Specialist, Licensed Professional Counselor and Board Certified Behavior Analyst.  Ali and Cathy talk about the importance of self-care in children and adults. Ali encourages listeners to find creative ways to incorporate self-care and celebrate what you achieve, reminding us that your self-care can look different than others. Dr. Cathy shares how she has changed her mind set to incorporate self-care. Cathy, Jenny and Paige reflect on how freeing it is to choose your own self-care.

Jenny interviews Meredith Howell. Meredith is the Director of Development at VIPS and the mom of Lola, a former VIPS student. Meredith tells Lola’s story, sharing how far Lola has come and what her and her family have learned along the way. Paige, Cathy and Jenny reflect on the ways the Howell family has worked to set Lola up for success even when the unknown was scary.  Paige shares her memories of Lola as a toddler.

Thank you so much for listening to season 2 of Feeling This Life! In season 3, we will be focusing on self-care and bringing you stories from families who have children with visual impairments and from adults who have visual impairments. We will explore their daily lives and hopes and dreams for the future.

The team discusses why our little ones need evaluations, considering the benefits of understanding your child’s strengths and areas for growth and needed support. They talk about the difference between evaluations and assessments, and many types of each in terms of developmental skills and vision specific. Dr. Cathy, Jenny, and Paige also share what can be frustrating about evaluations and assessments. Jenny and Paige use a few minutes to vent about their frustrations and Cathy shares some encouraging words.  

Jenny interviews Wendy Fagan, director of Envision Blind Sports. Wendy shares her expertise in helping children with blindness and visual impairment to actively participate in sports. Afterward, Jenny, Paige, and Dr. Cathy reflect about building a foundation for a young child to succeed in sports, games, and recreation as they grow and develop. Jenny explains how her daughter uses a “tapper” during swim meets. 

Have you ever felt confused, overwhelmed, or lost when it comes to the ins and outs of your child’s transition to school? This installment of Feeling This Life is for you!  Through this silly episode, Megan and Sonnie, both moms to preschoolers with visual impairments, go head-to-head to answer as many questions as they can about the Individuals with Disabilities Education Act (IDEA).  Kathy Mullen, director of education at VIPS and IDEA expert, shares everything a family needs to know to be empowered for the transition from early intervention to school based services.

Resources discussed in today’s episode:

Dr. Cathy talks with Amanda, mom to Ava, about embracing life when parenting a child with complex needs. Amanda shares vast wisdom and perspective about what it means to embrace life as a parent and about how to help your child thrive.   Jenny, Paige, and Dr. Cathy then reflect about Amanda’s attitude and story, the impact of involving family in home visits and therapy, taking breaks, and not vacuuming for your home-based providers.

International Foundation for CDLK5 Research:

Juanita Miles, preschool director at VIPS, shares the story of how her vision has changed as she lost, gained, and then lost her sight.  She shares insights she gained along the way, opens up about how it felt to lose vision and how she accomplished her goals when she wasn’t sure she could.  Jenny, Paige, and Dr. Cathy reflect about Juanita’s resilience.

Jenny, Dr. Cathy, and Paige reflect on reading “For the Benefit of Those Who See”, by Rosemary Mahoney.  Topics that come up include learning about the world using all our senses and blind content creators.  Jenny touches on how the students at Braille Without Borders (the school where Mahoney teaches) validate her experiences.

Jenny interviews mom and physical therapist Jamie Shake, who is visually impaired.  Jamie shares how her visual impairment impacted her schooling, and how her vision is just a regular part of her day at work.  Jamie shares her love of mowing grass.  Jamie and Jenny talk about the use of a smartphone as a low vision device.  Paige, Jenny, and Dr. Cathy reflect on Jamie’s wisdom as they discuss smartphones for accessibility and their own lived experiences with advocacy.

Dr. Cathy interviews Dr. Phangia “Nana” Dewald, an orientation and mobility specialist.  Cathy and Nana talk about the importance of orientation and mobility in a child’s early years and the impact that service can have on a child’s development.  Jenny reflects on her experience advocating for orientation and mobility services for her daughter, and how she felt as she spoke up.  Cathy, Jenny, and Paige then share their thoughts about how orientation and mobility, grief, and advocacy intersect.

Jenny interviews Carrie Garnett, her daughter’s teacher of the visually impaired.  They discuss their experiences around confusion when a child is able to see something they “shouldn’t” be able to, and when a child struggles with seeing something they “should” be able to both at home and at school.  Paige, Dr. Cathy, and Jenny reflect about the factors that influence a child’s functional vision.  Jenny shares how her feelings of need for control have been impacted by being “stumped”.

Season 2 episodes will be released the first Monday of each month at 7:00AM Eastern. 

Paige interviews Hailee Raymer, mom of a daughter with a visual impairment and complex needs.  Hailee talks about how her time at the pool with her daughter taught her a new way to connect, and gives advice to other families about what to expect when fostering social skills in their children.  Jenny, Dr. Cathy, and Paige talk about the potential for each moment to become an opportunity for building a strong foundation for social development.

Dr. Cathy interviews Dr. Penny Rosenblum about what to expect when teaching your child orientation and mobility skills. Dr. Rosenblum is a professional in the area of visual impairment, and has a visual impairment herself.  She shares practical ideas for helping your child to become an active traveler.

Brooklyn Spirito, mom of two girls who have a visual impairment, shares her story of advocacy as she and her husband journeyed to find an accurate vision diagnosis.  She dives into her grief and tells about learning to thrive. Dr. Cathy shares information about a vision screening for infants.

Dr. Cathy, Jenny, and Paige talk about how your child’s visual impairment may impact their access to daily activities and how to help your child participate meaningfully. Jenny shares her personal experience with helping her daughter participate in daily routines and talks about her feelings around how her daughter experiences the world.

Welcome to the first episode of Feeling This Life! This season on the podcast, Paige, Dr. Cathy, and Jenny will be talking with various guests on “what to expect” when you have a child who is blind or visually impaired. In this episode, Dr. Cathy interviews pediatric ophthalmologist, Dr. Robert King to get an idea of what parents should expect when visiting the eye doctor for the first time. He discusses what tools the doctor uses, what tests he performs, and why he performs them. Paige, Dr. Cathy, and Jenny conclude by chatting about what parents can do to be prepared for their child’s visit to the eye doctor.

Jenny shares information about "What To Expect", which is the theme for season 1 of Feeling This Life. 

Paige, Dr. Cathy, and Jenny introduce themselves and talk about how they came together.  They discuss their hopes and dreams for Feeling This Life.