Episode #36: Hearing Loss and Deafness in Children (Part 1)

Show Notes:

Do you know how to tell if your baby is deaf? Do you know what questions you should be asking your doctor? Our guests today are a mother-daughter duo, Cindy and Heather Phillips, who join us to talk about how Cindy and her husband have raised 2 deaf children and some of the decisions they’ve made to help their children become successful adults.

This is the first of a 2-part interview. During this part of the interview, we concentrate on the early years of the children being diagnosed with hearing loss, starting school, school changes, school accommodations, friendships, support for parents, and some fun stories sprinkled throughout. The next part will be released in the first week of October 2022 and will include navigating college as a deaf student, living on campus, plans for the future, and current work challenges. I’ll post the link to the episode here once it is posted.

Contact Cindy and Heather through Facebook or send them an email at info@waterprairie.com, and I’ll forward it to them. Cindy’s Facebook: https://www.facebook.com/cindy.brownphillips.7 Heather’s Facebook: https://www.facebook.com/heather.phillips.35325

Resources for the Deaf: American Society for Deaf Children: https://deafchildren.org/ Information for Deaf College Students: https://bit.ly/DeafCollegeGuide

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Read more

Episode #35: Happy World Narcolepsy Day!

Show Notes:

September 22 is World Narcolepsy Day

Let’s join together and celebrate World Narcolepsy Day by learning a little about what narcolepsy is and how it affects those who live with it. After having the opportunity of interviewing 3 different people with narcolepsy this year, I’ve learned a lot about it and some of the challenges it presents. If you haven’t heard those interviews, I’ll list them below so you can hear the stories of Christopher, Julie, and Kenya.

If you’re on Instagram, check out our posts today and comment on some of them to show your support for those living with narcolepsy!

Narcolepsy Episodes:

Christopher’s Story: Episode #5 (Misunderstood Invisible Disabilities) & Episode #8 (Wake Up And Play Ball!)

Julie’s Story: Episode #30 (Narcolepsy and Sleep Disorders)

Kenya’s Story: Episode #33 (Childhood Narcolepsy)

Instagram: @water.prairie

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Read more

Episode #34: What Can a Child With Autism Do?

What does a child with autism do after high school?

Show Notes:

Have you ever wondered what activities are available for a child with autism? Our guest today has a 20-year-old son with autism. Katia shares her journey of learning to parent a child with autism and how she made decisions throughout her son’s childhood starting with a disagreement with the doctor about a diagnosis and her son’s need for early intervention. Today, her son is a happy young adult who is involved in several different types of activities.

Send questions for Katia to info@waterprairie.com

Resources Mentioned in This Episode:Florida Scholarships for School:  https://www.stepupforstudents.org/Dive Heart Foundation: https://diveheart.org/Flight Programs for Kids:Challenge Air: https://www.challengeair.com/Vital Flight: https://vitalflight.org/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Read more

Episode #33: Childhood Narcolepsy

Show Notes:

Our guest during this interview is Kenya Gradnigo, a social worker and a member of the board for Project Sleep. Kenya shared information about being diagnosed with narcolepsy as a young child and some of the lessons she’s learned on how to manage life with narcolepsy.

Contact Project Sleep:

Kenya’s Instagram: @unapologetically_ken

Project Sleep Website: https://project-sleep.com

Navigating College Toolkit: https://bit.ly/narcolepsyschool

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Read more

Episode #32: Disability Awareness Education for Children

Disability Awareness

Show Notes:

Do you have a child with a disability? Have you ever thought about how others might view a disability? Can you tell your child how to explain their disability to their friends?

Our guest for this episode is Gabriella Tiberio, a teenager who has created what may be the best representation of disabilities we’ve seen! She may be young, but she understands what it means to make disabilities a part of who someone is and not the only characteristic that people see.

Join us for this interview and find out what brought Gabriella to write a children’s book about disability awareness and how it’s being used to speak out for children in their schools and how others are using it to teach their children how to understand why some people they meet might need special accommodations at times.

Contact Gabriella:

Instagram: @gabriellatiberiooOrder Mrs Jones’s Wonderful Class(As an Amazon Associate, I may receive a commission if you make a purchase. This is a way you can help support the podcast!)

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Read more

Episode #31: Accessible Children’s Literature – Low Vision Books for Young Children

How would you feel if you wanted to share a bedtime story with your child, but the process was too difficult? Our guest today knows just how frustrating it is to read a children’s storybook when you can’t see the words on the page. The mother of 2 young boys, Krystle Boateng took it upon herself to find a way to share a bedtime story with her two young sons, and she’s sharing her solution with the world!

Listen to this episode to hear Krystle’s story of frustration in trying to find a way to simply hold her children on her lap and read them a bedtime story. Many take this for granted, but there are parents and grandparents who would love to experience this traditional bedtime routine. However, for those with vision loss, it is a challenge to find a way to hold a book with standard size print, read the words to your child, and also allow the child to see the pictures on the page. Krystle’s frustration turned into an entrepreneurial mission and ended with her starting her own company and publishing her first book!

Contact Krystle:

Website: https://www.iabilitybooks.com/

Instagram: @inside_ability_books

How to order Bedtime, Sleep Time, Nighttime, Dreamtime, A Large Print Bedtime StoryStandard EditionReverse Contrast Edition

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Read more

Episode #30: Narcolepsy and Sleep Disorders

Show Notes:

Our guest during this interview is Julie Flygare, the president and CEO of Project Sleep and host of the Project Sleep podcast. Julie shared information about narcolepsy and some of the exciting things that are happening through Project Sleep.

Some of the key information we discussed are the difference between type 1 narcolepsy and type 2 narcolepsy, cataplexy, current research for narcolepsy, and accommodations for students with narcolepsy.

Contact Project Sleep:

Website: https://project-sleep.com

Podcast: https://project-sleep.com/podcast/

Pediatric Narcolepsy Survey: https://project-sleep.com/wp-content/uploads/2021/10/Pediatric-Narcolepsy-Boston.pdf

Julie’s Book, Wide Awake and Dreaming: A Memoir of Narcolepsy: https://amzn.to/3wgE0H4

Genetic Marker for Narcolepsy: HLA-DBQ1*06:02More information on page 11: https://project-sleep.com/wp-content/uploads/2021/09/Science-of-Narcolepsy-Toolkit.pdf

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Read more

Episode #29: Parenting a Child With Autism

Parenting a child with autism isn’t easy, and adding homeschooling could make it more difficult. In this episode, you’ll meet Fiorella Perkins. She is a “girl mom, homeschooling, autism advocate,” and she spends some time talking about how her daughter was diagnosed with autism just before the COVID-19 pandemic hit. Some of the challenges she faced in finding ways to help her daughter may not be the same today, but Fiorella has some creative ideas of how you can help support your child with autism.

Listen to her story and why she has become a strong voice that is helping thousands of other parents guide their children and support each other! This is the first of 2 interviews with Fiorella.

Be sure to join us for the second part of the interview to learn more about what she is doing to create a supportive environment for families who have children on the autism spectrum and how you can create the same where you live!

Contact Fiorella: @fiorella_perkins

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Read more

Episode #28: Johnny Kincaid’s Story (part 2)

Johnny Kincaid is the child actor who plays Baby Jack on the NBC series This Is Us during the 2022 Final Season of the show. Johnny has albinism and nystagmus, and his mother, Marisol, is an advocate for visually impaired children. Marisol uses her Instagram account as a platform to teach others the importance of proper care for those with albinism and general information about different eye conditions.

This episode is the second half of an interview Marisol Kincaid gave on the Water Prairie Chronicles podcast to talk about parenting a child with albinism, Baby Jack on This Is Us, and how Johnny Kincaid got his first acting job on the NBC TV show. In this fun interview, listen in as Marisol and Tonya share their experiences in parenting a child with albinism and nystagmus and compare notes about raising their children. During the second part of the interview, Marisol shares how Johnny got started with acting and some of his experiences while filming.

Contact Marisol: @holdingsunshine on Instagram

More Information on Albinism:
https://rarediseases.org/rare-diseases/oculocutaneous-albinism/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie
Thank you to our Super Fans: Praveen S.

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/
Artist: http://audionautix.com/

Read more

Episode #27: Parenting a Child with Albinism and Nystagmus (Part 1)

Johnny Kincaid is the child actor who plays Baby Jack on the NBC series This Is Us. Johnny has albinism and nystagmus, and his mother, Marisol, is an advocate for visually impaired children. Marisol uses her Instagram account as a platform to teach others the importance of proper care for those with albinism and general information about different eye conditions.

This is the first half of an interview Marisol Kincaid gave on the podcast to talk about parenting a child with albinism, Baby Jack on This Is Us, and how Johnny Kincaid got his first acting job on the NBC TV show, This Is Us. In this fun interview, listen in as Marisol and Tonya share their experiences in parenting a child with albinism and nystagmus and compare notes about raising their children.

Contact Marisol: @holdingsunshine on Instagram

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie
More Information on Albinism:
https://rarediseases.org/rare-diseases/oculocutaneous-albinism/

Read more