Diaries of a Disability Family: Recent Episodes
Cassidy
Hear about about the struggles, triumphs, and all of the in between of life as a disability family. Mom & Daughter duo Joey & Cassidy discuss life as a disability family from their own perspectives as Grandma & Mother of a disabled child. Hear about resources, how to interact with disabled children, and more!
In this episode, we talk with Cass's friend Sarah Ayala who has experience in Special Education and who has helped us be B's advocate for IEP meetings and all things SPED.
Resources for Parents or Family with IEPs
- CA Regional Center https://www.dds.ca.gov/rc/
- FB groups
- Autism Speaks https://www.autismspeaks.org
- National Autism Association https://nationalautismassociation.org
- PBIS World (behavior and ADHD) https://www.pbisworld.com
- Center for Parent Resource and Information https://www.parentcenterhub.org
- The ARC https://thearc.org
- Check with the county you live in. A lot have government-funded resources that are phenomenal and not utilized.
- US DOE has Office of Special Education Programs (OSEP) their website has state-specific resources and parent training videos. https://www2.ed.gov/about/offices/list/osers/osep/index.html
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US
Welcome to Season 2 of Diaries of a Disability Family Podcast where we discuss life as a disability family. We took a year off due to scheduling conflicts, work, life, death, and more. Listen to our episode here!
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US
In this week's episode, we talk about what it's like for us to do a day outing with B. It can feel impossible to take a disabled child out for simple errands or for a zoo trip, but we promise - it's not! B loves getting out of the house, so we've found some tips and tricks that make it easier for us while we are out and about.
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US
In episode 7, we discuss feeding tubes. There are many types - but we mainly cover what we have personal experience with. We covered some commonly asked questions and talked all about the accessories that we find helpful, as well as some experiences we've had with the tube itself. We discuss our favorite "tubie covers" by CozyyCovers (you can find her on Facebook!). If you ever have any feeding tube related questions (other than those that should be for a medical provider) please reach out!
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US
We're back! After a two month hiatus due to work schedules for us both, we are excited to bring you this episode. We talk about public reactions we've experienced with B - good & bad. We discuss situations where things were inaccessible for B as a disabled child and how that impacts her (and, ultimately, us). We hope you all find this episode helpful & learn something.
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US
In this episode, we talk about how we prep B for different types of appointments, different ways you can help prep your child for appointments & procedures. We talk about the different ways to prep and reduce anxiety surrounding procedures & surgeries.
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US
This week we talk about including disabled kids (and adults) and why it's important to include them, what it's like in our experience when they're not included, and how much it means to B and us when she is included!
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US
This week we talked about some of our common struggles as a disability family, including the hectic week we had and an unexpected surgery a month sooner than we'd scheduled. We talk about the stress of living far away from family, finding sitters, and running a business. We also discuss the difficulty of having one of the parents deployed and how that impacted our family life. Listen in, and as always - if you have questions or comments please contact us!
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US
In our very first episode, we talk about B & her journey to getting her diagnosis - hypomyelinating leukodystrophy. She has two gene mutations on her DEGS1 gene which is responsible for the metabolism of fatty acids and turning them into myelin, the fatty white matter that insulates our brain and nerves.
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US
Welcome to Diaries of a Disability Family Podcast. We're Cass & Joey, Mom & Grammy to an adorable 5 year old girl who happens to be disabled. We are here to chat about the triumphs, struggles, and every moment in between of having a disabled child.
In this introduction you'll learn about the podcast and what we hope to accomplish, as well as learning a bit more about us as people.
Email us at diariesofadisabilityfampod@gmail.com
Follow us on Instagram instagram.com/diariesofadisabilityfampod
Music Credit:
Sky by Hotham | https://hothammusic.com
Music promoted by https://www.free-stock-music.com
Creative Commons Attribution 3.0 Unported License
https://creativecommons.org/licenses/by/3.0/deed.en_US