10 episodi
Fragile X Dad & Mom Erika Vasquez
-
- Infanzia e famiglia
Fragile X Dad & Mom is a podcast about a Dad and a Mom’s journey as they parent their two children who are diagnosed with Fragile X Syndrome. Their 8 year old son is also diagnosed with Severe Nonverbal Autism, Epilepsy, and Intellectual disability. This podcast is for all of those special needs parents raising special needs children where we can all come together and share the joys, the struggles and when sh&t gets real.
Parenting a special needs child can often feel isolating & can be frustrating until we meet other parents that share similar journey.
-
8 Interview with the author of Fragile X Fragile Hope: Elizabeth Griffin and Her husband.
Listen to our interview with these two amazing parents. Elizabeth and Jay both Fragile X parents of their son Zach whom has Fragile X. Elizabeth is the author of Fragile X Fragile Hope .
Find her book here @ https://www.amazon.com/Fragile-Hope-Finding-Parenting-Special/dp/1932096167/ref=sr_1_1?crid=36K6HTOCW6O8&keywords=fragile+x+fragile+hope&qid=1679947242&sprefix=frgaile+x+fragile+hope%2Caps%2C142&sr=8-1
Check out Elizabeth great website @ https://elizabethgriffin.com/
https://elizabethgriffin.com/ -
Interview: Kirsten Fowler New Book Release: Family, Faith & Fragile X
Join us as I interview Kirsten Fowler mom of four children, and author of the book Family, Faith & Fragile X.
Kirsten tells us all about what is like to raise three children with Fragile X Syndrome.
Why she decided to write her book and share her story.
Book can be found @ https://www.amazon.com/Family-Faith-Fragile-Special-Children-ebook/dp/B09ZF19C9K
https://www.barnesandnoble.com/w/family-faith-and-fragile-x-kirsten-fowler/1141735489
Find Kirsten Fowler @https://kirstenfowler.com/
If you would like to be a guest on Fragile X Dad & Mom Podcast email @ourfragilexlife@gmail.com -
7 Distance Learning or Homeschooling
We decided to ditch Distance learning and go with Homeschooling our kids instead. Listen to how our decision became about.
-
6 Dr. Randi Hagerman Special Guest Answering Fragile X Q/A
Dr. Hagerman is medical director of the UC Davis MIND Institute and director of the Fragile X Research and Treatment Center. She has dedicated her life to Fragile X Research with 40 years of working in the Fragile X field. Dr. Hagerman, her husband, Dr. Paul Hagerman, and their research team are the discoverers of Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), a late-onset neurodegenerative disorder.
listen to her as she answers some Q/A
Find Us on Facebook: https://www.facebook.com/erika.amaya0815 Instagram: https://www.instagram.com/ourfragilexlife/ Youtube at OurFragileXlife: https://www.youtube.com/channel/UCLkcITGVgGUvA4cgghC49Yw?view_as=subscriber Email: ourfragilexlife@gmail.com Blog: https://www.ourfragilexlife.com
Read more about Dr. Randi Hagerman
https://health.ucdavis.edu/team/children/598/randi-hagerman-pediatric-child-development--behavior-autism-neurodevelopmental-disorders-sacramento
Learn more about Fragile X syndrome https://fragilex.org/
https://www.fraxa.org/ -
5 Communication: AAC device for our nonverbal child.
Our Son Emmett turned 5 years old in March and he is still consider non-verbal. Emmett probably has less than 5 words in his verbal vocabulary. We have tried several different forms of communication for Emmett. We found that using a AAC device (Augmentative and AAC are tools or technology that help people communicate if they can’t (always) rely on speech) was the most helpful for him. Having a non-verbal child is very difficult you don't know when they are hurting and sometimes we do not understand what he needs. Emmett having a form of communication has been a priority for us. With his AAC device he is able to communicate some of his basic needs. This has relief Emmett of frustrations and meltdowns. His meltdowns decreased so much after he started to learn how to use his AAC device.
More information on AAC Device meaning etc. https://www.asha.org/public/speech/disorders/aac/
The program we use for Emmett is called Proloquo2go : https://www.assistiveware.com/learn-aac
Find Us on Facebook: https://www.facebook.com/erika.amaya0815 Instagram: https://www.instagram.com/ourfragilexlife/ Youtube at OurFragileXlife: https://www.youtube.com/channel/UCLkcITGVgGUvA4cgghC49Yw?view_as=subscriber Email: ourfragilexlife@gmail.com Blog: https://www.ourfragilexlife.com Intro&ClosingMusic By:SongTwo-Chord Terror - Pictures (Garage)@ clipdaddy.com -
4 Dealing with COVID19: Adapting to the New Crazy Normal.
Fragile X Dad & Mom Podcast have a very special guest our Fragile X daughter. On this episode 4 we will talk about how we are dealing COVID 19 “Pandemic” and how we are dealing with all the new changes. It has definitely been very difficult but it is not impossible. We are going through the motions just like everyone else. We are adapting to being home. You know that saying that when life gives you lemons make lemonade. Well I think we might just have to do that. Find Us on Facebook: https://www.facebook.com/erika.amaya0815
Instagram: https://www.instagram.com/ourfragilexlife/
Youtube at OurFragileXlife: https://www.youtube.com/channel/UCLkcITGVgGUvA4cgghC49Yw?view_as=subscriber
Email: ourfragilexlife@gmail.com
Blog: https://www.ourfragilexlife.com
Intro&ClosingMusic By:SongTwo-Chord Terror - Pictures (Garage)@ clipdaddy.com