Fragile X Dad & Mom

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 @[email protected]

We decided to ditch Distance learning and go with Homeschooling our kids instead. Listen to how our decision became about.

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: [email protected] 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/

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: [email protected] Blog: https://www.ourfragilexlife.com Intro&ClosingMusic By:SongTwo-Chord Terror - Pictures (Garage)@ clipdaddy.com

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: [email protected] Blog: https://www.ourfragilexlife.com Intro&ClosingMusic By:SongTwo-Chord Terror - Pictures (Garage)@ clipdaddy.com

Welcome to Episode 3 with Fragile X Dad and Mom Podcast.   Sharing your Child's diagnosis with friends and family and building your support system. After you receive your child's diagnosis you feel so alone, and lost. Sharing your child's diagnosis feels overwhelming and scary. I know that for us it was. We didn't want anyone feeling sorry for us or to see us differently. I know I felt scared for my son and daughter I wanted them to still see them for who they truly are not just some diagnosis.  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: [email protected] Blog: https://www.ourfragilexlife.com Intro&ClosingMusic By:SongTwo-Chord Terror - Pictures (Garage)@ clipdaddy.com

When you are expecting a child you have all these expectations before your child is even born.  You can see your unborn child going to college, moving out to their own place, getting married, and even having a family one day.  All those expectations change when your child gets diagnosed with a disability.  Your expectations switch so drastically, and it makes it difficult to understand and accept your child's diagnosis.  On today's podcast we will talk about the expectations we had for our son Emmett before he got diagnosed with fragile x syndrome, and severe nonverbal autism. Our expectations have change but we have not lost "Hope". We are extremely hopeful for his future, and everyday he exceeds all our expectations. He is an incredible little guy.  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: [email protected]                         Blog: https://www.ourfragilexlife.com Intro&ClosingMusic By: Depechey(Electronic) @ clipdaddy.com

Hi there!  We figure it out! How to podcast?  Yeay! On our Intro Episode 1 you will get to know a little about ourselves our family, and what brought us to start this podcast. You will also hear about "THE DIAGNOSIS" of both of our kids.  Juan aka(Fragile X Dad), and Erika (Fragile X mom) want to offer you a place to unwind and not feel alone on this special needs parenting journey. We want to share the joys, the struggles, and when sh&t gets real.   We are so exited to share and support our fellow special needs moms and dads out there. Often times we as special needs parents feel alone in our journey with our child but we are truly not alone. So many special needs parents are walking on the same path as us.  When our both of our kids got diagnosed we felt so alone. We had so many feelings and no one understood what we were going through. We would try to tell others how we felt, but no one truly got it. Until we started meeting families like ours. We hope to offer a safe place where we can share our journeys together. Where we can empower each other to become the best advocates for our children.  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: [email protected]                        Blog: https://www.ourfragilexlife.com