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During Fragile X Awareness Month there’s lots in store, including an update on my family and I’s journey with Fragile X!
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It’s Fragile X Awareness Month! As we kick off this important month, Talk Fragile X has an important announcement!
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It’s great to be back on Talk Fragile X Podcast! I share some updates to our Fragile X journey, what you can expect from the podcast this year, and more!
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October got away from me, but I still wanted to share this important episode with you all! After all, Disability Employment Awareness shouldn’t just be focused on for one month out of the year, but rather every day! It’s an ongoing effort that needs our support!
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The CEO Commission for Disability Employment was created to increase opportunities for individuals with disabilities to obtain and/or maintain employment. The CEO Commission for Disability Employment focuses on three main goals: Policy, Practice and Culture! Tune in to learn more about CEO Commissions purpose, current focuses, and what Disability Employment Awareness Month means to them! You don’t want to miss this opportunity to hear from such a kind and mission driven Director, Rob Snow!
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This month is Disability Employment Awareness Month! I'm SO passionate about this very topic! As an Employment Specialist who sees and experiences firsthand the challenges and difficulties of promoting inclusion in the workplace for our neurodiverse peers, I share my experiences, encouragement and support! Tune in and share with your friends, family members, educators and even your boss!
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I had the pleasure of welcoming Katie Clapp and Holly Roos from FRAXA Research Foundation on this weeks episode of Talk Fragile X! Katie and Holly talked all things World Fragile X Day 2023, as well as FRAXA’s significant research advancements that have been made this year, and what they look forward to in 2024. You don’t want to miss this episode!
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Fragile X Syndrome is the leading genetic cause of Autism. It's caused by a mutation of the FMR1 gene responsible for cognitive and behavioral development. Fragile X is often passed on unknowingly. The month of July is Fragile X Awareness Month! An opportunity to continue to spread more awareness of Fragile X, and celebrate the organizations like FRAXA Research Foundation and The National Fragile X Foundation and their efforts to support and find effective treatments for individuals living with Fragile X. It's also an important opportunity to spread awareness of Fragile X to those who may not have otherwise heard of it. In this week's episode, I talk about the importance of awareness month, as well as an EXCITING special announcement! Tune in to find out more!
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I'm back! It's been several months since I've released a new episode. It's been a hard last couple of months for so many reasons. I shed some more light on this in the episode, and I hope you'll take a listen. Don't worry, I'm not missing Autism Awareness Month!!
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It's crazy that we are in 2023 now! I had a great time off my podcast duties for the last month or so of December, and now I'm ready to get to work! What better way to kick off the new year with a rare vulnerable episode. I don't often share life updates, but this one in particular I felt was important. Tune in to hear more!
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If you caught the Friends reference in the title, big thumbs up to you! If not, it's okay, you're still welcome here! It's crazy to think this is our last episode of 2022, but we are here! I will be taking a break from the podcast world for the remainder of the year to spend time with family. I will also be taking this time to continue making plans for 2023. I'm excited for another year of growth, advocacy, and connecting with all of you in the Fragile X community. Be sure to tune into this week's episode. There's so much to talk about! Otherwise, see you next year!
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In this week's episode, I talk about the importance of Disability Employment Awareness Month, and how it's an opportunity to talk about the transition for our neurodiverse peers from high school to competitive integrated employment. Which is one of the biggest changes our neurodiverse peers face! For many of our children, routine is an essential part of their day to day lives. As well as a consistent environment. Both of these consistencies change once they face adulthood. As well as the opportunity for our neurodiverse individuals to experience employment and all that it entails. As a CRP (Community Rehab Provider), I talk about the challenges and successes that come with fighting to create inclusive employment opportunities for neurodiverse individuals. I also talk about how providers, educators and even families can be a part of preparing them for successful employment. You don't want to miss this episode! Be sure to subscribe to Talk Fragile X Podcast and leave us a review & comment. We want to hear from you!
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Something that doesn’t seem to be talked about enough is the journey of finding the right therapists for our special needs children! For so many families, this can be a very challenging and emotional process. Ashley shares her journey of finding the right therapists for her full-mutation Fragile X son, Sebastian. She shares her emotional journey, as well as encouragement of important characteristics to look for in a therapist! She also shares a powerful reminder of why momma’s know their kiddo’s best!
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Happy September! On this weeks episode of Talk FX I share some life updates and the importance of encouraging our neurodiverse peers to expand their comfort zones, and how I've been able to see this first hand. Tune in and subscribe to Talk Fragile X Podcast!
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About a year ago, I had the pleasure of meeting Andrea when she reached out to me on social media one day. We ended up connecting on a phone call and talked about life, family, faith, and of course Fragile X for over an hour! Since then, we talked about continuing our conversations on a future podcast episode. However, life got busy for both of us, and Andrea and her husband welcomed a precious baby girl to their now family of 5. The timing of us getting together to do this episode could not have been better! I’m so grateful for Andrea and her amazing perspective she shares as a mom of three, with one whom has full-mutation Fragile X Syndrome. You don’t want to miss this episode!
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This is an important episode that I hope you will listen to, share, and be encouraged by. I also hope that you will hear my heart in why we have work to do to continue to work towards a more inclusive environment for our neurodiverse peers!
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Maintaining hope in our lives is a daily journey. Whether you're a parent of someone with Fragile X, self-advocate or full-mutation carrier. Often times the amount of hope we have is dependent on how our day is going, how our children are behaving, or discouragement in general. Not to mention our hope in having better treatments for our children affected by Fragile X, or even a cure! On this week's episode of Talk FX, I share from a raw and personal perspective of my own journey of maintaining hope and how it's been going lately. I also share what I've learned from other Fragile X families and experts that has really carried me through the difficult times. Tune in and share!
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Stephanie Hanrahan was just your seemingly average housewife until she grew tired of pretending and decided to make her private journal public. Since sharing her story, Stephanie has achieved viral success with her website Tinkles Her Pants, which chronicles her journey as a wife to a husband with chronic illness, mother to two children with Autism, and a woman who often unravels then finds her footing again. She can be found sharing nothing but the truth on the Today Show, CNN, Yahoo! News, The Daily Mail, and most recently her TED Talk: The problem with being perfect. Stephanie is also the founder of the 501(c)3 non-profit Labeled & Loved, which provides respite and resources for caregivers of children with disabilities, as well as the host of Labeled & Loved Podcast.
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I can’t say enough about Kirsten Fowler! She’s a mother to three children with full-mutation Fragile X, is a female Full-Mutation carrier just like myself, and is overall just one of the most kind and genuine individuals that I’m so blessed to have met! When thinking about how I wanted to create part 2 of the Fear & Anxiety episode, I immediately sent Kirsten a message asking if she would be willing to join me in talking about fear and anxiety not only from a carrier perspective, but also from her three kids perspectives as well. Fear and anxiety are not easy challenges to talk about, especially as it pertains to fragile x. I’m so grateful for Kirsten’s willingness to join me in this conversation! She has so much valuable information and experiences to share, so tune in and we hope each and every listener is encouraged!
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This is an important episode that I hope each and every one of you will take the time to listen to! Please share with your friends, family and whoever else that you feel could benefit from hearing this message. Let's continue to create a more inclusive, understanding and supportive environment for our neurodiverse community!
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