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!
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!
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!
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!
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.
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!
Fragile X Awareness Month is here! For the whole month of July, we are going to be releasing weekly episodes in effort to be a part of supporting, educating and creating more awareness of Fragile X Syndrome! I'm so excited to kick off awareness month joined with my husband Moe! We talk about what it means to be an advocate, female full-mutation carrier, National Fragile X Conference, and much more! Share Talk Fragile X podcast with your friends, family, educators, neighbors, etc.! Help us make this an impactful awareness month of 2022!!
On this weeks episode of Talk FX, I’m joined with President & Co-Founder of FRAXA Research Foundation, Katie Clapp! As well as the Community Services Director, Holly Roos! We chat about all things World Fragile X Day 2022, research, the re- naming of the FMR1 gene responsible for Fragile X, and more!
In this weeks episode I’m joined with Author, Kirsten Fowler! Mother of four children, with three having Full-Mutation Fragile X Syndrome. Kirsten shares about her vulnerability and inspiration behind writing her book, what it’s like being a mother to three children with fragile x, and much more!
This week's episode is a special one!! I'm sure so many of you have seen the news of the change in name of the FMR1 gene responsible for Fragile X Syndrome! This has been a long time coming! I'm looking forward to how this positive step forward creates a more appropriate and factual description of Fragile X Syndrome and moving away from the negative connotations. In this episode, I talk about the history of the FMR1 gene, why this is an important step forward as a female full-mutation carrier, and much more! You don't want to miss this episode!!!
Surprise!!! On this weeks episode of Talk FX, I had the pleasure of chatting with Author, Blogger, and Mother of 4 children, Kate Swenson! Kate was recently on the Today Show promoting her new book and sharing a snippet of her and her son Cooper’s story! Since then, her new book has become a Best Seller on Amazon!! When she agreed to be a guest on Talk FX, I about jumped out of my chair! It was such a pleasure to welcome Kate on the podcast and talk about her journey in writing Forever Boy, her blog Finding Cooper’s Voice, and learning more about her and her sweet family. You don’t want to miss this special episode!! Links to buy her new book and to follow her on social media are all on our website and Instagram @talkfragilex!
On this weeks episode of Talk FX, I’m joined with Sara Knudson, a passionate mom of three children, with two of the three being affected by Fragile X Syndrome. Sara shares about her children’s diagnosis stories, the struggles, the joys, and the amazing resources and support they have available in their home state of Illinois! It was such a pleasure to have Sara on Talk FX! You don’t want to miss this episode!
Prioritizing self-care is not always simple! Whether you're a mom of a fragile x child, self-advocate, or full-mutation carrier, it can be challenging to find time for yourself to be alone or do what helps you to reset or re-energize! In this week's episode of Talk FX, we discuss not only the importance of prioritizing self-care in your life, but also the different forms of self-care to consider implementing into your daily, weekly, or monthly life.
On Tuesday, March 1st the National Fragile X Foundation will be having their annual Advocacy Day virtually! This is an opportunity for families affected by Fragile X Syndrome, caregivers, self-advocates, doctors, and researchers to meet with their members of congress and be an advocate for fragile x. Whether that's sharing your fragile x diagnosis story or advocating for continued funding in research! It's an empowering opportunity to be a part of the fragile x community! On today's episode we also talk about the other important aspects of advocacy! We hope you leave this episode feeling encouraged as a self-advocate, full-mutation carrier, or parent of a child with fragile x!
If you're reading the title of this episode and you're thinking "this doesn't pertain to us yet, think again!" In this week's episode of Talk FX, we discuss what it looks like to prepare our children for employment. We understand that there is a pretty big spectrum of families in the Fragile X community with children that have either had employment experience, volunteer experience only, or maybe even hasn't had a job before! Well, we are not only going to discuss what the employment process can often look like for individuals with developmental delays, but we are also going to specifically focus on preparing our Fragile X children for navigating the general public as it pertains to employment. I share a recent story about a developmentally delayed employee's experience interaction with a negative customer and how this was a reminder that not every individual knows how to interact with someone with developmental delays! This is a topic that I'm incredibly passionate about and can't wait for you to listen! I also discuss the importance in inclusivity within the employment world!
On this weeks episode of Talk FX, it was so special to welcome my Aunt Michelle and Uncle Jeff, and my cousin Nathan for a raw family conversation about Fragile X Syndrome. We discussed the education system, advocacy, fragile x experts, supports and much more. I’m so thankful for my family and their willingness to join me on Talk FX. We hope this episode brings you encouragement and hope for your family.
Joining us for our second episode of 2022 is President & Co Founder of FRAXA Research Foundation; Katie Clapp! She shares with us the exciting research proposals coming up for FRAXA to support, the 2nd annual World Fragile X Day on July 22nd, 2022 and how you can be involved, and much more!
What better way to start off the new year then kicking off Season 5 of Talk FX with a very personal episode! I'm excited to have my husband Moe on with me for the first time ever! We talk about my diagnosis story, how fragile x has affected our relationship, the hardships, and more. In the countless episodes of Talk FX that I've done, I have had yet to get more personal or vulnerable. However, last year I was so encouraged and inspired by the many families that boldly and courageously shared their FX diagnosis stories with me on Talk FX, that I've decided to do the same, with the help and support of my husband. You don't want to miss this episode!
Cheers to our very last episode of 2021!! I've had many conversations with Fragile X families in the last few months regarding a topic that is so important. I've also seen so many families reaching out for support on this topic as well. That is on preparing our children for doctor's appointments! There are so many factors that come into play in preparing our children for doctor's appointments. I hope that the encouragement we offer is helpful to our fragile x community in supporting your child in the best way possible! You don't want to miss this episode!
In this episode of Talk FX, we dive deeper into the important topic of transitioning from grade school to adulthood for our FXer's! Where do I start? What questions do I ask? What services are available in my state? Whether you're a newly diagnosed family, self advocate, full-mutation carrier, or you just stumbled upon this podcast, you don't want to miss this episode!