OHS: Our Hidden Stories Podcast

In this episode, we talk with licensed registered dietician Jaimie Cole of Think Nutrition about the very important concept of NUTRITION and especially how it can help our children with disabilities and special needs (more about Jaimie’s education and experience below).

We talk about what constitutes a balanced diet; probiotics vs. prebiotics; why food sensitivities and allergies are on the rise; the gut-brain connection; the difference between a nutritionist and a registered dietician, how to make a nutrition expert a part of the team optimizing your child’s health, and more.

Please feel free to share your experiences at the URL for this episode (https://ourhiddenstories.com/podcast/s02-e06-nutrition/).

Some of the resources mentioned in this podcast:

• Jaimie’s website is http://www.thinknutritionrd.com/about.html
• NSF (organization that certifies products as organic): https://www.nsf.org
• How to find a registered dietician: https://www.eatright.org
• Recommended diets for maximizing cognitive function: Mediterranean diet; MIND diet
• Jaimie can be reached with questions at [email protected]

Jaimie Cole, MS, RD, LDN is a licensed registered dietician/nutritionist with dietician training from Utah State University and a masters in Nutrition from Bastyr University. Her experience with nutrition is diverse and ranges from educating large groups in the community, her role as a nutrition professor, to working one-on-one with oncology, diabetic patients, and many others to help them reach a state of better health. Jaimie’s philosophy on nutrition is unique and creative, with inspiration coming from being a fun-loving whole foods inspired nutritionist. The driving force behind her passion is loving the journey of guiding her patients and families towards personal wellness goals.

Jaimie’s youngest son, Bodhi is 6 and has Phelan-McDermid Syndrome.  Bodhi has struggled with GI symptoms common in this disorder, primarily loose stools and at one point due to sensory food aversions was underweight as a toddler.  This experience has helped her understand the struggles special needs families go through in trying to adapt nutrition to their unique needs.

In this episode, Talya and Joanna share their experiences with a familiar struggle for parents of children with special needs and disabilities: SLEEP! Not only are sleep disturbances and disorders common among this population, but they are also often harder to handle due to other complications such as intellectual disability. Solutions can be hard to find, and sometimes they are expensive and not necessarily covered by insurance.

Join us as we share our stories about sleep (or lack thereof!) and talk about a variety of sleep-related topics, such as sleep studies, medication, sleep hygiene, safety beds, insurance, and even sleep ninjas. We think this discussion will be relatable for parents who have experienced these struggles; helpful for those at the beginning of a journey like ours; and eye-opening for for people who have never dealt with this particular challenge.

We would love to hear from you about *your* child’s sleep challenges and/or solutions, and especially so if your experience is something we haven’t described. Please write comments on the episode page.

In case anyone is interested, the Privacy Pop tent Talya mentioned which was a good temporary solution (and which they still use for travel) can be purchased here: https://www.privacypop.com. The more sturdy safety bed which they ultimately got for Asa can be found here: https://safetysleeper.com (though it’s hard to believe, this is one of the least expensive options, and as Talya mentioned, this company typically offers a deep discount if you have proof of insurance denial).

In our first episode of the Our Hidden Stories – Nonprofit Spotlight, a part of the Our Hidden Stories project, your host Joanna Kent speaks with Colleen Buccieri from the Sarasota, Florida-based nonprofit, Face Autism. Colleen tells us about the past, present and, future of Face Autism and how current events have changed but not stopped their programming and fundraising efforts.

To learn more about Face Autism from their programming to volunteering, please visit their website at https://face-autism.org/. You can follow them on Facebook https://www.facebook.com/faceautisminc  or, if you would like to donate, please do so on their secure website https://face-autism.org/donate/ as every dollar goes towards low to no cost for family programming and never a salary as they are 100% volunteer run.

Even though we’ve put the brakes on many types of travel, with vaccines being distributed, a return to normalcy is on the horizon. But for families with members who have medical, mobility, and developmental challenges, even in normal times travel can be quite a challenge.

Today our guest is Sarah Marshall, founder of TravelAble Vacations and a trained travel professional with a mission to empower families to live adventurously. TravelAble is a premier travel agency for accessible travel. Her mission is to create a travelable world by designing custom accessible adventures that perfectly support a traveler’s unique desires, needs, and budget. Sarah has passion for exploring the world and has lived in many different countries and traveled extensively in many more.

Sarah is also a Autism mom, and is a certified Autism Travel Professional and a Certified Accessible Travel Advocate. She is a sought-after nation-wide speaker on autism adventure, presenting around the country at events such as Abilities Expos, about her secrets to travel success. She is also a consultant for many hotel and destination brands, working towards making their amenities and offerings more accessible.

In 2018, based on her personal experiences, Sarah founded TravelAble, a full service travel agency and disability travel advocacy business. TravelAble has a revolutionary consultation process, taking a family’s unique concerns and designing an individualized and custom travel plan so that the whole family can make vacation memories to last a lifetime. You can learn more at travelablevacations.com. You can also email her at [email protected].

Also, here are some of the amazing resources Sarah shared with us during the podcast (be sure to listen for all of them!):

• Autism Certifiied Destinations: https://ibcces.org/travel-leisure/
• Sensory accessibility and inclusion for those with invisible disabilities: https://www.kulturecity.org
• Wheelchair travel blog: https://curbfreewithcorylee.com
• Wheelchair-friendly travel resource: https://wheelchairtravel.org
• Individualized QR Codes for individuals with special needs: https://ifineedhelp.org

In the last episode of Season 1, recorded before Thanksgiving, Joanna and Talya discussed the challenges that “the Holidays” can pose to families with children living with special needs and disabilities. In today’s episode, they reflect on how each of their holiday seasons went: the good, the bad, and the ugly. The difficulties certainly didn’t disappear, but some things went better than expected, and they also learned a lot.

As promised, you can see Talya’s son Asa in this video beginning to understand the concept of a present.

And we would love to hear from you: How did YOUR holidays go? What went better than expected? Did anything go worse? Please leave us a comment on the URL for this episode.

Our guest today is pediatric physical therapist Cyndi Stedman. Cyndi is a knowledgeable and experienced therapist who thoroughly loves her work. 

Cyndi received her Doctorate degree in Physical Therapy from the University of Illinois at Chicago in 2009. Since then, she has worked exclusively in pediatrics. She has experience working in the schools, doing in-home therapy, and in Early Intervention. She recently started her own practice, Starting Point Physical Therapy, in August of 2020, and she plans to hire a few PTs in the next 3-5 years. Cyndi is also mom to three boys, ages 6, 4, and 2, and her 2-year-old receives PT and OT services through Early Intervention.

If you enjoy our show, please check out and “like” Cyndi’s business on Facebook!

Also, if you have any questions for Cyndi, please write them in a comment on this episode on the OHS website. We will do our best to get some answers for you!

The holidays–which can already be stressful–pose extra challenges for families with children who have special needs and disabilities. In this episode, Talya and Joanna speak frankly about important issues such as *where* to spend the holidays, handling difficult emotions, and–perhaps most importantly–the challenge of *GIFTS* for children who can be very difficult to buy for.

We would love to hear your thoughts on this subject. Please feel free to comment on the Holidays for the Special Needs Family page for this episode.

Visit the Our Hidden Stories Special Needs Audio Blog site for more information.

In this second episode with genetic counselor Dena Goldberg (a.k.a. Dena DNA), Dena takes us on a deeper dive into the science of genetics, with a focus on how and why pediatric genetic-based disorders occur. We then have a question and answer session, in which Dena replies to questions that have been submitted to us from parents and caregivers from all around the US.

Dena Goldberg, MS, CGC is a genetic counselor living in Los Angeles, with a dream of bringing genetic counseling to mainstream media and becoming the first TV genetic counselor. She previously served as the Gordon and Betty Moore Endowed Counselor of Hereditary GI Cancer Prevention at University of California, San Francisco (UCSF). She is the founder of DenaDNA.com, a website with a mission to spread awareness of medical genetics and genetic counseling to the general public through media and marketing techniques not typically used by the medical community. Inspired by her sister with a chromosome abnormality, she has been involved as a sibling support leader and has developed educational programming for the Chromosome 18 Registry and Research society. She is a strong proponent of using genetic information to improve the lives of and empower individuals with disabilities and their family members.

Check out all the great work Dena is doing via her website and all her social media outlets!

Website: www.denadna.com
YouTube Channel: https://www.youtube.com/denadna
Twitter: https://twitter.com/DenaTalksDNA
Instagram: https://www.instagram.com/dena.dna/
TikTok: https://www.tiktok.com/@denadna
Facebook: https://www.facebook.com/DenaTalksDNA/

In this exciting episode, Talya and Joanna talk with genetic counselor Dena Goldberg about why genetic testing is so important for people with special needs and disabilities, and how a genetic counselor can help.

Dena Goldberg, MS, CGC is a genetic counselor living in Los Angeles, with a dream of bringing genetic counseling to mainstream media and becoming the first TV genetic counselor. She previously served as the Gordon and Betty Moore Endowed Counselor of Hereditary GI Cancer Prevention at University of California, San Francisco (UCSF). She is the founder of DenaDNA.com, a website with a mission to spread awareness of medical genetics and genetic counseling to the general public through media and marketing techniques not typically used by the medical community. Inspired by her sister with a chromosome abnormality, she has been involved as a sibling support leader and has developed educational programming for the Chromosome 18 Registry and Research society. She is a strong proponent of using genetic information to improve the lives of and empower individuals with disabilities and their family members.

Check out all the great work Dena is doing via her website and all her social media outlets!

Website: www.denadna.com
YouTube Channel: https://www.youtube.com/denadna
Twitter: https://twitter.com/DenaTalksDNA
Instagram: https://www.instagram.com/dena.dna/
TikTok: https://www.tiktok.com/@denadna
Facebook: https://www.facebook.com/DenaTalksDNA/

Parents and caregivers of children and adults with disabilities and special needs are frequently advised that, to avoid burnout, they should make sure to engage in “self-care.” But what is self-care? It is often elusive, or boiled down to a caricature. 

Figuring out what is self-care to yourself, personally, is extremely important. In this episode, Talya and Joanna discuss the challenges they have faced in figuring out what self-care means to them, especially as parents of children with special needs, beginning with this definition:

“Self-care is any activity that we do deliberately in order to take care of our mental, emotional, and physical health.”

(Source: https://psychcentral.com/blog/what-self-care-is-and-what-it-isnt-2/)

What does self-care mean to you? Please let us know in the comments for this episode at Our Hidden Stories Self Care Podcast Episode – https://ourhiddenstories.com