ONCE UPON A GENE - EPISODE 130

A Rare Collection - Penny for your Thoughts

There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. 

EPISODE HIGHLIGHTS

Drie Barr, Physical Therapist

A physical therapist is a movement therapist, an expert in body mechanics, movement pattern and providing diagnoses of the musculoskeletal system. While not an expert in language, Drie has learned through her experiences that communication is more than words strung together into sentences. Communication can present in the form of a variety of sounds, vocalizations, gestures, sign language, facial expressions, eye gaze, body language, laughter, tears and many other ways. In addition to her job diagnosing musculoskeletal impairments and teaching functional movement patterns, modern language skills are deeply intertwined and connected in the work. Movement is language and everyone has something to say. It's up to all of us to listen beyond words, to listen with the eyes and the heart. 

Miaya Allen, Speech and Language Pathologist 

Miaya has been a Speech and Language Pathologist for 16 years. Working with children with a variety of abilities and challenges has taught her about the power of resiliency and human spirit. Working with their families and caregivers has taught her the power of trust, patience and extending yourself grace. She shares her best advice with her patients' parents— Being a parent is the best and hardest job you will ever have, so enjoy the wins, try not to get stuck on the losses, and trust the process, be patient and extend yourself grace. 

Sarah Putt, Podcaster and Founder of OT 4 Lyfe

Sarah works as an Occupational Therapist in home-based early intervention. Going into a client's home makes for a unique and special experience, becoming familiar with where they live, but also meeting the people closest to them. Being aware of their daily routines makes supporting families easier when they need it. To all the parents and families out there who work with therapists in their homes, know this is more than a job to us. We do the work we do because it's who we are and it's a calling. Your child and your family touch our lives and forever change us. 

Alissa Hughes, Rare Mom, Speech and Language Pathologist and Founder of Purposeful Play Everyday

Being an SLP, that comes so naturally. Here is what I know. I love to read. I love to write. I love to rhyme and play and sing. Words, they are my everything. I love watching your kids grow and teaching you everything I know so you can teach them too. I love when the light bulb flickers and I can see they understand. I won't stop until they do. And if they still can't quite yet, I'll try something new. Again and again until the breakthrough. Because we all need to communicate and I'll do whatever it takes to share that gift with you. Gestures, sounds, pictures or signs. Or smiles in your eyes. You show me what works best and I will do the rest. It's just so black and white to me as your SLP.

LINKS & RESOURCES MENTIONED

OT 4 Lyfe

https://ot4lyfe.com/

Purposeful Play Everyday

https://www.alissahughesslpllc.com/

Drie Barr - Napa Center

https://napacenter.org/our-team/adrienne-barr/

Miaya Allen 

https://www.linkedin.com/in/miaya-allen-824ab789