Supporting Parents of Children with Special Needs and Medical Conditions: Spotlight on We Are Brave Together

Guest Blogger, Jessica Patay, Founder of We Are Brave Together 

“Moms often bear the brunt of the burden in managing family life, and because that burden is compounded in the case of special needs advocacy and care, many experience intense emotional and physical burnout. During the COVID-19 pandemic, the lack of access to regular caretaking and therapies and homeschooling exponentially increased the need for support. It is for just these reasons that the workshops, resources, education, support groups, and network offers of We Are Brave Together became a vital (if virtual) lifeline for many moms across global borders.”

Founder and Executive Director, Jessica Patay, is a mother, wife, and advocate/cheerleader for caregiving mothers of children with special, medical, or extreme needs. She has been married to her husband, Chris, for 24 years and they reside in the Palos Verdes area of Southern California. They have two sons, Luke, 20, and Ryan, 18, and a daughter, Kate, age 15. Their second son, Ryan, was born with a rare, medically complex genetic disorder, called Prader-Willi syndrome. Chief clinical symptoms include an insatiable food drive (known as hyperphagia), anxiety, behavioral and intellectual impairment. Because hyperphagia is life-threatening, Jessica and her family must live with a locked kitchen, and be ever vigilant to protect Ryan from overeating into a medical emergency.

Jessica believes in the power of gathering to empower, strengthen and uplift moms in their unique, diverse, and difficult journeys. The journey to support and care for a child with additional needs is often a uniquely isolating experience, but, a few days into receiving Ryan’s diagnosis, a phone call from a local mentor mom at the Prader-Willi California Foundation gave Jessica immeasurable relief and comfort of knowing she was not alone in her experiences. This sense of community — this power of gathering — is something she’s been advocating for ever since.

Jessica likes to say We Are Brave Together was born out of a beautiful collision in her heart. Her passion for deep friendships and an understanding of the vital impact of supportive communities, combined with her experiences with special needs families ultimately inspired the creation of WABT.

We Are Brave Together is a nonprofit organization whose mission is to support caregiving mothers of children, any age, with any diagnosis, disability, or challenge, including mental health and educational challenges. Based in Southern California, WABT has an international membership. The organization launched in 2017 with a core group of 125 moms and is now 1,300 women strong. The intention and mission of We Are Brave Together is to help combat the isolation and compassion fatigue that these mothers face: providing virtual and in-person support groups, educational workshops, and low-cost retreats, and retreat scholarships. WABT believes that if they can empower, educate and provide a community for moms, they will impact whole families. WABT also offers the inspirational and resourceful podcast, Brave Together.

Currently, WABT hosts in-person satellite support groups in Palos Verdes/South Bay, Los Angeles, San Diego, Utah, Arizona, Tennessee, Kansas, New York, Florida, and Ontario/Canada. New chapters are also on the horizon in Texas, Idaho, and even Australia!

WABT also provides fathers with a virtual support group of their own every other month, and a new virtual support group exclusively for Spanish-speaking moms is being developed, as well.

Every gathering that We Are Brave Together offers is available to join through their website, wearebravetogether.com and is advertised on their Instagram page @wearebravetogether.

Jessica is a lifetime lover of words, credited with the superpower of honesty in truth-telling from the trenches of motherhood. She has been actively journaling and sharing her work for moms and Special Needs Moms since 2012, on her website, jessicapatay.com. She is also the host of her very own podcast on ApplePodcasts and Spotify, titled Brave Together. You can learn more about the show’s two seasons, read about each episode, and meet her guests through the dedicated Instagram page @bravetogetherpod. Jessica Patay is also a three-time alumnus with Expressing Motherhood — a stage show of storytellers and performers, all sharing stories about motherhood.

However complicated her altered motherhood journey is, Jessica remains firm in her belief that something beautiful can be born of chronic hardship; connection and community are critical to surviving and thriving in the midst of challenges. Because she has experienced the gift of a shift in perspective, priorities, and purpose, Jessica is passionate about sharing her life stories with complete transparency and vulnerability. She upholds and validates the moms of WABT, and creates a sacred sense of sisterhood and community.

If you are a caregiving mom anywhere in the world to a child of any age, with any diagnosis, disability, or challenge, you are welcome with open arms to connect today and become part of the supportive tribe of We Are Brave Together!

Helping My Kids Cope with a Learning Difference

I was honored to be featured as a podcast guest with Child Life on Call. This is my second appearance and the focus was on supporting my children through their learning differences of ADHD, dyslexia, dysgraphia, and coping with anxiety.

Like many, parenting through the pandemic and adapting to distance learning wasn’t easy. My youngest, Blake struggles with dyslexia and dysgraphia. He was doing really well in school and with outside support prior to the lockdown. As soon as he had to go online to finish his second-grade year, his confidence went down the tubes.

I also witnessed my oldest, Gavin who has dyslexia, dysgraphia, ADHD, and struggles with anxiety become overwhelmed with his middle school curriculum online.

As a parent, I have had to learn to navigate the special education road. Learning terms like Individual Educational Plan (IEP),  baseline assessments, and understanding my children’s legal educational rights. 

Take a listen to our story and share it with others who are coping with learning differences.

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Giving Parents a Voice: Child Life On Call Podcast

Child on Call Podcast

I am over the moon to feature an extraordinary Certified Child Life Specialist on the blog today. Katie Taylor, has taken her passion for working with parents and children from the hospital walls to the radio waves. She is empowering them to share their stories and connect with other families.

Guest Blogger, Katie Taylor founder of Child Life on Call

I was kneeling down next to a new mother in a dark pediatric intensive care room. The only light was from the sun peeking through the curtains and the monitor from the three IV pumps connected to her 3-week-old daughter. While I introduced child life services and education on ways to continue bonding with her newborn, despite their abrupt and emergent hospitalization, she said something powerful.

With tears in her eyes, she looked right at me and said, “I feel like I’m the only one in the world feeling this way. I feel so alone. So helpless. Tell me someone else has been through this before.”

It hit me like a ton of bricks. Her words lit a deep fire within me to do something more; Child Life On Call podcast was born.

I’m a huge podcast fan. Listening to them takes me to another world. Whether I’m laughing or learning something new, I leave my commutes feeling a sense of renewal. What was missing in the podcast world, I discovered, was a community for parents who feel the overwhelming emotions associated with having a child who has an illness or medical condition.

I don’t have a voice for radio, I didn’t have any of the equipment (not even a desktop computer), and I had absolutely NO clue about how to start a podcast, but I wanted to create a resource for parents and I felt podcasting was the way to do it. Parents could plug in their earbuds as their child slept in the hospital bed next to them and be transported to a community of stories and support. I had to make this happen.

Child Life on Call Podcast.jpg

One year later, the Child Life On Call podcast was published. Although the quality isn’t great and the technical errors have given me sleepless nights, the mission has been steadfast. The podcast features stories from parents of children with an illness or medical condition.

In Season 1, parents courageously describes personal and emotional experiences associated with having a child who has been through medical experiences. Season 2 will feature more stories from parents and from child life specialists currently working in the field.

Katie taylor

You can follow along with this podcast on Facebook, Instagram or Twitter, through www.childlifepodcast.com, and you can listen on iTunes, Stitcher, TuneIn and Google Play.

My hope is that this continues to be a resource for parents as they sit in the loneliness that is hard to avoid when you have an ill child. My hope is that child life students recognize the weight of the vulnerability shared by these parents and the honor we have as child life specialists to support families. My hope is that this grows into a community that truly does support parents and families experiencing hospitalizations and illness.

Learn more about Katie and Child Life On Call from her website, at childlifepodcast.com and click here, if you are interested in sharing a story.

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