Jessica Patay is a mother, wife, and advocate for mothers of special needs children. She is also a coffee and book addict, who has no business buying any more books this century. Or shoes.
Married to her husband Chris for 22 years, she uses her psychology degree to artfully and carefully lead her lovely brood of 3 teenagers, Luke (18), Ryan (15), and Kate (13). Ryan was diagnosed at birth with Prader Willi Syndrome, a rare genetic disorder marked by hyperphagia, low muscle tone, obsessiveness and anxiety. Ryan is her "most grateful child," Jessica says, a sensitive boy who suffers from extreme anxiety but whose heart is huge.
In today's podcast, Jason, Jessica and I spoke about the intuitive powers of our children, their empathy for others and sensitivities that belie their diagnoses of cognitive impairment. We also spoke about sibling issues, and Jessica shared some tips and great ideas on how their family has managed to juggle alone time with each of their typical children.
Our discussion includes Jessica's current passion, the organization she has created called We Are Brave Together. Jessica describes the group as "a beautiful collision" of her life as a special needs mother and a passionate lover of female friendships and closeness. Jessica is a three-time alumnus with Expressing Motherhood, a stage show of storytellers and performers all sharing about motherhood. Because Jessica is passionate about serving, mentoring, and inspiring other special needs moms, she launched and leads We Are Brave Together, a non-profit organization that provides resources, respite, support groups, mentoring and inspiration for moms caring for children or adult children, any age, with any diagnosis, disability or challenge. She believes in the power of gathering to empower, strengthen and uplift moms in their unique, diverse and difficult journeys.
You can find out more on their website and see their resourceful and inspirational posts on Instagram @wearebravetogether. This May, the group is having an informal get-together called Dear Younger Me. Mothers of adult children with disabilities will share a lot of their experience in a day of mentoring without a formal program.
"I just really believe that when we come together in person, that there's power and there's strength, and there's hope to be found, Jessica told us, "And so I wanted to create gatherings of different types, support groups, workshops, retreats, so that moms could come together and learn from each other, and just know that they are not alone."
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A weighted blanket did not help our son when he used it as prescribed. What did help was when we placed it at the foot of his bed, so that his covers stayed in place and we weren't up covering him during the night! Sleep!
Favorite Book for Caregivers
Nobody's Perfect by Nancy B. Miller
Not What I Expected by Rita Eichenstein, PhD
Aching Joy by Jason Hague
Unbroken Faith: Spiritual Recovery for the Special Needs Parent by Diane Dokko Kim
Most Inspiring Person/Group
My friend, Amy Groshell
Peace of Heart Community