Do You See Us? We are the parents who have always parented in an altered universe, and now we are being asked to live in yet another altered universe with no end in sight.
Do you see us? We are the parents whose children highly depend on structure and routine to feel secure and safe and less anxious. We are the ones who need a multitude of people to support our child’s ability to learn, to play, to speak, to toilet, to eat, to walk, and to participate in the school day.
We are the ones who have NOT been trained in special education, occupational therapy, physical therapy, feeding therapy, sensory therapy, equine therapy, speech therapy, art therapy, and music therapy. Nor do we have degrees in behavior modification or applied behavior analysis.
Do you see us? We are the parents who rely on others to help keep our children stable, secure and safe; not running away, or harming themselves or others. We are the ones who rely on specialists to teach our children how to talk, behave, how to be in community with others, how to take turns and play appropriately.
Do you see us? We are the ones that drag around medical equipment that sustain our children’s precious lives. We are the parents that know our local hospitals as second homes because of our children’s endless medical appointments and therapies.
Do you see us? We are the ones whose children have been made to feel as if they are not a priority in our school systems, state systems, and in our culture and society. We are the parents who are not worried about threats to our child’s education because we want them to get into college. This may never be an option. We simply want them to be happy, learning, growing, and around patient and compassionate peers.
We are the parents who watch the neurotypical children in the family suffer because of the overwhelming needs of their siblings with disabilities, as 24/7 life at home is suffocating and exhausting.
Do you see us? We are the ones who make 100 decisions every day. Because our children cannot. We are the ones whose children will not grow up and move away and live fully independent lives. Ever. We are the ones who are desperate for breaks from caregiving. Desperate.
Do you see us?
Jessica Patay is a mother, wife, and advocate/cheerleader for Special Needs Mothers. She has been married to her husband, Chris, for 23 years and they reside in the Palos Verdes area of Southern California. They have two sons and a daughter, all teenagers. Their second son, age 17, was born with a rare, medically complex genetic disorder, called Prader-Willi syndrome.
Because Jessica is passionate about serving, mentoring, and inspiring other Special Needs Moms, she launched and leads a non-profit organization called We Are Brave Together. WABT 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. WABT offers support groups, workshops, retreats and inspirational events.
During this quarantine, WABT is offering Zoom support group meetings and workshops. Jessica Patay is the host of Brave Together podcast, which can be found iTunes and Spotify. You can find out more about WABT at wearebravetogether.com and see their resourceful and inspirational posts on Instagram @wearebravetogether