Growing up disabled meant my physical and occupational therapists drilled into me to always have a plan for everything. A plan meant I knew what to expect and I was safe. For the most part, I’m grateful to them for instilling this in me. When my husband and I were contemplating having kids, I knew I would definitely need a plan. But what I didn’t realize was that the dearth of disability-specific knowledge and a lack of community for disabled parents would leave me feeling like the quote from the movie “Highlander,” “There can be only one!”
The adaptive resources my doctor found were a couple decades old and vague. So, my husband and I took the class we lovingly referred to as “don’t break the baby class” and set up a very cute nursery. Since people who have cerebral palsy, as I do, exert three to five times the energy of our able-bodied peers, my exhaustion was palpable.
By the time baby number two was born, I’d connected with other disabled moms on social media, and it was revelatory! I’m sure I would have had significantly more stress and less energy than I did, had I not had a cadre of moms in similar situations to draw from. So, when I searched for “resources for disabled parents in NY Metro” to write this article and only found “resources for parents and caregivers of disabled people,” I knew who to connect with in my network.
Nicole Lomerson is a researcher at the National Research Center for Parents with Disabilities (NRCPD). A part of Brandeis University’s Heller School for Social Policy and Management, the NRCPD focuses on research while also providing training and technical assistance to improve the lives of disabled parents and their families. “The Center for Parents works in the knowledge that we as disabled parents are the experts in what we need,” explains Lomerson. They share information sheets, research briefs, webinars on a range of topics for disabled parents, and more.
The NRCPD uses firsthand narratives about how disabled people raise children to establish expertise and a level of comfort and understanding for other disabled parents, prospective disabled parents, and professionals. Voicing our expertise to an audience that includes those whose professions can directly impact our lives—including legal professionals, social workers, and researchers—is essential to creating change.
The Disabled Parenting Project (DPP), part of the Center for Parents, uses technology to make it more feasible for disabled parents and prospective parents to connect and communicate, and offers a wealth of information about adaptive parenting. They focus on content created by disabled parents to inform social policy and promote social justice for our community. Specifically, the DPP has a library of resources and a directory of supportive providers for parents and kids.
Then, there is the Adaptive Parenting Project (APP), started as a YouTube channel four years ago by Alesha Thomas. The wheelchair-using mom’s mission was to create the support network and resources she searched for but couldn’t find while pregnant in 2019. In Thomas’ words, her goal is to “meet the needs of [disabled] parents where they are and try to help.” She started as a one-woman operation with a baby and a camera. As subscribers began to submit their own content, her community blossomed and the APP nonprofit was born.
In 2021, APP received $20,000 from the Aerie Real Changemaker Contest, which funded the production of dozens of videos on subjects ranging from easy routines to advocacy. In addition to their videos, APP has a series of printable handouts that address topics including family planning, lactation support, and reproductive support. APP’s content creation community is global, offering a wide variety of perspectives and support.
Parenthood is an adventure for everyone involved. I’ve seen many parent alliances formed over laughing about everything from diaper explosions to dance recitals. But as a disabled parent, there is nothing quite as magical as connecting with someone who gets it and thinks your parenting hacks are cool and applicable without being “so inspired” by the fact that you’re a parent. And while the NRCPD, DPP, and APP are great places to find information and a community to empower you on your parenting journey, remember you’re the expert on your life. You’ve got this!
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.