Building Inclusive Communities: Taryn Lagonigro’s Mission with Extra Lucky Moms (ELM)
Taryn Lagonigro, co-founder of Extra Lucky Moms (ELM), has helped to create an inclusive community for parents and caregivers of individuals with disabilities, recognizing the unique experiences and joys that come with this journey. ELM is not just about providing resources but fostering a community where parents feel understood, supported, and empowered.
Born out of experience, ELM is hoping to create what Taryn was missing in the early days of her daughter’s diagnosis of Down syndrome: community, accessible information and hope.
Parents of children with disabilities can often feel isolated, especially in the early days of navigating a diagnosis. ELM has not only created a community of parents who share their experiences, advice, and emotional support, but also published a book called Dear Mama: Stories of an Extra Lucky Life. This book, meant to complement the clinical side of a diagnosis, is made up of twenty-eight letters from women in the disability community, writing to a new mom. This book captures the real and raw feelings of a diagnosis while also providing love, support and hope.
One of the main pillars of ELM is addressing common misconceptions about children with disabilities through storytelling. Society often underestimates the capabilities of those with disabilities, viewing them solely through the lens of their limitations. However, ELM highlights their potential, celebrating their achievements and showing that disabilities do not define their entire existence. This reframing helps the outside world, as well as new parents on the journey, see the possibilities for their children, fostering an environment where these children can thrive and be included.
ELM also provides unique insights into what it means to have a child with a disability. Taryn emphasizes that every child's journey is different, and there is no one-size-fits-all approach, whether they have a disability or not. This perspective encourages parents to embrace their child's individuality, focusing on their cans rather than their can nots. Through The Extra Lucky Podcast, ELM is able to provide practical advice from experts, real stories from the community and informational conversations to their community in an accessible format to help parents navigate this road.
Additionally, ELM advocates for the importance of practical and accessible self-care for parents. Recognizing that traditional self-care may be out of reach, Taryn encourages parents to find simple and low-cost ways to take care of themselves in the small bits of the day they may have.
In essence, ELM, hopes to transform the experience of raising a child with a disability from one of isolation and challenge to one of community and possibility.
As a mom to four very different daughters, I have learned to take an individualized approach to each of them. My youngest daughter may be the only one with a disability diagnosis, but each of my children learn differently, have different strengths and weaknesses, and also communicate and manage situations in different ways. How I approach things with my oldest is very different than I do with my second daughter. I try to listen to what activities bring them true joy and nurture that and not let what I want or think they should be doing get in the way. The result is that I get to witness them doing things I never had the courage to do, and I am happy to be their biggest supporters in all of it.
I believe I build resistance in my children in a few different ways. First, even though it can be hard to do, I try not to remove obstacles for them and instead teach them how to manage situations. I of course will advocate for each of them if and when I need to, but I will coach them on how to approach a teacher or a friend before I will reach out to the teacher or another parent myself. If I solve all of their problems for them, I am not properly preparing them for the real world.
Also, I have done my best to teach them to have an inclusive mindset. Long before they had a sister with a disability, I was encouraging them to include a child who may be alone or to have patience and understanding for what someone else may be experiencing. We have talked about how some children are in the process of learning new tools to calm themselves down or how some students need a little more time to get things done. Much like not removing obstacles, life is full of a variety of personalities, some challenging, and we sometimes have to have the patience to see beyond what we see on the outside and get to know someone on the inside.
What comes along with being part of a big family is also having responsibilities of contributing to the everyday flow of our family. Whether it's helping out a younger sibling, folding and putting their own laundry away or helping us with other small tasks, they are (almost!) always willing to pitch in. I don’t look at this like I’m burdening them, but simply showing them how family works together to make things successful. They don’t do things expecting a reward, but I make sure I show appreciation for them along the way, whether that be simply letting them know what their help meant to me, or going for ice cream or a treat at Starbucks!
