Molly DeCarlo is a proud mom of three sons — Jaxson (19), Rocco (15), and Maddox (12) — who are the center of her world. Jaxson has embraced his role as big brother from day one, becoming a loving protector and role model to his younger brothers. Together, Jaxson and Maddox surround Rocco, who is nonverbal, with unwavering love, kindness, laughter, support and encouragement. They live in Zelienople with Molly and their stepdad, Tony DeCarlo, whose remarkable bond with Rocco reflects the love and dedication he brings to their family.
This interview has been edited for length and clarity.
Many parents feel pressure to constantly advocate and “do it all” when they have a child with [specialized needs]. How have you learned to give yourself grace?
Having children is a humbling experience. Having a child with a disability is even more humbling but also rewarding at the same time. Not only do I have a child with a disability, [but] I also am a high school transition counselor for students with disabilities. I never stop advocating. One of the biggest challenges is trying to encourage people to stop using the “R” word. It’s amazing to me how many people today still use the term. When I hear someone using the “R” word, I will try to use that situation as a learning opportunity and not as a scolding lesson.
How do you make space for fun, laughter or lightness as a family amid appointments, therapies or daily challenges?
Laughter is a huge part of our home. I’m fortunate to share my life with four incredibly funny, intelligent and loving men. As a family raising a neurodivergent child, we approach each day as a team. We’ve all learned to understand Rocco’s language. Although he is nonverbal, he communicates constantly, and it’s important to listen to what he’s telling you in the ways he can.
There are moments when I watch other families with typically developing children and feel a sense of sadness. Other times, I notice people staring at Rocco and feel angry or protective. I’ve fought back tears and resisted the urge to tell people to stop staring. When a meltdown happens, I’ve learned that humor can be one of our greatest tools. Sometimes, I’ll catch my husband’s eye or look at my other son and do something silly to break the tension. Other times, I’ll act completely ridiculous just to make Rocco laugh and redirect his attention.
What has your child taught you about joy that you may not have understood before becoming a parent?
Everything. More than anything, to appreciate the small celebrations of life. It took me five years to finally get an answer for Rocco’s condition. He has a rare syndrome called Coffin-Siris syndrome. When I read the results of his genetic report, I cried so hard, not because I was sad but because I finally had an answer. I finally knew what he needed and found a community of other parents to offer support and guidance.
How do you protect your peace and mental well-being when life feels overwhelming?
I cry. I have my moment, then I wipe my tears and carry on and remind myself that Rocco was given to me for a reason, and I honestly could not imagine life without him. He is my hero. He has taught me so much in life as well as in my career. He has made me a better human being. No one gives a hug and kiss like our Rocco! And to hear his belly laugh and to see Rocco’s smile melts any heart. He is pure love and joy.
Looking back, what advice would you give other parents about finding balance and embracing joy, even during difficult seasons?
You must have a support system to help you because you cannot do it all on your own. One of the best resources available for people with an intellectual disability and/or autism is a support coordinator through the county, as well as secondary health insurance through Medicaid. Simply do an internet search for “Support Coordination Office of Developmental Supports” for your county. It was one of the best things I did for my son. It’s a service that he is entitled to for his lifetime, from having diapers delivered to our home 100% covered by insurance to never paying anything associated with medical fees including copays, as well as prescriptions.
When your kids look back one day, what do you hope they remember most about how you showed up for them as a parent?
My children know that I have their back and I will fight for them no matter what. They know to be kind, good human beings. They know to stand up for the underdog and to not tolerate anyone being bullied. They know to love and accept all people, to treat everyone with respect. Life rewards you with the energy you put out into the universe. Above all, I hope they remember how fiercely I loved them and that I would do anything for them. That they come before anyone and anything else and that they are my greatest accomplishment.
Family Favorites
Weekend Activity: Soccer, fishing, taking walks, gardening, game night, watching movies … Rocco’s favorite activity is listening to Bruno Mars on repeat!
Sports Team: Pittsburgh [teams] (Riverhounds SC, Steelers, Penguins, Pirates)
Family Movie: Netflix binges; classics from the 90’s
Date Night Plans: Going out to eat, antique shopping or thrifting … snuggling on our “cuddle couch” (best investment ever!) and watching a really great binge-worthy series
Family Restaurant: Ordering pizza!
Carrie Woodard is a National Certified Counselor, National Certified School Counselor and a Pittsburgh mama of two.
