Nearly 1 in 5 children in the US has special needs, which means many of our team members are working parents caring for special needs children. Caring for a special needs family member can be demanding. For Celebrate Diversity Month, we spoke with two HITT team members with special needs children, Co-President Drew Mucci and Knowledge Manager Karen Cotton.
Drew’s 15-year-old son Rocco (left) is the oldest of his three children. Rocco suffered a birth injury and as a result, he has cerebral palsy, which means the signals in his brain that control his muscles can’t travel as they should due to the injured parts of his brain. He is non-verbal and has very limited use of his muscles, so he uses a wheelchair and a feeding tube. But Rocco understands everything going on around him! He is learning to use an eye gaze device, which is a special camera attached to a computer that tracks his eyes on a screen of icons. He can signal the icons to say this like, “I’m hungry.” or “Alexa, play some music!” What makes Rocco awesome is he’s super social and loves to be around people; he’s always listening and laughing. Rocco loves slapstick humor and thinks the Minions are hilarious!
Karen (right) is the proud mother of Roman, her seven-year-old son. He was diagnosed with a rare congenital brain defect called hemimegaloencephaly (HME), where one-half of his brain is enlarged and deformed. Roman has both intellectual and physical disabilities and is nonverbal. Since birth, he has had two major brain surgeries - one of which resulted in the loss of left arm use. While he can walk with support, he is a fall risk and requires full-time, hands-on care. Roman is a mama’s boy and loves spending as much time with Karen as possible. They have a very special bond!
Q: What are some of the most challenging aspects of caring for your child?
Drew: The challenges are great, but after 15 years we’ve become accustomed to Rocco’s daily care. He needs constant support with everything from moving to eating and drinking to personal care. There’s no break until he goes to bed. But the biggest challenge is the emotional toll it takes on me, my wife Sarah, and my family. The struggle has changed over the years. Rocco is my first child. Before he was born, I envisioned teaching him to play sports, building a project together, or riding a bike. But suddenly that was all gone, and that perhaps was the hardest part. Here is a great story that sums up what this experience feels like.
Karen: Caring for Roman is physically demanding. At 65 pounds, it’s a struggle to change his diapers, help him walk, and carry him when necessary. One of the most challenging aspects of this journey is figuring out the healthcare logistics – Medicare, therapies, individualized education plans (IEP), and juggling doctor and therapy appointments. I’m so grateful that my husband Jeremy takes on the bulk of this work. Emotionally, it’s devastating to see your child go through brain surgery. We watch Roman have seizures daily, and we feel helpless. We also know that he may never be potty trained, won’t go to college, and may never learn to speak. Our family can’t do things that other families enjoy together like going to movies, concerts, sporting events, church, etc.
Q: How has caring for a child with special needs changed you as a person?
Drew: It’s given me perspective. I can’t say, “This is too difficult or challenging.” when I watch my son work incredibly hard every day to do simple things like lifting his head. I know just how good I have it. I’ve learned the experience of caring for Rocco is a journey and much like life – it will have its ups and downs. When I reflect on some of the darkest days and see how we’ve overcome them, I’m reminded to stay positive and believe that brighter times are ahead.
Karen: Roman has given me the perspective to know what is important and what is not. I’ve discovered that communication needs no words, and joy can be found in the simplest things. I’ve learned to count my blessings, not my troubles. I give myself grace and practice self-care daily. I’ve become a more grateful person and I’m choosing to let go of perfection. Comparison is the thief of joy, so I choose to celebrate Roman’s abilities and love him as he is. Seeing his smile and hearing his laugh are the only rewards I need.
Q: What do you wish everyone could know about your special needs child or your life as a parent?
Drew: While Rocco may look or sound different, he is the sweetest, happiest, and most caring guy I know. He just wants to be included in the fun. I wish everyone understood that we’re still so far away from treating people with special needs equitably and how hard parents must fight to get a piece of normalcy. For example, Rocco can’t fly when we travel because he can’t sit without the support of his wheelchair.
Karen: I want people to know that Roman is an amazing blessing and having special needs does not define him, or me. Empathy is welcome, but sympathy is not necessary. I fully believe that any parent would do the same things for their children as we do for Roman.
Q: What piece of advice would you give to someone who has a coworker that cares for a special need’s family member?
Drew: Problems and unexpected issues arise and there are few (if any) people that can help in a pinch because of our kids’ unique situations. Support us as we handle unexpected challenges. Also, remember to choose your words carefully. Words and phrases like “retard” or “riding the short bus” are hurtful. Even when unintentional, this type of language is discriminatory and unkind.
Karen: Ask permission before inquiring about the situation; if they want to remain private or don’t feel like talking about it, then respect boundaries. Simply be there for them; a kind word or gesture goes a long way. I do think people should normalize vulnerability at work. Talking about Roman makes me emotional, so I don’t usually share my experience with coworkers. We should embrace sharing things that may make us emotional because that’s an important part of who we are.
We are honored that Drew and Karen shared their experiences with us, and we’re proud to support them as part of our team. To learn more about the employee experience and benefits at HITT, visit our Careers page. Read more about Diversity, Equity, and Inclusion at HITT here.
Follow along as we celebrate HITT team members' stories all month.