Families with children on the Autism Spectrum face unique challenges and experiences. Each family’s journey is different, filled with both struggles and triumphs. We want to share their stories, insights, and advice to help and inspire other families going through similar experiences. As part of this interview series, we had the pleasure to interview Mary DiCarlo.
Mary DiCarlo is a mom of two daughters, Sabrina, 27, a special education teacher, and Summer, 19. She has devoted to her life to being a stay-at-home mother to care for Summer who has autism and other medical issues. Mary lives in East Haven, Connecticut, with her husband of 30 years, daughters and their dog, Jacks.
Thank you so much for joining us in this interview series! Before we start, our readers would love to “get to know you” a bit better. Can you tell us a bit about your background and your childhood backstory?
I grew up in New Haven, Connecticut alongside my four siblings. From a young age, I always knew I wanted to be a mother. I met my husband when I was 19, and we married four years later. I had my first daughter when I was 26 and then Summer eight years later. Summer was my surprise miracle baby, as I had a hard time conceiving following the birth of my oldest child. I have dedicated my life to being a stay-at-home mom, a role I believe is one of the hardest jobs out there.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
One of my favorite quotes — I even have it on a shirt that I proudly wear is, “Autism is a journey I never planned, but I sure do love my tour guide.” Having Summer diagnosed with autism was unexpected and impacted our family in many ways. I am so proud to be her mom and thankful for everything she has taught me, including how to choose joy in everyday moments.
Let’s now shift to the main part of our discussion. Can you share with us the moment you realized your child might have Autism Spectrum Disorder?
I sensed something was different with Summer from the very beginning. I felt that she had trouble learning, I just didn’t know to what extent. Unfortunately for me, I didn’t know enough about autism to know what to look for. For many years Summer was labeled as a child with learning disabilities, and I didn’t have anybody really to tell me anything different. When Summer was around 10, her behavioral problems peaked and I finally had to try to find somebody help her. That is when she was finally and officially diagnosed with Autism Spectrum Disorder.
I wish I knew much earlier because I think more could have been done for her. Her teachers and other experts had told me she just had a low IQ and learning disabilities. After struggling to find the right educational environment, I was thrilled when I finally found the B.E.S.T. in South Wallingford, Connecticut. It is where Summer found success academically and socially. The school is equipped to provide support for Summer’s autism and behavior challenges, and staff really care about our family.
I encourage other special needs moms to keep going, keep pushing, to get the diagnosis your child deserves.
What unique approaches have you developed to support your child’s communication and social interaction skills within your family and community?
Summer didn’t speak until she was 6. In addition to autism, she has apraxia, a motor disorder that impairs her ability to perform everyday tasks and speak. So, she went to therapy for many years. She’s a tough cookie. I knew she was going to talk. We tried various methods and gadgets but she wasn’t taking to them.
I didn’t give up. I keep trying new things so that Summer could communicate her needs with the family. We tried sign language at first. She tried a little bit but wasn’t interested in that. We moved on to pictures and she did that for a little bit and still wasn’t interested. That’s how we kind of knew what she wanted, because it first started out with pinching us and yelling to get our attention. Slowly she learned to show and point to something she wanted or take out a photo or take our hand and bring us to where she wanted something. I would say take mommy or Sabrina’s or daddy’s hand. Without many words in her vocabulary, we needed to accommodate to what she could do.
How do you navigate the challenges of creating an inclusive environment at home that accommodates the diverse needs of each family member?
This is a tough question to answer, because any parent of a child with autism knows, you need to accommodate to their needs first. At the beginning, and before she was diagnosed and started at the B.E.S.T. school, our needs revolved around Summer. Now that we have an established routine at home, and she’s a little bit older, we can go out to eat, or on vacations so we all can enjoy ourselves. It’s about balancing everyone’s needs while ensuring Summer feels secure.
Can you describe a moment when you saw significant progress in your child’s development, and what strategies or interventions led to that breakthrough?
Finding the right school was a turning point for our family. With the help of our school district, we enrolled Summer in the B.E.S.T. Academy in 2017. Things were really tough before we made the school switch, as my daughter had a hard time behaving and keeping her distance from other kids. As her mom, I knew she needed a place where she could get a combination of structure and support to help her handle everything. The staff at this school just know how to work with students and make them feel safe, loved, and like they can do anything. There are so many moments where I saw significant progress — like Summer being able to tell me a story, solving math problems, or spelling. She’s gotten so good at spelling! She can find the words in hidden picture books and read them. These are all huge achievements for my daughter and things she couldn’t do before attending this school.
How do you prepare your child for changes in routine or new experiences, and what has been most effective in reducing anxiety during these transitions?
Preparation is key. First and foremost, lots of talking, lots and lots of reassurance and doing things that make her more comfortable. For example, if we are going over friend’s house or out to dinner, bringing her favorite snacks, or activity like a coloring book and markers. It’s all about preparing her and talking all the time reminding her of what’s going to happen and how she needs to behave. Explaining to her to not talk to strangers or that you never walk away from mommy or daddy. It’s all about repetition. She has to be told these things every day, not just before we go somewhere new. I would also say it’s best not to let her know until the day of us doing something out of our normal routine, to avoid unnecessary stress. It’s all about her day and how she’s feeling that day. So, you have to really adapt to her needs.
What resources or support systems have been most valuable for your family in managing the daily realities of living with autism spectrum disorder?
The teachers at Summer’s school have been a huge support system for me and my family. It’s rare to find people who understand our challenges, but they do. Her pediatrician has also been phenomenal and helped me tremendously. You have to find that right doctor, because she is the one that introduced to me other doctors and resources that have been valuable for my daughter. I was lucky enough to find a few people in my life that took the extra step to make it easier for me to help summer have a better life.
What are your “Top 5 Strategies to Navigate Life With a Child With Autism Spectrum Disorder”?
1. Be flexible. You have to listen to your child and see the signs to know how to try to make the day go smoother or at that moment because their temperament can change from minute to minute — because it is raining out, an issue with their clothes or other sensory issue. Be ready for anything, at all times! You must be willing to change and adapt to whatever is going on with your child at the moment.
2. Ignore outside opinions. Don’t let other judgements affect your parenting. They don’t understand your unique challenges. If they’re not parenting a child with autism, they really don’t have any reason to comment.
3. Ask for help. Don’t hesitate to lean on family and friends when you need a break. It’s essential having support.
4. Stay organized. I try to keep everything in place as much as I can to create a predictable environment for Summer. Order is important when you have a child with autism.
5. Go to places your child loves. We take Summer to places that bring her joy — like the bowling alley or to a store she likes. There’s times where she would say to me, you know, I really like shopping. I would ask her what’s her favorite store and bring her there. She’s truly grown into a smart, funny, sassy and beautiful young lady.
What role does self-care play for you as a parent in maintaining balance and resilience while supporting your child with Autism Spectrum Disorder?
Finding time for myself is very hard as raising a child with autism is a 24/7 job. But when I do get a moment to myself, I enjoy unwinding with my husband binge watching our favorite crime or supernatural shows. It’s important to recharge.
Despite the challenges, families often find moments of triumph and resilience. Can you share a particularly proud moment or a breakthrough that your family has experienced in this journey?
One of the proudest moments was when Summer said her first word — “up” — while playing at my best friend’s house. We all celebrated, we were literally all jumping up and down in excitement. It then became a transition at that point, saying other words. It took a while until she could speak in sentences, but each passing year it got better and better. I can’t remember exactly what and when “Mommy” was said, but that was another celebration — I was crying.
Are there any books, podcasts, or other resources that have helped you understand or manage your condition better?
I often read materials provided by Summer’s pediatrician or school. Those resources have been incredibly helpful in understanding her needs.
We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch, and why? He or she might just see this if we tag them. :-)
I would love to meet Theresa Caputo, the Long Island Medium. She’s very funny and honest and I admire how she uses her special gifts to deliver messages from loved ones that have passed on provide comfort and help people heal. Maybe she’s reading this and would bring her in-person show to my area!
How can our readers further follow your work online?
I am personally not very active online but encourage people to follow Specialized Education Services, Inc. on social media at https://www.linkedin.com/company/specialized-education-services-inc-sesi- or visit their website at https://sesischools.com to find a school near them.
Thank you for your time and thoughtful answers. I know many people will gain so much from hearing this.
About the Interviewer: Dr. Kate Lund is a licensed clinical psychologist, podcast host, best-selling author and Tedx Speaker. The power of resilience in extraordinary circumstances kept her thriving as a child. Dr. Lund now helps entrepreneurs, executives, parents, and athletes to see the possibility on the other side of struggle and move towards potential. Her goal is to help each person she works with to overcome their unique challenges and thrive within their own unique context.