After evaluating him, she told me that he was autistic. It was lonely. It was new. It was disappointing and heartbreaking.”
- Andrea Fenise
It’s an unexpected diagnosis no parent wants to hear about their young child, but one so many have experienced — alone. Then, there’s the internal processing factor of questions, thoughts, and anxiety, all leading to overwhelming feelings of “what now?” What happens next? Who can I talk to for guidance? How will this impact my family’s life?
April is Autism Awareness Month, and a time designated to focus on the realities of living with the developmental disability that affects how individuals interact with others, communicate, learn, and behave. According to the Centers for Disease Control and Prevention (CDC), about 1 in 36 children has been identified with autism spectrum disorder (ASD) in the United States today.
Autism is certainly not an easy road to navigate, and Andrea Fenise, mother and creative entrepreneur, has been no stranger to sharing her truth and transparency of raising her four-year-old autistic son, Jasiel Garcia, and 14-year-old daughter, Amira Jones. A busy mom in a blended family of children — including Danny, Jerry, and Melanie Garcia — Andrea stays engaged with the day-to-day tasks of motherhood, managing her businesses, and archiving stories and history of women through her initiative and blog,
In Search of Our Garden. “Raising two children with age gaps and different needs, working, and life in general is no easy task,” says Andrea. “So, every day I wake up and continue to move towards my own goals and dreams while on the journey of motherhood.”
To know Andrea’s style and approach to purposeful and intentional living — for herself and others — is to know a little about her commitment to inspiring and encouraging others. She’s a multidisciplinary creative and social entrepreneur who has been influential to many through sharing impactful stories, events, and experiences at the intersection of creativity, community, and wellness. As a visual storyteller, she inspires women, especially mothers, to live boldly and harmoniously by creating a life they dream of living.
Andrea is a native to living life creatively, which is frequently set in motion when it comes to adapting to her new normal of Jasiel’s autism diagnosis, and his unique style of learning and exploring the world around him, especially as a bilingual child. “I purposely ‘unbusyed’ myself in this season. I’ve always found discontentment in being overwhelmed and disheveled as a mom,” says Andrea. “Raising my children, working, and living is a lifelong journey I truly feel is my mission and purpose in life. I live creatively for a living. My days look different for work everyday but each day is constant and consistent with my kids. I am present and trying to be an example of how to live a truly creative life.”
As a parent, raising a child (in general) is one of the most difficult roles in life; however, raising a child with autism is increasingly challenging. Andrea has been determined to embrace those challenges — come what may — with grace and class, as well as not being afraid to fail or try something new. “It took time,” says Andrea. “I gave myself the freedom to discover what my purpose is in this season. I reflected on the natural rhythms and purpose of seasons. In this season of my life, my purpose is to encourage and inspire other mothers navigating similar situations to push forward with unwavering faith, class, grace, and will.”
When first learning of Jasiel’s autism diagnosis, life as Andrea knew it, took a hard left. “It was an unexpected diagnosis,” she says. “I took him for a walk-in appointment for a cold and was assigned to a different pediatrician that actually took time to address some previous concerns of mine. During that visit, she looked over his chart and saw that he was continually missing milestone marks for speech and a couple of gross motor skills, but that he also had an affinity for repetitive behavior, even during the doctor visit. Those milestones had been overlooked by his normal pediatrician as just, ‘boys are slower’ or ‘he’s hearing two different languages at home’. However, she addressed them. She knew. After evaluating him, she told me that he was autistic. It was lonely. It was new. It was disappointing and heartbreaking.”
Jasiel’s diagnosis came during the peak of Covid-19, creating a much longer process. “We experienced a horrible encounter with the psychotherapist because of language and cultural differences,” says Andrea. “Yet, I stood firm on advocating for myself, and for Jasiel. I think for me, it was incredibly hard. I felt like, from the moment I heard autistic, I grieved for normalcy. All of the small things that I took for granted, I was now longing for. My day-to-day life changed completely because I now had to prioritize therapies and juggle it with work. I questioned ‘would my life ever be the same again?’ There was just so much uncertainty.”
Andrea gleams when describing Jasiel’s personality. “He is a big ray of boy joy, happiness, love, and excitement,” she expresses. “Well first, being with his mommy brings him the most joy. He is a mama’s boy through and through. But he loves building houses, unique objects with magnetic blocks and legos, and puzzles. He loves technology and designing art on the iPad. Jasiel gets really excited to play with his dad’s tools. Nature is his happy place. And big sister, Amira, makes him giggle until he gets tired. Transitioning from what he is really focused on and hearing the word ‘no’ is a struggle for him. Most kids struggle with that though, autistic or not.”
While Andrea is still on a journey of learning to view the world — as Jasiel sees it — she is often driven by opportunities to share her experiences with other parents, knowing firsthand the struggles and frustrations they encounter daily. “They are learning a world that is different from how they see things,” says Andrea. “We are learning every day how to guide them through the challenges of autism. Show love by being patient. Show love by educating yourself about autism and its wide spectrum. Show love by seeking ways to come into the autistic child’s world rather than forcing them through societal pressures or norms in yours.”
“Every child is different,” she continues. “Your walk along the spectrum may be completely different and you have to give yourself grace. My advice is to surrender, yet don’t give up. Surrender to living a life that may be different from other parents, but don’t give up.”
On her hardest days, or even Jasiel’s, Andrea is reminded of what keeps her grounded. “My mother jokes a lot about this, but she always said, ‘God knows who to give special babies to’,” says Andrea. “Therefore, I can say with confidence that my faith keeps me grounded. God knew with all of the changes in my life, grief, and responsibilities, I was uniquely designed to love, care, and raise an autistic child. Secondly, prioritizing pockets of time for myself. I’ve redefined self care as well while raising an autistic child.”
Daniel Garcia, Jasiel’s father, adds: “It is hard raising a child with autism. But it isn’t impossible. You have to understand them, not the other way around. They are not like us. They are brilliant, intelligent, and very smart. For me, as his father, and Spanish being my first language, it is really important to me that my son learns two languages. It is hard, but not impossible. You have to be patient and dedicated, and they understand everything and will do everything when they want.”
A few simple tips Andrea shares with other moms, dads, or grandparents that have helped her navigate raising a child with autism:
- Seek resources and start as early as you can. The earlier you start getting professional help and support, the better.
- Work with your autistic child. There may be some delays such as speech or development, but keep working with them, teaching them, and talking to them.
- Find comfort in other autistic parents or caregivers.
- Give the primary caregiver a break. Raising an autistic child can be taxing physically, spiritually, mentally, and emotionally. Sacrificing your time to give the primary caregiver a break is invaluable. It also gives the child exposure to other people to help with socializing and getting outside of the normal routine and ways of the primary caregiver.
For family resources on autism, visit the Centers for Disease Control and Prevention's website, or contact your child's pediatrician.