Making a Difference: Mario & Michael's Story
Making a Difference: Mario & Michael's Story
Thelma Nacinovich's autism journey began with the birth of her son Mario in 2006. It didn't take long for her and her husband to notice that Mario was developing differently than their first child, daughter Paulina. Mario was speaking very little and wouldn't respond to his name when called. They knew very little about autism before Mario was diagnosed, and quickly realized they would need to educate themselves to get him the help he needed. They went into full research mode, seeking educational programs for their son, finding providers for his different needs, and learning the ins and outs of the qualifications to receive special services in New York City.
The first few years had their challenges, but just as the family was adjusting to their new normal, life threw them another curveball. Their son Michael, born in 2007, also showed signs of atypical development. Michael's signs of autism were different from his older brother's; unlike Mario, he had plenty of language and learned how to read at an early age. When he started demonstrating interfering behaviors, his parents wondered if he was simply copying Mario, and even their service providers strongly considered that a possibility. After Michael turned three, however, he started losing his functional language and engaged only in scripting, reciting lines from favorite movies and television shows instead of using words to communicate.
Naturally, their needs and challenges varied widely. Michael's behaviors were becoming more severe and it was evident that he needed a more restrictive school setting such as the Brooklyn Autism Center (BAC). The need for Mario to be in a similar setting didn't present itself until later. What was clear was that each child required their own set of services and each required a team of providers (teachers, therapists, psychologists, etc.) The coordination of all those services became a job in of itself. Every decision was important and interrelated, and it seemed as though hundreds of decisions needed to be made every day.
Thelma and her husband Mario Sr. had to advocate for both boys' individualized education programs in different schools (in different boroughs). At home, they had to maintain peace between two young boys with strong personalities who often provoked each other. Finding after-school and weekend activities that both boys would enjoy was also challenging. Thelma persevered, never shying away from trying new things with her boys, even with the risk of their having problem behavior in public. She refused to let their challenges prevent them from trying new things and enjoying a potentially enriching experience.
Fortunately, Thelma has a great support system. She jokingly calls her husband "Uber dad" for his willingness to drive the boys anywhere and everywhere to try different activities. She's grateful to her older daughter Paulina: "She's been a great help even since she was little; she was always very involved and had a way to calm them down, to help them not feel alone." Thelma also credits her sister, Gennie, for helping her through the tougher times, being there for her and the boys anytime she needed.
Making sure Paulina always had her own life outside of her brothers was a priority for Thelma and her husband as well. They've made sure to support every activity she participates in and work hard to ensure she has individual time with her parents. Paulina's maturity, her ability to accept and embrace her brothers' differences, and her willingness to help is clearly a testament to their parenting.
Thelma's family has been with BAC for five years now, and throughout this time she has managed to be a very present, involved parent. She never misses a monthly clinic. She makes a point to always attend parent-staff meeting where she's quick to share her findings, information about autism-friendly activities, and resources she feels could benefit others. "It's important to hear what the other parents are going through - what they're implementing, what works and what doesn't. BAC is a great community."
Through Thelma's fight to ensure her own children get the education and services they've needed, she's become a wealth of information for other parents trying to navigate the system. When she hears about an autism-friendly event, attends a beneficial workshop, or learns of new services, she'll share that information with the staff or parents at BAC. She's suggested many parent workshops and extracurricular activities over the years. She has even helped other parent friends through the IEP process, helping them prepare and being present to show emotional support if needed.
Additionally, Thelma is often generous with her praise toward the staff at BAC. She regularly sends them positive feedback, always thanking them for their hard work. She'll drop off snacks for special occasions or for no occasion at all. She's referred numerous families to BAC and is happy to speak to prospective families when asked. She credits the staff for giving her peace of mind, particularly in regards to the boys' safety, and thanks BAC for supporting her family with every challenge that has arisen over the years.
Thelma's love for her children and family show no bounds. No matter the behaviors or difficulties, Thelma will go to great lengths to sacrifice - emotionally, financially, or otherwise - to help her children make progress. She is proud of all her children and embraces the special qualities in each. "My favorite thing about Mario is his sweetness; he's always giving hugs and he's very affectionate. Michael impresses me with how smart he is. The comments he makes - he surprises me all the time. And Paulina is just a truly beautiful person, inside and out."
The boys are both approaching adolescence, leaving Paulina to tease her mother about the future: "In a few years, you're going to have three teenagers in your house!" Thelma takes it all in stride. "God has a really good sense of humor - but he must think I can handle it if he gives them to me! I never question why. I just know I need to do the best I can for them."
And she will continue to do her best for them, because Thelma is the definition of "autism mom strong."