New York’s Staten Island — Elizabeth and Anthony Brinn, who are parents to their energetic 7-year-old daughter, Ava Marie Brinn, and their loving, neurodivergent 4-year-old son, Anthony Vincent Brinn, share a home in Midland Beach.
The Brinns, like many other Staten Island parents of children with developmental disabilities (the number has been increasing at an alarming rate), use social and educational resources, support groups, and family unity to deal with the joys and difficulties of raising an autistic child.
On important days, such as holidays or special occasions, you always feel a little constricted in your chest. You always hope they go smoothly. Elizabeth said, “There’s a good chance it won’t.” You can pack the backpack with all the toys and food, get plenty of sleep, and accomplish everything, but sometimes it doesn’t make a difference.
Since he started music therapy, Anthony Brinn’s kid has loved music, and he strums the guitar with him.Shahi Priya
Anthony Jr. is unusual for his age group in that he does not speak.A WebMD article with a medical review states that most kids start forming simple words into phrases and sentences at the age of two.
He was diagnosed with autism spectrum disorder at the age of 18 months. We noticed several indications. Elizabeth stated he wasn’t walking alone. I do recall how your heart falls when you hear the diagnosis because you don’t want your child to be disabled in any way.
Elizabeth said that opportunities did become available to them after her kid was diagnosed. She claimed that they had trouble locating the right resources for him after he aged out of early intervention at the age of three. She noted that it took roughly six to seven months to compile a list of all the therapists her son need.
Anthony Jr. is stimulated and receives therapeutic advantages as Elizabeth and Ava Brinn bounce him on a big ball.Shahi Priya
The number of children receiving autism diagnoses on Staten Island has reached a crisis level. I see it everywhere, whether it’s in church, school, or dancing school. Whether the parents are in denial or lack access, it’s really common, and I regrettably see a lot of people not receiving the treatments, she added.
Parents are waiting for a light switch to flip as they flutter over services.
April is Autism Awareness Month, a critical time for inclusivity that aims to debunk myths, fight discrimination, and guarantee access to necessary resources and support in the face of dramatically increasing autism diagnosis rates.
According to autismspeaks.org, one in 36 children in the United States has been diagnosed with autism. Compared to 2000, when one in 150 children received a diagnosis, this rate is four times higher. According to the Centers for Disease Control (CDC), boys are four times more likely than girls to have autism.
More than 13,000 people with autism are predicted to live in Staten Island alone in 2022 if this rate is applied to the borough’s population.
Healthgrades reports that there are 852 registered occupational therapists on Staten Island. According to Elizabeth, this degree of assistance is not enough to address the demands of the growing number of people with developmental disabilities.
At Community Resources Staten Island in Richmond, Anthony Jr., a pre-K3 student, receives physical, occupational, and speech therapy. He also goes to private music therapy and speech therapy sessions on Wednesdays, which his parents pay for out of pocket.
Children with autism have been found to benefit from music therapy in terms of social engagement, communication, cooperation, and social attachment, according to a 2022 study.
Four-year-old Anthony Brinn Jr. trembles around a string.Shahi Priya
There’s always this big promise and you always think that you’re going to see this light switch, but there hasn’t been one yet, she added. “As a parent, you just see how much work, how much time, how much effort, and how much money we’re putting in, and we just want to see a quicker change and more progress,” she said.
According to a survey conducted by the American Music Therapy Association, the average cost of individual music therapy sessions nationwide is $119 per hour. According to Cost Helper Health, the cost of speech therapy for children can range from $100 to $250 per hour for continuous sessions, depending on insurance coverage.
Overhead, Anthony Brinn raises his son.Shahi Priya
It’s difficult to understand his thoughts.
Anthony Jr. thrives on routine and doesn’t typically have sensory difficulties. His parents claim that his favorite foods, nighttime routines, and daily scheduled naps are all highly structured for him.
Her husband Anthony handles various responsibilities while Elizabeth oversees the kids’ daily routines, making sure they are prepared for school, driving Ava to her basketball and dance activities, and going with Anthony Jr. to his numerous therapy sessions.
He prepares dinner for his family every night after work. He also regularly cleans and does the laundry.
In addition to working as a clinical psychologist for the US Department of Veterans Affairs, Anthony runs Odyssey Psychological Services, a Great Kills-based practice.
According to him, his son is a happy, affectionate boy who has a sharp eye for detail and the capacity to be totally present in the moment.
However, he stated that it’s challenging to understand his thoughts and establish a deeper connection with him.
The pair looks forward to the day their kid can talk and become more independent, such as when he is completely potty trained and reaches age-appropriate developmental milestones.
However, nonverbal communication is still used today.
Since Anthony Jr. is skilled at pulling them by the hand and guiding them to a water bottle when they’re thirsty, making particular noises, or signaling the toaster when they’re seeking a waffle, the family knows exactly what Anthony Jr. wants.
“I can say that 95% of the time when he does have meltdowns, we’re not really sure where they’re coming from,” Elizabeth added. It’s challenging because he is unable to identify the issue. We frequently engage in a sort of guessing game.
Anthony uses options to determine his son’s preferences and attempts to divert him with activities like bouncing and tickling during trying times in order to deal with the communication barrier.
According to him, it’s difficult because there isn’t much that can be done about it. Early intervention is often recommended, but how is it actually implemented? What they want me to do is to speak with him, naming everything and repeating terms repeatedly. None of these are guarantees, but they are intuitive things.
Seven-year-old Ava performs her dancing class routine as her four-year-old brother, Anthony Jr., hops along.Shahi Priya
Developing steadily and slowly
Anthony revealed that after his son’s diagnosis, Anthony Jr. has improved his ability to navigate his body and developed greater awareness. His nonverbal communication has also improved, and he no longer throws tantrums.
However, as a health professional himself, he wishes for more transparency in the information delivered by medical professionals. He shared his own experience of doctors recommending new forms of therapy for his son, changes in diet and new vitamins, which left the family disappointed by the lack of noticeable change in Anthony Jr.
It’s difficult when it comes to autism. Parents are in a precarious situation. Anthony stated, “We’re desperate.” Every once in a while, I think about what the future can be and not be, and I get a little bit depressed about it. I m trying to be hopeful too. We also have to enjoy him.
He went on, Because of his disability, I m thinking about his future more than I am with Ava, so I am trying to give him the same courtesy of being a different kid.
He shared that he s learning to let go of his set expectations and become more flexible, so he can enjoy his son for who he is. This includes releasing his dream of playing little league sports with Anthony Jr. Instead, he s enjoying playing basketball with his daughter.
I feel like I am growing even when it comes to gender roles and stereotypes, he said.
And while he had hoped to have more kids, Anthony said they are stopping at two due to the demands of having an atypical child.
It wouldn t be fair to Ava, he said.
Ava and Anthony give their Anthony Jr. a kiss.Shahi Priya
A SISTER S LOVE: HE SMILES IN HIS DREAMS AND THINKS DIFFERENTLY
Ava, when she is not in school at PS 52, is busy with her dance classes, singing lessons and playing basketball. At home, she loves to play with her brother, and she finds herself hugging him and giving him kisses throughout the day.
Sometimes it s hard and sometimes it s easy. Sometimes we don t know what he really wants when he s having a melt down. I try to say calm down or maybe hug him or give him different snacks, Ava said. But sometimes he s funny. Like he smiles in his dreams and he thinks differently. That s kind of cool. I just want to go into his brain and see what he s thinking and how differently he s thinking from us.
Her favorite memory of him is when he is laughing for no reason or snuggling with her, Ava said. Her dream is to become a teacher one day.
Ava hugs her younger brother.Priya Shahi
Ava was always a sweet kid, but I feel like having her brother has really made her more sensitive and attentive to people s needs, her mom said.
Elizabeth continued, [S]he s only 7 and probably has more responsibilities than most 7-year-olds when it comes to helping out and looking out after him.
THE SUPPORT OF FAMILY AND A COMMUNITY OF PARENTS
Anthony says parenting two young children, one of whom is autistic, has brought him and Elizabeth closer — although it also adds stress to their marriage at times due to lack of sleep and being drained.
[D]oing things alone… that s really hard with our kids at this age and our son, he said.
The couple said they haven t had date night in a while, but once a week when Ava sleeps over at her grandparents, they order food and have a movie night.
Elizabeth shared that for additional support she taps into a Facebook group calledStaten Island Parents of Special Needs Children, which she says has been a great resource for her to find community and advice.
There s no judgment ever. I ve never felt any sort of competition or judgment from any of those parents — whether it is on the Facebook group or parents of children who are on the spectrum, she said. I click with these parents because they get it. If we re having a bad day or tantrum and we have to cancel last minute, they re going to get it in a way nobody else gets it.
She also appreciates her son s school, Community Resources Staten Island, which provides an augmentative and alternative communication device — a tablet that helps make communication easier.
Elizabeth, Anthony Brinn Jr., and Ava review the tablet provided by Anthony’s school, designed to make communication easier.Priya Shahi
His therapist at school customizes the device for Anthony Jr., adding images of family members, and pictures of foods he eats such as rice cakes, so he can request and point to these items if needed.
He s a very loving boy. He loves snuggles and cuddles. He loves music, especially since we put him in music therapy. And he also loves jumping around and playing rough too, she said.
Elizabeth and Anthony said their marriage has strengthened since becoming parents to an autistic son, deepening their connection even further, despite already being very close.
I consider myself very lucky, Elizabeth says. My husband is my partner in this.
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