Our Hidden Struggle: One Family’s Journey with Autism

Mangiante 1 - no blur

by Jennifer Brezina, Community Contributor

Denise Mangiante of Memphis felt like something was missing early on with her son Will. He didn’t make much eye contact, he rarely responded to his name, and he flapped his hands when excited, along with other obsessive behaviors. Their pediatrician reassured her that everything seemed fine, but when Will turned one, he still didn’t have many words – and Mangiante’s concerns continued to grow.

She made an appointment with a neuropsychologist to evaluate Will, even submitting a video that documented his quirky behaviors. She got a diagnosis she never expected: Will had autism, a brain development disorder. He was just about to turn two, and Mangiante felt heartbroken.

“Now that I look back, it’s so clear – but at the time, I really felt like I was making this entire thing up in my head,” she said. “Everyone thought I was over reacting. It scares me for parents whose family members and doctors tell them everything is fine, when so many times they should trust their own instincts.”

Will immediately began therapy at Janna Hacker and Associates, a Germantown-based group of specialists who provide speech-language, occupational, and social therapy. Mangiante says the words began coming, thanks to his therapists, and they finally enjoyed long awaited progress (Will’s first word was “more,” which he first learned through sign language.) Mangiante and her husband Gene also received training and learned how to work with their child with autism.

Knowing the Signs

Janna Hacker, founder of Janna Hacker and Associates, said, “Autism presents many different ways in children. Sometimes it’s helpful for parents to see YouTube videos of different children with autism to see the differences. Since it is a spectrum, some children have very mild autism. The good news is that our clients who get an early diagnosis and intensive intervention make significant progress. Many of them can even enter regular education kindergarten classes.
The Centers for Disease Control and Prevention estimates that 1 in 68 children in the United States has been identified with autism spectrum disorder. If parents suspect their child has autism, Hacker says a speech-language evaluation is a good place to start. Then, referrals can lead to additional testing or intervention as needed. A complete intensive program includes a special education preschool, speech therapy, applied behavioral analysis (ABA) therapy, and possibly occupational therapy.

Mangiante said, “It made me a better mom to learn how to communicate and bond with my son, and that comes with understanding his needs. It seems so random, but my biggest struggle was figuring out how to play with my own child, because children with autism don’t like the typical things everyone else likes. Through therapy, we’ve made great strides.”

Autism All Over Again

Three days after Will’s diagnosis, the Mangiantes’ lives changed again: they had a baby boy, Michael, who would present new challenges. He seemed different from Will at first – he interacted, showed great eye contact, and loved to be held – but at 18 months, Michael lagged behind in language. Soon, he began banging his head when frustrated, and he lost his social skills. The family’s pediatrician advised them to show “tough love” and ignore his behavior, citing that 10% of typical children hit their head. Then one night in his crib, Michael woke up with a swollen bruise that spanned from his hair line to the bridge of his nose. This was far from typical, Mangiante thought. This was regression. She immediately set up evaluations for Michael, and he began therapy at 18 months.

With both sons now on the autism spectrum, Mangiante says it felt like information overload involving numerous evaluations, mountains of paperwork, and phone calls. Her life had flipped upside down with therapy session after therapy session – not to mention the mental exhaustion and questions racing through her mind: Are we doing enough therapy? Too much? Will our sons ever be in a typical class? Will they be accepted for who they are? What will they be like in 20 years?

Moving Forward

Today, Will, 4, attends Holy Rosary Catholic School in Memphis. Through the school’s Angel Program, children with autism are offered intensive instruction in a classroom with typical peers, who serve as role models on how to speak, how to behave, and show what is appropriate. The peer inclusion combined with speech therapy, occupational therapy, and play therapy, continue to bring out new abilities in Will. When Michael is old enough, he will also attend Holy Rosary, but for now they’re focusing on ABA therapy and socialization through language play groups at Janna Hacker and Associates. Michael’s eye contact has returned, and his head banging continues to improve.

“The most difficult part of my day is seeing my children struggle, but I also have good moments celebrating the little successes,” Mangiante said. “Typical parents just could not understand the joy you feel when your son says hi to a peer without a prompt, after we’ve worked on it for years.”

In public, she says most people seem supportive when her children seemingly act out – but autism is an invisible disability, and most folks generally don’t know the struggles that parents face. She feels disconnected from her “pre-diagnosis friends,” she says, and play dates are almost impossible. It’s easier to skip social events altogether, which leads to isolation for the whole family.

For Will, his autism causes more fear than expected for every day events.

Mangiante explained, “If I turn the wrong direction on a street, it hurts him. He doesn’t understand that we can go a different way, and he’s scared of what will happen. If music is too loud, he pulls down his ears and his face turns bright red, screaming because he’s scared.”

Mangiante says she loves to work with her sons’ therapists every day. Sometimes, she even sees glimpses of Will without autism, and he has no fear.

“Therapists are a class of people that I never knew existed, a class of people who love my sons as much as I do and cheer on their progress,” she said. ” They teach with their whole heart, and they are more compassionate than anyone I have ever met.  They strive for greatness out of the children and never limit their possibilities.”

While the demands of living with two sons with autism are great, Mangiante says she and her husband work closely as a team – and they love seeing the world through their boys’ eyes.
“Children with autism really are smart kids, you just have to find a way to communicate with them so that they can open up and see the world,” she said.

For more information about local autism support and education, visit the Autism Society of the Mid-South at http://www.autismsocietymidsouth.org.

Know the Signs:
– Lack of delay in spoken language
– Repetitive use of language and/or motor mannerisms (e.g. hand flapping, twirling objects)
– Little or no eye contact
– Lack of interest in peer relationships
– Lack of spontaneous or make-believe play
– Persistent fixation on parts of objects

Photo captions (all photos courtesy of the Mangiante family):

1. The Mangiante family (left to right): Denise, Will, Michael, and Gene.