5-08-2023 4:05am

From Silence to Stardom: From Denial to Acceptance—a Mother's Journey

Lesley Misko Editor

by Jane Stahl

From all accounts, Nick Myers, senior at Boyertown High School, positively stole the show as the character of Teen Angel in Grease, the sold-out musical production held at BASH in mid-February 2023. His performance and vocal talent “wow-ed” the audience and brought his mother Michele Barrett to tears as she watched.

Most mothers would burst with similar pride—and likely produce tears--at their child’s success—happy for them, of course. But not all mothers would have Michele’s journey as the context for her “proud Mama” moment.

Let me explain.

Like mothers everywhere, from Day One, Michele just knew that her beautiful baby boy was perfect. She describes Nick as quiet and agreeable. As an infant, he cried little, made no noises. As he missed developmental milestones over his first year, she pushed aside concerns—knowing that each child has their own timeline for development and that most children catch up…in their own time. As a communications professional--an English teacher, versed in language development, she patiently held on to hope that the delays, while noticeable, would prove to be stages he would outgrow.

But then…as he failed to respond in expected ways to verbal clues and requests; didn’t gesture; couldn’t follow, reach for, or point to named objects; and didn’t turn his head to respond to voices…the tests for auditory issues began. A diagnosis of hearing loss—even deafness—was suspected. Yet work with an audiologist wasn’t conclusive.

Test after test offered only elusive conclusions; he was too young to be able to reach a firm answer. Finally, at 15 months, a diagnosis of Expressive and Receptive Language Delay, known as PDD, Pervasive Development Disorder, was offered. Mom could work with that.

The journey began. She read, scoured the internet, attended workshops, devoured blogs and webinars to find remedies, techniques, strategies to encourage her baby boy’s lagging development. She quit her teaching job to work with her boy. She started a group page on Facebook in search of other mothers who were facing the same challenges, with whom she could ask questions and explore ways to work with Nick. “We need each other, people to ask ‘What do I do next?’” she says.

Nick’s condition—still undefined—dominated every minute of every day. He couldn’t be left alone; he’d wander out of the house onto busy streets. The security measures that are put in place for a toddler weren’t enough for an older child. Cabinets, stoves needed to be secured—higher up for safely.

And there was so much to do to stimulate his development. She knew that the earlier therapy is begun to develop social communication skills, the greater the lifelong gains. And she knew that she was fine with the job of helping her son overcome his developmental delays.

Luckily, she had a “posse” of women friends whose children also had “special needs” and whose shared journeys provided needed support. No one worked harder than Michele Barrett. At helping her son. And, as it turned out, at denying the truth, the eventual diagnosis of his condition.

“While acceptance that my baby had a serious issue was hard, I thought, ‘I got this,’” she admits. “My moment came after Barb and Andrea, fellow teacher friends, and I had spent the day together, and Barb, before leaving, left a book behind on my coffee table with the title—big and bold--on the cover: Autism,” Michele recalls.

“When Andrea called later to see if I was OK, to see if I had seen the book that was left and was OK with recognizing that Nick fit the label, I told her I had seen it but not to tell Barb that I had flung that book across the room. Anger and grief flooded my heart as I was presented with the true diagnosis about Nick—the truth that I’d been denying—the truth that gutted me,” she continues.

“And, truth to tell, I never touched that book. Never. It sat in that corner…until maybe Mike, my husband, picked it up. I just know that I never touched it.”

Subsequent testing revealed Nick to be Autistic with ADHD (Attention Deficit Hyperactivity Disorder) that present equally in his language delay.

Another moment of truth arrived when Nick was to enter public school kindergarten. Nick had attended several pre-schools because pre-school after pre-school had suggested that he needed a one-on-one aide in order to succeed. Michele was certain that she just hadn’t found the pre-school that understood him.

“Yet, when I was told, again, after a thorough independent evaluation consisting of many long sessions with a psychiatrist from Alvernia, that to enter public school kindergarten, he’d need a one-on-one, I finally had to accept what I’d been denying—his diagnosis was definitely Autism and ADHD,” she shares.

“At the time, I merely murmured, ‘Oh’ but then, shortly, ‘This is it; I’m all in.’ But then, on the first day of school, when the district had no IEP (Individualized Education Program) prepared for him and no ‘one-on-one’ for him and said that they’d forego arranging for a ‘one-on-one’ until they got to know Nick, I left the meeting and immediately hired an advocate.

“He was assigned a ‘one-on-one’ the next day,” she continues, “and I knew in that moment I’d arrived, at accepting the truth about his diagnosis. There was no way, at this point--we didn’t go through all of this--to finally get me there--to face a delay in getting the help he needed for one more minute.”

Being a parent means that we care so deeply about our children’s welfare that we can’t easily separate any pain or difficulty they experience from feeling it ourselves. “The cells from our hearts and brain actually exist in their hearts and brains,” Michele insists.

“Our own hearts and brains walk around in our children’s bodies. It’s true,” she insists. “We are neurologically connected; our heart and brain cells live outside of my body in my children. And, unfortunately, I’m not in charge of them! They are different people who have their own lives and experiences which makes me vulnerable and hurt whenever they are. It’s crazy!”

Wisdom tells us that we must “Parent the child you have, not the child you wish you had.” As empoweringparents.com notes, “As soon as you knew you were having children, you probably began to dream about who they were going to be, how they might be like you, and hoped they would be successful in life. You may have wanted your child to be into football or academics, but then reality set in. You found that your son didn’t really like sports, and your daughter didn’t have much interest in school. The truth is, one day many of us wake up and realize that our children are just different than what we expected.”

“As I look back, I recognize that Nick’s difference has brought unusual joys,” Michele shares. “I remember watching the penguins in the video ‘Happy Feet’ and watching my son—inspired by the music--dance around the house with such joy. In that movie one of the penguins wasn’t able to echo out a song, but he shook, danced, moved—jammed—to the music. Music of all styles in all ways—even the music in commercials--has inspired Nick his entire life.

“I remember the first time he stood up and walked: my mother-in-law and I were in the way of his TV viewing. He just got up and took 6 steps so he could move around us and see the TV,” she adds. “You have to keep in mind that this was a child who hadn’t scooted along the couch, play-walked, or ever tried to get up on his own,” she continues. “But when it was time…when it was Nick’s time, he performed perfectly. And that ability, that determination comes through in his performances on stage. He doesn’t appear to be nervous or shy or timid in any way. A light switch seems to go on, and he just does what he needs to do.”

Michele recalls that a young Nick wouldn’t tolerate a book near him. Michele, as an ardent lover of books, found his rejection of books a hard fact for her. But one day she recalls his coming to her while she was folding laundry with an armful of books and plopping himself down on her lap, asking her to read the books. All of them. They spent the rest of the day reading all the books. Today, Nick is a prolific reader and writer; he is, in fact, writing a book as well as composing songs.

Nick’s determination showed up in other areas—like humor. “He leaned in heavily to hard things like learning why things were funny,” Michele explains. “Individuals with autism do not ‘get’ sarcasm, double entendre, and jokes.” She recalls that Nick used a thick catalogue of Far Side cartoons and an Alaskan version featuring moose to teach himself and challenging Michele in instance after instance—no matter what else she was doing—to explain why things were funny. “I had to dig deep sometimes to try to explain,” she grins. “But he wouldn’t stop trying to understand. The corners of those books were shredded from use; he worked hard to learn.”

What Michele doesn’t say is clear: it is his difference, the autism and ADHD that she didn’t want to accept in his early years, that now makes him great.

“Because of his ADHD we lived in the dark a lot about school events; no forms or paperwork came home with him; we were often unaware of deadlines to sign up for things; we didn’t always know what was going on until he’d announce, ‘I’m joining the band or chorus or I’m trying out.’ And we’d just have to trust that he knew what he was doing; it wasn’t easy.”

Michele is grateful for the teachers and doctors, therapists and organizations for their special contributions and support. Shout out’s go to Easter Seals, pediatrician Dr. Gross, SAM (Service Access Management), Kencrest, and the Berks County Intermediate Unit.

She recalls his fifth-grade teacher who, she suspects, gave up her lunch on a regular basis for a group of her special needs students who needed help in developing friendships. “It broke my heart one year when Nick came crying to me realizing that, besides a handful of his cousins, he had no friends at school to invite to his birthday party.

“He didn’t know how to make friends,” she confides. “In one of my more dramatic moments, I shared the dilemma with that special teacher who then made it her business to teach them how to make friends, to help them become friends. Making friends became part of his IEP. And those boys are friends to this day.”

She credits Barb Moyer, a speech and language interventionist, who came to her home for three years twice a week with not only helping her work with Nick to express himself and to teach her strategies and techniques, but becoming a part of the family.

Music and voice teachers—private teachers like Patricia Keith and public school music teachers from elementary school through senior high have been some of the “angels” who encouraged Nick, developed his talents, provided remarkable opportunities, gave him a chance to perform, and—perhaps most important— gave him a place in the world, an identity. “It’s not always easy,” she admits. He’s had a melt-down or two. Yet even that is cause of celebration because he’s expressing his wants and needs.”

“Here’s this 6’2” very quiet individual who offers no eye contact, no greeting when he enters a room and no good-bye’s when he leaves. But when he walks on stage, he just lights up. His voice is remarkable; his character performance is spot on. Thank goodness for understanding teachers!”

L-R: Student Nick Myers, with director Jeffrey K. Brunner, celebrates a stellar performance as Teen Angel in the high school's production of the musical Grease.

Nick’s plans after high school will be decided in “Nick’s time,” as Michele explains. “I learned from the program handed out at Grease that he has thoughts of attending Penn State,” she laughs. “Who knew?”

What she does know is that no one needs to go through life without help, without support, without friends who understand, who push, whom you trust, with whom you can connect and provide a “place,” an identity in the world. “We can only be successful in the world if we don’t have to do it alone,” she shares. “Even laundry!”

There’s no doubt: it takes a village to raise a child. And today, Michele Barrett, one “proud Mama,” gives a standing ovation to the “remarkable people” in her village, who said “try this,” and stood by to help an uncommon star be born!

A "B Inspired" podcast episode featuring Jane's conversation with Michele is scheduled for May 5, 2023 and can be found on your favorite podcast platform.