Perseverance
When you flip to perseverance in the dictionary there very well may be a photo of Vickie Nettles as the definition. She is the word in human form.
A 46-year-old mother of three, Vickie is proof that hope isn’t just something you think or feel. It’s something you do. Every day. Even when it’s hard. Especially when it’s hard. Even when there seems to be little to no progress. You keep pushing forward.
Story by AMANDA BEDGOOD
Photos by PENNY MOORE
Makeup by JENN RAUSCH [RiverSpa]
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More than a 14 years ago Vickie’s youngest child - now 16 years old – was labeled autistic.
It was a diagnosis that left her reeling, asking why and searching for ways to help her child. It was the beginning of a journey full of ups and downs. Full of long days and even longer nights. It’s a journey that has changed Vickie forever. From infancy there were signs that something was amiss with Vickie’s youngest daughter Catherine. Like Vickie’s other children she was colicky. But, Catherine’s colicky phase never ended.
She would bang her head on things, didn’t pick up on words quickly. She would become engrossed in something and not even turn her head to the sound of her own name just feet away and yet hear the opening to Barney from the other side of the house and bolt to sit for 30 minutes enrapt in the program.
By two years old she had only two or three words mastered. During ‘well baby’ visits, however, Catherine seemed to be progressing normally and reaching developmental milestones. Still, Vickie sensed something wasn’t right and her mother agreed. Before Catherine was two, Vickie’s mother sent off to the Autism Society of America for a packet about autism.
Vickie vividly remembers there were 13 indicators on a questionnaire in the packet. “She had eight of 13,” Vickie says. Once she had digested the information she made an appointment with a pediatrician. He ran a card across Catherine’s field of vision and she followed it. The doctor said she was fine. But, he told Vickie to visit a neurologist if she wanted to make sure things were normal. Around the same time Vickie started the testing process through the school district as well.
The medical testing was a process of eliminating any and everything that could be the cause of Catherine’s behavior. Vickie shakes her head remembering a conversation with a doctor about the possibility of a brain tumor. “He said, ‘if she has a brain tumor we can take it out.’ Then he trailed off,” she says. Tumor or autism?
“I knew either way – our lives as a family will change,” she says remembering that moment of crisis.
Accepting something could be wrong was perhaps the greatest hurdle. When it was time to hear the diagnosis Vickie headed to the doctor alone. She now realizes she must have still been in denial or she would have taken someone for support. It was a dreary, rainy day.
“What I felt inside mirrored outside and I cried all the way home. It was the worst drive of my life,” she says. Catherine was diagnosed with autism, which is a brain disorder that affects a person's ability to communicate, to reason, and to interact with others. They began early intervention with Catherine starting with speech therapy. There were times Catherine would last less than 15 minutes in therapy. Vickie’s sister had a child two months younger and she would see them develop and progress while Catherine did not. The gulf between the children grew wider and wider. It was a painful time that left Vickie isolated and Catherine’s behavior was in a word – horrible. She would scream. “And these were no little screams,” Vickie says.
She had to be fitted with a helmet to insure her violent outbursts didn’t leave her injured. But, slowly progress came. There were moments of light. Visiting the swing set in the park. Catherine loved the sensation of swinging. And Vickie started to move past the initial obstacle of ‘why me?’
“If you don’t get over that hurdle you’ll be stuck there and I have these two other kids depending on me. We have school concerts and football games and marriage all at the same time.” Finding the local autism chapter was a godsend. Vickie met other parents who gave her the most precious gift of hope.
She remembers one parent patting her on the arm and saying simply ‘honey, it gets better.’
“At the time I thought ‘yeah right,’” she laughs. “I didn’t believe her. But, I hung onto those words and they became my mantra. Without that group of parents from the Autism Society of Acadiana it was hard to know what to do, where to go, which treatments to try.
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Finding a way for Catherine to communicate would be the key to unlocking many of the difficulties. Because of the autism Catherine would simply stand in the kitchen and scream – unable to communicate anything she wanted or needed. They tried some sign language, which worked. But, they needed more. Vickie would cut out the pictures of food items on boxes and tape them up. She would pull them out and show them to Catherine during the screaming, looking for even the slightest reaction to determine what she needed. The slightest frown or a light in her eyes was a tiny indicator of what she wanted. The real breakthrough came when Catherine actually took one of the pictures off the wall and pointed to it.
“We whooped over that for days!” Vickie says. “You have to measure everything by baby steps.”
While communicating Catherine’s basic needs were a necessity, Vickie resolved early on to set another goal.
“I was determined that my daughter is going to tell me she loves me,” she says. “If I can get that I know we can build and get other things.” Autism doesn’t mean a child can’t give or receive affection and love. It is often the case that they express affection differently and while they may care deeply, they lack the ability to spontaneously develop emphatic and socially connected behavior that’s typical. Vickie would put Catherine’s arms around her and her arms around Catherine and say ‘I love you’ and ‘Catherine loves momma.’ At first Catherine’s arms would lay like limp noodles.
“She eventually understood when I squeeze, you squeeze. It took three or four years for her to hug back. She tolerated the hug and I can’t remember the day she said back ‘I love you.’ But, it was one of the best days of my life.”
It was a powerful moment. Vickie came from a background of affection, love, hugs and kisses. She was determined to share that with her daughter. “You have to be persistent with everything,” Vickie says.
Whether it was teaching her how to point or how to show affection, it took work every day and patience to see progress. But even at the most difficult times, Vickie knew her child could learn. She was raised with a younger sister with Downs’ Syndrome and progress, despite the apparent challenges, was not new to Vickie.
“I knew people with a disability could learn. I went to conferences, training and the secret was just repetition, repetition, repetition. Doing the same things over and over again.” Now, Catherine can write, which allows much more communication and she can get things now after once or twice in some cases. It is a far cry from the years when Catherine was put on medication because of her painful, violent behavior. It was one of the hardest decisions Vickie and her husband had to make. When Catherine was five years old she hurt another child.
“That was the straw that broke the camel’s back,” Vickie says. Catherine was on medication until she was 12 years old. Now she’s a student at Lafayette High School, loves the Food Network, cooking and swimming. She is a world away from the sleepless nights and relentless pain and frustration. Vickie describes her as middle of the road in terms of autism. And now Vickie can confidently tell the parents of newly diagnosed young children – ‘honey, it will get better.’
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As much as Catherine has progressed, Vickie has changed as well. When Catherine was born Vickie had everything in place. She and her husband Charlie had two other children – Richard and Laura – and Vickie’s goal in life to be a mother and wife had come true. She was shy. Happy. Things were right with the world.
“She was the last child. The family was complete and I was a happy little homemaker.”
The diagnosis may have rocked Vickie to the core. But, it was the coming months of work, sleep deprivation, struggle and eventual achievement that would really change who she is forever. Vickie tells me that 80 percent of couples with a child with a developmental disability divorce. She was determined not to be one of them.
“The stress is unimaginable. People cannot comprehend,” she says remembering the years when her daughter slept for maybe two hours a night and then screamed the rest of the time or the aggression that was often aimed at Vickie leaving her bruised and exhausted.
“We were all exhausted. When you think about that, it’s a miracle any of the marriages survive. The stress – it destroys everything,” she says. It did not, however, destroy the Nettles. They will celebrate 25 years of marriage in April. And it did not destroy Vickie. She is perhaps flourishing more now that ever. When this story hits the streets she’ll be working with the Autism Society on more than a volunteer basis as their first employee when they open the doors to their first ever office at 3108 W. Pinhook Road where families can come for resources and, of course, hope. During the more difficult times Vickie knew she was not alone. She had friends and family and the Autism Society. The once shy Vickie now speaks about the mission of the Autism Society of Acadiana to groups and she was president for more than six years.
In the midst of this she’s also found another ‘family member,’ her friend Vickie, who is like a sister to her.
“She’s made my life a lot more fun and that counts for a lot when you’re struggling,” she says.
The other Vickie also has an autistic child, who is older than Catherine. Whatever Vickie is going through, she knows her friend has probably been there too.
And while all of this is centered around Catherine, around her autism, Vickie has learned perhaps the most important lesson of all – she is not just Catherine’s mom. She is much more. She is the voice of hope. At monthly meetings she is able to give other parents that glimmer she was given years ago. Sure, there are still tough times. But, there is also the chance to see beyond the obstacles.
“People say ‘you make it sound so easy, your daughter is doing good now.’ We went through a lot of trial and tribulations to get to this point. If she can improve and develop, there’s hope for any child out there. Things get better. That’s what I want for everyone – to have that feeling of hope.”
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