Part 2 of autism series: Mother tries to give her child a voice
Nov. 17, 2011 at 5:17 a.m.
Updated Nov. 20, 2011 at 5:20 a.m.
Rosemary Pena Watts sits cross-legged on the carpeted floor of her son Adam's bedroom.
The lanky 6-year-old Victoria boy plays with a hairbrush and falls in a slumber into his mother's arms, mumbling and sputtering in an attempt to talk, but nothing.
Adam Frank Garcia is a low-functioning autistic with mild mental retardation. His diagnosis three years ago changed his mother's life forever.
At first, his mother saw only the pain, but she has since taken matters into her own hands by advocating for autism and giving her son something he will never have - a voice.
Being an advocate
Adam's mother appears to hunch over as she crosses the threshold of a door into a room 10 feet by 16 feet.
She flips the light switch, unveiling a cramped room that looks like a slightly larger janitorial closet. The room holds a few chairs, an executive desk and a low-hanging ceiling.
If the room looks like a hole-in-the-wall starter business, that's because it is - and it's a source of pride for Pena Watts.
On the white walls are stacks of brochures of information on autism, a world she inhabits every day.
The room is the office of the nonprofit Autism Network Connection, an organization she started in May after finally making peace with her son's diagnosis.
But getting to that point was not easy.
As her son was transitioning and growing with autism, so was she.
"It's gotten a lot easier," she said.
She went through the typical stages of grief.
First, she denied what was happening, then she cried, then was angry, but now she is giving back.
Adam's mother speaks to families who have just had a son or daughter diagnosed. She has learned many of the ins and outs of surviving autism in Victoria, though she continues to learn more, she said.
"I had to figure all that out on my own," she said about why she decided to start the nonprofit.
Adam's mother can still remember what it felt like to not understand what was wrong with her son.
"I kept telling myself, 'He is delayed,'" his mother said as she watched her son play in his bedroom.
When Adam was a year old, he didn't walk, and he didn't talk.
He couldn't even sit up.
She felt deeply the pain of never hearing words like "mom," and "I love you."
And then, farther in the future, there is the fear of Adam going through adolescence. She worries about him growing older, becoming much stronger and more aggressive.
Then there is understanding other issues such as puberty and sexuality.
All of these thoughts can be overwhelming, Pena Watts said.
Still, she has accepted her son will be with her forever. And that, for his mother, is OK.
She shakes her head and looks toward Adam.
He's staring at his bunk bed, tapping the wood, nonstop.
He looks as though he's in full concentration, checking the depth of sound to each tap.
This incessant tapping is called stimming, a method of self-stimulation.
For the most part, she learned about his habits through Internet research, but starting her nonprofit also acts as a support group because she is not only helping newly diagnosed families, she's helping herself.
"It's a lot to take in," she said. "You often can feel lost. I feel it's my duty to serve parents and give them support and guidance."
The ins and outs of autism
Besides needing emotional support, parents of autistic children assume a heavy financial burden.
Rummaging through Adam's trove of toys, you'll find objects that would appeal to any boy.
Adam ignores the toys, though. Instead, he reaches in and grips the neck of a red hairdryer with its electrical cord cut off.
This is one of his favorite hair dryers, and he has several.
Adam's finger shifts the on-and-off switch up and down, the sound is much like the rhythm of a metronome with changing tempos.
The sound sparks a relief that possesses his body. In minutes, he's lying on the floor, fully in his world - the realm of a low-functioning child living with autism.
This attraction to hard objects, like hairbrushes and vacuum cleaners, has cost his family about $1,000 in just this past year, when he first found his love for these objects.
No doctor can really tell you what it is about these objects that attract some autistic children, other than the issue is sensory.
"No two children are alike," his mother said. "I believe it's the weight and the click of the object."
Pena Watts does not find the expense of buying these objects out of the ordinary. To her, parents spend just as much, if not more, on buying the latest electronic gadgets for their kids.
Adam's taste is just different, she said.
The price tag for an autistic person is a hefty one, said Michael Ganz, an adjunct assistant professor at Harvard University's School of Public Health who authored a Harvard study on the costs of autism in 2006.
The ballpark figure was at $3.2 million in an autistic person's lifetime. However, with inflation, that figure has likely risen, he said.
Ganz helped author the study because he wanted his research to help policymakers understand autism's financial impact on society.
"I wasn't surprised it was that expensive," Ganz said.
The direct cost, which includes medical costs like therapy, is expected to be about $29,000 a year. Non-medical costs, which include special education services, camps and childcare could be anywhere from about $38,000 to $43,000 a year, depending on the severity of autism, he said.
"I think what's very interesting about the findings is that many people think of autism as a disease of childhood," he said.
Adam's family is lucky. His mother has him in the Medically Dependent Children's Program, a Medicaid program that pays the full amount of all therapy services.
The process can take years and requires time, copious paperwork and six-month evaluations, she said.
Receiving assistance like this is also a huge part of what her nonprofit focuses on, she said.
Adam's support includes speech therapy three times a week and, at one point, physical therapy, which he now does at home with the help of his mother and the brace he wears on one of his legs.
Speech therapy per session costs about $185, so that's almost $600 a week, something Adam's mother said she knew she couldn't do had she not been qualified for the program.
Helping Adam talk
Then comes the cost of Adam's "talker," as his mother calls it.
The $9,000 tool is the only way Adam can communicate. Even then, Adam is still tinkering and learning the keyboard.
The keyboard is known as the Vantage Lite, an augmentative and alternative communication device.
Adam rocks back and forth, eventually leaning into the keyboard, his bottle-cap glasses refracting the display light.
"Goodbye," says the talker in a robotic voice.
"Goodbye," again, in rapid succession.
This is one of the words Adam has mastered on his own, but through speech therapy sessions with Meredith Potts, he's learned much more about how to use the device.
Potts is viewed as an autism-friendly Victoria speech pathologist.
About 80 percent of her clients are somewhere on the autism spectrum.
"Adam is a neat kid," she said. "He's very fascinating. You can't compare one kid to another."
Potts worked with Adam when he was a baby and started working with him again in July with his speaking device.
Some speech therapy days are great, and Adam will learn anywhere from five to eight words. He's even started constructing two-word sentences.
As with many autistic children, Adam is receptive to what is being communicated to him.
These devices have opened the communication gateway for kids with autism, Potts believes.
"The research has shown that kids on the spectrum process information differently," she said. "They are more attracted to synthesized voicing. There is a lot to be said about this."
Watching Adam communicate with the talker leaves no doubt in Potts' mind.
"It's absolutely a sensory thing," she said.
Some older children in Victoria have mastered even more of the device. Then, there are others who are adults and know even less than Adam.
Each family has a different threshold, and that's OK, Potts said.
Helping bridge the gap
Adam's mother has learned to find help in raising her son.
One of her biggest allies is the Vine School, the only autism school in Victoria.
If you don't know the Vine School, chances are it's because it is so hidden; it's inside the First United Methodist Church in Victoria.
The school is almost four years old and consists so far of only two classrooms, said Erin Hatley, director.
"It became apparent to me that autistic children weren't getting the services they needed," she said.
This is exactly how Adam's mother feels.
She swears by the Vine School and has them listed through her nonprofit as a key local autism organization.
Hatley feels strongly about what Adam's mother is doing because she was in her shoes about six years ago.
When Hatley moved to Victoria from Austin, she could not help but notice the lack of services.
She has seen the awareness grow more through people affected by autism like Pena Watts, but she still feels Victoria has a long way to go in providing more for its autistic community.
For now, the Vine School focuses on kids with moderate to severe levels of autism, like Adam.
Picking Adam out of the classroom is easy.
He's stimming, or tapping, all along the walls with a cheeky grin on his face that makes the large, brown eyes behind his bottle-cap glasses squint in happiness.
There is no mistaking that smile - he's clearly communicating.
There are four other students in the classroom, plus two aides.
The classroom learning environment is all about baby steps and assessing each child and understanding his needs and the goals set up by the parents, as Potts does in speech therapy, Hatley said.
"We've got to go piece by piece," she said. "It's about making life easier for them."
The cost of the Vine School can be daunting. Tuition is $12,000 per year for classes and $6,000 per year for the early learner's program.
However, financial aid is available, and the school frequently does grant writing, which many parents may not be aware of, Hatley said.
About 70 percent of the kids at the school are on some sort of financial assistance, she said.
Despite the small class sizes being conducted in a shared building, Hatley has one thing - vision.
The long-term goal is to have an actual center with room to grow.
For now, the school is at maximum capacity. But she should like to get more classrooms, speech pathologists, behavioral therapists and occupational therapists all under one roof - a one-stop shop, she said.
"We're getting more awareness in the community," Hatley said. "I think Victoria, as a whole, is learning more about autism."
And sometimes, all it takes is one catalyst, like Pena Watts.
"I'll find a way. I'll do whatever I can," she said, a smile spreading across her rosy cheeks. "This is my child."