By Jessica Wray
At the ripe age of 3, the only things greater than the smell
of fresh cut grass and the freedom of the great outdoors is a good movie –
Monster’s Inc. – and the vibrant color orange.
Layden Vaughn loves his trampoline. The small, one-person contraption
rests in the living room, and his mom says he can’t get enough of it.
On Facebook, there’s a video of Layden – small snapshots of
his personality shown in bouncy, chaotic energy that only toddlers know how to
harness, and a cute, cheeky smile. He does this little dance, with his hands on
his hips, his upper body waving back and forth to an unheard beat playing in
his head.
In one part of the video, Layden cradles two handfuls of
toys carefully, like every child does in the ever-frustrating process of having to move your toys to the perfect play spot. He hugs them close to
his chest, the Monster’s Inc. action figures sticking out in all sorts of
angles from his small hands.
He sets them down on the table, his perfect play spot.
But Layden doesn’t make any noises. He doesn’t bang them
together in an unseen battle between Mike, the one-eyed monster, and the big,
blue and purple-spotted Monster’s Inc. character.
Instead, they’re lined up carefully. In a perfect, neat
little row.
Because, his mom says, Layden doesn’t play with toys. He
never has.
At 12 months, she said, he was on track with other children
his age physically, but wouldn’t talk, nor would he try too. High anxiety in
social situations – even with family – gave her another reason to suspect
something might be off about her little boy.
At 18 months, Layden’s line of toys began in earnest.
When Layden was almost 2-years-old, his mother, Rachelle
Vaughn, 26, took him to a pediatrician, where the doctor put her in touch with
First Steps, an Indiana program that works with very young children. They told
Vaughn Layden had a sensory processing disorder – a disorder that effects how
the nervous system takes in and decodes messages through the senses, and
transmits to motor skills and appropriate behavior.
“They said that he qualified to have them work with him
until he was 3,” Vaughn said. “They worked with him for a whole year. He had
speech, occupational therapy, and developmental therapy.”
Each therapy session, she said, was once a week for an hour.
She noticed improvement, but had always wondered if there was a different
explanation for Layden’s problems.
“When he turned three, it was actually almost a year ago, it
was at his big meeting,” Vaughn said. “(His therapists said) that he, without a
doubt, had autism.”
One in every 88 American children are on the autism
spectrum, autismspeaks.org says. Autism Spectrum Disorder, or ASD, is a general
term for various complex developmental brain disorders. And on the Autism
Society of Indiana webpage, they say the numbers are higher – “according to a
new government report that found that 1 out of every 50 school-age children –
roughly one on every school bus – has the condition,” the website says.
According to autismspeaks.org, a website
dedicated to the national advocacy and awareness for autism, says “these disorders
are characterized, in varying degrees, by difficulties in social interaction,
verbal and nonverbal communication and repetitive behaviors. They include
autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive
developmental disorder-not otherwise specified , known as PDD-NOS, and Asperger
syndrome.”
Since Layden received a straightforward diagnosis from his
therapists saying he has autism, it’s been an uphill battle for the Vaughn and
her husband, who also have a 2-year-old son, Cooper.
The problem, she said, isn’t that there aren’t any programs
for autistic children in her area, or that there isn’t anyone willing to help –
it’s about finding ways to pay for treatment.
“He just recently got into ABA therapy. Before that, as soon
as he turned 3 last fall, he started in developmental preschool, because we
couldn’t get him into ABA therapy with our state insurance,” Vaughn said.
ABA therapy, or Applied Behavior Analysis, is a treatment
commonly used for children with autism. Behavior analysis works with how
learning takes place. A common tool used in ABA is positive reinforcement.
One exercise his therapist uses with Layden, Vaughn said,
includes giving Layden a snack or a toy, and telling him he has to wait to pick
it up or go to it.
“He’s up to 10 seconds,” Rachelle said.
And she was proud. For Layden, who is energetic and always
moving, 10 seconds is a huge accomplishment.
But paying for this kind of treatment is pricey.
Vaughn said she called everyone. No one was willing to help
her, she said. Their insurance company would tell them to call someone else,
and then someone else again. It was a never ending circle of run-around phone
calls.
So, she said, they had to get off state insurance, and they
went with a private company instead.
Now they pay for insurance out-of-pocket. It’s what they
need for Layden’s therapy, and to keep seeing him progress, she said.
And progress he has.
Franklin College student Morgan McClellan, a junior
journalism major and Layden’s aunt, said Layden has made strides since starting
his therapy.
When he eats, she said, he’ll take one bite of a chicken
nugget, run around for a minute, and then come back to the table to take
another bite.
But now, she said, “He’ll be able to sit at lunch for 25
minutes.”
And that’s not all.
For a child who wouldn’t speak, and didn’t seem to want to
try a year and a half ago, Layden now says short, fragmented sentences, that he
enunciates pretty well, Vaughn said.
“He has started talking. He communicates what he wants with
words now,” Vaughn said.
And the shining moment for her, she said, was something many
other parents take for granted.
“Love you, mom mom,” he said, in a clear voice, not
disjointed or higher pitched like his broken speech had been previously.
It was his “I love you,” in the clear voice of Layden,
something Vaughn had never heard before.
“I cried, and I held him for like an hour. I knew it was in
there.””
The therapy has been working, she said, and she hopes more
people come to understand what autism looks like, and know that it’s different
for everybody.
“I don’t want to change who Layden is,” Vaughn said.
And McClellan agrees.
Him lining up his toys, she said, she thinks is his way to
cope. It’s something that he’s figured out how to do on his own.
It’s not just autism awareness any more, it’s autism
acceptance, and autism appreciation. You shouldn’t just be aware of it and try
to fix it. Autism isn’t something that I believe anymore should be cured,” she
said.
At the recent lecture given by Elaine Hall, “Parenting a
child with special needs: A spiritual journey,” junior Natalie Miller asked
Hall a question and addressed the crowd. Her insight into autism comes from a
special relationship with the topic. Miller has autism.
“I feel that what’s between our ears and what’s inside our
ribcage is more important than a doctor’s diagnosis,” she said.
She asked Hall, “How do you get neuro-typical people to try
and enter your world?”
“I know my entire life I’ve had to look at the real world
and I’m glad that I do have the insights that I have, but it’s my world and how
I perceive things. And it’s like people treat it as if it doesn’t matter. No
one takes the time to really try to see where I’m coming from. I can tell from
how they’re talking, they’re wanting to get it over with. I feel this almost
every single day, with even people I know care, and it hurts me. How do you get
people to understand you when they’re not interested to begin with?”
In response, after a moment of silence, Hall said it’s time
to “stop looking at the deficits, and start looking at the assets.”
It’s the things Layden does that people consider is autism
that makes McClellan see his special gifts.
“You slowly figure out that all the things that they do that
are autism, are the cute things they do. Things that you don’t want them to
ever change. I think the most important thing to know is that for people who
have autism, they shouldn’t be any different than who they are.”
Vaughn, McClellan, and their family have started a
fundraiser as part of Autism Speak’s awareness campaign, a walk in Indianapolis
June 15.
Those interested in donating, or learning a little bit about
Layden and his family, can check out their Facebook page.
Their team is named Layden’s Lineup.