It’s
been 3 years since we received Big Guy’s autism diagnosis. I didn’t think I
would cry today, which is incredibly naïve. Of course I’m crying! It’s what I
do. Three
years ago, my tears were a result of shock and fear and hopelessness. Today, I know
more; my tears are simply an expression of overwhelming love.
We were
smitten with Big Guy before he was even born. His daddy would kiss my belly
each day, telling him how much we loved him and urging him to grow big and
strong. When we first laid eyes on him, we were goners. He was the most
beautiful sight we’d ever seen. As he grew, we found him to be joyful,
animated, easy going, affectionate. We were delighted by each new discovery.
When Big
Guy was a baby, he would lie on his back and flap his arms and legs like he was
trying to fly. He would squeal with delight as he flapped. We’d never seen
anything like it, but none of the other new parents around us thought it was odd.
We know now that he was stimming: which is a repetitive behavior associated
with autism. Since Big Guy is also diagnosed with sensory processing disorder,
it’s possible his flapping was sensory-seeking as well.
When Big
Guy became mobile, he found new outlets for his energy: toe walking for sensory
input; racing back and forth in the house, literally bouncing off the walls as
he reached them; jumping up and down and squealing as he watched cartoons, etc.
At 7, he still engages in these activities. Watching TV is an aerobic event for
Big Guy!
As a
baby, Big Guy babbled and cooed and smiled, right on track. But he was slow to
develop words. Truthfully, we anticipated so many of his needs, that little
communication was required. Once mobile, he would express his wants and needs
by leading us to what he wanted and pointing or manipulating our hands to get
it. He’d take us to the fridge and place our hand on the door handle, for
example. When a friend gave us some fabulous Baby Signing Time DVDs for Big
Guy’s second birthday, signing allowed him to express himself without having to
drag us around the house. Eventually, he began speaking in two word phrases,
and we were ecstatic!
Big Guy
interacted with us so much to get his needs met, that we didn’t realize he
failed to interact for the joy of interacting. As a toddler, he wanted to be
near us, but was content to play on his own. As he accomplished things, he
didn’t seek us out to share in his achievement. We didn’t hear the typical
“look at me!” requests as he played and he certainly wasn’t creating things and
bringing them to us for praise. As parents, we initiated the social interaction
and delighted in our sweet boy.
I give
you this glimpse of our life because I believe autism awareness is far bigger
than knowing the most recent statistics. Yes, the CDC just released new
numbers. Two years ago, 1 in 88 people were diagnosed with autism. Now, the
rates are 1 in 68. That’s a 30% increase in just two years. Those numbers
represent real people! Real people, like my adorable boy. As the rates rise,
the odds are greater that each of us will know and love someone on the autism
spectrum.
Perhaps
you’ve heard the word autism, but you don’t really know what it is. Fair
enough. I didn’t either, until we received our first diagnosis.
Autism
Spectrum Disorder (ASD) is a neurological disorder that involves
difficulties with repetitive behaviors, communication, and social interaction,
to greater or lesser degrees. How those difficulties manifest is different for
each person. I gave you an idea of what it looked like for Big Guy in my
description above. But keep in mind, when you’ve met one person with autism,
you’ve done just that. Each person is unique.
When Big
Guy was diagnosed, the psychologist told me that autism is not a dead-end
diagnosis. Which means, there’s no end to a person’s potential. We can’t
predict the future for Big Guy, any more than we know how it will unfold for
any of us. But we do know early intervention (therapies) makes a huge
difference. These therapies give our loved ones the tools they need to succeed
in our neuro-typical world.
When our
kiddos are typical, we can teach them through our example. They learn to
interact socially and communicate by observing us. The skills come naturally.
When our kiddos are autistic, it’s not quite that simple. Their brains are
wired differently, so we need to teach differently. The sooner we understand
that a child has a neurological difference, the sooner we can reach them
effectively. It’s maddening to try harder and wonder why your kiddo isn’t
“getting it.” I imagine it’s equally as frustrating for the child!
When we
get an autism diagnosis, we can bring all the resources to bear; a whole world
of specialists opens up to us. Our kiddos may qualify for early intervention at
home or in a preschool setting. Big Guy benefitted from both. He also received
speech and language therapy, occupational therapy, and physical therapy.
After
the autism diagnosis, Big Guy became eligible for behavior therapy too. Through
ABA (Applied Behavioral Analysis), we’ve tackled skills like: impulse control (not
darting into the street), accepting “no,” waiting, potty training and other
self-help skills, transitioning from a preferred activity, taking turns,
answering personal information questions, like “what’s your name?” and “how old
are you?” and other age-appropriate social skills. ABA has made a dramatic
difference in Big Guy’s ability to interact with the world around him.
Last
night, Big Guy awoke at 3:00am and pounced happily onto my bed. When I groggily
marched him back to his room and tucked him in bed, he looked at me with a
downcast face and said, “I’m sad.” I hugged him and validated his feelings with
a simple, “I know buddy.” As I turned to walk away, he said, “I want to play
with you, and you want to sleep.” My heart about leapt from my chest. It seems
like yesterday that we were ecstatic over his two word utterances. Now, three
years after diagnosis, my sweet boy is communicating complex thoughts and interacting
socially, for the joy of it!! He has worked hard and grown so much!
I pray that when a
parent musters up the courage to admit they have concerns about their child’s
development, their friends and family would encourage them to trust
their gut and seek answers. An autism diagnosis isn’t the end. In many
respects, it’s just the beginning.