Wednesday, April 2, 2014

Just the Beginning

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. 

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