April 26, 2014

With autism, every step is a victory

Having a toddler is challenging enough, but children with autism and their families live with a broad array of behavioral and communication issues – and often a misunderstanding society.

If you had asked me nine years ago what I wanted my baby to be, I would have given you the typical answer any excited parent anticipating a new arrival would say: “I don’t care, as long as he or she is healthy.”

How wrong that answer would turn out to be.

After eight years of being the parents of a child living with autism, my husband, Jonathan, and I are just as happy and proud of our son as any parents of a typical “healthy” child.

Jackson was diagnosed with autism – a neurological disorder that causes developmental delays – when he was just 2. Those living with autism typically have difficulties with sensory processing, anxiety, communication and social skills.

We knew when Jackson was 4 months old that something was different. He couldn’t hold his head up like other babies his age. We still had to cradle his neck. Physical delays are very common.

By 9 months, when other infants were crawling, pulling themselves up and perusing around coffee tables, our baby was barely able to sit on his own.

His neurologist described him as “floppy” and used the words “failure to thrive.” I’ve never cried so hard or experienced such depression.

Jackson began physical, speech and occupational therapy, and the doctors tested him for a barrage of other diseases and syndromes that are listed in the piles of paperwork in a box hidden in a closet.

He was poked and prodded, and he cried many tears. So did we.

Having a toddler is challenging enough, but children with autism have constant tantrums, especially at stores and places with crowds of people. The noises and flickering of fluorescent lights send them into sensory overload.

So we quit venturing out with Jackson, especially to restaurants. Our life was very isolated. When we need to shop for groceries or run a much-needed errand, my anxiety level would escalate because of the stares and whispers from others.

As a toddler, Jackson would have “meltdowns,” and we struggled to calm him. Sometimes he would bang his head on the floor or hit himself.

“Why can’t that woman control her child?” people around us would say. “She needs to spank him. I wouldn’t put up with it.”

Mostly, Jackson’s problem stemmed from his inability to communicate his feelings. He speaks fairly well, but he often becomes upset if he can’t communicate.

Much like someone with obsessive-compulsive disorder, he obsesses over routines. We faced other typical autism-related issues with things such as toilet training and self-help skills.

We were determined to find every opportunity and service that would allow him to blossom. Early intervention is critical.

We don’t live in denial about Jackson’s condition. I am not ashamed of my son, nor do I seek attention or pity. I love talking about him and the funny things he says and does, just like any parent.

I also want other parents who are experiencing the same problems to know they are not alone and that they should seek help. Living in denial or ignoring the symptoms will only hurt in the long run at school and work.

When he turned 5, Jackson began applied behavioral analysis (ABA) therapy at Chrysalis Autism Center in Rock Hill. He would spend about six hours a day working one-on-one with a therapist.

Without ABA, we believe Jackson would not be where he is today. His therapists became like family.

This year, he entered first grade in a Rock Hill public school, where he is in a mainstream classroom and is doing remarkably well. Every day has its challenges. But for every challenge we face, we have double the blessings.

My children have taught me compassion, humility, and patience – all attributes I seemed to lack. Instead of smugly questioning others’ behaviors and mistakes, I refuse to judge. I have not walked a day in their shoes.

Children bring so much pride to their parents. If they win a ball game or a trophy, or make straight A’s, it’s enough to make us cry with joy.

Even if Jackson does not have the ability to play a sport or fly through school with all A’s, that’s OK with us. He meets his own goals, and we could not be more proud.

Some kids might shoot the game-winning basket and score a victory. Our victories are just as rewarding. I cried and called everyone I knew the day Jackson chewed and swallowed his first bite. Every step he made in physical therapy was a victory.

He won the game.

Our little guy has a huge heart. He loves giving gifts and even wraps his prized possessions with a hand-written note that says how much he loves us.

After a stressful day when I feel defeated, Jackson will wrap his arms around me and say, “I love you so much, Mommy!”

That’s all I need to hear.

So today if you ask me, “What do you want your child to be?” I will tell you, “I want him to be happy.”

Tracy Kimball is a freelance photographer, wife and mother of two who lives in Rock Hill.

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