May 262011

A few weeks ago, I sat in my family room with Craig and said, “There are so many Monkees who have little ones with autism. I need someone to teach me about it.”

Two days later, my beautiful and brave neighbor, Heather, emailed and said, “I’d like to write about my son.”

Of course you would, I said.

Monkees, meet Heather and Preston.

My baby boy turned seven this week, and I’ve been a little weepy.It’s not just a case of the mommy blues – a little wistfulness that life is “passing by so quickly,” or a touch of nostalgia for the end of “little-kid-dom” coming to end.

My son’s birthdays – while always happy occasions marked by the standard moonbounce-jumping, cake-eating celebration – are touched with a hint of sadness for me.Each year I come a little closer to understanding the challenges my sweet boy will face in this world, and I worry. Fret.Lose sleep. And yes, even let myself indulge in a little self-pity for a moment.

School’s going to be tough for him; athletics – frustrating; and making friends, well, we just pray that he does.

You see, my son, Preston, has autism.It’s something that’s taken me nearly four years to say without getting a huge lump in my throat or tear in my eye.And yet, sometimes speaking the words aloud still feels like a kick in the gut – like when I’m sharing the news for the first time with a long-lost friend.A surge of emotion waves over me, flooding me with a feeling of sickness and disbelief that autism is our reality.

Let me introduce you all to Preston.He might just surprise you.He doesn’t fit the bill of what you may have heard about autism through Hollywood portrayals or headline-grabbing stories.He’s not a number-crunching genius like some, or in his own private world, like others.

Preston has charmed many-a-therapist with his wide grin and mischievous sense of humor.He adores his big sis, and tries to negotiate a playdate every day of the week.He makes us laugh – and scream – almost every day of our lives!At first glance, you might just mistake him for your typical pizza-eating, Chuck-E-Cheese-loving 7-year-old boy.

Autism takes many, many shapes, and we are greatly blessed that Preston is on the higher-functioning end of autism. Still, it’s been a long journey to get him where he is today, and we’ve learned to celebrate the little victories that we simply took for granted with his “typical” big sis.

To understand the so-called “autism spectrum”, picture it as an umbrella, where each spoke has a different specific label: autism, Asperger’s Syndrome, pervasive developmental delay (often referred to as PDD-NOS), and some are even now saying ADD.But under the umbrella, there are common themes: language impairments, difficulty with social interactions, obsessive behaviors or fixations, and behavioral problems.For some kiddos, the issues are obvious;others, not so much.

Preston’s particular “brand” of autism is marked by significant speech and language delays, and difficulties communicating and interacting with his peers. So, while he can easily rattle off a list of 10 different fruits, he would have difficulty explaining the differences between an apple and an orange.Though he has the vocabulary of a nine-year-old, he has a tough time translating what he knows in to conversation.And while he desperately wants to play with other kids, he lacks the social skills to be able to ask if he can join in the fun.

Think of a file cabinet in the brain that’s supposed to be alphabetized so the information can easily be retrieved.In children with autism, some fool has come in and shuffled everything up, filing away important information using a secret code that can only be deciphered through repetitive and persistent therapies.

He also struggles with fine-motor tasks like writing, and other tasks that require the two sides of his body to work together seamlessly, like swimming or even opening a jar.

And then there is the quirkiness.We all have our idiosyncrasies, but for children on the autism spectrum, eccentricities are just part of the package.Some days it can be frustrating, but over time we’ve learned to find the humor in it all.

Preston gives us a kick out of his ability to tell us every single make and model of car that every family member and neighbor on our street has.

You also didn’t hear any complaints from me when one day he woke up and decided that he must have his bed made, clothes picked up, and doors closed to his closet if there was to be any peace in our household. This lasted for a few months, and then one day, that chapter was simply closed.

And who can forget Mario, of “Super Mario” that is.Preston is the reigning king of Mario Kart WII in our household, and can tell you everything there is to know about the courses, style of cars and characters.Strike up a conversation with him about Mario, and he may just never shut up – something I never thought he would do even two years ago!

Then there’s the “bad behavior” – the big B.For us, one of the first clues that something was amiss with Preston was his delayed speech and “bad behavior.”When he was a toddler, he screamed all day, every day, frustrated by his inability to communicate and unable to control his feelings – picture terrible twos on steroids.

The word finally came down when Preston was two-and-half.A team of specialists from Georgetown Hospital sat my husband, Brad, and I down and told us they “couldn’t rule out” that Preston was on the autism spectrum.It was just too soon to know for sure. You could have knocked me over with a feather. We both knew deep down that our lives would never be the same from that moment forward.

Still, we argued with ourselves and the doctors over the next year.But he’s not anti-social; he laughs; makes eye contact.I told the doctors, “It’s just that a light bulb hasn’t gone off for him on how to communicate.”Little did I know, I was actually defining autism.By the time he was three-and-a-half, we got it.

I now see Georgetown’s squishy diagnosis as God’s way of easing us into the idea of what lay ahead.

Talk to any parent of a child with autism, and they’ll probably describe the first year or two after the diagnosis as the “dark days.”What does it mean?What do we do?Will he grow out of it?Could they be wrong?

I just wanted someone to hit me over the head with a frying pan and just tell me what to do to make it all better.Of course, that didn’t happen.

But what happened is I realized, maybe for the first time, that I couldn’t – and shouldn’t – try to “do it all” on my own.God has equipped me with the tools and strength to go to battle for my son.Yes, fight, because that’s what it takes!

Stealing from a Mother’s Day sermon at church last week, I am a “mom on a mission” – a mission to help my son fulfill his potential and purpose on this Earth; a mission to defeat autism; and a mission to “pay it forward,” helping other moms out there on there on this bumpy road.

I thank God every day that he gave me a wonderful husband, Brad, to share the joys and hardships of this life.He’s been my rock and partner every step of this journey.

God also gave me a beautiful daughter, who loves to be a helper and friend to her brother; he brought my dear friends Kelli and Ann Marie in to my life, who have shared their own personal autism journeys with me and helped me with mine; he’s made it possible for my parents to move hundreds of miles to be closer to us;and of course, introduced us to true angels walking this Earth in the form of special needs therapists and teachers.Nikia, Tina and Jess – we couldn’t have survived without them!

Five weeks from now, Preston will graduate kindergarten at our local school, hand-in-hand with “typical” kids in a regular old classroom. Just a few short years ago, we questioned whether this would ever happen. We’ll be cheering him on from the sidelines of graduation, just as we will as he makes his way through life – so proud of his accomplishments; so grateful he’s our son.

Carry On, Warrior
Author of the New York Times Bestselling Memoir CARRY ON, WARRIOR
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