RealMom: One-Word Bombshell

It’s amazing to me how a life can change in an instant. It has happened so many times in my life, where within a moment everything changes. Our whole existence is filled with these surprise twists and turns, which most of the time catches us completely off-guard.
I suppose it shouldn’t have been a total surprise to me. For years, I have begged, pleaded, argued, and tried to force our pediatrician to refer us to a behavioral specialist in regards to Hayden. It started when he was about 18 months old, gradually the calm, smiling, social baby I knew started to fade into a running, screaming, uncontrollable little boy. Immediately, the consensus was ADHD, whispered among family members and friends. Our pediatrician quickly dismissed this.
“Almost every child has a form of ADHD, you just have to change your disciplinary tactics.”
So, two years later we’ve blown through every book about parenting and disciplinary technique from every library in a 50 mile radius. Three hundred dollars’ worth of Barnes and Noble, Hastings, and Border’s receipts later we’ve tried every approach, every ideal we’ve come in contact with. Time-out spaces, safe-room spaces, dietary changes, sleeping habit changes, and just about every modern parenting technique proved no difference in our child’s behavior. He seemed oblivious. He still couldn’t speak, he still ran in circles, climbed the walls, ran away in public, stuck his fingers in his ears and screamed, and constantly put himself in danger. Then came the turning point.
Hayden loves to spend time at my parent’s farm. My parents are retired, with 80 acres of roaming space, four ponds stocked to the rim with fish, a huge tractor, a four-wheeler, several trucks, two warehouse-sized work sheds, and just about every tool known to man. My son adores spending time there with his grandparents, “helping” Papa to work on various things, and having their attention all to himself. He spends the night once or twice every few weeks, which gives him a break from our crazy household, and it gives me a chance to catch up on my housework and one-on-one time with my two younger children.
One day in the mid-summer, Hayden was out working with Papa on the farm. My mother was inside, fixing lunch. Dad was intent on what he was doing, and Hayden slipped away. A few minutes later, Dad get’s Mom’s attention inside, tells her what’s going on, and they start searching. They check the house, the yard, the swing set, the barn, the sheds…and then the panic sets in. Hayden doesn’t know how to swim, and doesn’t realize that this is a problem. He’s the happiest drowning child you ever saw. He will drink the entire pool up with a smile on his face. Time and time again at the pool we have to do a quick grab from the side because Hayden’s decided he’s going to try to make like a fish on the deep end. The horrifying thought of him making his way to the pond and trying a mid-summer swim on his own creeps into my parents’ minds.
My dad lets out a whistle that can be heard miles away. My mom runs towards the house, panic-stricken. On her way from the barn, Mom’s heart stops pounding long enough to hear a noise coming from my nephew’s broken-down Probe parked next to the shed. She stops and looks carefully. Inside, peeking covertly out the window is Hayden. She runs to the door, which is locked, and pleads to Hayden to flip the switch. He’s smiling, shaking his head no, and laughing. Mom can see the beads of sweat running down his forehead. It’s over 110 degrees outside, and inside the un-ventilated Probe, sitting in the blazing sunlight, it could easily be 25 degrees hotter. Mom screams at Dad, who runs over from the barn, and struggles to find the key to the Probe. They open the door and pull out Hayden, pasty white, sweating and gasping for air. He’s still smiling. It’s still a game for him. He doesn’t realize at all that ten or fifteen minutes later he would most likely have been unconscious.
That moment, that one experience told me something was wrong here. Hayden had no fear. He had no conception of boundaries, and he lacked the ability to understand when his life is in danger. Something was severely wrong with my son.
So, after strongly urging my pediatrician during a routine visit (and a few follow-up phone calls to annoy him even more) I finally got through to him, and he referred us to a guidance center. The behavioral therapist felt like it was an open-and-shut case of ADHD with some possibility of bi-polar disorder. She sent Hayden to their psychologist for some more evaluating. Two evaluations later, he says we need to take him to Children’s Mercy for an overall evaluation. He wants to rule out autism. He doesn’t believe autism will be the case, but he wants to be thorough. The only way to rule it out is to go through with an evaluation.
We get Hayden on the four-month waiting list with Children’s Mercy Behavioral Center for an autism evaluation. They’re the highest-referred children’s behavioral center in the Midwest. They’re worth the wait, according to other parents.
Three-and-a-half months later, his evaluation takes place. They bring us in, and immediately it’s apparent that he will be thoroughly evaluated, given the fact that I’m sitting opposite of four specialists. I’m at ease, he’s in good hands. A child psychologist begins telling me about the process, and she’s looking through the two home evaluations I completed myself, one as Hayden’s parent, the other as his teacher. He’s home schooled because the preschool wasn’t able to deal with his energy and behavior. She commends me on being so detailed.
Two specialists lead us to another room, while the other two stay with Hayden. Over the course of two hours I can hear them in the room next to us, and at various times I can hear Hayden screaming. The psychologist interviewing us tells me that it’s okay, he’s in good hands, they can deal with him. It’s the first time anyone has told me that they can handle him. I’m so impressed that the rest of the evaluation is a blur. A week later, my husband and I are back, without Hayden. He’s happy hanging out with his grandparents while we get down to the consultation with all four specialists.
His psychologist sighs, looks at us, and begins a conversation that I will remember for the rest of my life. One word rings out in my ears, and for a while it’s all I can hear. Autism. Hayden is an autistic child. She continues to tell me that he has a disorder which, for now, is classified under the autism umbrella, because he has attributes from all over the spectrum. PDD-NOS, pervasive developmental disorder, not otherwise specified is the diagnosis. It falls under the autism umbrella because Hayden displays characteristics which cannot be grouped with a specific type of autism. He’s all over the board, so to speak. But it’s treatable. Hayden can learn to live with his disorder, even thrive in spite of it. But it will take work, and it will take years. It will take changes to our lifestyle, and it will most likely still be with him all his life.
For hours, even days after this consultation, I’m lost in thought. It’s hard to explain what a parent goes through when a diagnosis made. At first I was in mourning of my dreams for my child. You take for granted the idea that he’s going to have a normal childhood. It’s a hard thing to have to let go of that, and accept the fact that special education will be the basis of his first school years. They tell me, if we work hard enough, that by high school he may be able to attend class with his peers.
It’s hard to deny the anger that fills you after you realize that there is no answer to autism. The medical society still has not figured out the cause. So you’re not sure why YOUR child has this disorder, when so many other children lead normal lives. You’re angry that so many other parents have it easy, while your trying to make your home, your lifestyle, your life a better place for your child. For other parents, their child’s happiness is as simple as buying a new toy, or switching on the TV. For us, it’s a long, drawn-out guessing game, playing the process of elimination until hours later you finally figure out what he wants.
It’s hard to understand that my son will probably never lead a normal life.
So I got proactive, sat down at my computer for a whole day, and researched my way into a crash-course education on autism. I connected with facebook groups, support groups, and other parents of kids on the spectrum. I contacted Social Security and got Hayden signed up for benefits, and also got him on the waiting list for benefits through the Department of Mental Health.
I found that other parents are the most reliable source of information, education, and support when it comes to autism. I took great comfort in connecting with people who have gone through the same thing. It’s exhilarating to know that there are people you haven’t even met in person, and they wouldn’t bat an eye about supporting you. Other parents were single-handedly responsible for bringing me through that tough, horrible time that follows a diagnosis of this magnitude.
My husband, however, registered no difference whatsoever. He didn’t break down, he didn’t mourn, he didn’t get depressed. He simply accepted it as a reassuring nod that we knew something was wrong. It amazed me the difference in how either of us took the diagnosis. That one word, for him, was a vindication.
I still strive to understand why this has happened to our family. I’ve researched everything from genetics to vaccinations (which is a whole separate subject entirely.) We have changed our entire parenting technique successfully this time, and even revised our opinions on traditional medicine. This one word has altered our lives entirely. What was at first a shocking epiphany, has now become a proud ballad sang by every part of our lives as parents. No, he’s not normal. But what is normal anyway? My son is unique, my son is incredibly intelligent. This one word is no longer a label to us, it is a message. It is a creed. It is a promise that we will do everything in our power for our children, no matter what. This one word. It’s a life-changer.