Most of my days were filled with chaotic silence.
Silence. How can I actually say that word with having two fully active boys? They scream, they whoop, and they holler, mostly at each other or sometimes me.
Most of my days were filled with silence because there was no one I could talk to that would truly understand. Someone that could understand that my oldest son, we’ll call him Gray, is on the mild to moderate side of the autism spectrum.
In my case, Gray is mostly non-verbal and sometimes aggressive, but gives the sweetest hugs when he’s in the mood. When he hugs me, there is no pretense. He’ll lay his head on my shoulder, wrap his arms around my neck, and play with the bottom of my hair that is constantly in a ponytail. And as he’s doing that, he’ll make this little half growling hum in the back of his throat.
He was born October 30, 2011. Gray was nearly a Halloween baby, but he didn’t quite make it. When that bouncing eight-pound baby boy was placed in my arms, I stroked his little cheek and introduced myself as his mommy. I promised him that I would always love and protect him.
My days began to fill with silence right before Gray’s first birthday. I was close to seven months pregnant with my youngest son. Gray came down sick, just one illness after another, until finally his little body couldn’t handle it anymore. One seizure followed after another. In the nearly seven hours we were in the emergency room that night, he had 49 seizures. With each one, a little piece of my heart cracked because he cried for my comfort, but each seizure ripped it away.
He was hospitalized for three days and was diagnosed with febrile seizures. Luckily, with this type of seizures children usually outgrow them by five years old. And that’s what I hoped would happen.
But after he turned 15 months old, I started noticing things. I was stuck at home with a newborn and a toddler. All I had was time to notice these little, quirky pieces of a much bigger puzzle.
That’s exactly what it was. A puzzle, and I had to solve it. Nearly every doctor that saw him brushed me off as a worried mom or took the “wait-and-see” approach. He was too young for me to be having these kinds of worries for his developmental growth.
Several people told me I was crazy, and I began to believe it. Gray was developing normally. He was walking, running, and beginning to climb. He had boundless energy and did not know how to stop. What was there to worry about?
But he was not engaging. He wouldn’t make eye contact and would hardly ever answer to his name.
He started mouthing all of his toys and spinning the wheels. Then he started spinning himself in circles for an hour or more at a time.
Gray started aligning all of his toys in a specific pattern and would throw a monstrous fit if anyone touched them.
From that point on, I started taking notes of every little quirk. And was told, once again, I was absolutely crazy by more than a few family members and medical professionals. Nothing was wrong with Gray. He’s just a little boy, and little boys can be lazy in development. I was even told that I was hurting him by putting him through these medical visits.
What I thought was seizure activity started again after being absent for nearly two years. He would be quiet, playing with a toy or drinking from his cup. His hands would jerk, then his arms. His eyes would start moving rapidly side to side, and he would blink really hard. Every time this happened, I would see his little body shaking just the tiniest bit. And then as quickly as it would start, it would stop. He would rub at his eyes, yawn, and then go back to playing like nothing ever happened.
At night, he would wake up screaming and scratching, almost as if he were being bitten. He would have to be physically held down and hugged to get calm, and as I did this, I would feel his extremities jerking one after another. I would bite my lip so hard to keep from crying with him, because I had to be the calm, strong one. I had to be stoic or he would be even more scared.
I was so alone, and my days went by quietly. But that mother’s intuition in the back of my head wouldn’t be quiet. I just knew something wasn’t right, and I was too stubborn to let it go. And it took a doctor who would listen and a toddler therapist to tell me what I already knew. The Fighter was severely developmentally delayed. More than 50 percent in all areas. Now, I wanted to know why was he so delayed and what was causing the seizure-like activity to pick up again.
He started early intervention services July 2014, and, he flourished. Gray learned how to say “bye,bye” and “mama” appropriately. He showed more eye contact. And I found it sweet that when he wanted to be held, he would grab for my hands ever so gently, have me stand up, and raise his arms. I’d pick him up, spin him around, and then hug him tightly. With the right help, the sky was the limit when it came to the Fighter’s abilities.
I received the diagnosis of ASD in September. Where most parents would see it as a death sentence for their child, I saw it as a label to stick to the road map of the Fighter’s life. I now had an answer, and I wanted to know what I needed for his care.
More than a few times, I broke down crying thinking that I had done something in my pregnancy to cause this. Was his autism diagnosis because of environment, or could it be something deeper hidden within his body? Was it his vaccinations?
At the end of September, I got the paperwork in the mail that calmed my fears but definitely put a curve in the path. Gray was missing certain pieces of a gene that is thought to pertain to developmental health. Missing those pieces predisposed him to autism, significant language delays, seizures, and at its worst, schizophrenia. Further testing showed that this gene deletion was passed from me and made other children I had, namely my youngest son, a carrier of the disorder.
Most days now, I can handle the silence. There’s a reason it’s so quiet. Without words, I can watch my children more closely. Without the words, I can see when the pieces of the puzzle don’t quite fit and then I can figure out why. It’s a lonely road ahead of us, but he’s got me to make the footsteps beside him in the sands of time.