Defining Moments

Cade Melerine was born on a steamy summer afternoon in New Orleans, Louisiana on July 10, 1997. Little did I realize just how much my life would change that day. I’ve taken care of many nieces, nephews and godchildren, but Cade would by my first born son. The first of five; that was my initial plan. I was a natural at making children laugh. After all, that’s what uncles and godfathers do. We make them laugh, have fun, feed them junk food and send them home.

But Cade would be the first we couldn’t send home. There he was, covered in a mass of white greasy goo. He looked like something out of a science fiction horror movie. Actually, he was rather adorable once the nurse cleaned him up. His lungs filled with air as he cried for the first time.

I held that beautiful slime covered baby tightly, hoping not to drop him. Slowly I swayed until the crying stopped.  His dark eyes opened widely as he took in the world around him.

“So Helena’s a boy.” My wife, Julee smiled as I laid Cade on her chest. We didn’t want to know the sex of the baby.  We wanted it to be a surprise. Surprised we were. I had just painted the room a soft pastel yellow. We figured that would be a neutral color. I also painted an image of Tinkerbell fluttering around the bassinet leaving a trail of pixie dust in the midst. Ok, so we had a strong feeling it was a girl. Helena Janice Melerine would be named after both our deceased mothers. Instead, Cade was named after his place of conception. Cade’s Cove is a charming valley nestled in the Great Smoky Mountains of Tennessee. A week-long getaway brought home a lifetime of memories.

By the time he was nine months old my sister, Iris had Cade saying “Nana.” That’s what Cade calls her. Iris is fifteen years older than me and has been by sister, friend and mother figure all of my life. She’s the closest thing Cade will ever have to a grandmother. With some effort on our part, Cade soon followed with “mama” and “dada.”

Things were going great for our new family. We had a new home; an amazingly well behaved baby and I just started a new job where I didn’t have to work sixty hours per week. I remember a conversation I had with a co-worker.

“I was getting worried about my daughter,” my colleague informed me. “But her pediatrician assured me that she is progressing at a normal rate.”

It was nice to see my co-worker relieved. I could sense the feeling of worry she had lately. “That’s good news.”

“The doctor said not to compare her to kids like Cade,” she continued. “Cade is progressing at an advanced level.”

He really was. Cade was quite the chatterbox by his second birthday. “I love Nana most,” “Give me cookies,” “Let’s watch Teletubbies.” All this changed six months later. Cade developed a high spiking fever out of nowhere. He began trembling and stiffened with sudden jerks. The convulsions continued and looked like spasms or seizures. Immediately we rushed him to Children’s Hospital.

Panicked, I dialed 911 along the way. “My son is burning up and having convulsions!”

“Ma’am,” the dispatcher tried her best to relax me. “I need you to remain calm.”

Calm was not an option. I stormed through the emergency room doors cackling in hysteria. Only once Cade was admitted did I sit back and regain my manly voice.

“Your son is going to be fine,” the doctor assured me. “Febrile seizures can be frightening but within an hour or so everything is back to normal.”

Relieved, we left the hospital with our son and a bottle of Motrin. But things weren’t going to be fine and slowly Cade vanished in silence. My world was cast into darkness. Everything went dark. My son was gone. Our happy baby boy was no longer using the skills that labeled him advanced. He wasn’t even crying. Crying is a baby’s first form of communication.  Any attentive parent learns their child’s many cries. I knew when he was hungry, sleepy or hurting. I knew when he wanted to be held. I even knew when he dirtied his diaper just by the sound of his cry. But Cade was no longer crying those familiar cries. Cade’s only sound was a piercing scream. With every scream I scrambled to comfort him.

We began hearing the word “autism” and I began thinking of all the reasons it couldn’t be autism. After all people with autism are born that way. Not Cade, he was advanced. People with autism avoid eye contact. Cade looked me in the eye with no problem. Autistic children tend to line toy cars in a single row and spin their wheels. Cade played with toy cars just like any other child. To prove it, I bought more and more toy cars. I raced them around the room until my knees scabbed over. No matter how much I denied it Cade had autism. But why the sudden change? Was his high fever a factor?

With regression, typically developing children start to lose previously acquired abilities. This is most evident in their loss of speech and fine motor skills. Regressive autism usually occurs between the ages of 15 to 30 months. There are some reports that link regression with seizures and some that don’t. Cade hasn’t experienced seizures since that day. Reports have also linked autism to such things as pollution, pesticides, genetics, parental age, prescriptions taken by the mother, vaccines and gluten. Whether or not any of these things cause autism isn’t my expertise. I am not a scientist, neurologist or psychologist. I am merely a parent. As a parent, my job is figuring out the best way to deal with all this crap.

Drifting gloomily in a cloud of darkness was proving not to be the best way. I had to kick my self-pity aside and focus on my son. There are defining moments in life that shape who you are. The pain, sorrow and loss will either break you or transform you into something more powerful than you ever imagined. I was now Cade’s voice and this was going to be his best life possible. We began extensive speech and occupational therapies, none of which was covered by insurance. Our usual response from the insurance company sounded a bit like this, “I’m sorry Mr. Melerine but this type of coverage is reserved for stroke and accident victims.” We spent an average of $2,000 per month on doctors and therapists. Our bank accounts were drained and our credit cards were maxed out. But, little by little Cade began responding to these treatments.

In all honesty, Cade’s therapists used many of the same techniques I’ve seen animal trainers use. If Cade performed the requested task he was rewarded immediately. This helped Cade associate the reward with the proper action. Positive reinforcement made Cade more likely to repeat the desired behavior. Unfortunately, it also gave him a deep fondness for Cheeto’s. Consistency was key. Whatever the therapist did in her office we did at home. Before long, I was narrating my every move.

“I am making a sandwich.”

“I am getting a napkin”

“I am walking to the table with my sandwich.”

“Oh damn! I tripped over the dog and dropped my sandwich”

By his second grade school year at Arabi Elementary we noticed great improvements. Using visual cues, he was able to complete simple reading and math assignments. Individualized Education Programs (IEP’s) are developed by school administrators and the child’s parents. IEP’s are required for all children receiving special education services. Meetings are held at least once per year to determine if goals for the child are being achieved. That year’s IEP was one I will never forget.

“We’ve noticed something new with Cade,” his teacher informed us.

Dreadfully I asked, “What is it?”

“Well,” she paused for a moment. “Cade has been saying a few new phrases.”

Sounded great to me so far. “What’s wrong with that?” I thought to myself.

His teacher continued. “He’s been saying ‘Oh damn!’ ‘Oh shit!’ and my favorite ‘Oh fuck!’”

Hard as I tried, I couldn’t stop smiling. “What made him say this?” I asked.

“The first time I noticed was after he dropped his pencil,” she continued. “Now every time he drops or bumps into something he lets it out.”

“Wow!” I exclaimed. “So he’s using it appropriately.”

“Well it’s never appropriate for a seven-year-old, Mr. Melerine.”

“Ok,” I chuckled and continued. “We’ll work on that.”

Cade’s teacher and her aids were all wonderful. However, there was no autism specific programs in the St. Bernard Parish school system. Cade’s classroom consisted of children with varying degrees of disabilities.  At the time, there was only one school with programs specifically targeting autism. The school was located in uptown New Orleans and the tuition was well over $20,000 per school year. The school offered no financial aid, no transportation and no after school care. One of us would have to quit working just to get him there. It was financially impossible.

Then, later that same year the unimaginable happened. Hurricane Katrina ravaged through southern Louisiana leaving miles of mass destruction. We lost more than our home on August 29, 2005. We lost our entire community. How did Cade handle such change? Like a champ. In fact he handled it much better than I did. I’ve always heard of keeping things routine for autistic kids. However, what good is it to shelter a child from change in an ever changing world?

Seeking long term refuge we found ourselves near Charlotte, North Carolina. We were in a cute little southern town that we often referred to as Pleasantville. In Belmont we found peace. Although we had no material possessions, we had a roof over our heads and we had love. The best part was that public schools in this area offered autism specific programs and they were free. There was a reason that storm blew us here.

For the next six years Cade was doing great. Granted, what we considered great others would consider chaotic. Having a child with disabilities is never easy. But, you learn to count your blessings.

Throughout our many ups and downs we remained strong. I’ve always been an easy going guy but when it comes to my son I’m a fighter. I’ve been fighting for Cade all of his life. However, there was one fight that nearly broke me. Cade had been on numerous medications most of his life. Wanting to do what’s best for our child we did what doctors recommended. Unfortunately, none of the medications ever really helped. In fact he had negative side effects from every last one of them. Despite all our trials with medication, nothing prepared us for the beast he became when his doctor prescribed antipsychotic drugs. Our family was lost in desolation and despair. We were losing Cade to a streak of violence that was inconceivable. The fight was hardly worth fighting. What good is fighting when you’ve already lost the person you’ve been fighting for?

“With autism,” his doctor continued, “violence during puberty is a very common occurrence.” Several long-term facilities were recommended. The thought of institutionalizing my son weighed heavily on my heart. I questioned Cade being prescribed anti-psychotic drugs. His doctor stood firmly behind the medication. “Without the medication your son would be dangerous Mr. Melerine.”

The plaque on his wall did not impress me. Sure he graduated from a very prestigious university, but I’m a parent. Parents have something no degree can ever equal. We have intuition. Our gut feeling lets us know the difference between a hungry cry and a dirty diaper cry. My child was crying silently beneath his monstrous facade. It was time for this fighter to make a comeback. Convinced that a parent can make a difference I quit my banking job to be a stay at home dad. The non-stop violence stopped when the antipsychotic drugs stopped. Funny thing is I didn’t need a degree to figure that out. I just needed to be a parent.

Kelly Jude Melerine