I Feel Your Pain
I am sure most people have heard the phrase “I feel your pain.” It’s merely a way of showing empathy. Have you ever become so in tune with a person that you really do feel their pain? During the first years of life children count on their parents to notice any sign of discomfort or ailment. For the past eighteen years I have been attentively observing Cade. Continuously I watch for the slightest clues. When he laughs I laugh and when he hurts I hurt. It’s a bond that’s hard to describe.
Cade has been on numerous medications most of his life. “This drug has been showing positive results in the treatment of autism,” doctors have told me. Wanting to do what’s best for my child I followed their instructions. Honestly, none of the drugs recommended for autism symptoms have ever helped. In fact, he had negative side effects from every last one of them. I don’t recall any of them that didn’t cause weight gain. Other side effects experienced were dry mouth, excessive perspiration, inability to perspire, warm/hot sensations, sleepiness, sleeplessness, constipation, diarrhea, dizziness, muscle/joint pain, migraines and the list goes on. To make matters worse he can’t explain these feelings.
It was the summer of 2010. Cade had just returned from his favorite place. Camp Sunshine is a week long event that takes place in southern Mississippi. It’s a camp for children with disabilities and he looks forward to it all year long. Cade’s birthday typically falls during camp and he celebrates it there. We also have a small celebration when he gets home. It was shortly after his thirteenth birthday and Cade was prescribed Abilify. My wife, Julee, and I sat with Cade to discuss what type of cake he wanted.
“Um, let’s see,” Cade pondered. “How about a Batman cake?”
“A Batman cake sounds awesome!” I exclaimed. “What type of cake though?”
“A Batman cake,” he repeated.
“Do you want a chocolate Batman cake?”
“Chocolate Batman cake,” again he repeated.
“Okay. A chocolate Batman cake it is.”
Cade sat at the table making a list of things he would like for his birthday. The word Batman appeared on the list well over a dozen times. He paused for a moment and looked to the side. Suddenly his eyes rolled back and his muscles began to stiffen. He let out a loud scream but was shortly back to his birthday wish list. Several more items appeared on the list and several more times the word Batman appeared. Again he paused. This time he dropped to the ground in agony. Frustrated by the pain he began banging his head. A feeling of helplessness overcame me as I tried to comfort him. The outburst lasted about thirty minutes. During this time I could feel my head hurting as I prayed for relief from his pain.
I began looking for answers. Apparently many people complained of migraine headaches while taking Abilify. Concerned about this I talked to Cade’s doctor. “Head banging is a psychotic behavior,” he informed me. I let him know that I didn’t think he was banging his head for any psychotic reason. I felt that he was banging his head because it hurt. Since he can’t verbalize, “My fucking head is killing me.” He did what he could to provide some sort of temporary relief.
With some convincing from the doctor we agreed to place Cade on an anti-psychotic drug. What happened next was a nightmare I will never forget. He became extremely violent and would attack at any moment. Driving even short distances became very dangerous. He smashed holes in the walls as quickly as I patched them. I was constantly repairing doors, windows and furniture. I fabricated stories to explain my scratches, bite wounds and bruises. It was easier for me to say I had a pet bear than to say I was attacked by my child.
To get through this very dark time in our lives I depicted the old Pink Panther movies with the late Peter Sellers. Inspector Jacques Clouseau hired a butler named Cato to surprise attack him. He did this to help keep him alert at all times. Needless to say I am now one alert son of a bitch. Cade’s aggression struck at any moment. I have had to leave meals unattended on the stove while he sought me out for an ass whipping. I was forced to wrestle with him for hours on end. No matter how long the battle, he would not tire. I soon realized it was easier to hide in the tub. It turns out he was lousy at hide and seek. There were times I would lie in the tub crying out of hopelessness. Other times I would lie there playing Angry Birds while laughing at the absurdity of the situation.
I discussed Cade’s aggressive behavior since starting the medication with his doctor. His solution was to start Cade on a different anti-psychotic drug. The doctor was convinced that puberty was triggering the sudden violent mood swings. I did as prescribed and Cade began taking the new drug. The violence continued. This led to a series of medication changes. Each time it was a different class of anti-psychotic drug. Each time it was a little worse. Each time my suggestion that the medication was the problem got dismissed. After all, it couldn’t possibly be the medication causing such savage behavior. Why would a mind altering drug cause someone to act differently?
Summer 2011 Cade did not attend Camp Sunshine. Instead he was admitted to the adolescent psychiatric unit. We entered through the hospital’s emergency room. Cade’s violence was out of control. We watched while the police on duty restrained him. It wasn’t long before the hospital staff sedated him for everyone’s own safety. The weeks he spent in the hospital seemed like an eternity. Visits were supervised due to Cade’s violent classification.
I recall my fist meeting with the hospital’s psychiatrist. I informed him of Cade’s behavior changes and how I believed they related to the anti-psychotic medications. He did his best to convince me otherwise. He touted his credentials and explained that I was merely a parent. Secretly I wanted to punch him in the mouth. Unfortunately, we already had one violent classification in the family. Although I was sure the medication was the problem I put my faith in the doctor’s hands. I desperately wanted my son back.
The day came when Cade was ready to be discharged from the hospital. Although it was one of the happiest days of my life it was also one of the scariest. Cade was on a new medication. Despite my concerns it was still an anti-psychotic drug. I drove home frightened that I would be attacked while behind the wheel. My fears were unnecessary. Cade did great. When we got home he went to his room and began playing with his action figures. Julee and I sat on the couch and smiled. The sound of Cade playing was music to our ears.
In a flash the sounds of happiness were gone. “I’m the bad guy,” Cade groaned in the most eerie voice. The next seven days were straight out of a horror movie. Cade pulled handfuls of hair from my wife’s head and broke everything in sight. To make matters worse he now had insomnia. The violence was 24 hours a day. We slept with the bedroom door locked and a dresser pushed in front of it. I was forced to escort Julee to the bathroom in the middle of the night and stand guard at the door.
A week later we found ourselves back in the emergency room. “Get this shit out of his system,” I demanded.
The hospital’s psychiatrist replied, “I still don’t believe it’s the medication. With autism, violence during puberty is a very common occurrence.”
The hospital staff suggested different long term facilities. The thought of Cade living so far from home was a feeling I will never forget. I informed them that I wasn’t ready to give up. I also informed them that I wasn’t willing to sign a consent form for any anti-psychotic medications. I begged them to try something different. I promised them that if they got the anti-psychotic drugs out of his system they would never see me again. I remember visiting Cade during this stay at the hospital. There’s one visit in particular that stands out.
I sat at the table eagerly waiting. The room was surrounded by windows. Staff members stood near these windows observing the patients’ interactions with their visitors. The clock ticked loudly. My plastic chair gave way as I leaned back to scan the room. The area was reminiscent of a middle school classroom. There were calendars and maps on the one wall without windows. There was also a chalk board on that wall. The round tables where visitors sat were industrial in nature and surrounded by yellow and orange chairs. The clock ticked loudly. I observed the interactions at the adjacent tables. I could tell the other visitors were looking for the same thing as me. They were looking for signs of hope. The clock ticked loudly. Through the window I saw Cade approach. We sat across from each other and talked about all his favorite things. It was hard not to cry. We continued our talk and Cade reached out his hand. For the next several minutes we sat across from each other holding hands. He looked me in the eye. Without saying a word he let me know that he was going to be all right. I could feel his sadness and his desire to go home. My worries were suddenly lifted.
The date came for Cade to be discharged once again. This time was different. The idea of being attacked while driving didn’t even cross my mind. The violent outbursts stopped when the anti-psychotic drugs stopped. The funny thing is I didn’t need a degree to figure that out. I just needed to be a parent. Cade still suffers from migraines. By tracking his migraines the common trigger seems to be allergies. Unfortunately, Cade has a different allergy during every season. And although he wouldn’t hurt a fly he knows he can whack it to me when the migraine pain gets to be unbearable. Don’t get me wrong. It sucks. However, I am thankful that I am the only person he uses as his occasional punching bag. By observing him I can usually sense when a headache is coming on. In those instances I can give him something to prevent a full blown migraine. There are other times that I miss the clues and look back on them to reflect. Just like Inspector Clouseau I must learn to be alert at all times.
It’s frightening to think about how many kids are locked up in a facility due to a medication that doesn’t agree with them. It’s even more frightening to think about these children receiving the medications the rest of their lives. Even though it gets exhausting having Cade in my head all the time I am thankful to have him home. For this reason I will be his voice until the end.
Please help support funding for autism research by getting involved in your area. I know I butted heads with Cade’s doctors. After all I needed them to listen. I truly believe they wanted to help but autism is such a large puzzle. My mother put her faith in medical professionals to help her get through many obstacles in life. Here’s one of her writings that gave me inspiration during these heart breaking events.
The healing hands that he did give
To heal the lame and blind
The warming touch of his embrace
There’s strength unto the mind
The ER doctor has his way
He prays to God above
Let me console the open wounds
And ease the pain with love
The psychiatric doctor cares
He’s there to understand
Give wisdom to my knowledge Lord
He reaches to your hand
The surgeon does your work Dear Lord
His skills are learned with care
Consoling with your help each day
There’s healing everywhere
The doctor of your church my Lord
He came to heal the soul
The peace and joy that come within
The greatest story told
Kelly Jude Melerine