Elementary – thetruesuperman

The Real Superman Part X

By Jeff King

Over the next several month’s Dylan continued to have seizures he had Grand Mal, Absence, Myoclonic, Clonic, Tonic, atonic. You name it, he had it. The seizure activity was so frequent, my wife and I often wondered how long can Dylan survive like this. These dark, demonic beast had taken control over my son’s body and mind. Between the Clonazepam, and the seizures, this little boy was absolutely fried. I remember crying leave him the hell alone! After he would shake and violently convulse. I felt like Father Damien Karras in the Exorcists when Regan was convulsing and being distorted by the demon that had possessed her! I to screamed out “Take me! Come into me!” Leave him the hell alone! He doesn’t deserve this! He hasn’t done one thing to deserve this! He is an innocent child! This demon was slowly consuming my baby and I felt powerless. I couldn’t do a damn thing to help him. What a dark feeling. I felt like the Devil himself had come to dwell in our household. This sinister being that held my son hostage had made me realize that this was indeed a dire situation. I started remembering the scriptures “Jesus I know, and Paul I know; but who are you?” Acts 19:15 I felt just like one of the Seven Sons of Sceva, because this beast didn’t know me, but it sure was very acquainted with my son and this demon wasn’t going anywhere. I remember the words that Jesus had spoken in Matthew 17:21 “However, this kind goes not out but by prayer and fasting.” I had prayed, I had fasted I had done everything that I could possibly think of doing, but this one wasn’t going a damn place. It sure wasn’t going back to the hell that it came from, but it did bring hell with it and it was unleashing every dark power it could unto my son and all we could do is watch helplessly! “My God, My God, why have you forsaken me?” I cried those very words. It stung my heart. The feeling of helplessness and hopelessness had taken control of me and my wife. We weren’t just walking through the valley of the shadow of death we were neck deep in the mire of it!

We went back to the neurologist who now prescribed another medication that was supposed to be great for seizures. It was called Keppra and it isn’t a good drug either. Some of the side effects are horrible and Dylan was becoming more and more non-verbal so he didn’t have a voice to tell us how he was feeling, or what this poison was doing to him. Just some of the side effects were: Hallucinations, unusual thoughts or behavior, suicidal thoughts, bruising, severe tingling, numbness, pain, muscle weakness; feeling very weak or tired, fever, chills, body aches, flu symptoms, sores in your mouth and throat, problems with walking or movement

Imagine your child taking a medication approved by the FDA that can cause hallucinations or suicidal thoughts and your child cannot tell you how he’s feeling? Over the first several weeks on this poison Dylan began to bruise more easily every time we turned around Dylan had a new bruise on another part of his body. This certainly wasn’t the worst of it though. Dylan became weak and very lethargic. He would simply lay on the couch and didn’t do anything. He didn’t even enjoy watching any of his cartoons anymore. The little boy who was once so happy and lively had become a shell of his former self. I cried often. As a man society seems to believe that if you cry then it is a sign of weakness. I didn’t give a damn about what society thought about me. My son who once was filled with such joy and love was now this empty being that was now impassive and cold. His beautiful voice was now gone and would never return. The singing had stopped, the laughter had stopped the joy ceased to exist. We were left with memories of a different Dylan. A Dylan that used to run and play and joke and sing and talk and laugh. These demons had robbed his very soul. Between the poisons we were pumping into his body and the seizures which still had control over him, my little boy was gone! Terri and I went through the 5 phases of grief all over again; only this time it seemed much worse.

This had an effect on the entire family. The kids stopped playing with Dylan, because, he wasn’t interested in playing or really doing anything. He would just lay around. At school he regressed and no longer did anything that he used to. The teachers let him sleep most of the time, because the seizure activity was so bad that he would seize sometimes up to fifty times a day and that was with the two medications that he was on. We now had gotten him a wheel chair, because he could no longer walk. Just a few short years ago, Dylan ran in the Special Olympics. This child couldn’t even crawl, let alone walk!

This was indeed one of the darkest times in our lives. The journey we were on had driven us across an arid desolate wilderness. There were no oasis in site and we were getting ready to climb the highest mountain facing the toughest terrain that we would have to encounter yet. If there were a light at the end of this tunnel we had not spotted it yet. We were left forsaken and alone, but we had to continue to trudge on.

The Real Superman Part VIII

By Jeff King

The Real Superman Part VIII

Throughout the years, Dylan continued to struggle. He could walk and run. He could talk, but as I mentioned before his language was rote and he would just use words that he had heard. I believe that he did know some of them though.

Dylan ran in the Special Olympics when he was six years old. We bought him a bike for Christmas and he would get on it out in the front of our house and using his feet he could ride it around. It had training wheels on it, and he never actually learned to ride it, but, that didn’t matter to him; he loved it and had fun just sitting on it and using his feet to move it.

Dylan used to go with my wife up to my older children’s elementary school every morning. There was this little girl, who absolutely adored Dylan and she would go out of her way every morning to seek him out, so that she could give him a kiss on the cheek. My wife said Dylan began to look forward to the little girl coming over to him to give him a kiss. Terri said that he would smile. That blew out my argument that Dylan would not have a first kiss, because, he had many.

Dylan also liked to get in the front seat of our minivan and sit up at the steering wheel. He would laugh and say, “I’m driving, I’m driving.” He would turn the steering wheel back and forth, and he also would turn on the turn signals. These are days that I miss so much. Dylan was incredibly smart. He would come up to us and say, “Want to sing?” Whenever it would rain, if we were walking to the minivan he would always inform us, “It’s raining, it’s rrraining!” One winter we had a big snow storm. It was Dylan’s first real snow and we were at my brother in laws house. I had Dylan outside playing in the snow, he cracked me up when he suddenly said, “Look at all this damn snow! It’s cool!” He did pick up some inappropriate language and at one of his IEP meetings his teacher informed us that he had dropped the F Bomb, but she added, he used it in an appropriate way. We struggled hard to get him to stop saying those words. Many of those words he had learned from his older siblings and probably neighborhood children too. This may sound pretty asinine, but, I would actually love to hear him drop the F Bomb again. At least then, I could hear his voice once more.

As I mentioned before, he could be quite a clown. He would do things to make us all laugh at him. This may actually sound inappropriate, but this was one other thing that would make us all laugh at Dylan. As I mentioned before, Dylan loved Dora the Explorer. He loved the character the map. If you’re not familiar with the map from Dora, it was wrapped up like a scroll and it would sing, “There’s a place you need to go. I can get you there you know, cause, I’m the Map, I’m the Map, I’m the Map I’m the Map.” Well Dylan would actually pull his penis out and sing this little tune. We assume that Dylan thought that his penis was the map, and he would start singing this tune whenever he pulled it out. We struggled to get him to stop, and we’re still struggling with that problem today. He doesn’t sing the song anymore though.

He also knew how to get our sympathy. One day I had him out front and he was running up and down the sidewalk, when suddenly he tripped and fell. He injured his right arm. We took him to a clinic where they examined him and told us that he probably bruised his arm. They wrapped it and told us to put ice on it and give him Tylenol for pain. We did this for about two weeks, because he continued to favor his arm. He would scream whenever one of us tried to lift it up over his head. He whimpered and acted like a wounded animal. We felt bad for him and took him to his pediatrician who re-examined it and said he didn’t see anything wrong with it. He set us up an appointment at a specialist. It took us about two weeks for his appointment and we continued to keep his arm wrapped in the meantime, but whenever one of us tried to lift up that arm, he would continue his little act. Finally the day of his appointment. The bone specialist looked at the x-rays that we already had and took some of his own. He examined Dylan’s arm and about thirty minutes later he called us back in the examining room to go over the x-rays and what his findings were. “I don’t see any nerve damage, any broken bones, or anything at all wrong with his arm.” He explained to us. Dylan had been playing us the whole time. Right after that appointment, Dylan’s arm seemed to be miraculously healed. This little boy was quite an actor. We never had any more trouble with him or his arm afterwards.

Dylan was never potty-trained. We tried forever to get him to go on the toilet, but he just wouldn’t do it. They started to try to teach him at school also. We bought him pull-ups and would take him every half an hour, but, he just wouldn’t do it. We did this for about a year and finally we were having some success. He would come up to us and back his backside up to us and say “Let me check.” He did this because we would always say let me check when we wanted to check his diaper. He would tell the teachers at school, “Pew you stink, whenever he soiled his diaper.” They would tell him, “No, Dylan you stink,” and laugh about it.

We began to be able get him to go on the toilet once in a while. We were happy, because this was a start and we believed that we would finally be successful. Dylan was almost seven years old. He still drank out of a baby bottle and still wore diapers. It was getting expensive. We finally were able to get Medicaid to cover his diapers, but here we were on the verge of a great big breakthrough. We were convinced that he would be potty trained soon, and we wouldn’t need diapers or pull ups any longer. It had been a long journey, but, there was a light at the end of the tunnel.

Then on April 18th 2010, on my wife’s birthday. It was a Sunday. I told Terri that she could sleep in and that I would take care of Dylan. Dylan and I were watching one of his other favorite programs Diego. He was very excited because two of the characters on the program; two monkeys known as the Bo Bo brothers were on there and they were causing some havoc. Dylan was yelling, “Stop Bo Bo’s” which is what Diego and his pet jaguar was saying. The phone began to ring and I got up to answer it. Dylan was standing in front of the TV enjoying his cartoon. It was my mom. We started talking. I decided to go back in the living room to sit down. That’s when I found him. Dylan was face down on the floor moaning he was in the middle of a full blown grand mal seizure! It seemed as if all the blood drained from my body! I screamed, “OH MY GOD!!!!” I heard my mom yelling on the phone, “What’s wrong?” I threw the phone across the room and begin to yell for my wife! “TERRI WAKE UP DYLAN IS HAVING A SEIZURE!” He seized for what seemed an eternity. Terri came running down the stairs. “OH GOD CALL 911!” I ran and picked up the phone from across the floor my mom was still on there I quickly told her what was going on and she began to cry and hung up. I immediately called 911 and told them that my son was having a seizure! “PLEASE HURRY!” I shouted. The 911 operator was asking me a slew of questions that I sure as hell wasn’t worrying about answering right now. I wanted to just scoop Dylan up off the floor and hold him in my arms. The seizure had finally subsided and we awaited the paramedics……. (To be continued.)

The Real Superman Part IV

By Jeff King

Dylan began to learn how to talk, although most of his language was rote language, at least we knew he had a voice. Dylan still had a lot of difficulties. Around three years old he no longer qualified for the infant and toddler program, but thanks to Child Find he was enrolled in a special school, where he began to learn. His occupational and physical therapy continued through the school and they added speech services as well. It really helped Dylan significantly. He had a few behavior issues that used to be a concern to us. Dylan would bite himself and had self-injurious behaviors. The school also was concerned with these behaviors. Since Dylan qualified for Social Security and Medicaid we were able to get him several appointments at the Kennedy Krieger institute with a behavior specialist. The behavior specialist was able to successfully help us alter Dylan’s self-injurious behavior. We used a picture board and we helped the specialist design it. He had asked us what were Dylan’s favorite things and we told him that he absolutely loved SpongeBob Square Pants and these two toys that he had to carry with him everywhere. It was a cube that was made of some cloth-like material that had different animals on it, one side had a lion, one side had a bluefish, another side had a polar bear, another had a parrot hiding under a green leaf and another had the crescent moon on it. It had several rhymes on it and me, Terri, and my other two children still remember one of the rhymes to this day, “Yellow lion in the African sun, tickling your mane is really fun!” Leap Frog Melody Block. He also loves strawberry milk. The behavior specialist took this information and designed a token board which we used with Dylan to communicate with. He visited the specialist for six months and it actually worked, his self-injurious behaviors had ceased.

Dylan made leaps and bounds in school and at home. Over the next several years he learned his Alphabet, learned how to recognize his name, he was using picture boards to express his needs, or what he wanted. He could even say sentences like, “Want some Tea, want some milk, I’m hungry.” He learned some not so good words as well, but one of Dylan’s favorite things to do was sing. He loved to sing and he loved you to sing to him. He learned the words of Jesus Loves Me, On Top of Old Smokey, On Top of Spaghetti, It came Upon a Midnight Clear, Old Rattler, Old Dan Tucker, Rudolph the Red Nosed Reindeer, Frosty the Snowman, and tons of others, He even learned the entire lyrics to a Buck Cherry song “Sorry” He had to hear this song whenever he got into the car.

Dylan started watching other cartoons as well. He loved Nickelodeon and his two favorite shows were Dora the Explorer and Diego. He picked up Spanish and could say so many Spanish words that we were amazed how smart he had become! Dylan also had a great sense of humor and would often make us all laugh. As we would sit at the table to eat dinner, Dylan would get up and walk around everyone and like some sort of Duck Duck Goose game he would touch everyone’s back or arm, and then when he had chosen who he wanted, would smack them in the back. I know it sounds like bad behavior, but, I would give anything to have him do that again. Dylan also liked to play with his siblings. He would actually play hide and seek with them and these crazy games that they made up, one was called amudify Don’t ask me this was a word that Dylan came up with my other son and my daughter would both sit on the floor and he would try to jump over each of them and yell “Amudafy!” He also liked a game that was called “plonsky”, also a word that he created. In this game he wanted one of his siblings to pick him up and toss him on his back onto the couch, bed, etc. He and his older brother made up a game called “Smack Smack” in this game he would smack my older son, but it wasn’t hard it was just like a tap on the head.

Dylan also used to like to get up at events that we attended, like my daughter’s 5th grade graduation from elementary school. He was sitting down quietly when suddenly he began to look around, he looked behind us and when he had spied the contestant he deemed worthy, he got up out of his chair and walked to the row of chairs behind us; there was this huge gentleman sitting there with his family and Dylan walked up to him and looked right in his face. I had to act quickly, because I wasn’t sure as to what he would do, but the gentleman just started laughing. I grabbed Dylan and told the man that I was sorry and he replied, “It’s cool man, he’s a cool little dude.” I thanked him and Dylan and I returned to our seats where my wife was waiting. We started laughing my wife said that Dylan was trying to intimidate the man. I busted out laughing. This little boy was too funny.

The reason that I’m including this in the blog is because I want to explain that Dylan lived pretty much a normal life. He loved to joke and kid around, he was smart, and he loved to go to the park. He loved to play with his siblings. This little boy has so much going for him. (To be continued)