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 VII

The Real Superman Part VII

As a parent with a child who has special needs it is sometimes a very difficult journey. When you find out for the first time there is a process that you go through. As psychologist like to call the 5 phases of grief. At first, there is denial. You just don’t want to believe it. I liken it to losing a loved one. You just can’t believe that your child has something wrong with them. All the hopes and dreams that you had for them seem to vanish. I know that I kept playing every scenario over in my head. He wouldn’t play any sports, I could envision him playing football, or baseball, but then suddenly the reality came crashing in. Dylan would not be able to play any of those sports. As a family, we all are very sarcastic and have very dry senses of humor, but that shared sarcastic humor would be lost on him. What was also hard for me to come to grips with was Dylan and I probably wouldn’t share in those coveted father and son talks or those father and son moments that every father looks to share in with their son; those rite of passage moments wouldn’t come for us. It saddened me to think about those things. I also thought about the fact that he would never experience his first kiss, marriage, or children, or any of those things parents look forward to from their children. I was left with a feeling of despair and actually felt alone, like no one could know the depth of my despair. What a cold hard lonely feeling.

It didn’t take long before the feeling of denial and isolation turned to bitterness and anger. This was the time that I would blame my wife, myself and my God! Those were the times when anger and frustration crept in and darkened my thoughts. I asked myself, “what in the hell did I do for Dylan to turn out this way, had pissed God off, did I commit such a dark sin that this was my retribution for it?” “Maybe this was my wife’s fault, maybe something was wrong with her?” Those thoughts were soon replaced by blaming God. “It was all his fault!” I told myself. “God has caused this!” “What father would impose this sentence on one of his own children?” I continued to ask. I was angry at God and I was going to let him know just how angry I was! I felt like Job, I wanted to question him; hell I wanted him to come down in the flesh so that I could personally confront him. I would fight him man to man. I issued that very challenge to him.

The tears of sorrow that I cried, were soon followed by tears of anger and frustration. I was bitter! I was mad as hell at the world, at myself and at God and wanted everyone to know it.

I soon started trying to bargain with God, “God if you would please help my son to be able to walk and talk and understand. I will do anything.” I also thought that maybe if we only knew sooner that something was wrong with Dylan, maybe there would have been something that we could have done, or tried? I was definitely trying to bargain with God.

Then slowly depression came creeping in and I don’t know what my wife felt, but I truly felt like the weight of the world had been cast upon my shoulders. The dark abyss of despair heavily surrounded my soul and my very heart felt as if it was going to break. I began to feel sorry for myself, “How am I going to raise this child?” I stammered. “I am not worthy of this task. It will be incredibly too hard for me. I started feeling sorry for Dylan. “He is going to have such a hard life, other people will make fun of him. What are we going to do?” All these feeling of doubts begin to invade my mind and cloud my thinking. I would lie awake at night and ponder all of these questions.

Then finally a peace came over me when I saw Dylan doing his daily struggling trying to sit up, or to crawl, or to grasp a toy, or to stand. Watching him fall continuously, but never giving up. Always getting up and trying it again. He would fall, then up again. I thought, “My God I probably would have given up by now?” He didn’t. He wouldn’t. It wasn’t in him to. I was witnessing firsthand what a true fighter; a champion was made of. In a moment of selfish reflection I saw all the struggles in life that I had went through thus far, growing up in a poor neighborhood. Raised by a single mother who had to take on menial jobs to try to supplement the welfare and food stamps we received. The struggles I had to endure in the projects of Baltimore. I didn’t have a father around to teach me or to share in those father and son moments. I had to struggle to get up out of the poverty. I couldn’t quit. Failure was not an option. I had forgotten that. Dylan taught me that lesson that day. He showed me what it was like to be a warrior! I was humbled. God had used my little man to teach me such a powerful life lesson and I felt humbled that Almighty God would chose Terri and I to be the parents of this Real Life Super Hero! I had finally accepted the fact that we were chosen for such a special task. That was the day I stopped feeling sorry for myself and for Dylan and saw things for what they really were. (To be continued)

The Real Superman Part VI

By Jeff King

The Real Superman Part VI

Dylan was a pretty amazing little boy. He was learning so much and could do so much, but we were learning from him as well. We learned patience, which is something I Sorely lacked. I finally understood what the meaning of unconditional love. How Dylan was and is the very meaning of that term.  We were watching the brain slowly developing right before our very eyes through this slow process that was going on in Dylan. I was already a compassionate person for people with disabilities. I believed myself to be the defender of the defenseless and I can still remember until this day when I was fourteen years old and me and two of my friends were walking up the street. About fifty yards ahead of us was a man probably in his early twenties. He was intellectually challenged, or what they called at the time mentally retarded. Such an ugly hateful word. This young man was walking along going about his business, not harming anyone when three older teenage boys begin to tease him. I heard them calling him hurtful names, like Retard, Freak, Mistake from God, Gimp, Idiot, and such ugly evil words. They were yelling this at this man. I was behind them while it was going on. The more they teased and laughed at him, the angrier I became. I started screaming, “Leave him the hell alone!” They just laughed and continued to harass this poor man, but what one of them did next, was the final thing I could handle. They had hemmed the poor man up against a sticker bush and one of the punks pushed him into them. I became enraged! I felt my adrenaline pumping inside me, I heard my heart beating in my ears and in a blind rage I ran up to the older teenagers and begin to push them into the sticker bushes! I started punching them and kicking them. There were three of them and they were bigger and older than me, but I didn’t care. My only concern was for the gentleman that they had been bullying and teasing. I let go of every ounce of my anger and let all three of them have it. By the time my two friends had caught up to us I had successfully beaten every one of those assholes up. We all helped the young man up who was now crying and visibly shaken! I asked him his name and he told me that everyone called him Happy Jack. Later on I found out that Jack was indeed his first name. As I got into my house later that evening, I started to cry myself. How could anyone be so cruel to such a sweet innocent being. The world we were living in was very sick and twisted.

I added this story because, when I look at Dylan, I can see the hate that people will have towards him. I can imagine the pain that he will have to endure at the hands of evil people like these teens were. After Dylan was born and it was determined that he was indeed intellectually challenged, that incident came back to me fresh as it had just happened. My question was would Dylan have a defender if he was ever in that situation? Who would be his voice? Who would be his fist if need be? I long realized that this world is full of cruel people that would harm him. It saddens me.

I made a vow that for as long as I live and as for long that there is a beat in my heart and a breath in my lungs that I would always be Dylan’s defender. I would not be alone, because my wife feels the same way and his two siblings have also stated the same thing.

This has also been a journey for my other two children as well. Growing up with a special needs brother hasn’t been easy on them. Throughout the years they have cut ties with friends who made fun of Dylan, my daughter also is like me when it comes to people with special needs; she is a defender of the defenseless. She has stood against hatred and teasing of other children by other children that she went to school with. It hasn’t been easy on them, but, they have learned to be champions for others and I am proud of them!

This journey that was chosen for us has been an incredible one. It wasn’t a road that we chose for ourselves, but if we had the chance to do it all over, I believe in my heart that Terri and I would choose to have Dylan again. I am a firm believer that God doesn’t make mistakes and although the universe has dealt us this hand, I believe when it is all said and done, we will come out holding Aces! (To Be Continued)

The Real Superman Part V

By Jeff King

As I said before, Dylan loved to go to the park, he loved to swing on the swings and slide down the sliding board. He was a cheerful child with a sweet disposition. He wouldn’t harm anyone, because he really didn’t interact with other children, even though occasionly another child would come up to him and ask him if he wanted to play? He didn’t even acknowledge the other child. This happened several times. It was actually heartbreaking to us. Dylan also has a high threshold for pain. One time we were at a park and he was on the sliding board. He was at the part of the slide where there’s a base that leads to several slides and a pole that children use to slide down. Dylan just decided to walk toward the pole he didn’t grab for it, but just walked right off the edge of the base and fell about six foot to the ground. He immediately got back up like nothing happened. Terri went over to check him out; he had several cuts and bruises, but he was fine. He didn’t cry or show any signs of being in pain whatsoever.

Dylan also liked to go to the mall. The mall we go to has a glass elevator and Dylan loves to watch this elevator go up and down. He would probably sit there and watch that elevator going up and down all day if we would let him. This mall also has an inside play area that all my children liked to play in when they were very young; Dylan was no exception. He has since  outgrown it, however, he loved to go in that play area and sit on the little Humpty Dumpty slide that was in there. One day in particular I took my family to the mall. My wife and daughter wanted to shop, so I told them that I would take Dylan into the play area. Dylan ran around and was having fun. A few children tried to play with him, but when he didn’t respond to them, or even acknowledge that they existed they went on to find another child to play with. Dylan ran to the little plastic Humpty Dumpty slide and began to slide down it. It was pretty busy that day and there must have been about 30 children in that little area. The parents were sitting on the foam rubber benches that surrounded the play area watching their kids play and have fun. Some of the parents had real young children so they were accompanying them in the play area. Dylan was in his own little world, as was normal for him. He was sliding down the slide and climbing back on it. Occasionally he would sit at the top and not slide, so I would have to get up and make him slide down so he didn’t impede any other child’s turn. This slide was actually a bridge though and you could slide down either side. This didn’t seem to bother the kids and most of them just went around Dylan and slid down the other side. Dylan didn’t mind nor did he ever bother any of the other children. On this particular busy day in this play area, Dylan was sitting on one side of the slide. I had been watching him as I always did. I never took my eyes off him, because, he would quickly get up and run out of the play area if you didn’t watch him. On this day as Dylan was doing what Dylan did a hundred times before, he was sitting on this slide not bothering anyone, when this woman ran over to him and begin to scream at him. “I don’t know where your parent are, but if you touch my child again you’re going to be in trouble!” I jumped off the bench and ran over to her and begin to yell at her, “What the hell is your problem woman, don’t you ever yell at my child again!” Then she yelled at me, “Well I don’t know where you’ve been, but your son has been pushing my son off the slide!” I then proceeded to call her a liar, because I had been watching Dylan the whole time and not once did he put his hands on this lady’s child, nor even acknowledged the child, or the lady yelling at him in fact!” I was livid then I said to her. “Woman, you have mental issues, my son is Autistic and doesn’t have any idea what you were just yelling at him! He never touched your child or even acknowledged your child being there!” Every parent in that play area was watching this transpire. She went red faced and started apologizing, “I’m so sorry, I didn’t know!” she stammered. It was at that time my wife and daughter came running over. “What the hell is going on?” Terri asked and I informed her of what transpired.  I hadn’t known it at the time, but Terri  had watched everything from outside the play area. She went and yelled at the woman, and it was at this time when the rest of the parents were saying nasty things to her as well. She was sobbing and quickly opened her cellphone to call perhaps her husband or someone. She knew that she had made a mistake and she probably felt like the biggest heel in the world. This would be the start of many ignorant and sometimes very asinine people saying foolish and hurtful things to Dylan and us. (To be continued.)

The Real Superman Part IV

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)

The Real Superman Part III

By Jeff King

The Real Superman Part III

Dylan was getting along very well, and for the first two years he continued to make strides. He could crawl and walk around the furniture. He could hold his bottle and there was nothing wrong with his appetite. He couldn’t feed himself, but he would eat anything that you would feed him. Dylan liked to hear you sing and he liked to watch TV; his favorite was SpongeBob Square pants. We used to take him out in the front yard where he would pull himself up by the fence and walk around the yard. We wondered if he would ever be able to walk, or if this would be the extent of his walking? We quickly came to terms with the fact that, he wouldn’t be able to walk on his own.

Throughout the next year, Dylan continued to improve, but he still could not walk on his own yet. I had one prayer that I continued to pray, “Dear God, all I want for Christmas is to see my boy walk!” Terri, was in agreement with me. We were invited to my brother-in-laws wedding and reception in September of 2005. I am an ordained minister, so my brother in law wanted me to say a few words at his wedding. I felt kind of awkward, because they had another minister doing the ceremony and I didn’t want to impose myself on her, but I agreed to do it anyway. Afterwards they had a nice reception and we were all there enjoying ourselves. Dylan was sitting on my wife’s lap eating and after he had his fill he scooted down off her lap onto the floor and began walking around the table holding on to the chairs as he went along, just then something miraculous happened; Dylan let go of the chair and began to run! I sat there tears welling up in my eyes! I could not believe it Dylan wasn’t walking, he was running! I looked at my wife and tears of joy was streaming down her face! I quickly got to my feet and started chasing him around. Everyone in the room was amazed. This was nothing short of the power of Almighty God! All the anger and bitterness that I felt, seemed to melt away right then and there! It was replaced with such an indescribable feeling of hope and joy! Our prayer had been answered, Dylan would indeed walk this Christmas! The boy wore me out that evening, but I didn’t once complain or tell him to sit down! That Christmas we were eyewitnesses to the power of God!