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!

The Real Superman Parts I and II

The Real Superman Part I

By Jeffrey King

Why do we consider Dylan the real Superman you may ask? Well if you knew Dylan and children like Dylan, you would see that they really are super! Do they have the power to fly, or bend steel, or are they faster than a speeding bullet? No, but the everyday struggles that these precious children have to endure is nothing less than super. Many people look up to athletes, police officers, fire fighters, soldiers, etc. as heroes, and they definitely are; however, my biggest hero is Dylan and let me explain to you why. In 2003 my wife was pregnant with our third child; which was Dylan. This was a child that we were uncertain that she would be able to have, because in 2001 my wife nearly lost her life due to a medical surgery that went wrong. The doctor ended up cutting a bile duct while he was removing her gallbladder. She was hospitalized for over a month and I was left to care for my two small children who were 2 and 3 years old at the time. I lost my job, due to having to miss so much time caring for them. I won’t get into too much detail about that dark time in our lives.

Time warp to 2003. We found out that my wife was expecting, we were actually shocked, because the doctors said that they didn’t think she would ever be able to have another child. She had a very uneventful pregnancy with no complications. All of her pre-natal check-ups were fine and she did exactly whatever her gynecologist told her to do.

Dylan was born on March 25th 2003 at 5:49 AM. He weighed 8 pounds 9 ounces. He seemed healthy and my wife was fine. No complications. The next morning, he was a little jaundiced, therefore they put him under an ultra violet light overnight. We were discharged the next day, but were told to bring him back to check him out in 3 days, because of the jaundice. We took him back and were given a clean bill of health.

Almost right away we noticed that Dylan was different than our other two children. He had a difficult time sucking his bottle, he couldn’t seem to focus his eyes on anything. He wouldn’t follow my wife’s voice. He was very stiff and floppy. At three months old he couldn’t hold his head up, didn’t smile and couldn’t grasp objects. This was difficult on my wife, because, she felt that something was wrong, but family members just said that she held the baby too much and didn’t let him develop on his own.

We were very concerned that Dylan wasn’t meeting any of his milestones, so we took him to his pediatrician to voice our concerns. He was a little over three months old. She examined him and told us that he just may be developing slower than normal and told us to give him another few months and bring him back if there were no changes. She saw him again when he was six months old and he still was having a developmental delay. She then made us an appointment with a geneticist. It took us several months to get in to see the geneticist and he examined Dylan and did some blood work on him.

Several weeks later we received a call from Dylan’s pediatrician who told us that we needed to go and see the geneticist right away; he had the results of Dylan’s blood test. We called to make the follow up appointment with him and he saw us right away. He brought us into his office and he explained what was going on with Dylan, who was now nine months old. I will never forget the conversation. He told us that what Dylan had, he had never seen anything like it since he became a doctor. He went on to explain that Dylan had a triplication of one of his chromosomes, chromosome 15. He explained that this chromosome had made two copies of itself; the original, the second copy, which was inverted and a third copy of itself. He went on to explain that this was what was causing Dylan’s developmental delay and that there wasn’t anything that he could do to fix it. He told us that Dylan would probably need extensive services to try to get him to develop. He would need physical and occupational therapists as well as a speech therapist. We asked what should we expect and his reply was exactly this, “You can’t put Dylan in a box, I am not sure what he’ll be able or unable to do, but it is better to start these services early to benefit him as much as possible.” He also went on to tell us, “Since I have never seen this condition, I really don’t know what you can expect and if I were you two, I would go do your own research to see if you can find any other children with this rare condition.”

Terri and I were devastated! We felt like we did something to cause our boy to be like this. We saw a child in a wheelchair who was severely crippled and was twisted up like a pretzel. Excuse my description, but that is the only way I could describe him. Terri looked at him and began to bawl uncontrollably. I grabbed her and pulled her to me. I told her, that we didn’t know if Dylan would end up like this, but even if he did, we will be the best parents that he could ever have…… (Continued Later.)

The Real Superman Part II

We went home and together sat at our computer, we googled triplication of chromosome 15 at that time there wasn’t anything written about it, however, a few things did come up in our search one was duplication of chromosome 15, or Isodicentric chromosome 15 syndrome. We began to read about it. For more information you can read about Idic 15 at the following websites http://www.dup15q.org/understanding-dup15q/what-is-dup15q-syndrome/

http://ghr.nlm.nih.gov/condition/isodicentric-chromosome-15-syndrome

By reading this material we had a little better understanding of what Dylan was going to be like, but these were duplications of the chromosome and not a triplication. We read that 1 in 30,000 newborns are born with this. We read about the developmental delay that the children have, behavioral difficulties, mental retardation, autism, seizures and just so much more. It was truly overwhelming. We stumbled on an organization that was called Unique The Rare Chromosome Disorder Support Group. They were based in the United Kingdom. We wrote to them about what the geneticist told us about Dylan.

Several days later we received an email back from them and they informed us that they believed that Dylan had Idic 15. They signed us up with their organization and sent us a welcoming package that had names of other families who had children with rare chromosome abnormalities. There were families in the United Kingdom, and even many in the United States that had children who had Idic 15. We didn’t feel quite so alone anymore. We would identify Dylan’s disorder with Idic 15, however, he didn’t have a duplication, but a triplication of the 15th chromosome, so we still didn’t really know what to expect?

We contacted the Maryland Infant and Toddlers Program and was entered into Child Find. The sent out a team of assessors to see if Dylan qualified for this program. We shared with them all of Dylan’s health records. After the initial assessment it was determined that he qualified for help and right away they set up home visits from physical, and occupational therapist. These visits would go on once a week and they were not fun for Dylan and made us have to go outside on several occasions. The therapist would come in and ask us a slew of questions before they began to work on Dylan. This was done by twisting and pulling and contorting his little body in every way imaginable. He would scream and cry; it was heartbreaking for us as parents. They brought in a giant exercise ball and would place Dylan on it and roll him around on it. By doing this it helped to loosen up his tight muscles.

Dylan’s therapy went on for several excruciating months. He didn’t like whenever the therapists would show up, because he knew that they would make him work his body. We didn’t like to hear him crying in pain, but it was a necessary evil. I probably was the father from hell towards the therapist, because I would yell at them. They would always make me leave the room. I did start to notice that Dylan began to be able to do things that he was unable to do when before the two therapists showed up. He could now crawl, grasp items and then, he was able to sit up.

Dylan seen these two ladies twice a week for a year and the results were amazing. In the meantime, I had begun blaming everyone for the way Dylan was born. I never told her at the time, but I was sure it was my wife’s fault, perhaps it was the doctor’s fault, or even God? I then started blaming myself and beating myself up over it. It is hard to explain the darkness that some people go through when something like this happens. The tears that I cried and the anger and bitterness that was eating me drove me further away from my wife and my other two children.

I continued to angrily question God, “Why in the hell would you allow this to happen to this child? What kind of cruel God are you?” I’d scream through bitter tears. It was in one of those tear-filled rages that I looked at Dylan. He had now been able to pick himself up off the floor and navigate himself around the room using the furniture for balance. Then the words I heard echo inside of my ears and stabbed me right in my heart! “Stop feeling sorry for yourself! Look at your son, he is awesome! He is a champion. No matter how hard it has been on him he hasn’t given up. He has fallen down thousands of times, yet he still gets back up!” That day my 16 month old son taught me the most valuable lesson I have ever learned in my entire life and if I could share this with anyone this is very important. Never, ever give up! If you falter, or fail a thousand times, a million times; keep fighting the good fight! It was at that very moment in time my whole life changed! Dylan hadn’t given up on us and I would be damned if I would give up on him! (To be continued)

The Real Superman Part II

By Jeff King

The Real Superman Part II

We went home and together sat at our computer, we googled triplication of chromosome 15 at that time there wasn’t anything written about it, however, a few things did come up in our search one was duplication of chromosome 15, or Isodicentric chromosome 15 syndrome. We began to read about it. For more information you can read about Idic 15 at the following websites http://www.dup15q.org/understanding-dup15q/what-is-dup15q-syndrome/

http://ghr.nlm.nih.gov/condition/isodicentric-chromosome-15-syndrome

By reading this material we had a little better understanding of what Dylan was going to be like, but these were duplications of the chromosome and not a triplication. We read that 1 in 30,000 newborns are born with this. We read about the developmental delay that the children have, behavioral difficulties, mental retardation, autism, seizures and just so much more. It was truly overwhelming. We stumbled on an organization that was called Unique The Rare Chromosome Disorder Support Group. They were based in the United Kingdom. We wrote to them about what the geneticist told us about Dylan.

Several days later we received an email back from them and they informed us that they believed that Dylan had Idic 15. They signed us up with their organization and sent us a welcoming package that had names of other families who had children with rare chromosome abnormalities. There were families in the United Kingdom, and even many in the United States that had children who had Idic 15. We didn’t feel quite so alone anymore. We would identify Dylan’s disorder with Idic 15, however, he didn’t have a duplication, but a triplication of the 15th chromosome, so we still didn’t really know what to expect?

We contacted the Maryland Infant and Toddlers Program and was entered into Child Find. The sent out a team of assessors to see if Dylan qualified for this program. We shared with them all of Dylan’s health records. After the initial assessment it was determined that he qualified for help and right away they set up home visits from physical, and occupational therapist. These visits would go on once a week and they were not fun for Dylan and made us have to go outside on several occasions. The therapist would come in and ask us a slew of questions before they began to work on Dylan. This was done by twisting and pulling and contorting his little body in every way imaginable. He would scream and cry; it was heartbreaking for us as parents. They brought in a giant exercise ball and would place Dylan on it and roll him around on it. By doing this it helped to loosen up his tight muscles.

Dylan’s therapy went on for several excruciating months. He didn’t like whenever the therapists would show up, because he knew that they would make him work his body. We didn’t like to hear him crying in pain, but it was a necessary evil. I probably was the father from hell towards the therapist, because I would yell at them. They would always make me leave the room. I did start to notice that Dylan began to be able to do things that he was unable to do when before the two therapists showed up. He could now crawl, grasp items and then, he was able to sit up.

Dylan seen these two ladies twice a week for a year and the results were amazing. In the meantime, I had begun blaming everyone for the way Dylan was born. I never told her at the time, but I was sure it was my wife’s fault, perhaps it was the doctor’s fault, or even God? I then started blaming myself and beating myself up over it. It is hard to explain the darkness that some people go through when something like this happens. The tears that I cried and the anger and bitterness that was eating me drove me further away from my wife and my other two children.

I continued to angrily question God, “Why in the hell would you allow this to happen to this child? What kind of cruel God are you?” I’d scream through bitter tears. It was in one of those tear-filled rages that I looked at Dylan. He had now been able to pick himself up off the floor and navigate himself around the room using the furniture for balance. Then the words I heard echo inside of my ears and stabbed me right in my heart! “Stop feeling sorry for yourself! Look at your son, he is awesome! He is a champion. No matter how hard it has been on him he hasn’t given up. He has fallen down thousands of times, yet he still gets back up!” That day my 16 month old son taught me the most valuable lesson I have ever learned in my entire life and if I could share this with anyone this is very important. Never, ever give up! If you falter, or fail a thousand times, a million times; keep fighting the good fight! It was at that very moment in time my whole life changed! Dylan hadn’t given up on us and I would be damned if I would give up on him! (To be continued)