My Superman is always hungry you feed him his dinner and he will be hungry five minutes later. So, the kitty came to sit with him yesterday and I guess he thought the kitty was food. He tried to grab the kitty and eat him.
So, I went to put Dylan on the bus this morning and he decided to lean back before I had full control of him and ‘ I said dammit Dylan why did you do that.’ so I had to pick him up out of the chair to fix him again. Mind you he is about 5’5 and weighs about 125 pounds that is my height as well not my weight though. All the while the bus helper is standing up on the bus shaking her head the whole time in judgment of me doing and saying anything to my son. I’m getting tired of her rude attitude towards me and how I deal with my son. I told her this morning if she thinks she can do a better job of it she can have a go at it. I called to complain about her also. I’m so glad the school year is over with and I hope she is not his bus aide ever again. Just do the job you are hired to do and keep your judgments to yourself.
So Snap-chat had superman filter and Dylan had some fun with it. Now he is the real Superman!!!!!!!!!!!!
So snap-chat had a superman filter!
Dylan received a letter from Santa Saturday. Thanks so much Santa. I was a really good boy this year.
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 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/
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)