Superman just stopping by to say Happy Easter to everyone. He has been doing pretty good lately. Thanks for the Easter card. I hope everyone has a wonderful Easter. Love you all.
Just a follow up! I said that we have had to deal with all sorts of people that has really made our journey that much more difficult. I closed the blog talking about a little boy that came up to greet Dylan and just shared his love and acceptance of Dylan, just the way he is. That little boys’ mom should be very proud of him. She is raising him to love and not hate, to accept people with differences! Bravo to her. I also want to share an amazing and humbling event that just took place about two hours ago. This helps to restore my faith in mankind even further. As Terri, Dylan, and I were leaving Wal-Mart, I was approached by a gentleman with two young daughters. I thought he wanted my cart, which I would have gladly given to him, but that’s not what he wanted. He says to me, “Hey, I want to let you know, I understand how difficult it is raising a child with special needs. I have a daughter who is special needs herself. I want to give you this.” He said handing me something from his hand. I actually wasn’t sure what he was giving me, but, then he said, “Please have dinner on me tonight.” I thanked him as he and his two beautiful little girls walked towards the entrance of the store. I stood there in amazement for several seconds, before I looked at the bill in my hand. I was both humbled and overwhelmed. In my hand was a brand new 100.00 dollar bill. I felt the tears well up in my eyes. I continued to stand there dumbfounded for several minutes. I slowly put the bill in my pocket and got in the car. Terri noticed right away that something was wrong, so she asked me. A few hot tears began to streak down my face. I was at a loss for words. I finally said, “Give me a minute. I regained my composure and fished the 100 dollar bill from my pocket and placed it in her hand. She looked at me shocked. “Where did that come from?” she asked. I told her what had just happened and the tears began to well up inside me once again. She said that she noticed the man looking at us as we were putting Dylan into the car. We snapped a picture of his truck! This is why I continue to hold out hope. It is these type of things that restores my faith. This man was truly an Angel in every sense of the word. He didn’t know me, or my situation, but he felt compelled to help us. That is the real meaning of tithing. That is what God truly expects from us. To reach out to others to give anonymously expecting nothing back in return. There is no doubt that this man will be blessed tenfold. For the stranger that gave of himself freely, I want to say thank you and may God bless you abundantly.
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 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)