freak – thetruesuperman

The Real Superman Part XX

By Jeff King

It has been awhile since I have written. I was bogged down working at summer school and studying my last two college classes of the last semester. I just recently finished both. There has been a few things that have taken place since I last wrote The Real Superman. Dylan was scheduled to have the battery in his VNS changed today, which is 8/5/2015. It never happened, because, the surgeon’s secretary would call every few days to move the surgery further. It was originally scheduled for 7:00 AM, but she called us yesterday after calling us two previous time to reschedule and make it later. Now they wanted to schedule it for 2:00 PM, which is actually insane, because, Dylan wouldn’t have been able to eat anything after 12:00 AM this morning. That means he would have to go about 18 hours before he would be able to eat anything. I guess when you’re second class people these surgeons can reschedule you anytime they feel like it. Dylan being possibly two years old mentally, would be very angry if he was unable to eat for that long, and besides, it isn’t good for his health to go for that long. I am considering on launching a complaint against this surgeon, because, it is ridiculous to expect a child that is like Dylan to go that long without anything to eat.

I truly have a problem with the way people treat children with special needs. Don’t get me wrong, it isn’t everyone that does it, but when you’re a parent of a child that has special needs, you notice all the stares and whispers. You notice how some people treat you differently. Just as I was explaining. If we were people that had top of the line health insurance and not Medicaid for Dylan, but perhaps, Blue Cross and Blue Shield; or if we were paying cash, I can bet money that this doctor wouldn’t have continued to put Dylan’s surgery off! It just peeves me! Goddamnit, we are not second class citizens. We matter too! These children matter! We ended up canceling it and rescheduling it for next Thursday. The Secretary told us that if we didn’t reschedule it for next week then we would have to wait until October before we could reschedule it, because the surgeon was going on vacation. Must be real nice? Anyhow, I guess we should be use to this sort of thing by now, since these are the things we have had to deal with since Dylan has been little.

I have written before about how people would say things, for example the woman at the mall who accused Dylan of pushing her kid off the Humpty Dumpty Sliding board. Then there was the woman who blocked the wheelchair access aisle so we couldn’t get Dylan out of the store in his wheelchair. The woman that said that I wasn’t even man enough to make a normal child. Then we went to the MVA to aquire a special parking permit in front of my house, so we can have parking right out in front. We have fought people over this issue. On occasion we have some assclown that decides to park there, but unbeknown to them it is a 500.00 fine to park there. I have actually had words with several neighbors because they parked there. I had one neighbor across from me had someone visiting from Florida parked there. We pull up it is pouring down raining and someone is parked in our spot. I didn’t know who it was. I layed on my horn, hoping someone would come out to investigate and perhaps know who the vehicle belonged to, but to no avail, so I called the police and the officer comes to write a ticket for the vehicle. The lady across the street from me pulls up and ask me what was the problem, I told her that someone parked in my spot. She then says to me, “Do you want me to go get him and make him move?” I replied that I had already called the police. The officer hadn’t arrived as of yet, but she then replies, “Well that is unneccesary!” I did’t know she knew this person, but she began to cuss me out like it was my fault that this ass hat parked in my spot! My daughter began to yell at her, and began to threaten her. That is when the clown that had parked in my spot finally came out of her house and walked across the street. He asked me what was the problem and I explained that I have a permit for the parking space and that it is a 500.00 fine to park there. He said he didn’t even see the two great big signs that read “PERMIT PARKING ONLY”, which also has a number that is affixed to my driver’s side windshield. I replied, “Can you read?” Which he took offense with me. That is when the police officer pulled up. I explained to the officer what transpired. I told the officer if he moves I am not worried about if he gives him a ticket. I just want my parking space so I could get Dylan out of the car and into the house. This is the kind of issues we have had to deal with. One time some Jack hole had parked there and I called the police. The officer that came actually asked me what I expected him to do about it. I informed him that they usually write a ticket for the violators. He told me that he wasn’t comfortable doing that and to park somewhere else. I promptly took his name and badge number and told him that I was calling for another officer. He was a real smart ass. He said, “Go right ahead, they will just send me back and I am not writing a ticket, I don’t have to.” Which really pissed me off. The woman who parked there came walking down the street and the officer asked if the car was hers and she said yes. He said, well you can’t park here. She said “Oh I am sorry, I didn’t know that?” She got in and drove off. Then the officer says to me, “all taken care of” Like he did something. I quickly replied, “Yes, but no thanks to you.” I will be in touch with your supervisor.” I called his supervisor the next day and was assured that I wouldn’t have another issue with an officer writing a ticket, because that is his job.

These are the things we have to deal with. I also explained the stares people give to Dylan. Like he is some kind of freak. He yells out, because he cannot speak. We expect children to stare, but then we have grown ass people rudely stare. We hear them whisper and occasionally laugh. One time, me, Dylan, Terri and my mom was in Wal-Mart and I was walking ahead of them. Terri was pushing Dylan in his chair and Dylan began to scream, it is an impulsive sensory thing that he does. Most people pay no mind to him, because most people no better, but as they’re walking along, Dylan is screaming. I was up ahead, because I was checking on something. Dylan let out an ear piercing squeal there was a lady directly in front of me she looked up and said, “Geese, shut that kid up!” I said, “Excuse me?” and she laughed, “I said, shut that kid up!” I was angry and I yelled at the woman, “What in the hell is wrong with you lady? That’s my child you’re talking about and he is Autistic!” She turned horribly red, “Oh I am so sorry, I didn’t know? I work with kids like him.” She replied. “I sure hope the hell not!” I said furiously “Because I sure feel sorry for them! You intensive asshole!” I added. By then Terri had overheard what was going on and she immediately reamed the woman out as well. Suddenly my 65 year old mother came careening down the aisle with a cart, “What did that bitch say about my grandson!” she yelled. I immediately calmed her down we got what we came to get and quickly left the store without further incident.

These are the things that saddens me. I often wonder is how Dylan will be treated when we’re no longer around and sometimes I feel hopeless; however, there remains a glimmer of hope. We were out at a mall yesterday and me and Dylan sat on a bench waiting for Terri to finish in Torrid. This little boy escaped from his mother and came running over to wear we were sitting. I was on the bench, but Dylan was in his wheelchair. The little boy bean to rub Dylan’s hand and say hi. His mom came over and said, “Did you tell the little boy hi?” they both smiled at us the young woman said hi to me and asked me how I was doing? I told her good thanks. She smiled and walked away. It is these type of things that gives me hope. We have people hating one another because of race issues. We have people hating people because of religion and politics. It seems as if the world is seriously going to hell and we are all on a one way dead end road towards doomsday, but there is yet hope. The little boy that came up to Dylan was probably about three-years old and an African American. He didn’t notice Dylan’s skin color, or his disability, he noticed that Dylan was a kid, just like him. That is truly love and that’s the kind of love that produces hope. (To be continued.)

The Real Superman Part XVI

By Jeff King

For a while Dylan did improve. He wasn’t having a lot of seizures and whenever he had them they were quick and he recovered pretty quickly, as if nothing even happened. We were able to successfully get him to where his helmet, but it was a hell of a fight to get him to do it. Every time we would put it on him, he would rip it off and throw it across the room. Most of the time he would smile about it. He knew what he was doing. In the end our perseverance won out and Dylan still wears a helmet today, but, man the struggle was real!

One early September day in 2014; right before school; Terri had just given Dylan a bath when a very freak accident occurred. Terri had a whole collection of brass and ceramic unicorns that she had collected since she was a child. Terri had just finished bathing him and put his helmet on. She was preparing to get him dressed. He had been running around the room like a Wildman, which by the way was normal for him when all of a sudden it happened. Dylan had an absence seizure and fell backwards hitting the shelf that housed all of Terri’s fine collectable unicorns. She called for me I was downstairs getting ready for work and I hear her scream my name, so I go flying up the stairs like a bat out of hell. There was blood everywhere. We lifted Dylan up off the floor and sure enough he was bleeding, but we weren’t sure from where. I quickly removed his helmet to examine him. That’s when we noticed that he had a small puncture wound in the back of his head, “But how?” we asked ourselves. He had his helmet on. Terri looked over at the shelf to examine the damage when she noticed a particular ceramic unicorn which was intact all except for the fact it was missing its horn. I picked up Dylan’s helmet off of the floor to reexamine it. It was then that I found the unicorns horn, it was wedged in a small hole that was created when Dylan fell on it. We cleaned him up and the mess and he stayed home from school that day.

Dylan has always found a way of destroying things; sometimes they were accident, while other times he would purposely destroy things. Here is a list of things that he has destroyed: Our semi new flat screen HD TV that we only had for a year. We had just finished paying the credit card off that we used to purchase it with. Dylan had an absence seizure and fell head first into it. We had to borrow a small TV from my sister-in-law until we were able to buy a new one. He has broken 4 sets of lamps, by just pushing them off the end tables. It takes him several times of knocking them off, but eventually he is successful. We always try to correct him, but he just doesn’t seem to understand. He has torn up several sets of living room and dining room furniture as well. He just ripped the fabric off one of our sets of living room furniture. We bought nice leather furniture and he was good with it. He never once tried to tear that set up, but over the years from wear and tear it eventually wore out, so we waited until tax time 2014 and bought this furniture with cash. It cost us about 1300 dollars. It wasn’t made very well and for some reason Dylan decided that he wanted to tear it up. It was fake leather and Dylan had it destroyed in less than 4 months. We just bought another leather set on credit and he seems just fine with it. We purchased a dining room set a few years ago. The table was very nicely made and we still have it today, but we have went through three sets of chairs. Dylan would go out in the dining room and knock the chairs over. He reminds me of the Tasmanian Devil from the Warner Brothers cartoons. He has destroyed pictures, which some he has stood on the furniture and ripped them off the walls. He ripped Terri’s dream catchers up. We caught him several times with the feathers still in his mouth. Like a cat that just ate the canary found with the evidence still in his mouth. It sounds funny, but at the time that he is doing these things, we don’t find it very funny. We have tried to stop him several times, but he is like a tornado going through a room, or a bull in a china shop. No matter how many times we stop him and sit him down and tell him no, he will wait until an opportunity arises and he will go tear things up.

He has torn up our plants several times. Just recently he was playing in his toy box and I was watching TV when he came out into the living room and his face and hands were covered in dirt. He had been into Terri’s plants. I had to clean him up as well as the mess he left for me. He came in and looked at me to show me how proud he was of himself. He has ripped up my other children’s homework, my college papers. My niece gave him the name the Ripper, because when we were visiting them one day he had gotten into her room and ripped up one of her books. She came running into the living room crying “Dylan is tearing my book up! He is the ripper!”

Whenever we have told people about this they usually tell us things like, “Buy a gate to keep him out of places.” We actually have done that we have several gates put in place; one at the bottom of the stairs so Dylan cannot go up the stairs for fear that he will have a seizure and fall down them and the other blocks him from the kitchen, so he can’t get into the kitchen to pull the stove over on himself; which he has actually done several times before we got the gate. The gate guarding the kitchen has been compromised several times. Dylan has fell on it shattering it twice, both times Terri has had to glue it back together, because the gate was specially ordered on line and we can’t find any like it at any of the stores. (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)