Tag: special needs

Friends

With the all the news about the autistic boy not having friends. I know that feeling all too well for my son Dylan. He doesn’t have friends and probably doesn’t even know what that means. The only friends he really needs is his family. He has that with his older brother and sister. I can absolutely say they both love him with all their hearts. He attends a special school with other children like him or worse off than him. I know some of the children that attend his school know what friendship is, but for most of the children, they can’t understand that concept. That doesn’t mean they don’t need friends too. I know his teachers love him also. The definition of friend is –a person whom one knows and with whom one has a bond of mutual affection, typically exclusive of sexual or family relations. With that being said, I’m not looking for anybody to feel sorry him, because I know he is one of the happiest people I know most of the time. He can have his bad days just like anybody can.

 

20160927_150933

The Real Superman Part XX Follow up!

Snapchat--6645249355440387791Snapchat--81380479847194916

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 XX

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.)

IMG_9491Snapchat-7187430480249789027Snapchat-8319462153212821135IMG_8439

The Real Superman Part XIX

The Real Superman Part XIX

By Jeffrey King

Dylan is 12 years old and as I have explained in previous blog posts he still wears diapers. We were putting out a lot of money on diapers, wipes, etc. We were actually thrilled when we discovered that Medicare would pay for his diaper supplies. It has saved us thousands of dollars over the years. Without that help there is no way we could afford to keep him in diapers. Before he began to have seizures Terri and I and his teachers at school all were trying to potty- train him. We were having some positive results, until he begin to have the seizures, which have robbed him of so much cognitive abilities. He has regressed so much that everything that he once learned or knew has long since disappeared.

I know that there are plenty of special needs parents out there who experience the same things that we have to experience on a daily basis. It never fails when we’re out and about, Dylan has to go in his diaper. We have a small Hyundai Sonata and there are many times that we have to find a parking lot to change him. I usually pull into the back of a parking lot away from any parked cars. I pop the trunk, which I leave it opened to actually block the back window. I grab Dylan’s Superman Backpack and take out a diaper, some wipes, a plastic bag and some hand sanitizer. If it has been hot out, the wipes are usually hot, so, I usually keep a bottle of water up front with me to cool down the wipes, and of course in the winter the wipes are cold and quite often frozen, therefore, as you can imagine, not a pleasant feeling. Regardless this is a necessary evil that has to be taken care of, because we don’t like to let Dylan sit in a dirty Diaper. One afternoon while we were out Dylan done his business and I pulled into a Wal-Mart parking lot. I drove to the back lot by some trailers. I popped the trunk retrieved the materials that I needed to change him. As I was changing him, suddenly a car pulled up; of course it was a police car. The officer got out and approached our car. Terri rolled down the window to greet the officer. He immediately asked her if everything was okay. She explained that I was changing my son and explained to him our situation. He was very kind and told us to have a nice day. I knew one day that this would probably happen. We have had other people ride up on us. I guess they are trying to be nosey. It is a shame that even though most malls and department stores have family restrooms where you can change your child; the changing tables are only for infants and small toddlers. Companies really don’t take into consideration families that have special needs children, or family members that they need to care for; that includes toiletry needs. It is my hope that one day this will change and companies will begin to take into consideration these people.

Two years ago we took the family to a theme park. I will not disclose the name of that park, but I will say one of its roller coasters has the name of this titled post. We had Dylan in his Wheelchair/ stroller and we were going to the rides. I have to say I was impressed how they accommodated Dylan and all special needs individuals when it comes to their amusement rides. They allow people with disabilities and handicaps to get on the rides first and let them come through the exits, so as they do not have to wait in line with the crowds. We were having such a good time and we decided to visit their water park. I took Dylan in the bathroom to change him, but was shocked to find out that they didn’t have any family restrooms with any changing tables. I had to take out a sheet that we keep folded in his diaper bag and had to lay it on the floor right by the sinks, because there wasn’t any room in the stalls to change him. Luckily there wasn’t anyone in the restroom at the time and one of the security guards came in. He kept everybody out until I had finished changing Dylan. What a great person he was and I thanked him several times.

After we finished at the water park, we decided to go to one of the shows that the put on in their outside theater. This particular show was a Wild West stunt show. We entered into the arena, which had posted on the outside on a sign “No Strollers allowed in the seating area” I didn’t think anything of it, because Dylan’s chair was actually a wheelchair. Anyway while we were headed to the handicap seating area a security worker came up to us and said, “I am sorry sir, but you cannot bring the stroller in here, it has to be left outside.” I was furious I immediately left and went to find the customer service building to complain about this policy. I got there and told them that this policy was wrong and that this chair is considered a wheelchair. The manager agreed with me and gave me a coupon book with free food coupons. He apologized and called the theater. They sent the security worker up who promptly apologized to me and took me and Dylan back to the show. They brought us up front and we watched the show and all the stunt actors came up after the show to personally greet Dylan and my two other children. They made good on a mistake and I was very pleased with their handling of this situation. I did an online survey about the incident. On the form they had a place where you could enter a comment. I entered this. “I was pleased how your organization handled this situation. I really have only one concern. I would wish that you would consider installing special needs bathrooms for people with special needs.” I added some other things, but that was the most important thing I felt needed addressing.

AS I said before I know there are plenty of families that know our experiences. There are also others that don’t have to consider what we have to actually deal with on a daily basis. It is my hope to bring awareness for parents and families that have children, or family members with special needs that have to deal with these type of issues. I know many companies have stepped up their game to accommodate us folks, and we surely appreciate it, but there is still work to do. We still have other issues that have to be addressed. You see on the daily news about people being brave and standing up for issues that they believe in.  We are hoping that people will stand up for people like Dylan and others like him. We have to be their voice, because many of them don’t have one. We have to be their advocates. Please stand up with us! Thanks! AS always, the Real Superman will continue! Until Next time!

The Real Superman Part XV

The Real Superman Part XV

By Jeff King

Dylan was doing so well. He no longer was laying around like a lump. He was back! He was all over the place. We had gotten his helmet and tried several times to make him wear it, but we were unsuccessful. Every time we placed it on his head he would rip it off and toss it. We got so tired of fighting with him, we just decided not to try to force him to wear it.

We went to the mall and Dylan would run right to the elevator to watch it go up and down. We were so happy, because the light had returned to his eyes and life had returned to his body once again. This was so amazing. We went everywhere. We even decided to take his chair out of the trunk, because he didn’t have a need for it anymore. I took him to another mall where he enjoyed riding on the little carrousel that was there. He rode it several times and then I took him off of it to walk down to meet Terri and the children where they were getting their hair cut. Dylan took off. He began to run. He ran just like he used to. I was so happy to see him running once again. My man was back and he had proved once again that he was indeed Superman, and those seizures, which are his kryptonite was not going to defeat him. I gave chase, because I still was unsure about him running. I kept thinking, “God please don’t let him have a seizure”, because the floor was concrete and then suddenly he dropped to the floor head first. He lay there in a heap, flailing around uncontrollably. I ran to retrieve him off of the floor and there were several mall kiosk employees who ran to help us. One gentleman grabbed a slew of paper towels and some ice to put on Dylan’s forehead, which he had slightly busted open, but fortunately it was not bad. He did have a goose egg protruding from his forehead, but he was fine. He never cried or screamed or anything. We continued to walk to meet my family, but by now I had firmly taken his hand and made sure he walked beside me.

He begin to have several of these seizures where he would just drop to the floor, ground, etc. They were the most frightening ones, because you never knew when they were going to happen. I had recently been hired as a permanent part time teacher’s assistant at the school I worked for. I started out a one on one temporary employee. I worked with two students who had autism and behavioral issues. I was told that I did so well with them that the school wanted to hire me permanent part time and as soon as a fulltime positon became available then it was mine.  School was scheduled to begin on August 26th 2013. The day before school was to begin. I was upstairs when Terri screamed for me to come downstairs. I ran downstairs. I was greeted by a scene that looked straight out of a crime scene. Blood was everywhere and Dylan was laying on the living room floor in a pool of blood convulsing violently. He had an absence seizure and had fallen and busted his head on the corner of the entertainment center. I had just recently taken a first aid and a CPR course in the summer. I grabbed Dylan up and told my daughter Destiny to grab me something that I could pack his wound with. She grabbed a bunch of paper towels and I reluctantly used them to pack his head to try to stop the bleeding. I told her to call 911 which she did. I examined the gash in his head and it was bad. It was as deep as it was wide. We waited for the paramedics to arrive and they took over. Dylan was sitting on the floor like nothing had even happened to him. He didn’t cry or give any indication that he was ever in any pain. The ambulance took him and my wife to the ER and I followed in the car while Destiny and my son Dacota cleaned up the mess.

I arrived at the hospital several minutes after the ambulance. Once inside the immediately took Dylan into a room where a nurse attended to his wound until a doctor could see him. The doctor came in and examined Dylan and determined that he would either need several stitches or staples. We actually opted for the staples because they would leave less scarring and thank God we had recently taken him to get his hair cut so it was easier for the doctor to clean him up and staple the wound closed. It was on the top of his head, which was another blessing so whenever he grew his hair back the scar would be almost unnoticeable. The doctor put 8 staples into Dylan’s head and once again he never cried or screamed out. His threshold for pain is very high. The only time he cried was whenever we were holding him down, but other than that this little guy is amazing. This is indeed the Real Superman and he was amazing. (To be continued!)