We got him a cake and some ice cream. He ate few bites of the cake but wasn’t that interested in the icecream or cake. He did try to grab the cake and a little bit icing got on his fingers and in his hair. We got him a couple tee shirts and shorts! His brother got him a couple pair of pull on pants and a Superman tee shirt and a few other things which haven’t came yet. We did sing happy Birthday to him. His memaw called earlier and sang happy birthday to him also he enjoyed that and so did his niece Delilah.
He finally got his go talk 4 the other day. Now we can work on getting him to Express himself. He didn’t want his picture taken as you can tell. At least he is smiling in the one picture. I am so happy he is finally feeling better as well.
This is a blanket his big brother Dacota made for Superman! He did an awesome job on it! It even looks like him. Superman is starting to feel a little bit better! Thanks for all the prayers and positive thoughts!
Superman had fun at the pumpkin patch! He helped pick out a pumpkin to carve. The only thing that wasn’t fun was all the bees everywhere. They had lots of fun stuff to do. Hayrides, a little haunted house, music. They also had a store you could buy fresh vegetables and pies. The pumpkin patch we went to was Webster”s farm.
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 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!
Good afternoon everyone. My name is Jeff King and I have a son who was born with a rare chromosome disorder. I call it 3X15C. There is no real name for it. He is only one of about a hundred known cases worldwide. This is a triplication of Chromosome 15. For anyone who knows chromosome 15 duplications are common in children with autism. My son has a triplication of that chromosome, therefore, he has autism and was actually diagnosed as severely intellectually challenged. At the age of seven-years-old he began to have intractable epilepsy. He is now 12 and although he is on medication and has been fitted with the Vagus nerve stimulator, he continues to have severe seizures. My wife and I have just recently started a blog dedicated to him. It is about his journey and ours as well. We have titled it “The Real Superman.” because we truly believe he is not only super, but our hero! We are looking for parents, family members, friends of people with special needs and also Sped. Ed. Teachers and people who work with our children. It is our hope that the story that I am telling will not only encourage others, but also offer inspiration and hope. Please come check it out and join our blog page and feel free to leave a comment or two. We are also looking for people to join us at Parents of Children with Disabilities. We only have 3 members and would love more. That is at https://plus.google.com/u/0/communities/107339921749944736766