Dylan is feeling a little better today. He is still having seizures though. They are not as frequent as they were yesterday. Maybe they had something to do with the weather we are having today. I feel like the barometric pressure has some kind of an effect on his seizures. These past few days have been a little rough here with the car being out of commission and having to take Dylan to the hospital. We have been relying on friends and family for rides everywhere. We already had to cancel one of Dylan’s appointments. Our problem is not having the money to fix the vehicle.
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 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!