Having a child with special needs can be very challenging. Many times we speak of ignorance and anger about other peoples reactions. It took me many years to truly understand the definition of ignorance and how to deal with it. I am not perfect but I try to ensure that I take every opportunity I have to properly and kindly offer knowledge to others. I used to always think of how hurtful it was to my child and now I often try to consider how the person would feel knowing the full situation.
What many people including myself don't realize is that people usually don't have a clue what your issues are. Yes, they could mind their own business but everyone has a need to help others and sometimes it just doesn't come across as helpful. Sometimes people react to situations that they don't understand because they feel they need to help, without understanding the logistics or facts behind it. This is what happened last week to my son and I.
Last Thursday Charlie had to have an Ambulatory EEG and after he was hooked up we went skating! He was having a blast! After skating for about 40 min the guy on the floor skated up to me and asked what the machine was. I proceeded to tell him and also expressed that he has abscent seizures not grand mal, that would be dangerous. He skated away and I thought that everything was fine. About 5 min later I noticed the strobe lights had turned off and I had to bring Charlie to the bathroom. While I was in the bathroom with him two girls came into the bathroom to "check on" charlie for the skate rink guy. This baffled me and I told them he was fine. They remained watching him in the bathroom and followed us out. When we exited, there was two police officers walking towards the restroom and asking to talk to me. They informed me that the rink had called for a well child check cause they were concerned about Charlie's safety. When I explained the situation, they told me I didn't need to leave and that we were fine. I decided we were going to leave and I must admit I was very angry. They did refund me upon request, but I felt discriminated against and violated. They took a happy moment with my son and destroyed it. Why had the manager not approached me if they were concerned? Why did the rink guy not express concern?
I wanted to go online and write horrific reviews of their rink describing the incident and labeling it as disability discrimination. I wanted to post on facebook telling everyone about how we were treated. But.... I didn't. I talked to a few close friends, dealt with the rest of my time in Albany and then on Sunday I called the owner. I left a message, half expecting him not to return my call. On Monday he called back and as I started to discuss the issue he remembered it. He stated that he was told that I was trying to trigger a seizure and was never told that he did not had grand mal. Being he only knew about the severe, scary seizures, he reacted on what he thought was happening. He apologized several times and stated that he should have inquired further to know more facts. I educated him on different types of seizures and also gave him a few thoughts on a proper protocol. I informed him that the manager had never approached me and he thought he had. All of my questions were answered and it seemed to be a huge misunderstanding.
In retrospect, I am glad that I searched for a box to think outside of. I am glad that I allowed myself to react with my brain instead of my emotions and I hope you will consider this too. I was able to educate the owner of the rink about seizures, EEG's and the feelings of a special needs child. The roller rink sent us a $50. gift card despite me telling them it was not necessary so Charlie can go and have the experience he should have gotten before. I encourage you all to do the same. Instead of assuming that the person is being mean, pursue the issue as if they don't know all the facts and was not trying to harm you.
What many people including myself don't realize is that people usually don't have a clue what your issues are. Yes, they could mind their own business but everyone has a need to help others and sometimes it just doesn't come across as helpful. Sometimes people react to situations that they don't understand because they feel they need to help, without understanding the logistics or facts behind it. This is what happened last week to my son and I.
Last Thursday Charlie had to have an Ambulatory EEG and after he was hooked up we went skating! He was having a blast! After skating for about 40 min the guy on the floor skated up to me and asked what the machine was. I proceeded to tell him and also expressed that he has abscent seizures not grand mal, that would be dangerous. He skated away and I thought that everything was fine. About 5 min later I noticed the strobe lights had turned off and I had to bring Charlie to the bathroom. While I was in the bathroom with him two girls came into the bathroom to "check on" charlie for the skate rink guy. This baffled me and I told them he was fine. They remained watching him in the bathroom and followed us out. When we exited, there was two police officers walking towards the restroom and asking to talk to me. They informed me that the rink had called for a well child check cause they were concerned about Charlie's safety. When I explained the situation, they told me I didn't need to leave and that we were fine. I decided we were going to leave and I must admit I was very angry. They did refund me upon request, but I felt discriminated against and violated. They took a happy moment with my son and destroyed it. Why had the manager not approached me if they were concerned? Why did the rink guy not express concern?
I wanted to go online and write horrific reviews of their rink describing the incident and labeling it as disability discrimination. I wanted to post on facebook telling everyone about how we were treated. But.... I didn't. I talked to a few close friends, dealt with the rest of my time in Albany and then on Sunday I called the owner. I left a message, half expecting him not to return my call. On Monday he called back and as I started to discuss the issue he remembered it. He stated that he was told that I was trying to trigger a seizure and was never told that he did not had grand mal. Being he only knew about the severe, scary seizures, he reacted on what he thought was happening. He apologized several times and stated that he should have inquired further to know more facts. I educated him on different types of seizures and also gave him a few thoughts on a proper protocol. I informed him that the manager had never approached me and he thought he had. All of my questions were answered and it seemed to be a huge misunderstanding.
In retrospect, I am glad that I searched for a box to think outside of. I am glad that I allowed myself to react with my brain instead of my emotions and I hope you will consider this too. I was able to educate the owner of the rink about seizures, EEG's and the feelings of a special needs child. The roller rink sent us a $50. gift card despite me telling them it was not necessary so Charlie can go and have the experience he should have gotten before. I encourage you all to do the same. Instead of assuming that the person is being mean, pursue the issue as if they don't know all the facts and was not trying to harm you.
