Every once in a while I find myself researching upcoming vacations. Okay that's a lie I research vacations all the time. The problem with this is every so often I click on a thread on a forum that's titled something like handicap accessible cruising or carnival's disability accessibility. It's always a mistake to click on these. It's usually like 2am and I find myself crying because wow people can be mean. So today I'm going to to write my little blog dedicated to those people.
EQUAL DOES NOT MEAN EXACTLY THE SAME. You see when I say i want my son to have the same ability to use the bathroom at school it means he needs things that a child w/o special needs doesn't need. So while it may seem like special treatment to put a bar next to the toilet its actually there so he can get up and down from the toilet. He can't do that w/o the bar so in order for him to use the bathroom like everyone else he has the bar. That is equal treatment not the same treatment but equal treatment.
I'm sick of reading the word "snowflake". yes this child is the most precious child ever because he's mine. I also think my girls are precious and my niece and nephew. I will keep insisting that the world accommodate my child. Are you saying in my shoes you wouldn't? Oh and I realize taking a cruise is not a necessity but I rarely look at Robbie and say you have muscular dystrophy you are only allowed the necessities in life. That's just stupid.
I don't expect the world to cater to my son. I understand that his life and by extension ours comes w/ limitations. Screw you if you think that I am not completely aware of this 24/7 365 days a year. I do expect the world to be kind and understanding. I expect when I say he can't walk to the bus stop that a bus will pick him up at our house. That his school will make accommodations for him. That his doctors and care staff actually know what duchenne is. Have you ever explained your child's disease to a doctor that had no clue what it was? I have. It's really hard to trust someone with your kids health when they have no clue about his disease.
I get the Internet makes it easy to say whatever we want and hide behind a screen name. That we can find an entire community of jerks to be jerky with if we want. Maybe when you get all fired up about the audacity of a boy with down syndrome wearing a letter mans jacket "he didn't earn." or a cruise line trying to be more accommodating to a people with disabilities, or people wanting their kids to experience Disney World easier because they don't have the stamina a healthy child would, maybe you could I don't know not comment.
My kid has muscular dystrophy. I sat in an office with a doctor who told me that there is no cure. I have held his foot down while he was forced into a leg cast twice a week for 2 months. i have held him when he cried and told me he hates muscular dystrophy. I have spent hours trying to convince him he doesn't have to be embarrassed to wear his braces to school. I deal every day w/ a person who's prolonged life depends on steroids.
All I'm saying is when you go out into the Internet world and write these awful things I see them. It hurts me, someday it will hurt my child. Is it really too much to ask you to just think about what my family is going through and just not type anything? I guess I'm a big believer in being quiet it you have nothing nice to say.
