Word's I Have Had To Live With

             We all know that words can have a big impact, both positive and negative, and when you are living with a disability or illness this can be even more so. The other day I saw a video that a mother, who's young son has severe non-verbal autism, about things that people have said to her about her son, things that at the time are shocking or hard to hear, but that needed to be said, or word's of encouragement that came at just the right time. This got me thinking about some of the things people have said to me and my family and the impact that it has had. 

             When it comes to comments that people have said about my illness/disability, not knowing for many years why I had the challenges I did, I have had many different things said to me. When I was in school, the kids weren't the only ones who said things to me; teachers, and people who led my after school activities said things. Kids would ask me why did I walk a little differently, why I couldn't run and play the way the way did, why did I get off the floor differently. When kids ask or say things it can be hurtful, but I know they were asking out of curiosity. However, when an adult says something its much harder and in some ways makes it more real, not just for me and my family. We always knew that I did physical things a bit slower than the other kids and had a bit more difficulties in that area than my friends did, but we dealt with it. When I was in second grade, at the end of the year the teacher said that she believed I should be held back for another year because I wasn't able to keep up with the other kids physically on the playground, even though I was doing well academically.   When I participated in various after school activities such as karate, dance, and soccer, or ice skating the instructors told my grandparents that I couldn't come any more because I couldn't keep up, and that they were afraid I would hurt myself. Teacher's would yell at me to run faster at recess through a bullhorn, and treated me as though I was lazy and not trying hard enough. Being a bit slower physically resulted in teachers treating me as though I was slower mentally and, as a result, they didn't let me take gifted classes and I had to have a behavior chart.  Hearing comments like this was something that I ended up getting used to and in some way expected them to be said. 

            Then there were the comments doctors said to me or to my family members. These include things such as you're overreacting, she will outgrow these things,, its because she's tall, she is making things up, it's all in her head, and other things. Although, a few doctors, particularly the ones who knew me well, knew that was not true. I remember one day, my primary care doctor said something that was very prophetic: "When we find out what is wrong with you someday we are not going to like it." How prophetic those words were. When we finally got to the doctor that diagnosed my MD, there were things said that weren't necessarily surprising, but still hard to hear. During the first appointment, when we were asked all the questions about my history and things, the doctor asked; "What took you so long to get here?" Again, this wasn't something that necessarily a surprise, but hard to hear, especially for my family. When we were given the diagnosis we were told you should have a positive attitude, but not have false hope. As you can imagine, hearing all of these things was not easy, especially hearing the things that were true. Living with these words echoing in your brain can really get to you if you let it, both the words that are true and the words that are not true. I am not going to lie and say that I don't think about some of the things that were said to me, because I do. When we say something to someone we may not know of or think of the impact that it will have, and I know that some of the people that said these things to me, didn't realize that. Especially people in positions of authority or power, such as teachers, coaches, and doctors. Words are a powerful thing, and they can make or break us, and for me they have mentally made me stronger, even though my disorder is physically breaking me. My body may be broken but my spirit is not.

Normally Different I Went To School

It is that time of year again, back to school. You mark the days down on your calendar, see all the advertisements on back to school, go shopping for clothes and school supplies, hoping you get that teacher you like, and that your friends are in your class, and are preparing yourselves for getting up early and not being able to spend the day playing with your friends.  It's the time that means summer is coming to an end. Although I am no longer going to school, it reminds me of the time when I was in school, and since being diagnosed with Muscular Dystrophy it gets me thinking about the difficulties I experienced at school because of not knowing I had MD, and how would school have been different for me and in essence my family, if we had known that I had MD. 

Academically, I did well at school, I have always had a passion for learning new things. At school, and in other areas, I was normally different. I did well at school, had friends that I played with, and in that way I was normal kid like the others. But in other ways I was different, Unlike the other kids, I couldn't do many of the physical things that the other kids did, although I wanted to and tried very hard. I couldn't do the monkey bars, or gym class like the other kids, and couldn't run like the other kids could. Many of the kids at school asked me why I couldn't run like they did, and why did I walk a bit differently, I waddled a bit, why did I break so many bones? Although I know the answer why now, at the time I didn't know why. Kids didn't want me on their team in PE because I was not fast enough. And it wasn't just the kids that said things, it was the teachers. The teachers didn't think I was social at recess because I wasn't playing and doing the things the other kids did, although I tried.

By the end of third grade, my teachers started making my grandfather go on my school field trips because with all the walking we had to do, I had to take frequent rests so I was slowing everyone down. so they thought he should go with me so they didn't have to have another teacher with me. The schools didn't want me to have a rolling backpack, and wouldn't allow me to have one binder for all classes, as they make you carry a binder for each class, because carrying the backpack was difficult for me no matter how hard I tried. They would try to put me in remedial classes and wouldn't let me take Gifted & Talented classes, most likely because of having the physical difficulties I had. When I got into middle school, the teachers would get upset because i took a bit longer to class when it was from one ending to the other.  This made school difficult for me at times, especially because we had no idea that MD was why I was having these challenges. 

Although you can't change the past, I know that if we had known that I had MD when I was in school, it would have been so much easier. I wouldn't have been treated so harshly by teachers because I couldn't play at recess like the other kids and had needed to take rest breaks on field trips. An aid might have been given me to help carry my books and backpack, leg braces to help with the issues in my legs from the MD, PT and OT at school, modified or adapted PE, and a push chair to help on field trips. Although knowing I had MD, might have made me known as the girl who wore leg braces and needs a push chair on field trips where we have to walk a lot, school would have been a lot of easier.. For those who are normally different, and who have challenges either physically or mentally, school cab be a very challenging place, especially for those who don't have a diagnosis as to why they have the difficulties that they do. School should be a fun and enjoyable place, whether you are normal, different, or normally different like me.