Limb Girdle Muscular Dystrophy (LGMD) Awareness Day

         September 30th, is LGMD (Limb Girdle Muscular Dystrophy) Awareness Day. Before LGMD was mentioned to me by my doctor who tested and gave me my diagnosis of it, I had never heard of it. To me, MD is something that only affects boys, since the majority of MD patients are those with Duchenne's which only affects boys, and is usually diagnosed in infants or toddlers who are not able to walk at all. I have learned that there are several forms of MD. When people discover that I have MD it is something that they have heard about, but when they hear the story about how I got my diagnosis, it surprises them. When we learned about LGMD, and my family read all of the symptoms, it was like reading my whole life, as I have had all of them. Despite having textbook LGMD symptoms, my diagnosis was missed for 24 years, and lack of awareness is a big reason why.

            Unlike other forms of MD like Becker's and Duchenne's that only affect boys, LGMD affects both girls and boys equally. Most doctors when they think of MD, they automatically think of boys with Duchenne's, and if they do think about girls with MD it is girls who are very floppy as baby's. Although today doctors are more aware of LGMD and are referring patients, including girls, to get evaluated and tested for it, this has only been happening in the last few years. When I was younger LGMD was something nobody knew of or they knew very little about it, including doctors, and although that is still somewhat true, it is a lot better than when I was younger.
       
          Due to lack of awareness about LGMD my diagnosis was delayed for many many years, and the result of that was a lot of challenges. I received chemotherapy treatment and very powerful drugs because I was misdiagnosed as a rheumatological patient. I was given intense PT that could have caused more harm to me. I had challenges at school and after school activities because of my inability to do keep up physically, and I was even asked to leave various activities because of my challenges, and couldn't go to certain places like theme parks. Today I can go more places since I have an electric-powered  wheelchair. If there had been more awareness when I was younger I would have been able to receive a diagnosis much sooner. As a result I wouldn't have taken powerful drugs I never needed, wouldn't have done intense PT, and would have received services and not done certain things. I would have gotten a wheelchair sooner so I could go to more places where lots of walking was involved. With more awareness about LGMD children and even adults with LGMD can get an accurate diagnosis, and with that be able to get all the tools and resources that are needed to live a happy and productive life with LGMD.

But all of this has meaning because I know God has a plan for me. I absolutely waste no time on negative energy.

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. 

The What If’s?

When you find out that you are living with a disorder that you have been living with and had symptoms of all your life and you didm't know it, you begin to ask the question of what if? What if we had known that I had MD when I was a baby, what if I  hadn’t had all the infusions and powerful medications I did? What if this, what if that? All of these what ifs start to enter your mind, and if you let it it will drive you absolutely crazy. In one way everything has changed since I got the diagnosis of MD, but in other ways nothing has changed. Throughout this first year of being diagnosed, it it seems as though the what ifs are constantly creeping in to my thought process, and I have to stop myself. Although thinking about the what ifs and life especially after receiving a life-changing diagnosis like MD is normal, there becomes a point where it becomes negative and all consuming. I get asked by friends at times, what if I knew I had MD sooner, how would my life be different? When these questions get asked, I try to not to go into a heavy discussion about it, because if I do the thoughts start being all consuming. Focusing on the past does not do anything for today or for the future, and thinking about the what ifs is focusing on the past. In all reality, what does focusing on the what ifs accomplish? Does it allow me to grow, or stay positive? No it doesn't. I am sure that as the first year of being diagnosed with MD passes the what ifs will come to mind less and less and when they do come to mind or am asked a what if question I will not focus on it. It is important for everyone to remember that thinking and focusing on the what ifs in life will not allow us to go forward but will cause us to go backward. Going forward is going into the positive and going backward is going into the negative, and the positive is where we should all be, especially when your living with something like MD where the positives are hard to find. All you need to remember is what a precious God-given privilege life is. Just to be here and experience what I have experienced is a gift. Other rewards await me and as my life unfolds I will experience what they are.

Are Special Needs Parks Only For Those With Physical Special Needs?

So I haven't blogged in a while as things have been a bit crazy, so I am glad to get back to it. Living with a physical disability, I belong to groups, read blogs, and am actively involved in the disability community. In the disability world, there is the physical disability community, and the mental/cognitive disability community. Since the challenges of each are different they are separated into these two groups. There are times that the two mix together, and that is when it comes to inclusion. When you have a disability, whether physical or cognitive, finding things you can do and going to places can be challenging, because places may not be easily accessible, especially for kids.

Today, many areas have special needs parks for children who have a disability whether they are in a wheelchair or not, so they can have an opportunity to go to the park/playground like non-disabled children do. When I was younger, special needs parks were not around like they are today, and I can tell you I wish they had been. Parks and playscapes were a challenge for me because climbing, running, swinging were harder for me. I loved going on slides but climbing them was hard, and after a while I got tired and couldn't really enjoy it anymore, and our trips to them began to lessen. One of these new playgrounds would have been a great thing for me and others like me. With these special needs parks emerging those in the disability community, both those with physical and those with cognitive/mental disabilities, have been happy because it seemed there is finally a place where all of those with special needs can go and can feel welcome and not judged. 

Recently, a story that has gone viral in the disability community and featured in news outlets raises the question of whether those with cognitive disabilities be allowed at a special needs park. The question arose when a mother of a son with severe non-verbal autism allowed an incident to happen at a special needs park. The boy run's, darts, and is known to roll around on the floor and push other kids and throw things at them. He was on the playscape at this particular park and while rolling around kicked a little girl causing her to fall down a slide, though apparently not badly hurting her. The autistic boy then laughed and started running around enjoying himself. 

The girl's parents were very upset, and spoke to his mother who explained that her child had severe non-verbal autism, and that he didn't understand that was not appropriate and that is how he plays. The girl's parents felt that he shouldn't be at that park because he was pushing, running, rolling and kicking, clearly with the potential of hurting other kids. 

The boy's mother later posted a blog and video about the incident expressing sorrow that her boy kicked the little girl and apologized profusely to her family, but said she didn't know what to do because her boy didn't know it was wrong and that the way he behaves is caused by his autism. This is why they go to special needs parks and thought that those at the park would be understanding. Her post caused a lot of waves throughout the disability/special needs community. 

After hearing about this story and seeing the mother's blog about it, I went to my grandparents and mother, who have both been around those with physical disabilities and as well as those with cognitive disabilities, and asked what they thought of the situation. Given the fact I have a physical disability, I asked them what would they have done if a child with a severe cognitive disability had done that to me when I was younger. 

Their response was similar to others whom I had talked to about this question. Although we are so sorry that this woman's child has this severe cognitive disability and has these behaviors that can't be controlled right now as part of his disability, it doesn't mean he can go around pushing others and using the disability as an excuse.

 I understand that those with disabilities, both physical and cognitive, have a hard time finding places that are accessible and have things that they can do, so they are excited when they find such a place. The challenge is that the needs of those with physical disabilities and those with cognitive disabilities such as autism are so different since some of them can be physical with their behaviors that putting the two together can be a challenge. 

While the autistic boy deserves to go to the special needs park because of his disability, children like myself and others also deserve the right to be there without worrying that a child who can't control behaviors will harm us. The girl that was kicked may have not been hurt, but what if it was another child who could have broken a bone or received a concussion? I understand that this woman cannot take her autistic child to a lot of places because of his aggressive behavior, but she thought that a special needs park was a safe place to go. However, your child, even though he has a disability that limits his ability to know what he is doing is wrong, should not be around others, especially those who have physical problems, who can be seriously hurt by what would be something minor for most people. Special needs parks are for those with special needs, but incidents like these really bring out the question: should special needs parks admit only those who won't do harm to others, even though the behaviors that cause harm is due to their special needs and something they can't control?

Note that this is a burning issue in the autism community today. What do you think?

Parental Guilt And Questioning Oneself

Since I have gotten my diagnosis of MD, all the challenges and difficulties I have faced all my life, are now explained by this diagnosis. The puzzle pieces have been put together. With that being said there has been a lot of reflection, especially among my family. One of the things that they have said to  me since the diagnosis is that looking back now, they feel that they should have noticed the signs more, and feel as though they may have let me down. I constantly tell them that is not true, but being parents I can understand why they feel that way. Parents and grandparents, feel they have the responsibility to notice signs when their child is struggling and having difficulties, and when they don't it brings up a lot of feelings in emotionsu. My family had no way of knowing that my walking difficulties, challenges with various activities were the signs of this devastating condition known as MD. They start to feel like and ask themselves, by doing this or that did we make the problem worse, would I not have all the difficulties I do right now. The answer is no, but as parents and grandparents their job is to protect me and keep me safe and healthy. And when your child or grandchild is living with a disability and has faced challenges since they were very young, and continues to face them, its hard not to feel as though you did or didn't do something. My family did everything they could to find out why I experienced the challenges I faced, they were and are today on top of it. Its natural to feel guilt or question oneself when a family member or a loved one is going through a difficult situation, moreso if you are a parent or grandparent. As time goes bye those thoughts and feelings that they have will come and go. When a parent or family members starts to think that way, its important to remember that it is a natural feeling to have. I know that my family feels this way at times because they love and care about me so much. I know that they did everything they could, and I tell them that and reassure them. By letting them know that I don't blame them in any way, helps to ease those feelings of guilt and allows them to not question themselves. 

My Strength Is My Shield

In my previous post, I talked about strength, physical, mental, and spiritual, and how having mental and spiritual strength allows people to handle situations that arise much easier than if one doesn't have it. Not only does mental and spiritual strength help one deal with situations, but it also serves as a shield. When I was growing up, before I knew I had MD, I was normal in many ways, but I was also different in other ways. I was the kid that got picked last for teams, the one that walked a bit weirdly, the one that would rather sit and read a book or color instead of playing on the playscape, the one that would trip and fall and known as "clumsy one." As a result, it made activities and certain situations difficult for me especially because of the comments that kids and even adults were made. I remember when kids, especially boys, would tell me to get my butt out of their face when I would get up on the floor. They would ask me why I broke so many bones, why I walked a bit differently than they did, why couldn't I run like they did and as fast as they could, they would call me lazy, and teachers would yell at me to run faster. I was asked to leave various activities such as gymnastics, karate, dance, and had to stop other activities because of my clumsiness. Things like this could really make a person feel like they aren't good enough or strong enough or even make them feel rejected, but for me it was what helped me to become strong, and toughen up. These experiences helped me to develop the shield of strength I have today. I could of let it upset me and make me feel as though I wasn't good enough, but instead God used those experiences and made them into a shield, just like Captain America's. Not only do I have my shield of strength, but I also have God and my faith as a shield. I am reminded that God is my shield in in Psalm 28:7 "The Lord is my strength and My shield." Having a progressive disorder like Muscular Dystrophy is very challenging, and its easy to let it get you down and feel as though you don't have the strength to deal with it. Even though I didn't know that I had MD when I was younger, God helped me to use those experiences to create my shield of strength, so that I wouldn't let difficult experiences, like dealing with my progression, get me down. When we find ourselves going through challenges, or dealing with rejection and negativity, we have two choices, we can let it get us down or we can let it strengthen us. If we let it strengthen us, we can then use that strength as a shield to deal with whatever comes our way.