I recently went back to high school to participate in a tribute concert for my choir teacher who is struggling with cancer. It was a privilege and an honor to have the opportunity to give her thanks. It was my first time being back in my old High School. I swore I would never go back. It took an event like her tribute concert to make me consider revisiting that place. My RSD began the month before the start of my junior year of High School. It took about four months before diagnosis. Those months were hard because while I was dealing with all this pain everyone believed that "technically" there was nothing wrong with me. I cannot even tell you how many adults thought I was faking the level of pain for attention. Choir was different. Everyone saw past my crutches and needing to leave class 5 minutes early, even my teacher.
I couldn't help having all those memories come flooding back while I walked down those old hallways. As I reconnected with people I sort of knew I was taken back by the fact that they did not remember me as "that" girl. Instead I was remembered as "that cute little girl who was always smiling, always happy." Some asked which year I graduated in and I found myself lying to them so they wouldn't question why I graduated a year after them. After all I was in all of their classes since middle school! I am embarrassed at how RSD made me need to take two senior years to graduate High School. I am proud of my accomplishment, I graduated without the help of most of my teachers. Still, if I told them when I graduated they would probably ask why and then I would have to explain my health. I didn't want to do that. I didn't want my RSD to interfere with what that night was really about. I was okay with the fact that they remembered my smile more than my pain. Especially when we were all gathered together for this special occasion. We were there to celebrate a teacher who stood out from all the rest and now she needed our help. That is something worth facing all those bad memories. For one night I didn't need to advocate for myself, raise awareness about RSD. For one day I could be a face in the crowd showing support for someone who made a difference in my life.
During my time at high school I had a lot of teachers and even my guidance counselor who worked against me. Yes, they actually worked against me. They didn't believe my diagnosis because they couldn't find it in a medical dictionary. My algebra teacher even confronted me one day saying "I tried to look up RSD in the medical dictionary but I couldn't find anything." My algebra teacher was one of those teachers who gave me a hard time about leaving class 5 minutes early. In fact when I had missed too much school because of my constant trips to Philadelphia's Temple University Hospital for my medical treatments a conference was called. I was in danger of flunking out of high school. I remember sitting at this big table with my Mom by my side and my guidance counselor advising me to "drop out of high school and get your GED when you get healthy." Tears welled up in my eyes but before I had a chance to respond a kind man from the Board of Education (I do not remember his name) said "Wait! She has another option!" Legally, I was considered a medically disabled student therefor I was entitled to some accommodations. This is when he explained that I could take my Senior year and split it up into two years. They would also give me a tutor that would pick up my school work, sit with me while I took tests and help me out. If I felt strong enough to attend school I would always be welcome, even if it was just for a day or two. I would be given a hall pass to leave each class 5 minutes early so that I wouldn't have to be afraid of someone walking into me, bumping me, and to walk as slow as I needed. I was given an elevator key to use so I wouldn't have to deal with the stairs. Of course, if I wanted to graduate I would still have to earn my diploma just like everyone else. I might have had help from the Board of Education but I did not have the support of my teachers, with the exception of two. My choir teacher and my Language Arts teacher from my second senior year. Not even my assigned tutor helped me. She was essentially a glorified delivery person and test administrator. I guess it is in how poorly I was treated by the majority that the seemingly simple extra help my choir teacher gave me makes her stand out in my memory.
Those first years living with my RSD were hard. I became depressed and withdrawn. It was hard to concentrate on anything but how miserable my life had become. I dwelled and fell even deeper into my depression. I was a teenager whose focus was daily survival. All my dreams for the future flew out the window. Instead of thinking about boys and what I wanted to be when I grew up or which college I wanted to attend my life, my reality, was centered around my visits to the hospital and a fight to stay out of a wheelchair. The battle felt hopeless and lonely.
Music was a source of hope for me. In a world that I could not control anything I learned that I could control my voice. My Choir Teacher was kind enough to send the sheet music home for me and she would record the music so I could practice at home. If she didn't send the music home I would not have been able to keep up with the class. I was in the mixed choir but I had also earned a seat in the honors choir class called State Liners Singers and I was a part of the Women's Ensemble. My voice earned me a position in those groups but I would not have been able to succeed if she did not go the extra mile for me. I don't know if she ever understood how this seemingly simple step she took for a student made a difference in my life. Music gave me hope. Especially the music choices she always made. Hope, that is what my choir teacher gave to me. A sense of belonging and a freedom to not be judged by my pain. Her song choices were always beautiful and spoke to me. Slowly, I was able to come out of my depression and put this hope to work at educating myself. I did not have the best GPA but I earned my high school diploma. On graduation day the seniors from the choir always sing at the ceremony. That song was my heart, it was my own victory dance.
I have so much respect for the great teachers of our time. In fact I have many teachers in my family and the boys Godfather is a teacher along with his wife and his brother. Teaching is a noble profession. They are human beings that are molding the lives of children. I have learned first hand that a teacher holds a sort of superpower, yet many teachers are not aware of this. They possess the power to make a difference in a childs life. Sadly, not all teachers feel the need to be that type of teacher. I had teachers who made my education harder but I also had these wonderful teachers who picked me up. They didn't befriend me or counsel me. They simply helped me learn despite the fact that I couldn't always be in their class. By stepping out of the box and accommodating my needs, by caring about the individual, they made a difference in my life.
I feel so fortunate that I had the chance to be a part of the tribute concert for my choir teacher. I know how big it is when someone gives you the smallest amount of their time when you are fighting an unbelievably hard battle. None of my teachers ever knew just how bad my condition was. Despite my crutches I was always the girl with a smile. It is amazing what a smile can hide. Pain, depression, isolation, fatigue, and a feeling that I didn't belong. High School was a horrible time of my life. My choir teacher provided a classroom that was a shining light in all that darkness. I was not surprised that so many of her old students came forward when they heard she was in need. We wanted to raise her spirits and raise some money to help her pay her medical expenses. Mostly, we all wanted a chance to tell her "Thank You" for making a difference in our lives. Honestly, I found the whole event awe inspiring! Imagine touching so many lives over decades of teaching and having those people come together to stand on a stage and sing for you. Phillipsburg is a small town and yet that night it felt like she had the love of the whole country singing for her. Many people couldn't be there but they sent their support. The response to her need was amazing. She is definitely a teacher worth her title.
Thank you Kathy Hartman!!!
Wednesday, February 26, 2014
Saturday, February 15, 2014
A long cold winter
Okay enough already! This RSDer is sick and tired of the cold. I have been in back to back flairs since the New Year, spending more days in pain than pain free. My pain free days are spent catching up on the piled up housework or simply spending quality time with my boys. During my flairs I try to do as much as possible but each day I fall short of my goals. Despite my pain I am a wife and a mother who must take care of her family.
It is annual IEP time! A knot is impregnated in my stomach. Last week we had the meeting for Gabriel's IEP. It went extraordinarily well. It was only this time last year that he was diagnosed with a Learning Disability. Last year was rough, to say the least. It was a time of family hardships with my surgeries, my Dad's surgeries, and then Gabriels grades took a nose dive. Not only did his grades take a nose dive but his emotional well being became a concern. He was not able to emotionally handle my health and he took that stress to school. I had always helped him with his school work but last year I physically couldn't do it. We signed him up for the homework club to give him that extra help time and if he really felt stuck I would try to help him out from my bedside. Suffice it to say last year was an extremely difficult year for Gabe and his IEP process did not go well. It was our first IEP and we really didn't know the right questions to ask or how important we were. This year, so different! This year we knew what our place was at the meeting and that if we weren't comfortable with something we could say so and not let it happen. The best part is that we were more effective in the collaboration of deciding what best helps HIM to succeed. Honestly, I think that is what will make this coming year even better, the focus is on HIM and what it takes to make him able to succeed at his personal best. Basically, he is at the top of High Average ability in cognition but in processing speeds he is at the very bottom of Low Average ability. What this means is that he is a really smart kid but it takes him longer than most of his class to "get there". When it takes that long for him to really understand the material it creates a level of self doubt and ultimately a feeling of being stupid. It is heartbreaking for a mother to hear her son say he is stupid. I have worked with him for years in building a confident child but when he is in school and looks around at the other kids who are working steadily, knowing what they are doing and he is unsure of himself, that is the moment where he feels stupid. This years IEP meeting was all about how we can change that for him. He is smart so he belongs in the general education classroom but with an inclass resource teacher to give him the extra help as he needs is TO HELP HIM SUCCEED! This years teachers have noticed his ability and are actively working with me to implement strategies that best fit his personal needs. In the end that is what a parent really wants. Teachers who see how wonderful their child is and want to bring out the best in them.
Coming soon will be Lucas' IEP. Our journey with Lucas has been tough. He is my special needs child. Next month he will be turning 4! We have been receiving services for him for the past 2 years. In my gut I knew he had a speech issue when he was 18 months old because he was not even able to babble. When I had Early Intervention come in to evaluate him I felt horrible because I could not brag about his accomplishments. At the end of the evaluation they asked me a question "Does he make any other sounds that he did not make while we were here?" I stared blankly at them because, well, besides screaming and crying and the occasional "Dada" he only coo'd. You know what I mean by coo'ing. The constant Oooo or AAaaa sounds. Lucas would point to things he wanted but I learned that his pointing was even delayed because he couldn't isolate one finger, Lucas pointed with his whole hand. I have learned so much from our early intervention specialists. Lucas had qualified for both Developmental Intervention and Speech Therapy. Those women changed my life! I thank God that they came into my life every day. They gave me the foundation on how I need to proceed with Lucas' life. Lucas has come a long way in the past two years. We have come from him only saying sounds and words while in therapy to learning to be able to use them in play. We have built a vocabulary and he is now at 5-6 word sentences! The hard part is that most of it is still unintelligible, I can understand him most of the time though so I act as translator within our family. What is fun is that Gabriel is finally beginning to understand his brother so sometimes when I am struggling to understand what Lucas is saying Gabe can step in and tell me what his brother wants. As difficult as it may seem we are actually enjoying Lucas' new ability to talk to us. I love having conversations with my little guy! We do need to explore some other area's that he is showing a developmental delay in. He is currently being evaluated by the school district and those reports will be reviewed during his Annual IEP. We are lucky that Lucas is in a great preschool program that has teachers whose specialties are in special education. Honestly, I have learned to take everything in stride when it comes to Lucas and his abilities. The more I learn about his Apraxia and other issues the better I get to know my own child. He is not such a mystery anymore. The hardest lesson I had to learn was to stop looking at the milestone charts because he was so far off that it was discouraging. Now, I just take each victory and each set back in stride with the knowledge that together we will get there. Lucas is not in this battle alone. I am with him each step of the way and I will be his strongest advocate always.
With all of this going on it is easy to loose sight of yourself and put your marriage last. That is why Valentines Day was so important. It was a chance for us to just be together. Last week I also had the opportunity to sing in a Tribute Concert for my old high school choir teacher. That was a spiritually rewarding experience, saying Thank You to a teacher who gave everything she had to her craft but now, while she is fighting for her life I can help renew her spirit to fight. I am thankful that I could be a small part of that event. On a daily basis I keep a focus on my health and on my childrens education. I do my best with my home but honestly this past few weeks have proven to be too hard for me to do much of anything. I cannot wait for Spring. The end of snow. The end of freezing cold. The beginning of flowers and sunshine! Then after Spring comes the wonderful healing warmth of Summer. It has been a long cold winter and I am sick of it. I am dreaming of the warmer days when I can spend more days pain free and doing the things I really love.
It is annual IEP time! A knot is impregnated in my stomach. Last week we had the meeting for Gabriel's IEP. It went extraordinarily well. It was only this time last year that he was diagnosed with a Learning Disability. Last year was rough, to say the least. It was a time of family hardships with my surgeries, my Dad's surgeries, and then Gabriels grades took a nose dive. Not only did his grades take a nose dive but his emotional well being became a concern. He was not able to emotionally handle my health and he took that stress to school. I had always helped him with his school work but last year I physically couldn't do it. We signed him up for the homework club to give him that extra help time and if he really felt stuck I would try to help him out from my bedside. Suffice it to say last year was an extremely difficult year for Gabe and his IEP process did not go well. It was our first IEP and we really didn't know the right questions to ask or how important we were. This year, so different! This year we knew what our place was at the meeting and that if we weren't comfortable with something we could say so and not let it happen. The best part is that we were more effective in the collaboration of deciding what best helps HIM to succeed. Honestly, I think that is what will make this coming year even better, the focus is on HIM and what it takes to make him able to succeed at his personal best. Basically, he is at the top of High Average ability in cognition but in processing speeds he is at the very bottom of Low Average ability. What this means is that he is a really smart kid but it takes him longer than most of his class to "get there". When it takes that long for him to really understand the material it creates a level of self doubt and ultimately a feeling of being stupid. It is heartbreaking for a mother to hear her son say he is stupid. I have worked with him for years in building a confident child but when he is in school and looks around at the other kids who are working steadily, knowing what they are doing and he is unsure of himself, that is the moment where he feels stupid. This years IEP meeting was all about how we can change that for him. He is smart so he belongs in the general education classroom but with an inclass resource teacher to give him the extra help as he needs is TO HELP HIM SUCCEED! This years teachers have noticed his ability and are actively working with me to implement strategies that best fit his personal needs. In the end that is what a parent really wants. Teachers who see how wonderful their child is and want to bring out the best in them.
Coming soon will be Lucas' IEP. Our journey with Lucas has been tough. He is my special needs child. Next month he will be turning 4! We have been receiving services for him for the past 2 years. In my gut I knew he had a speech issue when he was 18 months old because he was not even able to babble. When I had Early Intervention come in to evaluate him I felt horrible because I could not brag about his accomplishments. At the end of the evaluation they asked me a question "Does he make any other sounds that he did not make while we were here?" I stared blankly at them because, well, besides screaming and crying and the occasional "Dada" he only coo'd. You know what I mean by coo'ing. The constant Oooo or AAaaa sounds. Lucas would point to things he wanted but I learned that his pointing was even delayed because he couldn't isolate one finger, Lucas pointed with his whole hand. I have learned so much from our early intervention specialists. Lucas had qualified for both Developmental Intervention and Speech Therapy. Those women changed my life! I thank God that they came into my life every day. They gave me the foundation on how I need to proceed with Lucas' life. Lucas has come a long way in the past two years. We have come from him only saying sounds and words while in therapy to learning to be able to use them in play. We have built a vocabulary and he is now at 5-6 word sentences! The hard part is that most of it is still unintelligible, I can understand him most of the time though so I act as translator within our family. What is fun is that Gabriel is finally beginning to understand his brother so sometimes when I am struggling to understand what Lucas is saying Gabe can step in and tell me what his brother wants. As difficult as it may seem we are actually enjoying Lucas' new ability to talk to us. I love having conversations with my little guy! We do need to explore some other area's that he is showing a developmental delay in. He is currently being evaluated by the school district and those reports will be reviewed during his Annual IEP. We are lucky that Lucas is in a great preschool program that has teachers whose specialties are in special education. Honestly, I have learned to take everything in stride when it comes to Lucas and his abilities. The more I learn about his Apraxia and other issues the better I get to know my own child. He is not such a mystery anymore. The hardest lesson I had to learn was to stop looking at the milestone charts because he was so far off that it was discouraging. Now, I just take each victory and each set back in stride with the knowledge that together we will get there. Lucas is not in this battle alone. I am with him each step of the way and I will be his strongest advocate always.
With all of this going on it is easy to loose sight of yourself and put your marriage last. That is why Valentines Day was so important. It was a chance for us to just be together. Last week I also had the opportunity to sing in a Tribute Concert for my old high school choir teacher. That was a spiritually rewarding experience, saying Thank You to a teacher who gave everything she had to her craft but now, while she is fighting for her life I can help renew her spirit to fight. I am thankful that I could be a small part of that event. On a daily basis I keep a focus on my health and on my childrens education. I do my best with my home but honestly this past few weeks have proven to be too hard for me to do much of anything. I cannot wait for Spring. The end of snow. The end of freezing cold. The beginning of flowers and sunshine! Then after Spring comes the wonderful healing warmth of Summer. It has been a long cold winter and I am sick of it. I am dreaming of the warmer days when I can spend more days pain free and doing the things I really love.
Subscribe to:
Posts (Atom)