I'm ending Scarlett's first year in Elementary school feeling a little depressed and defeated by her bleeding disorder. When she started Kindergarten we were very reluctant to label her as special needs and didn't want her bleeding disorder to affect her school, in any way. I knew the federal laws that were put into place: the Individuals with Disabilities Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 were there to help us and protect her rights for a proper education, but I still felt uncomfortable with labeling her as special needs. . . for fears it would be producing some sort of a stigma. And we surely didn't want to have to restrict her from playing with others. . . fast forward to the end of the year and she's been pulled from climbing and finds herself already having to play by herself because the other kids play to rough.
Last week we had a meeting to go over her 504 plan for next year and the school is suggesting she doesn't get to go out on the playground at all. I went into the meeting requesting an aide, and to be quite honest didn't think there would be an issue doing so. . both her hematologist and I had both written letters requesting an aide to help guide her in making safe decisions and to follow through on emergency protocol. Instead I was told that they only found an aide for the morning snack recess and that we would have to come up with some different options during her lunch recess because they didn't feel like being on the playground should be an option.
Let me start off by saying these meetings always make me really nervous. . . They usually include the principal, the nurse, the school's social worker/lawyer and her teacher. I usually start off the meeting sweating, my voice shakes, and I'm always worried I'm going to come off as being stupid and uneducated on Scarlett's bleeding disorder. I can't even get my husband or Mom to go with me because they say it would make them too nervous. . . SO I battle these meetings alone, in fear that I'm going to say the wrong thing, that's going to end up scarring Scarlett for life.
This meeting I decided to start off, showing a half dozen pictures of bruises Scarlett had endured over the last year, most of which we had to administer her meds. Some of them were injuries she got at school and some were not . . . some injuries she had told us about and some she didn't. I explained that Scarlett is starting to recognize the side effects that come with taking her stimate and that she has taken on the roll of covering up her injuries so she doesn't have to take her meds. I wanted them to get a clear picture of what they were dealing with and help them understand what she looks like underneath all those long pants and long sleeve shirts. By the looks on their faces when I put the pictures down on the table I can tell it shocked them a little (and am finding out now), just reassured them that she should't be on the playground. It's such a fine line between scaring the school faculty enough to make sure they're understanding how serious her condition is vs. scaring them to the point where they pull her from the school or any outside activities.
I handed them some more information that I thought would be helpful for them to understand her condition and to keep on file, as well as a list filled with questions and comments about the way in which some things were handled this last year and suggestions on ways to fix them. They're were a few instances where it took a little bit longer than we all would've liked to get hold of a parent after an injury occurred, and we all brainstormed on ways to assure proper protocol in a timely manner is taken whenever she gets hurt in the future. Special activities like Red Ribbon Week, Walk-A-Thons, P.E. and Field days were all talked about and ways to include her next year in a safer manner, as well as suggestions on making sure parents are getting ample notice to take off time to accompany her on field trips and activities that involve an extra set of eyes.
They ended the meeting by politely suggesting I somehow find time in my work schedule to come and volunteer to watch her twice a week and the other days she has to have a set destination to be - the craft club, library, fairy garden, etc. I somewhat agree with the decisions that were put forth and know that they are doing everything they can to protect themselves while protecting Scarlett from getting hurt. I try to be understanding and would like to confidently say that I look at all sides of the picture and understand why the school would choose to pull her from the yard, but that doesn't make the news go down any easier. . . I cried like a baby as soon as I got into my car. Just the thought of telling a little 5 year old that she can't play on the yard with her peers, makes it feel like someone punched you in your gut and is something no parent should ever have to tell their child.
Fortunately we chose this school for Scarlett because they have a Recess Renaissance program at lunch time which provides "clubs" for the children to participate in, that don't want to be out on the playground. This will hopefully provide enough options for her so she doesn't feel like she is being excluded, and can hopefully give her the chance to meet other children who have the same interests as her. . . that doesn't involve climbing on play structures or flying balls at her head. I'm confident if proposed to her in a positive way that Scarlett will have no problem adjusting to this new schedule and hope that eventually she will have the option to play with the others. She loves to read, write, and do art and I can only hope she can thrive in these activities enough to feel like she isn't missing out on the things she isn't able to participate in. When my daughter was diagnosed with Platelet Storage Pool Disorder when she was 2, I had no ideas the issues that would come once we reached elementary school. I get brought to tears every time I think about how she will grow up always having restrictions. Until we can find a medicine that she can take regularly to enable her to live a more normal life, this is the cards we've been dealt. I can only hope with the correct support and decision making we can give her as normal as an experience as she needs in her Elementary years to fill her with the confidence and intuition to go on playing like all the other children.
Last week we had a meeting to go over her 504 plan for next year and the school is suggesting she doesn't get to go out on the playground at all. I went into the meeting requesting an aide, and to be quite honest didn't think there would be an issue doing so. . both her hematologist and I had both written letters requesting an aide to help guide her in making safe decisions and to follow through on emergency protocol. Instead I was told that they only found an aide for the morning snack recess and that we would have to come up with some different options during her lunch recess because they didn't feel like being on the playground should be an option.
Let me start off by saying these meetings always make me really nervous. . . They usually include the principal, the nurse, the school's social worker/lawyer and her teacher. I usually start off the meeting sweating, my voice shakes, and I'm always worried I'm going to come off as being stupid and uneducated on Scarlett's bleeding disorder. I can't even get my husband or Mom to go with me because they say it would make them too nervous. . . SO I battle these meetings alone, in fear that I'm going to say the wrong thing, that's going to end up scarring Scarlett for life.
This meeting I decided to start off, showing a half dozen pictures of bruises Scarlett had endured over the last year, most of which we had to administer her meds. Some of them were injuries she got at school and some were not . . . some injuries she had told us about and some she didn't. I explained that Scarlett is starting to recognize the side effects that come with taking her stimate and that she has taken on the roll of covering up her injuries so she doesn't have to take her meds. I wanted them to get a clear picture of what they were dealing with and help them understand what she looks like underneath all those long pants and long sleeve shirts. By the looks on their faces when I put the pictures down on the table I can tell it shocked them a little (and am finding out now), just reassured them that she should't be on the playground. It's such a fine line between scaring the school faculty enough to make sure they're understanding how serious her condition is vs. scaring them to the point where they pull her from the school or any outside activities.
I handed them some more information that I thought would be helpful for them to understand her condition and to keep on file, as well as a list filled with questions and comments about the way in which some things were handled this last year and suggestions on ways to fix them. They're were a few instances where it took a little bit longer than we all would've liked to get hold of a parent after an injury occurred, and we all brainstormed on ways to assure proper protocol in a timely manner is taken whenever she gets hurt in the future. Special activities like Red Ribbon Week, Walk-A-Thons, P.E. and Field days were all talked about and ways to include her next year in a safer manner, as well as suggestions on making sure parents are getting ample notice to take off time to accompany her on field trips and activities that involve an extra set of eyes.
They ended the meeting by politely suggesting I somehow find time in my work schedule to come and volunteer to watch her twice a week and the other days she has to have a set destination to be - the craft club, library, fairy garden, etc. I somewhat agree with the decisions that were put forth and know that they are doing everything they can to protect themselves while protecting Scarlett from getting hurt. I try to be understanding and would like to confidently say that I look at all sides of the picture and understand why the school would choose to pull her from the yard, but that doesn't make the news go down any easier. . . I cried like a baby as soon as I got into my car. Just the thought of telling a little 5 year old that she can't play on the yard with her peers, makes it feel like someone punched you in your gut and is something no parent should ever have to tell their child.
Fortunately we chose this school for Scarlett because they have a Recess Renaissance program at lunch time which provides "clubs" for the children to participate in, that don't want to be out on the playground. This will hopefully provide enough options for her so she doesn't feel like she is being excluded, and can hopefully give her the chance to meet other children who have the same interests as her. . . that doesn't involve climbing on play structures or flying balls at her head. I'm confident if proposed to her in a positive way that Scarlett will have no problem adjusting to this new schedule and hope that eventually she will have the option to play with the others. She loves to read, write, and do art and I can only hope she can thrive in these activities enough to feel like she isn't missing out on the things she isn't able to participate in. When my daughter was diagnosed with Platelet Storage Pool Disorder when she was 2, I had no ideas the issues that would come once we reached elementary school. I get brought to tears every time I think about how she will grow up always having restrictions. Until we can find a medicine that she can take regularly to enable her to live a more normal life, this is the cards we've been dealt. I can only hope with the correct support and decision making we can give her as normal as an experience as she needs in her Elementary years to fill her with the confidence and intuition to go on playing like all the other children.
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Scarlett playing Lego's by herself:(
Written by,
Kari Peepe
For more of my blog entries about our life in elementary school check out:
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http://atouchofscarlett.blogspot.com
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