Parent perspective for case study:

In this forum post and respond by taking the perspective of Joshua's family. Contribute concepts or ideas from the textbook to support the family perspective. Exchange ideas about this situation and come up with possible courses of action.

This is the case study:

Joshua is a 9 year old, Caucasian male in the 4th grade at a Midwestern public school in a midsized community. Joshua has scored well on standardized tests, reads above his grade level, is especially interested in topics related to outer space, video games, and building with Legos. He also has Cystic Fibrosis. Joshua had mild behavioral problems towards the end of 3rd grade and reported being bullied at that time. Shortly after beginning 4th grade he was having social problems at school and began experiencing academic problems. Mrs. C, Joshua's classroom teacher, has a yearlong project in which students earn money for arriving on time for "work" and can buy privileges with money they earn. The parent, Sarah, communicated with the teacher informally about concerns related to Joshua's performance at school & possible bullying until late October. Sarah felt as if her concerns were not taken seriously and Joshua felt as if he were being penalized because of multiple situations in the classroom. The following is an email trail from Sarah, the parent, which includes communication with the classroom teacher, the principal, and the consultant who is also an educator. Please read and formulate questions about the scenario as if you were an expert consultant. What missing information do you want to know? Consider how this scenario might be viewed from various perspectives: the teacher, the principal, the parent, the child, and other students in the classroom. What solutions to the problems do you suggest and why? What links to textbook material or course content can you make? Highlight information you find of importance and make notes in the margin of this handout. Note textbook ideas w/page numbers that connect with the case study information. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ from Sarah (Parent) to Mrs C (Teacher) date Tue, Oct 25, 20xx at 8:19 AM subject Joshua's Tardies Hello Mrs. C, I know that Joshua was late yesterday, and has been frequently throughout the school year. I want to remind you that his tardies are due to his Cystic Fibrosis. This is documented in his plan with the school along with the provision that, if he is late, he should not be penalized. There are a few reasons why he can be late from the symptoms of his disease. These include, but are not limited to, intestinal problems causing overactive bowels, particularly in the morning, and extended treatment periods, which are dependent on how he is doing. For example, he was late yesterday because of a 30 minute session of him coughing up brown mucous - a possible sign of "bad" bacteria in his lungs. These symptoms occur without warning and it is not possible for us to predict how much time he will take getting ready, despite our best efforts to wake him up at the same time every day. He is not being irresponsible. Additionally, I do call the office and report that he is late due to health related issues so that the school is not penalized by the state in AYP measures. For obvious reasons, he is uncomfortable sharing the specifics and, in compliance with HIPPA standards, he should only need to report that it is due to his disease. I also want to make you aware that many nights he has trouble sleeping because of breathing

Page 4 of 10 issues, so some days he might be unusually tired. Again, this is not because of being irresponsible with bedtimes - no matter what time he lays down he might not fall asleep until 11 or 12, but is a direct effect from the disease. This all being said, he told me that yesterday he did not receive his class "money" because he was late and, additionally, he had to stay in from recess. These are negative consequences from situations beyond his control and, as documented in his school plan, should be avoided when he is late. It is important that he is not penalized for his tardies because it creates a disincentive for him to take the time to take care of his body when he needs it. I believe that following normal sets of standards, such as being on time, are an important value, however, in the larger scheme of his health and life, he needs to learn to slow down and pay appropriate attention when his body needs it most. By law, in school and eventually his workplace, he is not to be penalized for this type of care and attention to his medical needs. I would like to see us develop a plan for him to get caught up on the morning that will not feel like a punishment. I am open to suggestions and encourage including Joshua in the conversation. It is important that he has all of the information that is missed when he is late, but surely there is a way to get this without a penalty. I look forward to hearing from you regarding this matter. Sincerely, Sarah ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ On Thu, Oct 27, 20xx at 10:05 AM, Mrs C wrote: Good Morning, I do apologize for not having replied sooner. We have been really busy here at school this week. I am more than happy to make sure that Joshua has time to make up his work that he misses in the morning, due to tardies regarding his illness, at a time other than recess. He can use read aloud time for anything missed in the morning. Unfortunately, on Monday I had forgotten he was late, but he also had other assignments that needed to be completed that weren't due to being tardy. Since we are only required to provide one recess to the students, we often use the 2nd recess as a time to catch up. Usually, Joshua is only running a few minutes late and makes it here in time to receive his class money. When any student arrives after 8:15, for any reason, they do not get paid. The only time we have in our schedule is at 8:05 and the things they get paid for are morning routines that students do to get ready for the day. We talk to the students about how this is their job and if they miss their job in real life they don't get paid for that. We try to make the mini society experiences as true to real life as possible. Thanks again for letting me know your concerns. I appreciate your patience with me in getting back to you. ~MC

Page 5 of 10 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ From: Sarah Date: Tue, Nov 8, 20xx at 8:38 AM Subject: Re: Joshua's Tardies To: Mrs. C Hello Mrs. C I wanted to make you aware that Joshua is having problems with some of the boys in the class that sit at his table: David and Marcus. Over the past two weeks he has been taunted about his gatorade bottle and now he is not drinking it throughout the day which caused problems with his treatment because he did not have the appropriate salt and hydration he gets from the gatorade. There have also been issues with him being made fun of for playing videogames which, by my understanding, leads into statements from them saying that he is too scared to go outside and that he doesn't run around like them because he's afraid to get hurt (both of which are results of his CF, not him being afraid). There were also comments that if he went trick-or-treating at David's house, they would throw a cupcake at him. All of this is making him feel unsafe in the classroom and at recess. Additionally he said that he was getting in trouble for telling, that you said he was doing it to the other children and no reprimand was issued, and now he doesn't feel like he can say anything to you. Then he came home last Thursday and said he got in trouble for not telling. I think at this point he is very confused on when the appropriate time to tell is. Last year we emphasized telling because he was trying to handle situations on his own and was getting in trouble for that. Also, with the morning class money not being distributed to him when he is tardy due to his illness you replied, "We talk to the students about how this is their job and if they miss their job in real life they don't get paid for that. We try to make the mini society experiences as true to real life as possible." This is very disheartening and is actually false for him. The Americans with Disability Act ensures that he will not be penalized for his disease and includes a wide variety of statutes that employers must uphold to protect him from discrimination from his disease. I fully realize, and have emphasized with him, that the mini-society is simply a school exercise. I have reassured him that in real life, with a real employer, there can be a document, similar to what is written up for him for school, that protects him and does not penalize him for treatment related tardiness to work. We have consulted with legal counsel and, actually in real life, such types of breaches of the contract are grounds for suing the company. At this point, since you announced to the entire class that, for no matter what reason, if they were late they would not get paid, addressing this would only serve to make him more of a target in the classroom. He is only 9 and I don't think he's ready for any more scrutiny from his classmates so at this point, my suggestion is to stay with your mini-society rules. However, I do think that you should be aware of the provisions in the ADA for children you might have with disabilities in the future with this exercise. I'm sure we can talk more about all of this at our parent teacher meeting on Wed. In the meantime, I beg you to please be aware of the situation that is going on at his table. Thank you for your attention to this. ~Sarah

Page 6 of 10 From: Sarah Date: Tue, Nov 8, 20xx at 9:53 AM Subject: Fwd: Joshua's Tardies To: Joni A (Principal) Hello Mrs. A, I wanted to bring to your attention the situation that is occurring with Joshua in the classroom. Initially I did not know how to respond, but after speaking with a colleague of mine who is a past assistant superintendent and one who is a legal counselor, they said I should bring this to your attention. As you may recall, Joshua has a school plan established. When he is late due to his illness I call the office as we outlined last year. He is not to be penalized for his CF related tardies. I made sure at the beginning of the year Mrs. C had a copy and asked that if there were any problems to please contact me. One morning Joshua said that he would not take the extra time to take his treatment seriously because he was going to be late and he would not get paid in their mini-society. I basically brushed him off and told him, too bad, you have to do this and be late. I explained that we have a school plan established and I would email Mrs. C and remind her that he is not to be penalized for his CF related tardies, that she probably just forgot and it wouldn't be a problem. I did not get a response from her, but Joshua came home and said that she announced to the class that, no matter what the reason, they would not be paid if they were late. Joshua knew that I was emailing and, despite her making a class announcement, felt singled out. He told me not to follow up on it because her to give him money now because he didn't want special treatment in front of his classmates. He told me that in the mornings he could just "hold it in", which is one of the worst things he can do for his disease as it compounds the factors that are already hurting his body. I did not get a response the next day either and finally wrote in his planner asking her to please respond. The email is below, but the part that disturbs me the most is when she says: We talk to the students about how this is their job and if they miss their job in real life they don't get paid for that. We try to make the mini society experiences as true to real life as possible. I want to emphasize that this is not an accurate depiction of "real life" for Joshua in the future. His CF will never go away and, very likely, will become more complicated as he gets older. He will qualify for the Americans with Disabilities Act which ensures that he cannot be penalized for disease related issues that arise. He wants to go to college and has goals for his future employment. He came home feeling like, because of his disease, he wouldn't get paid as much as other people and was very upset about how unfair it was that he had CF (he blamed the disease not the teacher). I feel like we've worked VERY hard in trying to mitigate the issues with his CF and this just brought everything back to square one, only this time, it wasn't just with the current situation, but a loss of hope for the future as well. I have believed in the public school system. My entire job is dedicated to trying to make it the best for all children, despite different backgrounds they might come from. I don't want to give up hope tin the school's mission statement, "our school community will enable ALL students to acquire life-long

Page 7 of 10 academic and problem-solving skills, self-worth and RESPECT for all." But I don't want to go through another year like last year either. I am very concerned about the impact the school is having on his academic, social, physical, and mental health for the following reasons: Academic: His MAP test scores in reading showed that he actually DECREASED knowledge (206 to 203) over the academic school year last year and INCREASED knowledge (203 to 205) over the summer. In math, he decreased knowledge from the winter to spring test (221 to 214) and had no loss over the summer. I am a statistician who works with value-added modeling and the MAP test is a valid instrument for evaluating a child's academic growth (compared to the KS state test which is not). This type of result is opposite of positive academic gains for students. Social: The effects of the situation described above. Physical and Mental: Again he is having issues with other kids at school picking on him, this time for situations directly related to his CF: bringing gatorade and not being able to run around outside like others (see email below for details). These issues are occurring both in the classroom and at recess. I realize there are a lot of kids to keep track of, but this is having a direct impact on his physical and mental health. We stayed with the public schools last year because we didn't want to give up on it. Do you have any ideas of how to move forward to best help Josh? At this point we are seriously considering other options for schooling him. If you would like to discuss this further, I am open to meeting or corresponding via email. I feel very discouraged right now and am not sure how to proceed. I don't want to be the whiny difficult parent, but his health and overall well-being is my primary focus. He has goals and dreams and I believe it is my job as a parent to make sure that he has the best opportunity to achieve them. I look forward to hearing from you. ~Sarah ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Thu 11/10/20xx 10:34 AM From: Sarah To: consultant Hi - Yes, you can share the email. I had my parent-teacher conference (the school counselor was there too) and an hour long meeting afterward with the principal (I'd never actually had a meeting with the principal, I was pretty shocked she extended the invitation!) So basically here are the key points from each meeting: From the Conference with the teacher and counselor: Joshua is VERY bright and smart and has a lot of creative amazing ideas

Page 8 of 10 He excels in math and science and his reading comprehension is great. I asked her if there was a way to further this in the class and she said she could give him extension worksheets in math. His writing and neatness need work All of the children at his pod have been "interviewed" about the situation that is going on. The other two girls at the table say that, yes, the two boys (one who is our neighbor) are being mean and though what they are saying doesn't sound mean - "What flavor is that gatorade Josh?" - the girl's confirmed it's always said in a nasty tone. So basically everyone confirms, Yes, there is some mean stuff going on. BUT (right, there's always a but) Joshua is not innocent either, he's started calling the boys names back (They called him Mario boy, so he started calling them Football boy) and apparently he's started saying "Screw you". So the way it was put to me was basically that it's not fair for the teacher to have to dig through everything because "A lot of times when Josh tells it turns out that he was the one who started it". I fully believe there are times it's true, but not "a lot". Anyway, after saying all that they emphasized that he SHOULD report things and that if he puts it in the reporting box, it will get dealt with. He needs to work on earning trust though. The teacher also said he's been saying inappropriate things to girls. I gasped and said, "I'm sorry, what? This is the first I've heard anything of this nature! What is being said?" Well apparently he told a girl he was going to cut her ears off if she didn't stop talking. This actually made me feel better because, okay, it's inappropriate, but to any gender, not just towards girls. I asked if the teacher used the MAP testing as a tool and she said basically only as a sorting tool after they take it. She said there's just too many kids to actually look at their trend lines (which are provided to her for each child. It's a line graph - how does that take much time to check for perverse effects like what's happened with Josh?) Our "plan" upon exiting was that Josh would be able to move his desk away from the pod and become an "island" if he felt like he needed to. I said this worked well last year and that he did MUCH better by himself. They said that in 4th grade (and in every grade in that school) they work on the "important skill of working in teams" and Josh really needed to learn that skill. I replied I understood and I agreed, but there's a line of how much knowledge is he losing when he's completely distracted by everyone else? I DO get the concept and I know in "real life" we have to work in teams sometimes. But it's not every day all day with never a moment to yourself to think about things, which is the situation for those kids. I also asked the teacher to PLEASE KEEP ME INFORMED, last year the teacher emailed me each day with an update including at least one good thing. Well this teacher is just too busy to email everyday but she can "try for once a week". (She also used the "I'm just too busy" excuse for why she didn't answer my first email for 2 days and why she didn't answer this latest email. I understand there's a lot of kids, but it's not more than 25! How can you possibly be too busy to not respond even if every parent emailed? His teacher last year had MORE kids and was able to email almost every day)

Page 9 of 10 The "money" for the society was not addressed and I was hurried out because it was the next parent's turn. From the Conference with the Principal: She's talked to all the boys, she's holding them all accountable, they're all being mean. Basically a rehashing of the above. She did also talk to the neighbor boy's mom and said that her son IS being mean. She was also very proud of Josh for admitting a lot of his wrong doing in all the situations, but said he needs to keep working on the trust issue. I brought up the testing trends and expressed my concern particularly with the reading since he's not even to the level he was at when he STARTED 3RD GRADE! I told her he reads books at a 6th grade level at home, but I'm pretty sure the last book he read at school, "Aldo Applesauce" was not that high. She looked up his reading level - "P" and said it wasn't the highest but it wasn't the lowest either. We talked a lot (I was in there an hour) and I felt like she was really listening and agreeing about what Josh is going through. I told her I think Josh has a hard time with kids his age because he assumes that everyone is on the same level with him, but when he talks to them, they're nowhere near. I honestly think he's gifted in math and science and I think, emotionally, he's on another level because he's contemplating mortality while the other kids are upset about losing a ball game. A main issue was also that Josh needs to work on talking about his disease. When kids are asking about it or the Gatorade bottle, he assumes they are making fun of the fact that he has it, but it may start out as just a simple question. I agreed that he does need to work on how to respond and he needs reminded that just because his mind goes there, does not mean everyone else's does, BUT, I also said that this might be a really great age to discuss what is and is not appropriate to ask about health issues. Not everyone needs to know why and if he doesn't want to talk about it, he doesn't have to. Period. It could lessen the stress of situations, but at the same time, I fully support his right to privacy. Apparently with the Gatorade bottle the boys had asked him why he had it at the beginning of the year (yeah it's been going on that long) and when he didn't tell them, some of the other kids who knew told them Josh had a disease. Then when they realized that it bothered Josh when they talked about the Gatorade they just kept using it because they knew it was his "hot button". They probably really weren't associating making fun of that to making fun of his disease. It was a good conversation, but I walked out of there with no definite plan of how things are going to change besides she's going to check up on him and the boys the next few days in school because so many things have been said, it's just a really horrible situation. (Note: Apparently she talked to the boys on Tuesday and said absolutely they were not to even mention the Gatorade bottle again. Ever. And Josh said Wednesday nobody made fun of him.) So that's where everything is at. I figured I'd write it all down (even though this just took me an hour) because at least it's all documented now. Here's where I'm at. I don't think things are going to drastically change. I don't think it's a safe environment for him, even if this gets fixed, there's no attention to how the next situation - because

Page 10 of 10 there will be a next situation - could be prevented. All strategies are reactive rather than proactive. He's not being challenged and his passion for learning, even in the areas he enjoys, is being slowly suffocated. He's started saying he's stupid because he writes sloppy and the kids make fun of his handwriting and the neighbor boy tells everyone he gets Ts (Equivalent to an F). We've been talking about the virtual school with him (apparently it has such high accolades that international students enroll in our district's program) and this morning he said he wants to do it. A couple days ago he said he wanted to start it in 5th grade, now he's saying he wants to start as soon as he can. I want to remind you, this is after a really good day at school where no one made fun of him. I want to share with you how he feels about school: One morning when I was dropping him off I said "Have a good day!" He replied, "Mom, some kids want to have good days at school, I just want to have a bad day because having a bad day is actually a good day because it's not a horrible day." I'm done with the school system. I'm going to start setting the online school in action. I think it will take a while, so in the meantime he has to go to public school still, but I'm going to give him a light in that darkness. He can succeed, he has SO much potential. I'll enroll him in social activities, but it might be with older kids because he seems to get along better with them. In "real life" you don't have to hang out with just people your age. There's so many things you can do and he needs shown that there's always another way. Plus, if he ever gets sick and has to go to the hospital, he won't get behind because we can bring everything with us. If we want to stay some extra days with family or take a couple days to travel to St. Louis or Chicago and view art museums or see the monuments, or do a history lesson on Louis and Clark, we can. I just have to make sure to try to include [his big sister] in things too. She's already said she would be a little jealous he gets to spend more time with me. Thank you ~Sarah This email chain is part of documentation that was provided for Dr. Rhonda Frazelle as she served as a consultant for the family and school to help Joshua succeed. The intended use is for educational purposes only. Of course this manuscript does not tell the whole study and may raise many questions. Thoughtfully do your best to answer questions raised by using your textbook material and personal experiences.