JuneFlower Posted February 28, 2014 Report Share Posted February 28, 2014 The drs says she should try even if she doesn't feel great.But she refuses to go unless she feels 100% perfect. And with POTS and hypotension, that doesn't happen a lot. Right now, she is suffering from many migraines. Any tips on getting her to go? Or should I be trying to get her to go? She doesn't want to homeschool or do school online. She's going 9th grade. Its a big problem.June Quote Link to comment Share on other sites More sharing options...
MomWithPots Posted February 28, 2014 Report Share Posted February 28, 2014 Sorry to hear that. I had the same problem and I didnt have a diagnosis at that age, so we actually got in trouble with the state and had court. I eventually went into homeschooling and graduated at 17. Im now on my third yr of college. I know she doesnt want that, but she doesnt have many choices The program I went through is called penfoster. The total cost is around $1200 and u can pay $50 installments. There is no deadline on your work and you turn assignments in at your pace, which is perfect for pots. You can finish as fast as you want. Just one option. Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 28, 2014 Report Share Posted February 28, 2014 First of all your daughter needs to realize there is only so much that a public school can do to provide an education. My son went to school on homebound services first. The school district sent a teacher out 3 times a week and left work for my son to complete for other classes. My son passed his 5th grade year this way. The next year we did online school. In Oklahoma, a student must complete 80% of the curriculm with a D average and the student can be passed on to the next grade.If she has done enough work to pass this school year, then maybe it's time to start some intense therapy sessions. POTS can be very overwhelming to the patient and the family. POTS is not the end of the world and I know that's hard for her to realize when she feels so bad most of the time. I wish there was a magic pill to make this all go away for you and her.After this all started and eventually kept getting worse, as a family we sat down and discussed goals. We went to MAYO but they have a tough love approach to kids with POTS. For our son, we knew this approach would not work because of other medical problems. Which in a way, may be what is causing more problems for your daughter. Keep searching for the underlying cause. In my opinion, you will find one.As for goals, our main one was to take it day by day and Tyler was to do as much as he could do. Even though, Tyler felt terrible, he attempted to do school work side by side with mom. In the beginning, sometimes only an hour but he made it count and mom was his cheerleader and learning coach. Education was a priority but so was his health needs. It was a balancing act.Tyler was mad at first when he had to give up going to public school. About 6 months ago, he finally admitted that online school was probable the best thing for him. His work load is modified and most days he can get through all of the work. His goal was to go back to public school this year in a wheelchair. However, he has not given up on this goal and neither have his parents. Hang in there and keep searching for answers.Rachel Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 28, 2014 Report Share Posted February 28, 2014 It gets easier once you go. I compare it to work . My first few days were frustrating physically and emotionally. It does help. My daughter was just diagnosed with lupus . She did chemo/steroids. She started online courses and found it hard to keep up. She us struggling and may not be able to graduate with her class next year. She had the option to do half in school and half online if she had it to do over again I think she would've done that.wouldve helped her learn Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 28, 2014 Report Share Posted February 28, 2014 I don't have any specific experience with this issue, however, in general I certainly sympathize. I was very sick for months (including many months of being bed ridden/homebound). As I started to get better it was hard to know how much to push. Push too hard and you end up feeling poorly again. I also did not want to go back to work until I felt really certain I was stable. B/c I felt that once I made that commitment to return to work I would have to stick with it. It is scary--feeling very sick is bad enough, feeling thay way in public situation is even more awful. At her age I can only imagine this is a sensitive issue b/c besides the concern about feeling poorly/being able to function academically there is the social/peer element.Is there a way to try half days or otherwise part-time--would she be open to that?Everyone is different, and POTS is different for each of us it seems. So what works for one may not for another. But I have found in general that pushing myself a bit is good--typically I end up not feeling as badly as I thought I might (or at least I cope better than I thought I would) and I feel good about trying and accomplishing something. But it may have to happen in small steps. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 28, 2014 Report Share Posted February 28, 2014 My son, for his entire high school education, did 3 classes with the homebound teacher and 3 classes on line each semester. It was hard to get it all done, he even worked through the summers, but he did graduate with his class on time. The school gave him PE credits for doing water jogging at home (60 hours) and for physical therapy at the Mayo Clinic, so that helped. He was a very social, popular kid and didn't want to give up school, but he also knew there was no way he could attend school and get an education feeling the way he was feeling. He knew his reality was he was sick and brick and mortar school was not going to happen. Our state pays for on line classes for the 'medically fragile' and if they ran out of funding, our school district picked up the tab. There are many options to investigate. Quote Link to comment Share on other sites More sharing options...
IceLizard Posted February 28, 2014 Report Share Posted February 28, 2014 Hello JuneFlower,If she is refusing to try to go to school, she may be feeling fear or distress at the thought of not being able to perform or having an episode at school. There are family counsellors who specialize in helping people deal emotionally with chronic illness. I know that helped me when I was in school and feeling overwhelmed.Best,Hollin Quote Link to comment Share on other sites More sharing options...
Christy_D Posted February 28, 2014 Report Share Posted February 28, 2014 June,Also, when we were trying to get my son to go to school, the counselor gave him a couple of places he could go to during school if he felt he needed to. One was an empty office, where he could sit with the lights off or recline back in a chair, or a corner of the library or an empty classroom. It was written in his 504 plan(at the time, before IEP), that he could dismiss himself from class and go to the nurses office or one of those places at any time he felt he needed to. Would she feel better if she knew she could get away from it all if she needed to?Christy Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 28, 2014 Author Report Share Posted February 28, 2014 yeah she has a 504. Just had school meeting about IEP and 504. Plan is for her to go to half days for now. But we will get tutoring.They mentioned the phrase "medically fragile" today. Not sure how that helps us.June Quote Link to comment Share on other sites More sharing options...
Becia Posted February 28, 2014 Report Share Posted February 28, 2014 I vote for homeschooling/online classes. I love school, and while I wasn't diagnosed when I was in school, when I decided to start taking classes again at the current time to just keep my brain active, I knew that going places doesn't always work with me, and I would need to modify whatever I did. I'm currently enrolled in online courses for medical transcription, which I'm having a good time with, but am doing all online with a laptop, iPad, and my physical school books. I love my laptop because if I'm having a decent day where I feel I could work for a bit with my feet down, I can place it on my desk and use my pedal to control my files. If not, I can lay on my bed and use my hand to activate the pedal. And if I feel like doing 3 hours of work, I can do it at my pace. Right now I'm just focusing on pieces of my chapters, like all book reading to all listening, then to transcription. I can alternate this as I feel fit, some days I can listen better, other days I can type better (I use Dragon program to help with typing, because I have issues with my hands.)I can understand her wanting to go to school only at 100%, I only want to go places, like church, feeling like that too. I have places at places where I go on a regular basis that if it's too much for me, I escape to calm down, let the trigger pass, medicate if need be. And if she's worried about missing something in school because she does feel this way, then she's gonna have to do something else. But it does kinda feel like a slap in the face, like a reminder that she's ill, and that can hurt. My moment of that came in the form of a friend bringing a wheelchair to the house for me to use, and when my friends installed a ramp in the front door because I was simply not able to climb two stairs to get into the house anymore. Not going to school at 100%, or having issues, can be such a harsh reminder to a kid you're sick, but eventually, there's an acceptance of sorts. Still hurts at the time, but that ramp has allowed me to "save my spoons" as we say here, to take a shower, because I need to be able to stand to get into the shower where my chair is there.I do hope something works out for her. Quote Link to comment Share on other sites More sharing options...
Gitte Posted February 28, 2014 Report Share Posted February 28, 2014 June,Do you know why she doesn't want to go? Is she afraid of the way others will react when she doesn't feel well or does she feels she is just too weak to attend school?Maybe it might help if someone of the school staff can talk to her? Just a thought...I hope she feels better soon! Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 28, 2014 Author Report Share Posted February 28, 2014 Gitte- yes everyone has talked to her. She's been reassured that they don't expect her to be 100% when she comes all the time. She just doesn't do anything halfway. We are working on that. School officials are useless, engaging a lawyer at this point. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted March 1, 2014 Report Share Posted March 1, 2014 You know your daughter better than us, but could she be too sick, stressed, and overwhelmed to make a decision or know how she feels about switching to homeschooling and would benefit from you saying you are making the decision based on what you think is best? Even at 22, I remember appreciating my Mom making decisions for me when I was at my worst because, despite a college degree, it seemed impossible the simplest decisions, let alone major life changing ones.If she does not have a preference, I vote for homeschooling. She can do it at her own pace and when she gets the ability to do work, she can do it, if she suddenly has to stop, she doesn't have to offer anyone explanations or feel embarrassed. I know a teenager who does online schooling and the school lets her come do it in the library if she feels up to it as a small step toward getting back into the classroom.Also, maybe she would benefit from a counselor. Not a psychologist who you are paying to evaluate her and who may try and diagnose her with something psychosomatic, (I think I saw you post on that), but a counselor whose purpose was to be a neutral person she can talk to about what she is going through. I suppose I would say the purpose is "stress management" versus seeking an opinion. I know sometimes I hold back with family because I don't want them to worry. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted March 1, 2014 Report Share Posted March 1, 2014 Counseling a good thing Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 1, 2014 Author Report Share Posted March 1, 2014 She has her own private counselor who she likes. The isolation of homeschooling or online schooling is going to make her more depressed . But thanks Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted March 1, 2014 Report Share Posted March 1, 2014 I am happy to hear she has a counselor she likes. I am not trying to force homeschooling, but just offering alternative ideas -- could she homeschool for her core classes then come to school for an elective class or two each day like art/sewing/computers? Or maybe finish out the year homeschooling with the plan being she uses this time to figure things out and goes back to regular schooling in August? I can relate to her having trouble accepting doing things halfway. As soon as I read that, I understood why she doesn't want to go because I used to feel the same way (and still do sometimes) I had trouble even letting someone else do my laundry or clean my bathroom because it wouldn't be exactly how I wanted. I found it preferable to run out of clothing than have someone else do it and risk it not being done and put away how I like. I would just not clean the kitchen rather than do the dishwasher, rest, then wipe down the counters because I thought it was unacceptable/"stupid" that I couldn't just do it perfectly all in one go. I would never tell people "no" when they asked me to do things I was good at that I used to do when I was healthy. If I started feeling sick during doing things, I'd hide it, and rather than excuse myself, I'd push through and make myself sick for the next week. My instructors in college couldn't believe it when they found out I was sick because I worked so hard to hide it and be perfect until it just wasn't possible any more. She may feel she is losing a big part of her identity by agreeing it will be acceptable to not be perform as well at school as she is accustomed to. It took me a long time to understand what I can and cannot do doesn't make me who I am. If you want to hear more about how I've overcome this or how my family helped me work through it (although I still struggle sometimes) just let me know, I don't want to rattle on if you've already gone down this avenue or it doesn't fit. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 2, 2014 Author Report Share Posted March 2, 2014 It sounds like you have adjusted well. My daughter is just 13 so how they deal with things is very different than an adult. I will let her counselor work with her. Also we are not settling for this constant sickness. We are still in the phase of trying to actually get her better. Maybe silly but there you have it. Seeing a specialist soon hopefully.June Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted March 2, 2014 Report Share Posted March 2, 2014 Half and half. Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 2, 2014 Report Share Posted March 2, 2014 My position would be is that you have a choice. One or the other. I would let her choose because she knows best what is too much and not. I would be nervous about a commitment that I did not know that I could keep. I would let her make this decision, but I would put it on her to make a decision. The good thing is that she will likely be better than what she is now. Maybe by next year, she will feel differently and choose differently. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 2, 2014 Author Report Share Posted March 2, 2014 bigskyfam- "half and half"- what?gjensen-choose to go to school?sorry i am so confused. she is 13 so she's not making decisions about school. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted March 2, 2014 Report Share Posted March 2, 2014 My step daughter did half and half at first. Some Classes at school and work at home. It's a great temporary solution emotionally and physically. My stepdaughter has lupus and underwent chemo with steroids. She decided to do all online classes in Washington where she is staying with her mother. She is having a hard time because she doesn't understand her work has issues with the internet and computers and is very distanced from her classmates . I don't have the answer for you just sharing her story. It's tough. Your decision mama... But please seek her input as well. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted March 2, 2014 Report Share Posted March 2, 2014 I know it's very different for a teen, especially a young teen. My experience was starting from when I was 18, so I thought there may be some similarities compared to some of the adults here. I think the feeling of a loss of identity to some degree is universal while dealing with an illness that alters your ability to do things that defined you, even if it is temporary, but how it effects someone depends on their personality, support system, and, like you said age. I know I saw so many commonalities (in emotional concerns/coping) between myself and my 90 year old grandpa when he got sick and he had lived a full life until a few weeks before his 90th birthday. I saw him refusing to do things differently at first even though it would have helped him because, to him, that felt like losing something. It sounds like you're confident her counselor is on top of that as a possible component playing into the school situation, so that's wonderful for your daughter.I am thinking of your family and I look forward to hearing about how everything works out! Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 2, 2014 Author Report Share Posted March 2, 2014 Jackie- thank you. I agree that experiences would be very similar across different ages. I only meant that a 13 yr old has a lot of angst anyway about identity. This is really complicating it.BigSkyFam- I understand. I don't know if her public school would allow that. But that is a good idea.June Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 2, 2014 Report Share Posted March 2, 2014 bigskyfam- "half and half"- what? gjensen-choose to go to school? sorry i am so confused. she is 13 so she's not making decisions about school. No, I meant go to school or school at home. Not whether or not she was schooled. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 2, 2014 Author Report Share Posted March 2, 2014 gjensen- I understand. Cause if I left it up to her, she would never go…Lol. She used to enjoy school but not anymore.June Quote Link to comment Share on other sites More sharing options...
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