High School with a Chronic Illness

[Chrysalis Academy]

I know there are quite a few people in this situation, and I'm hoping some of you will share advice and thoughts about helping a child with a chronic illness successfully navigate high school. Dd became sick almost exactly a year ago, and her condition has deteriorated to the point that she has very little energy, physical or mental. We're working on diagnosis & treatment - that's another topic - but what I wanted to focus on in this thread are the issues that arise in trying to "do school" with a kid who is chronically ill.

 

Energy & ability to focus is limited. It just is. There is no way this child will be able to spend 6+ hours a day doing schoolwork. Some days she won't be able to do any. Most days she'll be able to do at least a couple of hours. So what's the best way to use that limited energy & focus? One option is to focus on the core subjects, the things you need 4 credits of, and let other things go. Math, English, second FL credit, Social Science. There will be the option to "recover credits" using DE later, if she starts to feel better.  

 

But. One of the only things keeping dd going is her creative writing. It's who she is, what she loves to do, where she pours her energy and gains energy. It's something she can do on her own, when she feels able to. On the good days, she might write several hours a day. Some days she can't write at all. Last thing I want to is insist that she always, every day, use her energy on math and english and spanish, because if she has nothing left for writing, she'll be miserable. Even more miserable than she is now.

 

What would you do in this situation? Forge ahead trying to put together reasonable credit-worthy classes? Take the year off and just let her write? Or something in between? Seriously, I'm interested in advice, suggestions or experience anywhere along that spectrum. I'm really having to face the fact that this is our reality, it's not going to just go away, so we need to face it and have a plan for dealing with each day as it comes, while keeping an eye on the future.

 

This is a kid who, if she felt well, could realistically just decide to be done with high school and start at the CC full time. We have a good CC nearby. So I'm not completely attached to the idea that she has to do traditional high-school-at-home. She could focus on feeling better and then when she is, start at the CC and plan to transfer to a 4 year school from there. That's a totally viable option, FWIW.

[8filltheheart]

Dd created her own coping plan. She would spread work out over weekends and all summer. We laid out goals and long term plans, but when things were done was completely flexible. She might have slept all afternoon and then worked early evening, etc.

[Kfamily]

I'm sure that those more experience than I will offer some great advice. I love that about this forum. :)

 

I think you could drop foreign languge for this year...you stilll would have two more years to meet that requirement. And if you needed to you could always take these at the CC for dual -enrollment her senior year,completing it in one year instead. 

 

If it were me, I'd focus on math and science, read an assortment of books from history and literature, write a couple of essays, watch as many documentaries and lectures as can be enjoyed and let her creatively write at her pleasure. 

 

I'm so sorry that your family is going through this. I have learned from my older daughter that while our envisioned hopes for their education might end up being different from what we had planned, it does not mean that their life is so severely altered. My older daughter just struggled too much in math to achieve the full experience of going away as a freshman to a university. She also has some minor anxiety issues. But, in the end, she's doing well at the local CC, she'll be a sophmore this year, and can transfer into any main state university from it. Math is still her struggle, but we're working on it. She loves to write too and I think she'll get there in the future. Young people are resilent and can adapt as needed. 

[Guest2]

Hugs! If it helps, our experience was that the time working on Math was actually wasted time. My DD1 had lots of foggy thinking with her illness and the retention was such that we might as well have not done it. Later,when she was better, she did extremely well at her CC classes including calculus(although it is still not her favorite).

I would let your daughter do what she loves ! IMHO there is some mind body connection and it sure wouldn't make someone worse to have some joy in her life.

[Julie of KY]

My daughter was in middle school so we didn't feel the need to get everything done.

 

My daughter is also like yours in that she loves creative writing. Often that would be the only thing she felt like doing. I prioritized math as I didn't want her to keep getting further behind. We didn't do math everyday, but if she felt capable of doing any serious work that was first on the list. She would just do the next lesson without regard to the speed we were working through the book. The rest of the subjects were then also prioritized and I cut absolutely everything that I could so that school wouldn't take up all her good time, but she might have time for something fun as well. 

 

She did listen to a lot of audiobooks, watch teaching company videos, watch other video science, etc. This kept up a lot of learning in a low effort manner. I never tried to get a weeks worth done in a week, but simply said work on the next day's work when capable. We still take off school most of the days that she goes to the doctor, but they are out of state appointments so take a chunk of our time.

 

This is the first year in many that we are starting out and I think she will be able to (mostly) be able to keep up with her work.

[Chrysalis Academy]

I think we could pull off math, english, psychology, creative writing, and health/PE (PT focused). Spreading things out, working when she has the juice.  That feels doable. It would put her a little bit behind, but not irrevocably so - we could make up science and FL credits later at the CC in semester-long classes.

[Zoo Keeper]

First off, :grouphug:  to both of you.

 

I do not yet have a high schooler with a chronic illness; one of my sons has chronic pain issues that have been plaguing him for five years now.  He is going into 6th grade this year, and it took him 2 years to finish one of his earlier grades.  The best thing I have done for him is  gift of time.  His schedule has a  smaller amount on it (compared to his siblings at that grade /age), and he has more time in which to do it.  For his scheduled  school, we are the  tortoise, not the hare--but I have left enough time in this school day for him to be the hare in something, if he has the inclination that day. We do plug away in skill subjects at a consistent pace, but I allow more flexibility in content subjects.  

 

I know high school is harder because everything counts...it goes on THE TRANSCRIPT.... :scared: ... I am planning on making sure he gets what he needs at a pace that works for him.   And in order to do that, I know I'm going to have to just check the box on some subjects.  Lower the bar *in some subjects* so that he has room for passion in other areas. Not everything has to be AP or CLEP worthy.   I remind myself that if he were going to any other school, he would probably need some sort of assistance.   Not because of intelligence, but because of stamina--the ability to consistently keep the pace.

 

He has been my child who has most benefited from CM/Circe type schooling--shorter, focused lessons, with more white space to think, read, dream. be bored, make connections. Even as he gets older.    When I start to hyperventilate about  his schooling, listening /reading  to Andrew Kern's ramblings and then SWB's audios helps me realize that school outside the box (even the usual homeschool box ) is okay.  ;)   Education is flexible.

 

Again, :grouphug:  to you as you travel this road. I know there are many on here who have BTDT and have better advice on how to put things together. 

[JennW in SoCal]

Don't worry about the transcript. Don't worry about what you thought high school should look like. Do what fits the kid in front of you. It is so much harder than it sounds! I didn't organize our school into tidy transcripts until the summer after junior year. The world didn't end, and I have 2 gainfully employed college graduates.

 

Let her write as much as she wants and read what ever she wants. On her good days you can always add in audio books, some Great Courses or documentaries, and good movies.  She has a terrific foundation thanks to your passionate dedication, so you aren't losing anything by "unschooling". 

 

 

[RegGuheert]

What would you do in this situation? Forge ahead trying to put together reasonable credit-worthy classes? Take the year off and just let her write? Or something in between? Seriously, I'm interested in advice, suggestions or experience anywhere along that spectrum. I'm really having to face the fact that this is our reality, it's not going to just go away, so we need to face it and have a plan for dealing with each day as it comes, while keeping an eye on the future.

I'll tell you what we did with DS17 when he was going through this:  School continued, but at a reduced pace and with lowered expectations.  He spent some of his effort in speech and debate writing about the disease.  This was beneficial since it helped him to understand what was going on and also helped him to become an advocate for those who needed assistance.  I reference his speech on this board to this day.

 

But here are two important facts related to DS17:

- We decided to delay his graduation for one year.  He is an excellent student and is doing well now, but we felt he was a bit behind where he needed to be for college.

- His Lyme disease seemed to retard his learning development somewhat and created some "habits" for lack of a better word.  He was stuttering rather severely and he developed a quick temper.  Those are mostly gone now, but it did take some time.  We feel that his educational development for the first few years after treatment was a combination of normal development and recovery from the effects of the disease.

 

Personally, I don't think taking a year "off" would be healthy.  We worried that DS17 was going to feel he had failed in some way.  It was a bit discouraging for him, but I do think that seeing that he was able to continue to do school and progress was an encouragement to him.

[HollyDay]

Lots of breaks.  Focus on finding curriculum that meets learning style.  We found using the computer for some subjects helped.  Some days are better than others, but still take breaks and be mindful of stress and focus levels.  Find what balance works.  We could get some done around breakfast time, then shower/dress and get another done.  We also found that dividing math and science helped.  Not doing those back to back, but taking a break or switching subjects would help

[regentrude]

I do not think that attending the CC is a good strategy in her situation, because that will not allow her to adjust the work load on a day by day basis depending on how she feels. She will be forced into a rigid framework of courses and deadlines. I would embrace the freedom homeschooling high school gives you to accommodate her health.

 

I would

• go bare bones and choose the easiest level coursework that will pass for high school. You know that I am not normally one to advocate compromising on rigor, but these are special circumstances. She can always delve deeper later when she is recovered.
• make sure to do math as regularly as possible because that needs to be done on a continuous basis. Better do 20 minutes daily than two hours every other week.
• continue Spanish as well; however, evaluate whether doing more than the required minimum in the foreign language is a good use of her energy.
• get very creative with English and have her unschool. If she writes a lot and reads, she will be fine. Add some formal writing assignments when her health permits. You don't need large numbers.
• select a history program that is engaging and easy to handle when sick, perhaps basing it strongly on audio lectures and documentaries. Do as able.
• select a straight forward, no frills, basic science. No honors, no dozens of worksheets. Read, comprehend, simple problems, done. Conceptual Chemistry and Conceptual physics are nice approachable texts. Do as able.

I would not worry about the transcript. Do what she can manage and decide later whether she needs more time in high school, or whether you can package what she did.  If I had to pick up one thing to focus on, it would be math, because gaps and breaks there will make it difficult later on. A literate person can easily catch up on history and science later.

Best of luck.

Edited August 15, 2017 by regentrude

[Pen]

My vote is: Take the year off.  If she wants to do creative writing or whatever, fine.  But focus on health.

 

She won't be irrevocably behind academically. And one year especially won't make a huge difference to her academic life.  OTOH one year of rest and no stress over anything that is supposed to be being done could make a huge difference to her recovery.  

 

If she has not started to make some recovery by next summer, or at such points as you have a realistic diagnosis and prognosis then make changes as fits the diagnosis/prognosis or the possibility of coming to terms with how to live with long term chronic illness.

 

 But for now I'd put the emphasis on giving her body a chance for self-healing by not pushing for any academics at all.

[8filltheheart]

I do not think that attending the CC is a good strategy in her situation, because that will not allow her to adjust the work load on a day by day basis depending on how she feels. She will be forced into a rigid framework of courses and deadlines. I would embrace the freedom homeschooling high school gives you to accommodate her health.

 

I would

• [*]go bare bones and choose the easiest level coursework that will pass for high school. You know that I am not normally one to advocate compromising on rigor, but these are special circumstances. She can always delve deeper later when she is recovered.

....... A literate person can easily catch up on history and science later.

Best of luck.

  

My vote is: Take the year off.  If she wants to do creative writing or whatever, fine.  But focus on health.

 

She won't be irrevocably behind academically. And one year especially won't make a huge difference to her academic life.  OTOH one year of rest and no stress over anything that is supposed to be being done could make a huge difference to her recovery.....

 

 But for now I'd put the emphasis on giving her body a chance for self-healing by not pushing for any academics at all.

I think the answer depends on the personality. My Dd would have become very depressed and would have felt defeated and unable to pursue any of her adulthood goals if she had taken a full yr off. As it was, she would beat herself up on the days she couldn't think straight and couldn't accomplish anything. She mentally wanted to be a "normal" high school teenager. It was bad enough for her that she was so sick. Allowing her to set her own long-term and daily goals at least let her feel like she had some control over something in her life when there was so much out of her control.

 

Fww, I really worry about what will happen if she goes into a full blown flare at school. I am not sure how she will even begin to cope. I agree 100% with Regentrude that DE is not an option I would pursue.

[Chrysalis Academy]

I do not think that attending the CC is a good strategy in her situation, because that will not allow her to adjust the work load on a day by day basis depending on how she feels. She will be forced into a rigid framework of courses and deadlines. I would embrace the freedom homeschooling high school gives you to accommodate her health.

 

I would

• go bare bones and choose the easiest level coursework that will pass for high school. You know that I am not normally one to advocate compromising on rigor, but these are special circumstances. She can always delve deeper later when she is recovered.
• make sure to do math as regularly as possible because that needs to be done on a continuous basis. Better do 20 minutes daily than two hours every other week.
• continue Spanish as well; however, evaluate whether doing more than the required minimum in the foreign language is a good use of her energy.
• get very creative with English and have her unschool. If she writes a lot and reads, she will be fine. Add some formal writing assignments when her health permits. You don't need large numbers.
• select a history program that is engaging and easy to handle when sick, perhaps basing it strongly on audio lectures and documentaries. Do as able.
• select a straight forward, no frills, basic science. No honors, no dozens of worksheets. Read, comprehend, simple problems, done. Conceptual Chemistry and Conceptual physics are nice approachable texts. Do as able.

I would not worry about the transcript. Do what she can manage and decide later whether she needs more time in high school, or whether you can package what she did.  If I had to pick up one thing to focus on, it would be math, because gaps and breaks there will make it difficult later on. A literate person can easily catch up on history and science later.

Best of luck.

 

Just to clarify, I'm not suggesting that she will do DE now while she is so sick! I'm thinking - hoping? fantasizing? that we'll figure out what's up, treat it, she'll start to feel much better, and then DE during her last year or two could allow her to rack up sufficient credits relatively quickly, with semester DE classes counting for a full high school credit.

[8filltheheart]

Just to clarify, I'm not suggesting that she will do DE now while she is so sick! I'm thinking - hoping? fantasizing? that we'll figure out what's up, treat it, she'll start to feel much better, and then DE during her last year or two could allow her to rack up sufficient credits relatively quickly, with semester DE classes counting for a full high school credit.

I assumed that is what you were thinking. Our dd's health issues has totally skewed my perspective. Hopefully, S's wont follow dd's, but based on hers, I wouldn't plan her future high school coursework around that option. She is a 10th grader. It could take months for an accurate diagnosis, months of messing with meds, etc. Recovering their energy and mental clarity can take months on top of that. (And unfortunately, that is a better scenario than our dd's. Getting into drs, finding drs that actually know what they are doing, finding meds that work and yet don't make her feel worse than she already does.....that has been a nightmare.)

 

I would help her find her own balance. She is old enough to know that she can't just write even though that is what she finds joy in. She needs to figure out how to juggle her limitations with her own energy reserves. This could be a lifelong skill she needs to master. Help her set baby step goals and encourage her to take ownership over how she gets there. Seeing even minor goals being accomplished can be a huge mental success. That is a hurdle in and of itself.

 

Is it possible for you to design some of her courses around topics that will enhance her writing and help keep her motivated? For example, studying Russian and French history and fairy tales and cultures fed on my dd's love of languages. Are there topics that studying/researching will help her with her stories' developments? Can you turn those into credits? (Science, history, culture, art, architecture, clothing styles....any of those can be niche studies that might help her storylines.)

 

Can you incorporate audios into her day when she doesn't have enough energy to read? (We had to get some books on audio as Dd read along bc it helped her keep her focus.) etc.

[Liza Q]

My daughter was - is - in a similar - well, maybe not similar, but definitely difficult! - situation. She was cutting/threatening suicide and then was diagnosed with anorexia at 14. After several months of an Outpatient program, they decided that it wasn't anorexia at all. We found that she had celiac disease and eosiphinilic esophagitis and multiple food allergies, as well as some OCD issues, misophonia, depression, anxiety. After her experience with the op program she has been reluctant to go to any more therapy and quit as soon as the therapist agreed that she wasn't in any danger, was gaining weight, etc. She refuses to get any kind of help - frustrating. But she manages her diet well now and things have gotten much better. She's exhausted a lot and it is hard to tell how much is her health and how much is depression...they feed each other. She doesn't really like us...but, again, things are better than they were.

 

She lost most of 9th grade and we started trying to catch up in 10th grade. We used a combination of The American School and courses that I designed to get the minimum done - NY has a specific amount of classes for homeschoolers and it is pretty minimal. She was on track to complete everything but fell behind in the spring of 12th grade. Her last 2 classes - a 1 semester Astronomy course and 1 semester Economics course - were just plain more work than she felt she could handle, although I had designed them to be the bare minimum. I told her that she could finish or take the TASC (GED style test in NY) and she chose to take the test. She was required to take a 12 week class before she could take the test and it was hard to organize, as she was barely 18 and NY reallly realllly doesn't want kids taking the test that young. Anyway- she took the class in the fall after her senior year and it was really good for her. She passed the test on her first try (the math was a real challenge), got the results this past January, and is scheduled to start at the CC this fall. She has been dragging her heels and is taking the placement tests tomorrow. We told her that we she doesn't have to go and can work instead for a while so we will see if she actually registers for classes. We suggested that she only take two classes and see how she handles them.

 

Her dream has been fashion design and we had her take Saturday classes at a great school (FIT) all through High School. No matter how miserable she felt she got her work done and it was the bright spot of her life! But she couldn't apply for FIT for this fall as the TASC results came after the application deadline. She has agreed to try the CC and work on her FIT app this fall. She does some volunteer work right now. She could be taking no credit classes in the evenings at FIT but she has been resistant...I think she views it as an admission of failure, taking adult ed classes instead of "real" classes.

 

All this to say - this is how we handled High School with a child with a lot of issues. It was not as successful as I had hoped it would be, but she reads well, can write an organized 5-paragraph essay, do MLA citation, and knows a bit about history and science and art and literature. She will need remedial math but it could be a lot worse! Four years ago I was worried that she wouldn't make it to 18.

[scrapbookbuzz]

I deal with chronic illness myself and Aspergers and dyslexia in my daughter so, while not the same as your situation,

maybe a few insights that might help your dd. Use it how you will.

 

*First, make sure she understands that it is OKAY to let herself rest when she literally, "just can't do it."

*Second, it's NOT okay, ever, to use it as an excuse to not do something. there is a difference to truly not being able to do a thing at that moment

than saying, "I can't do it" just because you don't feel like doing it. (I still struggle with this.)

 

Look at some online courses that are self-paced, like this one.

 

And some other resources here.

 

Hope you figure out a good plan!

 

Just remember, HEALTH is everything, so that needs to be dd's first focus - listening to her body and giving it what it needs.

then, on the days her brain will cooperate, focus on her schooling, as she can.

[GoodGrief]

Ultimately, I think she just does what she can do and you maintain a flexible plan. She may require extra year(s) to get through high school, and that's okay.

 

If it was me (and I have been there in a sense, though my daughter's illness was different), I'd be keeping things simple. I wouldn't be worrying so much about completing the most challenging curricula, but would be gently moving her through checking off boxes on the basic high school subjects. And I think the hours spent on creative writing are fine.

 

I might try to identify a couple of hours during the day when she was typically at her best and have her work on the non-writing subjects during that time? But it really would depend.

 

Best wishes to all of you. I hope you see the light at the end of the tunnel sooner rather than later.

 

 

[Pen]

  

I think the answer depends on the personality. My Dd would have become very depressed and would have felt defeated and unable to pursue any of her adulthood goals if she had taken a full yr off. As it was, she would beat herself up on the days she couldn't think straight and couldn't accomplish anything. She mentally wanted to be a "normal" high school teenager. It was bad enough for her that she was so sick. Allowing her to set her own long-term and daily goals at least let her feel like she had some control over something in her life when there was so much out of her control.

 

Fww, I really worry about what will happen if she goes into a full blown flare at school. I am not sure how she will even begin to cope. I agree 100% with Regentrude that DE is not an option I would pursue.

 

1st bolded: I think the answer of what should be done, what can safely be done, depends mainly on what the illness is, and in OP's dd's  case that is not yet known. Secondarily, I'd agree that there is a personality component, but IME it isn't the primary issue.

 

What illness did your dd have?

 

2nd bolded:  I agree that OP's dd should be allowed to do things she can do and wants to do such as write etc.   And she can set goals for herself ... However, her health may have changed such that goals that seemed reasonable 2 years ago are not reasonable now.  My sense of OP's DD is that she tends to be fairly driven in personality and likely needs to have pressure -- both external and internal -- relieved as much as possible to give her own body as much a chance for self-recovery, self-healing as possible.  

 

1 year likely puts her into either a "normal" age for her grade if I correctly recall that she is my ds's same age, or maybe a one year redshirted type age...but in any case not in any way dreadfully behind "normal."  I think people in our society are used to taking a pill and being all better.   To going to work and to school while sick, etc. But once upon a time people who broke a bone had to lie with it still till it could heal. People who got many types of sicknesses had to be homebound till better. There are many writers who apparently had such situations where being in bed sick at some point as kids led them into writing rather than other activities.  

[GoVanGogh]

My DS has cerebral palsy. Academically, he is very bright. But some days his brain doesn't wake up when he does. And he tires easily - neurologically and physically and needs lots of downtime.

We use the peck-away theory to schooling.

We school off and on year round. And DS does school off and on through the day. Neither were really intentional plans, just the way our schedule has evolved over the years.

DS often does school 9-12 in the morning. He has therapies 1-2 times a week early afternoon. On those days, he may be done for the rest of the day. If not, then does school (math) between 5-6. He and his dad then go over math in the evening, generally 8-9 pm. They catch up on the weekend with any math missed during the week.

I squeeze in documentaries a few times a month after supper time. We read and discuss current events via email or over supper. We take educational vacations.

It is more of a lifestyle choice for us, but we have had years to get here, which I realize is vastly different from you situation.

We do know that DS may need extra time to complete high school credits. But he has already passed the accuplacer tests for community college, so our backup plan is for him to go to community college then transfer to university. We have some options available, which gives me peace of mind.

I know several have said to forget about the transcript right now, but I found sitting down and working on the transcript to be reassuring to me. I looked at it like a puzzle and decided what worked in where. DS self studies in several subjects related to the field he wants to go into. We keep track of his progress and every so often decide that he has met enough requirements for 1/2 credit elective. That has enabled me to take some subjects off our school schedule.

Hugs to you!

[plansrme]

I have no suggestions as to the questions you've asked, but it might be encouraging for her to read about Laura Hildebrand, who has chronic fatigue syndrome and has, nonetheless, managed to write a wee bit.  I've seen interviews in which she talks about how she structures her days to preserve her energy to write, but it's been a while (probably when Seabiscuit was new), so I don't remember where they were.  Google would surely know.

[Elise]

I'm so sorry that you and your daughter are going through this. I hope that you are able to find a diagnosis and treatment and that she can feel some relief soon!

 

Our dd became sick about one month before 10th grade began. We had already planned out our entire year, full of tough, ambitious stuff - and then everything changed in the blink of an eye. At first we thought it was something temporary, so we just limped along trying to keep lots of pots on the stove. And then as months went by and she became worse, we went into full-blown survival mode. She has always been a very intense person, and this setback was incredibly frustrating to her - so we decided that with whatever strength she had, she would pursue those things that mattered to her and made life beautiful. Her favorite things are math, Russian, and Japanese, so that's what we did for school (and then whatever else she felt like doing if she had any energy left.) We went from Plan A to Plan B to Plan Whatever! Some days she didn't move from the sofa, and I brought all her drinks and meals and all she could do was watch Teaching Company lectures. (I'm pretty sure she slept through many of them!)

 

Luckily, once we had a diagnosis and began treatment things began to turn. Her stamina increased little by little, and she was able to add things back in slowly. I don't feel in any way that the time taken off from the other subjects impacted her negatively. By concentrating her efforts on things that mattered to her, it lifted her spirits and helped her recovery - I truly believe that. She is doing much better now, although she has hit some bumps and probably will continue to, but more than anything my hope for her was that she would see that she could have a good life in spite of being dealt a bad hand. It took a while for her to truly feel that - but now she does. She is leaving for college next week (not too far away) and will be doing some really incredible things. I am so happy for her! (And nervous.)

 

My advice would be to do whatever you feel would most aid her recovery. If you feel like writing is her lifeline, then definitely do it! For our dd, forward movement was important psychologically (lying in bed gets really old after awhile), so we picked a very few doable things and celebrated small achievements. Most of all, just love her and be there for her, as I know you are already doing. Get her involved in counseling if you think that would help. Dd and I would have a routine on really bad days where we would call everything off and watch Lord of the Rings - and it helped to take the sting away. Contrast that with today: we were out all day dorm shopping, etc. - the right treatment can make such a world of difference.

 

Sending my very best wishes to you and yours - for healing, recovery, and hope.  :grouphug:

[8filltheheart]

1st bolded: I think the answer of what should be done, what can safely be done, depends mainly on what the illness is, and in OP's dd's case that is not yet known. Secondarily, I'd agree that there is a personality component, but IME it isn't the primary issue.

 

What illness did your dd have?

 

2nd bolded: I agree that OP's dd should be allowed to do things she can do and wants to do such as write etc. And she can set goals for herself ... However, her health may have changed such that goals that seemed reasonable 2 years ago are not reasonable now. My sense of OP's DD is that she tends to be fairly driven in personality and likely needs to have pressure -- both external and internal -- relieved as much as possible to give her own body as much a chance for self-recovery, self-healing as possible.

 

1 year likely puts her into either a "normal" age for her grade if I correctly recall that she is my ds's same age, or maybe a one year redshirted type age...but in any case not in any way dreadfully behind "normal." I think people in our society are used to taking a pill and being all better. To going to work and to school while sick, etc. But once upon a time people who broke a bone had to lie with it still till it could heal. People who got many types of sicknesses had to be homebound till better. There are many writers who apparently had such situations where being in bed sick at some point as kids led them into writing rather than other activities.

 

Not that any of this is relevant to Rose's dd. She needs to help her Dd find her own feet and and way to cope. With my kids, protecting their teen/young adult psyche is just as important as their physical health. Finding a path that helps prevent depression is important and with mine, not feeling like an invalid has been a huge part of that.

 

My Dd didn't have an illness (past tense). Unfortunately, she has a chronic autoimmune disorder that has totally changed her life. Again, unfortunately, she is not my only one. Her older brother also has a chronic autoimmune illness that at one pt left him in the hospital close to death. The whole psyche thing has been far more of a challenge for him than for my Dd.

 

I discussed my post and yours with her bc I wanted to understand her thoughts. She said that it is complicated. She said she didn't want her illness to define her. While school stressed her, it was also something that she could control. She had long term goals that she wanted to achieve and baby steps toward them kept her more mentally positive than not.

 

For my kids, developing lifelong coping strategies matters bc their problems are not going to go away. Their meds can help control the symptoms until they don't, but their meds also impact their daily lives as well. Right now my dd has learned that certain meds make her mentally foggy. Others she has to take on Friday night bc she knows she will feel sick the entire next day. Knowing how to continue functioning while coping with her symptoms is a life skill that I am glad she started to manage in high school bc she is going to need those skills every day of her adult life.

 

Depression in a sick teen a very serious concern. I would want my teen as involved in all decisions as they are possible in taking on.

[Pen]

Not that any of this is relevant to Rose's dd. She needs to help her Dd find her own feet and and way to cope. With my kids, protecting their teen/young adult psyche is just as important as their physical health. Finding a path that helps prevent depression is important and with mine, not feeling like an invalid has been a huge part of that.

 

My Dd didn't have an illness (past tense). Unfortunately, she has a chronic autoimmune disorder that has totally changed her life. Again, unfortunately, she is not my only one. Her older brother also has a chronic autoimmune illness that at one pt left him in the hospital close to death. The whole psyche thing has been far more of a challenge for him than for my Dd.

 

I discussed my post and yours with her bc I wanted to understand her thoughts. She said that it is complicated. She said she didn't want her illness to define her. While school stressed her, it was also something that she could control. She had long term goals that she wanted to achieve and baby steps toward them kept her more mentally positive than not.

 

For my kids, developing lifelong coping strategies matters bc their problems are not going to go away. Their meds can help control the symptoms until they don't, but their meds also impact their daily lives as well. Right now my dd has learned that certain meds make her mentally foggy. Others she has to take on Friday night bc she knows she will feel sick the entire next day. Knowing how to continue functioning while coping with her symptoms is a life skill that I am glad she started to manage in high school bc she is going to need those skills every day of her adult life.

 

Depression in a sick teen a very serious concern. I would want my teen as involved in all decisions as they are possible in taking on.

 

 

OK. I get that.

 

My views are based in part based on my own experience, having been sick with essentially identical symptoms to what have been described for Rose's dd, and in part based on what I know about Rose's dd.

 

IF Rose's dd has Lyme disease (and/ or some other similar possibilities and/or co-infections) which I think is highly possible though not yet known, that may actually be curable such that she may be able to become WELL, all better, or at least close to all better, rather than chronically ill or even disabled for life.  Or certainly at least it may be able to be significantly improved, rather than moving in a deteriorating health direction.  In other words,  Rose's dd may be in a very different situation from people who have something that is probably permanent--like autoimmunity or cerebral palsy, etc.  And from my own experience, I believe that trying to do too much while sick may lead to life long  disability as genetic tendencies toward something like autoimmunity may be triggered, or mitochondrial dysfunction CFS etc. may result. Or more than one thing can happen..  

 

I agree with you about depression being very serious itself, and recognize that it is a likely result of being ill, possibly even one of the effects of illness that Rose's dd may have due to CNS involvement, as well as emotional reaction to limitations.

 

However, I believe that Rose's dd is really in a pretty good position to be able to be moving toward at least one of her own potential personal aspirations (writing), while still taking off from regular school demands so as to let her body, brain, etc.,  be able to self-heal as much as possible.

 

 

 

If they learn that what she has is not a potentially curable problem like Lyme disease, then based on what is learned, then, yes, I agree that lifetime coping strategies, etc, would be needed.  Same if it is potentially curable, but does not end up cured in her case after appropriate treatment. However, from my own experience of working through possible Lyme or similar, I'd be very concerned that if that is what Rose's dd has, not taking time off now, she could more likely end up with a situation like mine, where a possible genetic tendency toward autoimmunity gets triggered, where mitochondria gets wiped out, or similar problems that lead to far more long term disability, pain, etc. so as to cause the need for lifetime coping strategies, instead of the possibility that if time were taken now for healing, her current problems may not end up being lifetime ones.

[Pen]

adding to my above reply:

 

I was taking into account Rose's own description of her dd's emotional views:

 

 

"Some days she can't write at all. Last thing I want to is insist that she always, every day, use her energy on math and english and spanish, because if she has nothing left for writing, she'll be miserable. Even more miserable than she is now.

 

"What would you do in this situation? Forge ahead trying to put together reasonable credit-worthy classes? Take the year off and just let her write?"

 

 

So far as I can tell, the dd herself would want to take off and write. That is what would keep her from being miserable.  It is Rose who is wondering if she should be pushed to forge ahead for credit-worthy classes, not the dd who is begging to do that.  If the dd were begging to forge ahead on credits, insisting that that is what she wants, I'd still suggest cautioning the dd that the short term forging could increase long term issues, and maybe better to take it easy for a year.  But that doesn't even sound like what the situation is.

 

Even with writing, I'd strongly suggest that at this point the dd be told not to do it to the point that she "has nothing left" in terms of energy etc.  That she should be doing a little less than she can even on favored activities and trying to bank up some reserves, not running herself into ground, even if it seems to take almost nothing to get depleted.

[Chrysalis Academy]

First day went well! We did everything on the schedule except exercise. I need to focus on making that a daily reality, even if it is short, as that is going to be critical for her recovery. Once we get that in place we might even be able to add back in a few things. I did a good job of cutting to the bone so that we have room to expand (and can feel successful) rather than trying to do too much and feeling like we're failing.

 

Fingers crossed.