setting priorities

[devballmom]

Hi All,
I'm writing for some words of wisdom to share with my 14-year old son with CF, diagnosed at 6-months.

Here's the deal, my son set some high goals for himself, which I think is great. He tests at a gifted level and truly wants to attend a top math/science university (which means he needs to achieve top grades in HS). He also loves baseball and plays on a competitive traveling team (which means he is often investing all day both weekend days on the baseball field).

The problem? Trying to keep up with school AND baseball AND get enough rest doesn't seem to be working. His grades are slipping, he's getting sick. What would you do?

I think it is time to set priorities, and come to terms with the limits CF sets. Also, rather than just get down about that, I'm thinking it really is possible to find ways of meeting needs for sports and fun that don't push to the edge of limits quite so much.

You all are teens, and can appreciate the things my son is thinking about more than I can. Is this something you are dealing with? Can you share some insights?

Thank you!

 

[Aboveallislove]

Dear Mom,
Saw your other note. Here are a few initial thoughts. First, if you haven't read Lisa Greene's Parenting Children with Special Health Conditions book I'd get it today and read it! It's a fast read and you can use so much of it for this discussion, because I can tell you what as a 45 year old mom I would do if I was 14 and had the knowledge I have now, and could craft what I think is a perfect solution, but I think that part of it is helping your son figure this out on his own, by asking questions. I've notice your grades are starting to suffer. Have you thought about how that will affect where you go to college? Or, have you thought about other areas to study since with lower grades it will be harder to get into a good science/math program? It seems that you are having a hard time keeping up with everything, would it help for us to brainstorm solution. The difficulty is that baseball gives him exercise, is something he loves and gives him a great companionship and "normalacy." So while on paper "give that up since that ain't your future" sounds good, not sure if that makes the most sense. Another option could be altnerative schooling/homeschooling/on line academies so he isn't wasting a bunch of time (absent he's at a very prestigious school), and then he can focus more on schooling and keep baseball going. Or it could be he revisits his higher education goals and decides that you know I'd rather go to a middle-tier school and do well there and still get a great education etc. Does this make sense? And i think you need to focus on asking the questions and having him come up with the answers. It is a hard balance for anyone, but add to it the CF stuff and it is every more of a challenge.
hugs

 

[devballmom]

Thank you so much for your thoughts. It was very helpful to be reminded that baseball is important to the total picture too. And that some ideas sound better in theory than they actually are in practice.

I spoke to my mom too, a lifelong teacher who spent part of that time in special Ed. She added that we should explore additional accommodations (like study period instead of PE when he's sick, and more flexible deadlines) using 504 Plan. Do you have any experience with these?

P.S. I got the book u suggested too. Thnx!

 

[Aboveallislove]

No experience with 504. although worked on some legal cases of IDEA, but ages ago. I think that additional accommodations at school might help, but if he is doing sports the school is going to claim (and rightly so) if he has time for travel, etc. he has time to get his assignments done. But it can't hurt to try and some things will be very easy to get, ie PE substituted for study hall, and obviously if missing school extended deadline. Your CF clinics social worker might be able to help on some ideas for 504 changes. And also, I'd suggest your son brainstorm--again make this his problem to figure out how to address (good practices for addressing issues in college when he has flare-ups). So instead of saying we're going to get your 504 changed, ask him if he had thought of how to balance everything? Would you like some ideas? Well some students find it helpful to have a 504 plan in place to make acommodations. What do you think would work?

I guess personally I think an "alternative" school would be attractive, but I'm very much "classical education" oriented, which isn't really available absent home school/on line, etc., and that would be without the CF issue, but with CF it just makes so much sense to me. Hopefully, something will work out.

 

[TreasureGoddess]

We've had good luck with the 504 plan. I'd say talk with your CF center's social worker and ask her for a sample or to draft a letter with suggestions of items to include. My son is 13 and very into basketball. It sometimes comes down to the fact that he's missed almost all week of school but gets to play in the BB game on the weekend. It was getting to where he could overcome the feeling bad enough to play the good stuff, but not overcome enough to sit in a class at school. Makes sense, but he didn't even see it until we talked about it. I'm of the opinion that education is great, but really you're not getting a lot of that in middle school. We sat & talked & brainstormed and came up with a plan. My kiddo has to at least go and try to make it through part of the days if he wants to earn his basketball. The sport is the one thing that makes him feel normal and socialized and all that. Often when you miss a lot of school you feel out of it when returning as you don't know what project they're working on, or assignments include things that he didn't know about from not being in the room when things were explained, etc. We're looking at doing a combo of online or homeschool in high school should we need to.

For now, one thing that's helped a TON is my kiddo dropped band (one of his electives) and in place of that he goes into the nurse each day and has a vest treatment and does his morning pulmozyme nebulizer in a private area of the nurse's office. I didn't want to take away PE as any exercise he can get helps keep lungs clear, digestion moving, etc. He just works with his coaches/teachers to modify the level if he's not feeling up for full activity.

We have a tutor (my retired aunt) that was a math teacher. She keeps him up to date on math topics, which is very important. We read a lot on days he's home and just don't worry too much about the science, english, etc. I know that's probably not good, but as long as math and reading are up to date, the rest should fall in line in high school.

 

[Beccamom]

My daughter has a 504 plan and I highly recommend it. She is also gifted by IQ and excellerated 2 grades in math before her health had a significant impact on her school work. She is 13th and in 8th and 10th grade middle school half day and high school half day.

One accommodation she has that has been extremely helpful is she has a ditto her guidance counselor created and when she is absent the teachers must write her make up work on it. Anything not written she is not responsible for. For example, if a test is given and they never gave her the movie to watch and then try to ask questions on the movie those questions are removed from the test. I find she gets less make up work and most importantly she is sooo much less stressed about makeup work. In addition for known absences for medical appointments I have to E-mail the teachers 2 days ahead of time and then the day before she misses class the teachers must write on the ditto her makeup work. They have no option to add to the work when she returns. This way I make doctor appointments on Fridays and she returns to school Monday all caught up.

Best wishes

We've had good luck with the 504 plan. I'd say talk with your CF center's social worker and ask her for a sample or to draft a letter with suggestions of items to include. My son is 13 and very into basketball. It sometimes comes down to the fact that he's missed almost all week of school but gets to play in the BB game on the weekend. It was getting to where he could overcome the feeling bad enough to play the good stuff, but not overcome enough to sit in a class at school. Makes sense, but he didn't even see it until we talked about it. I'm of the opinion that education is great, but really you're not getting a lot of that in middle school. We sat & talked & brainstormed and came up with a plan. My kiddo has to at least go and try to make it through part of the days if he wants to earn his basketball. The sport is the one thing that makes him feel normal and socialized and all that. Often when you miss a lot of school you feel out of it when returning as you don't know what project they're working on, or assignments include things that he didn't know about from not being in the room when things were explained, etc. We're looking at doing a combo of online or homeschool in high school should we need to.

For now, one thing that's helped a TON is my kiddo dropped band (one of his electives) and in place of that he goes into the nurse each day and has a vest treatment and does his morning pulmozyme nebulizer in a private area of the nurse's office. I didn't want to take away PE as any exercise he can get helps keep lungs clear, digestion moving, etc. He just works with his coaches/teachers to modify the level if he's not feeling up for full activity.

We have a tutor (my retired aunt) that was a math teacher. She keeps him up to date on math topics, which is very important. We read a lot on days he's home and just don't worry too much about the science, english, etc. I know that's probably not good, but as long as math and reading are up to date, the rest should fall in line in high school.