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WARNING RANT AHEAD

Today was T's annual 504 meeting at school. Counselor asks T how she is feeling. T said, "good". Even though she on and off has pain, stomach distress and nausea. But I get it, no need to go into details...not missing school, competing school work, straight A's, so basically good.

We were going through each of the accommodations and the counselor asks T, "have you ever used this one" for each and T answers, "no". So the counselor says and I swear she said this, "Oh o.k. great so how about we take this one out". And Pilgrim thought her head almost exploded? I think my head spun around three times before it exploded! But I calmed myself down and figured maybe she just doesn't know the unpredictable nature of IBD and decided to school her...nicely....well as nicely as I could...and I swear she said, "that's nice but I am going to take this out and if you find a need in the future to put it back in we can".

ARE YOU SERIOUS?

We are talking things like self monitoring for gym (which she has NEVER done because she is a jock and LOVES gym). I tried to explain that taking it out means if she ever needs it she has to suck it up and participate until a time when we can get an appointment to ask for it to be put back in. Which can take a week or two (3000 kids in the high school and only 5 counselors so do the math). What sick kid needs that pressure?

Also tried to take out self monitor for assignments...sure cuz if the kid is in the bathroom writhing on the floor all night they should have to worry about going to school without their assignment and hope to heck that they can get a 504 appointment and a new document sent to the teacher same day.

Yeah, I left the office refusing to sign any changes to her 504 and not hungry for lunch because I just ate a very green and uncooperative counselor!

The kid has never, ever taken advantage of one single accommodation. I would venture to say that most kids on here are loathe to take advantage of their accommodations. They are some of the toughest kids anyone will ever meet. So why take them out. I could see if you felt they were abusing them but really? And yes, I would like to believe that most teachers are decent, caring humans and would entertain a conversation with a student independent of any 504 plan but we all know there is always one in the crowd. Plus T's school is ginormous and the teachers don't really get to know the kids all that well and there is a good sized population there who are always working the angles or just downright irresponsible so I wouldn't even blame them if they didn't quite buy an "I'm sick" story without an actual 504.

Just leave the 504 alone...thanks anyway! I wanna go back to my small town in CT.
 
Rant away, CIC--that sounds like a horrible meeting. T's counselor clearly doesn't understand IBD. Maybe you can share some more info with her?
 
Oh the best was when we got to assignments. It said something like, T has the right to adjust assignments to lessen her work load when not feeling well. So for instance if it is math do only half the problems or she even has the right to skip assignments. Again she has NEVER taken advantage of this. Well the guidance counselor agreed to leave it in but then said, "we usually put in there that you have to give advance notice so we will put that in". ABSOLUTELY NOT! What part of Crohn's is unpredictable do you not understand?!
 
crohnsinct,
I am sure sorry to hear you are dealing with this frustration.
When my now adult son was a young child, he was so resilient like T. He loves sports and he played at the most competitive levels that he could. I heard teachers and other parents sometimes complain about the fact that he "played in the game, but was not playing at the practice". It was the coaches and other kids who came to his defence because they were the ones who had seen him clutching his belly and laying on the bench while 'watching' the practice rather than participating in it. (And for more evidence, he had that ghostly white complexion with the big black circles around his eyes.) But as soon as he felt better he was zipping around the court, rink and field. This resiliency has really helped him with long-term schooling and playing at higher-level sports for the years that he was very healthy. Now he is ill again and the resiliency is helping him get through the long diagnostic process again while trying to work at a very intensive year-long internship that will shape his career. I don't know how these young ones do it--but they have no choice but to carry-on.

Keep up your superb advocacy for T. You are helping T learn what she will need to do for herself one day. In the meantime that counsellor had better watch out! :shifty:
 
Big hugs cic
That’s a tough one
In high school they try to pull as much as possible from the 504
At least we were told that
They even said in most cases they are always eliminating accommodations
That said they did feel Ds needed all of his accommodations plus a few more
 
And yes, I would like to believe that most teachers are decent, caring humans and would entertain a conversation with a student independent of any 504 plan but we all know there is always one in the crowd. Plus T's school is ginormous and the teachers don't really get to know the kids all that well and there is a good sized population there who are always working the angles or just downright irresponsible so I wouldn't even blame them if they didn't quite buy an "I'm sick" story without an actual 504.
Click to expand...

This is so true - and I say that as a teacher as well as a parent! You absolutely have to have 504 because there really is one tough teacher...often the gym teacher :yrollseyes: (which is just beyond ridiculous to me).

I would also say that 504s are important if your child is thinking about college -- even if you're expecting them to go to college, because they're 5 now. Most schools require a standardized test - the SAT or ACT. If your child does not have testing accommodations normally, College Board may refuse to accommodate them. Same with college - the Office of Disability Services at most schools will expect to see accommodations set up in high school, even if they weren't used regularly.

CollegeBoard also does not like to give kids extra time on exams unless there's a good reason (a learning difficulty, like ADHD or dyslexia or a physical reason). So it's good for them to see that specifically documented or explained. They refused to give extra time to my older daughter (though she got extra breaks, which was enough for her) but gave it to my younger one who had many more issues and more extensive 504 plan and a clear explanation for the accommodation (hand/wrist arthritis).

Anyway, my point is just that since getting accommodations is such a process, that you really have to set them up as early as possible - before a child flares, ideally.
 
MAYA - OMGOSH! Same here! College board denied O extra time or stop the clock testing and she was going to the bathroom like 4 times an hour. T doesn't have bathroom issues and she gets time and a half to take the test. WE didn't even request it the high school did!

The guidance counselor told T that if you get extended time and you finish early you still have to sit there until the time allotted is up. T was like, "No way, I'm out" and wanted to drop that but she is just a sophomore and I told here "No way, you never know what might happen in the future".
 
The guidance counselor told T that if you get extended time and you finish early you still have to sit there until the time allotted is up. T was like, "No way, I'm out" and wanted to drop that but she is just a sophomore and I told here "No way, you never know what might happen in the future".
Click to expand...

This is true for state testing in our state - M hated it. The state testing is pretty easy - it's like 9th grade math and English. So she most definitely did not need extra time. She actually had to get a letter to say in writing that she did not want to use her accommodations for this test and she wanted to test with her classmates - not with students who were getting 1.5x-2x the normal time.

I would agree with you - don't drop that accommodation if at all possible - you never know.

My daughter says she was allowed to leave early from AP exams (as soon as she was done) but she can't remember what was allowed for the SAT - she thinks she had to stay till everyone was done.

But she says she did NOT get extra time for the SAT (or PSAT), like I said above - she was denied but could have appealed. But she didn't really need it, thankfully, so she didn't appeal it.

I will have to check to see what she got - we should still have her letter from College Board.
 
College board denied O extra time or stop the clock testing and she was going to the bathroom like 4 times an hour.
Click to expand...

I'm really shocked to hear this - I can understand extra time because that they really do not like to give out. But extra breaks or stop-the-clock bathroom breaks?? That should be a no-brainer with IBD :eek:. I'm shocked - that was one accommodation we never got pushback for.

Poor O - she is incredibly tough. The SAT is hard enough without having to leave to go to the bathroom so much.
 
College boards won’t give accommodations unless you PROVE that you used /needed those same accommodations earlier in high school
We were told to have them added as early as 7th grade to cover for college boards later
 
504 does NOT transfer to college though
Helps some with office of disabilities but 504 is purely K-12
Not college at all
 
E received a "stop the clock" accommodation from the College Board for bathroom breaks. The related accommodation on her 504 is that she is allowed to go the bathroom at any time during her classes.

Our only issue with this has been at the school level. When E took the PSAT last year as a sophomore, her school put her in a room with people with all different types of accommodations, and then everyone in the room was given extra time. She didn't know enough to question it, and it didn't matter in the end since sophomore year is just for practice. I've since read that the College Board will disqualify results for issues like this (receiving the wrong accommodations).

This year the PSAT results matter for National Merit scholarships, and E wasn't flaring at the time of the test, so she just asked to take the test in a regular room and that wasn't a problem.

The SAT is given at testing centers, rather than at the school, so I will be sure to check in with the center ahead of time to make sure that she is given the correct accommodations.

And I know I should be responsible and talk to her school about the accommodation issues just so that they are more careful about it in the future...
 
504 does NOT transfer to college though
Helps some with office of disabilities but 504 is purely K-12
Not college at all
Click to expand...

It does not transfer automatically or anything like that. I meant that it helps with the Office of Disabilities - it is easier to get accommodations if you can have a doctor say the child (and by child I mean young adult!) has had these accommodations for years and they have helped the child succeed, and very importantly, that the child still requires them in order to succeed.

Remember that college students are not always honest - both my daughters have known kids whom faked ADHD/dyslexia in order to get accommodations at school. My daughter even dated one guy who bragged about :eek: - she dumped him the day after he said that!!

Anyway, my point is that the Office of Disabilities does put you through a whole process to register so you can receive accommodations, for various reasons. They really do want to see "proof" that you need accommodations and that usually comes in the form of documentation from the doctor. But it does help to say you've had these accommodations in high school and they helped.
 
The SAT is given at testing centers, rather than at the school, so I will be sure to check in with the center ahead of time to make sure that she is given the correct accommodations.

And I know I should be responsible and talk to her school about the accommodation issues just so that they are more careful about it in the future...
Click to expand...

pdx, She will likely be in a room of kids with various accommodations for the SAT. Most kids will have extra time instead of extra breaks for stretching (for arthritis) or stop-the-clock bathroom breaks (for IBD). My daughter took the SAT 3 times and we were lucky that it was offered at our high school. Each time she got a teacher who knew her as the proctor, which made her feel better about asking for extra breaks (familiar faces make the experience less scary I think!).
 
The weirdest thing just happened. O's nurse came for infusion. Put the IV in and mixed the Entyvio. Took the bottle and went to fill the bag or some such nonsense and the bottle exploded in her hands! YIKES! That is a VERY expensive spill.

O is supposed to leave tomorrow so they are sending another supply overnight and her nurse will come as soon as it is delivered. Good thing Entyvio infusions at home are only an hour because this kids a plane to catch and the airport is 2 1/2 hours away!
 
Jacqui,

Current times aside, being an empty nester must be giving you lots of time to rediscover your own interests! I was just getting my groove when all this started! Do you all have pickleball? It's all the rage up here! Like tennis for seniors! Lol!! Lots of fun and great exercise! I'd also started taking Bridge lessons and a friend and I were going to join a Dragon Boat team this summer... Can't wait until we can all get back to normal!!

For now, my daughter has chosen to stay home (she can't see the logic in paying for rent when it's free at home! lol), but S has been living downtown with friends for over a year now. He loves it and I can't imagine that he'll be moving back home. I miss him but, when things were normal (and I wasn't working from home), S and I would meet for lunch once a week plus he came home to visit most weekends. So, it was all good. :) Of course, miss him now but I do take him groceries every couple of weeks (an excuse to see him!) and we've been doing family facetimes to watch Netflix series together. lol (Tiger king was crazy! What bizarre people!! lol And now we've just started Waco.)

Now that some of our kids are grown and moving on with their lives, what has everyone else been doing with their free time?! (pre covid-19) (And, for those with smaller kids, cherish the time you have when they're young; in hindsight, it passes so quickly!! But, it is nice to have them as adults too! lol)
 
I've wanted to learn to play bridge for a long time. I think I definitely need to do that. 2 of my really good friends that I've known since high school we all became empty nesters at the same time so I see them a lot more now that we're not all involved with our kids' activities.
We were supposed to go on a cruise next month, it hasn't officially been cancelled but I'm certain it will be if not we will cancel just not risking it with hubby's underlying conditions.
We have several tennis clubs around me, I'll have to check them out and see if they have pickleball. I've actually gotten more active (I'm not sitting watching them play anymore) I've gone to the climbing gym and I love it. I live about 1/2 mile from some great hiking trails so the dog and I do that a lot. My husband and I actually just sit and read some evenings with no TV on!! There were never any dishes in the sink when I got up in the morning (that has once again changed with their midnight meals and being home. I love having them home and miss them when they're not here but honestly I'm enjoying the empty nest (Shhhh!)
 
LOL, yes, when your kids are small, you can't imagine not having them around but, as you said... Shhhh!! :D

Re Bridge - I found an app called Funbridge. It's free (for the most part anyway) and it offers 12 or 13 lessons and some free deals to practice each lesson. And then, you get 10 or 15 free deals per week to play. I haven't gotten so involved (or so good) as to join tournaments, etc. but it's an easy app to use and very easy to understand and short lessons.

And, that's disappointing about the cruise... but totally understandable why you'd want to cancel. :(

And, those dishes... with my daughter still home, I'm still waiting to wake up to no dishes in the sink! Heaven! lol :D
 
Two of my 3 are at home. My husband has been enforced into retirement. Sarah is living in Melbourne as the hospitality industry is completely shut down.

Her youngest sisters are doing university from home. There is talk that K university will start face to face classes in June. Our schools are planning to be fully open first week in June.

I wake up to dishes in the sink. But girls do all my washing.

I am the only one still employed.
 
Wow Catherine! You kinda need the job so you can escape the house eh?

When my kids were little I used to look at other moms and wonder how they looked so good. Happy, rested, fit. Then I finally got all three of mine into school and I realized that was the ticket! I finally had 2-3 hours to get things done and actually went to the gym.

The next liberating stage was when I could leave them home alone. Then when they could drive themselves.

Not at empty nest yet. My 25 year old was just about to move out when corona hit. Then O came home and T us still home for another year.

G helps out A LOT but it is the non stop cooking that is driving me nuts.

I can handle the dishes but with 3 girls it is the fighting that is driving me nuts. Last night’s blow up was over a hair tie!
 
You kinda need the job so you can escape the house eh?

I'm thinking the same! Family time is great but some 'me' time, even if at work, is nice!! :D

I've been working from home but I'm thinking I may go into the office a couple times per month. There are some things just easier done from my office and, it's an excuse to go somewhere! And maybe walk somewhere 'different'.

And, yes, CIC those growing stages were great! Some were scary at first (the teen driving stage!) but, liberating all the same!

And, OMG, yes with the cooking! Wow, sometimes I feel I don't leave the kitchen all day!!! And my food bill is crazy!! Although I think that's more a function of rising prices than just the three of us eating all meals at home... prior to lockdowns, we did eat out sometimes but we all often took our lunches (even breakfasts) to work.

Our schools (universities) are starting to announce Fall classes be mostly online. Two large Quebec universities have announced online until January and, I think, one or two others have said courses with large registrations will be online with only small labs, etc. I really feel for kids who graduated high school this year... they're missing their grads/proms and will miss the excitement of the beginning of post-secondary. :(

Some elementary schools opened up on Monday in Quebec but most parents kept kids home. Our school year ends in approx. one month, so parents I've heard from are saying it's not worth the risk to send their kids to school for just a few weeks. I'm sure the news on Kawasaki disease isn't helping alleviate fears.
 
I am luck to still have a job. I go into the office everyday. We are not set up work from work.

There are more people out and about. Our number of cases are quite low. 18 cases of virus were dx on Tuesday in Victoria. Our state in currently testing anyone who wants a test. Over 100 000 tests have been done in the last fortnight.

My husband is doing most of the cooking. The younger girls don't fight much.

Internet is a problem with on line learning. Our speed is good but the connection is not stable. K can't screen share.

But life is good, we are happy and healthy.
 
Crohn's Funny!

O has colonoscopy on Tuesday. Two day prep. Covid test at hospital tomorrow (the BIG prep day). Hospital is 45 minutes away. No way would she make the trip two days in a row while prepping during a flare with every public restroom closed due to COVID. So I booked a hotel room by the hospital. Got a 4 star hotel on Priceline for peanuts. But I was the only person checking in with a twelve pack of toilet paper under my arm. I would give anything to hear what the other guests said about that!
 
Thank you for the entertainment. Good luck to O. You are one smart mamma and she is so lucky to have someone who thinks about everything! The mamma clock doesn't stop working even when they reach adulthood. :)
 
OMW.......
I can't believe this post is still going.
That's fantastic!🤣

I'm trying to read up on everyone I remember.
I'm older now so my memory is even worse.
Hugs to the ones that are the "long timers"
And hugs to the new comers.
 
We are all concentrating on the wrong thing! When looking at colleges we are all worried about being near a major medical center when in reality I have come to realize what you need nearby is IKEA!

How I went to 4 years of college, living in small dorm rooms without IKEA is beyond me. I have just spent the weekend selling her old IKEA furniture from old apartment and buying and putting together stuff for new apartment. Not to mention all the nifty storage and organization boxes and what nots.
 
We did IKEA this weekend too! No college kids right now but planning to redo space for our youngest two daughters who share a room and we wanted to add individual desks in for the future probability of online school.
I wish we had thought to go a few weeks ago before the college kids! Stock was lower. Looking forward to a glass of wine to aid in assembly!
 
Love it!

Wishing everyone and their families the very best over the holidays! Lots of prayers that 2021 brings us all health and happiness!! 💞
 
Our little group has a wide reach. I wanted to let any of our members affected by the tornados last night know that we are thinking of them and praying that they and their families are safe.
 
Hey y’all. It was World IBD Day yesterday. How did y’all mark the day?
We walked out of the hospital leaving O’s colon, rectum and anus on a pathologists table! 😂

The US approved Upadacitinib for use in adult Crohn’s (well that was day prior but still counts).

There is good on the horizon. I just know it!
 

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