Starting high school with IBD

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Hope345

Hope345

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Oct 16, 2012
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Yesterday B met with a teacher at OHSU/Doernbecher. She works with IBD kids and others who have health issues. Since B will be starting high school in the fall, she is having us set up a meeting right now with the high school councelor, the 504 instructor, and school nurse to plan B's arrival. I will have forms ready with regards to Crohns, the latest needs for B, and prepared questions. She also mentioned making up a one page sheet with B's picture and what IBD has meant to B and our family (B probably wont be at the meeting). We are fortunate to also have this involved teacher want to be there via computer resource so she can assist with information I might forget.

I thought this was such a great idea, I wanted to share it with other parents whose children will be starting school. The whole idea is to prepare for success.

Let me know what made your childs time in school successful.
 
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Hi Julie!

Just wanted to wish Baylee luck in HS. Sounds like you are doing all you can to make sure the transition is comfortable for her. I really love your attitude and level of support you provide your daughter. You are such a good mom :)
 
Alex starts high school in the fall too. I've been trying to decide if I should be in touch with the counselor. This year is the first year I haven't contacted each of his teachers, but the school nurse is very familiar with him and he has a 504 in place.

He hasn't had any problems this year with his stomach bothering him much at school and has actually only had to ask once to go to the restroom. The teacher at first said no, but then Alex said "but my stomach," and the teacher said "oh yeah, go!" so I guess the nurse passed the information on to the teachers.

Guess I need to decide if I'm going to contact the counselor soon. Earlier this week we had a meeting to pick classes for next year. There are about 720 upcoming 9th graders, so I probably need to set up an appointment soon!
 
Crohnschicago: Thank you for your support too. Looking forward to some great years ahead.

Tink572: I did not realize they were getting the classes planned, thanks for the heads up on that one. I wish Alex the best in HS. Since B has missed so much of Middleschool, I am a little concerned for her, but hopefully all the meds will work well to keep her symptom free. Keep planning for good health and great days ahead.
 
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julie345 said:
Crohnschicago: Thank you for your support too. Looking forward to some great years ahead.

Tink572: I did not realize they were getting the classes planned, thanks for the heads up on that one. I wish Alex the best in HS. Since Baylee has missed so much of Middleschool, I am a little concerned for her, but hopefully all the meds will work well to keep her symptom free. Keep planning for good health and great days ahead.
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I was surprised that they pick classes this early, so I don't know if all schools do this or not. They also had to look ahead to the next 4 years and mark what classes they think they'll take throughout high school. Oh my! Not ready for this!

I sure hope Baylee has a better year and feels better. It's so hard when they miss school. So far this year the only school Alex has missed is on appointment days for Remicade. (I shouldn't have typed that out--I probably just jinxed him!!). Best wishes to Baylee!!
 
Devynn will be starting middle school in Sept. As soon as we are accepted into her new school I will make an appt to go and talk to them.
 
Alec is starting High School in the fall, orientation is tonight and we plan on meeting with the school nurse to make sure she is aware and lets Alec's teacher's know of his situation. We did the same with middle school.
 
C's school gave the option for C to be in the meeting or not. He chose not to, though he did meet with the 504 director after the plan was set.

I know if C had been absent for a few days the 504 director would pull him into her office during PE or other electives to let him catch up on quizzes or tests. If this wasn't possible she would schedule time in her office before/after school to allow him to test. He liked this better than in classroom testing because there was always activity with the class or after school students going on where as in the directors office it was quiet.
 
Thanks everybody, it is so good to hear all the good tips. I will check to see if B needs to be at the meeting, I know I do want her to meet with all of them before school starts.
Clash: I am anxious to meet with the 504 coordinator, I hope she is as helpful.
 
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julie345, I was really nervous about the meeting with the 504 coordinator, too. Outwardly, she was stern, by the book and all business, and that was her demeanor face to face and through email but she went out of her way to provide C with support. And all C had to do was pop in her office with a question or stressing over something and she would be all over finding the best solution for him. She was absolutely fantastic with C and I was so thankful for her!
 
1. Make your child a Card which they can quickly show a teacher if they need to go the toilet, this will save embarrassment.
2. If your Child lives close to school, allow them to go home for lunch, the stress of Active IBD and School can be overwhelming and a break from everyone (and a clean toilet) is nice to have to freshen up.
3.MOBILE PHONES, they are a must for a child with IBD at school, If I ever had an accident at school I would much rather phone my Mother than ask a teacher for help.


Cant think of anything else right now, but all of the above helped me through High school and college.
 
Our school district is a junior high one so we go 7th-9th for junior high and then 10-12th for high school so one more year before I have to worry about high school although since the next school district over is a 9-12th for high school all the extracurricular activities are done through the high school.
Jack has attended his 504 meetings for the past 2 years. He thinks it is great to meet all his teachers before the school year and they have a face to put with the plan. Makes for easy first couple of weeks. Most of the teachers asked him what they could do to make it easier for him as well.
 
thanks Clash. I will plan on her being helpful. :)

theri1: great ideas, I had not thought of the card and I will make sure she gets to keep her phone with her.... I will certainly give her the option to come home at lunch, that is a good idea too.

Jmrogers4: I think meeting the teachers is a great idea too. Just one more way to make her feel comfortable and get the help she needs.

One more step in the right direction....
part of me wants to just keep her home and protected, and the other part knows she needs to go face the world head on!! Plus she is already talking about getting A's and scholarships.

I am sure most of you already know, there are scholarships available just for IBD kids :)
 
theri1 that is great advice, thank you. My daughter will be starting middle school. I will make sure she has a cel phone. She got one for Christmas and has been taking it to school every day now. Its off, but if she needs it she has it. Unfortunately we don't live close enough for her to come home every day.
 
Next year will be Middle School for Liam too. His current school is KG - 12 so although the Upper School operates very seperately it's in the same building and there are some shared services including the Medical Office.

It was our intention to relocate at the end of the school year but I'm feeling some strong reservations about tackling a new school/new city if we haven't got on top of these current issues.

The school doctor is Egyptian trained and I've made a really effort to keep her in the loop as to what is going on. She is always pleased when I stop by to update her on test and medical reports and gives her input on what questions she thinks I should ask his doctors and any additional tests I should ask them to run. Her staff are good to, they are friendly, helpful but no nonsense. I never have any concerns about Liam not taking medications at school because I know if he doesn't turn up they'll chase him down.
 
Our system is different here in the UK, our area is Primary (4-11) and then secondary 11 +. My son did the jump in September having only just been diagnosed in the Summer so he has found it very hard. The main issue being tiredness and longer days due to an earlier start as he gets the bus!

After talking with the school DS was issued with a classroom pass card so if he needs the loo only has to show it and can leave without explaining himself. He is also allowed to use disabled and staff loos as these are slightly nicer!!!!!!:lol:

He does have a phone but not great at using it..... Yesterday he felt bad in the morning but plodded into school, I said txt me break time so I know how you are, so txt comes in 'feeling exhausted and sick' I reply 'ok to stay or shall I pick you up?' And then no reply from him for the rest of the day! He really hasn't got the whole communication thing sorted yet!!!!!!!!

I'm sure Baylee will be fine. Getting school on board is first step.

Ands xxx
 
Ands said:
Our system is different here in the UK, our area is Primary (4-11) and then secondary 11 +. My son did the jump in September having only just been diagnosed in the Summer so he has found it very hard. The main issue being tiredness and longer days due to an earlier start as he gets the bus!

After talking with the school DS was issued with a classroom pass card so if he needs the loo only has to show it and can leave without explaining himself. He is also allowed to use disabled and staff loos as these are slightly nicer!!!!!!:lol:

He does have a phone but not great at using it..... Yesterday he felt bad in the morning but plodded into school, I said txt me break time so I know how you are, so txt comes in 'feeling exhausted and sick' I reply 'ok to stay or shall I pick you up?' And then no reply from him for the rest of the day! He really hasn't got the whole communication thing sorted yet!!!!!!!!

I'm sure Baylee will be fine. Getting school on board is first step.

Ands xxx
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He sounds exactly like I was during school, for me the first few hours of school were the hardest because of all the waste still in your system from the night before.

I wouldn't recommend letting your child eat school meals, from my experience they are full of grease and nasties which could set him off easily, I would Highly recommend a pack lunch or just a sandwich from school, it may not be a hot meal but at least you know what your child is eating.
 
Funny how different everyone is. This probably sounds strange, but I opted not to involve the school nurse at all. At the beginning of high school he was going through loads of tests, then the NG tube/Modulen, then blood tests and check ups. I decided he really didn't need yet another person asking him how he is and checking up on him. Plus he would have been called out of class to go see her and I didn't want him to be missing work just for a "how are you". Thankfully he doesn't have any toilet issues for teachers to deal with.
My biggest hurdle was getting work sent home for him when he was off. I think the teachers felt sorry for him so didn't bother sending anything. I eventually met his form teacher and told her we needed a system in place that if he was off more than 2 days I needed his teachers to send or email work for him to catch up on, even if he only felt up to reading through it, at least he absorbs some of it and isn't totally lost when he goes back.
 
It does seem to be different for each child. I think it will be better to have the school involved because she has missed so much school in the past. If we are working together they will be more apt to help her get caught up.

That is so great Sascot that your son is doing well without having to tell everyone at the school. I have just written down to ask them how to handle missed days/homework.

Theri1, our daughter usually packs a lunch, but they tend to have quite a variety at schools these days. I will keep track of how she is eating during the day.
 
Just another good thing to have is your favourite teacher to talk to, for me it was my History teacher, Miss Leckie... She always helped me and was there to talk to.
 
that is a great idea theri. I am hoping there is at least one teacher that takes the time to get involved with her and her situation. I am glad to hear you had your History teacher.

She had a special teacher in middle school that went above and beyond, but she just wasnt able to attend enough.... home school has worked out so well for now. She is not the kind to push herself, so it is like pulling teeth. But I know what has to be done and we focus on those primarily.

1. Math (getting all the basics caught up, plus adding in algebra)

2. Reading and writing (Good reading skills, being able to write a topical paper with into paragraphs, supporting paragraphs and conclusion) We will find out what books will be coming up and maybe have her read those as well.

3. I often combine SS, health, Science with writing as well.

4. cooking, art, exercise are often part of her routine naturally

If anyone can think of something else that kids often struggle with, let me know and we can prepare.

thanks so much
 
Ryan is in his first year of high school now. We did have a 504 meeting and the counselor sent out info to all of his teachers. One thing that helped him alot was he has a safe person, so if he needs to get out of class for some reason, he can tell his teacher he needs to go see "x" and they let him go. Sometimes our kids just get stressed and it's good to have a quiet place to cope for a few minutes. Then the safe person gives him a pass to go back to class. Another thing is the picking that goes with looking tired or moon face. The vice principal told Ryan to find the closest adult and tell them "I am about to get into a fight with this person and I need you to stop me". That way it doesn't sound like tattling, but he gets some intervention. With us, it's all about "feeling" like he has safety whether he actually uses it or not. He is a pretty anxious kid.
 
I see B's stress level go up quickly too, especially if there is any pain, very tired or anything to do with Crohns. She handles it at home with her own routine, but it was quite difficult at school. Thank-you for sharing, I will set her up with a place to be able to go to get away from it all if needed.
 
Oh, another thing I forgot. We asked for extra time for lunch if needed. I send Ryan's lunch daily, but he really needs time to chew. Their lunch is only around 20 minutes from classroom to lunchroom and back to class. If he needs it, he can leave class earlier to miss the crowd and get a few more minutes. He would need even more time if he actually bought lunch there.
 
Going from home schooling back into mainstream schooling sounds to me a little like changing school systems. My boys have been in Australian, American, IB – PYP & British (Cambridge Lower Secondary) school programs so far, and I run an English Conversation program for newly arrived parents, so this is a topic I’ve thought about a lot. Below I’ve tried to pull together some of my standard advise for changing curriculums, hope it’s helpful.


- Accept that when children change school systems there is generally a six month adjustment period, prepare your child for this, it’s normal, most children experience. Try not to be alarmist about issues in the early days. Use words like adjustment and transition to emphasise to your child that you think issues will resolve with time.

- When you change systems there will always be some gaps, (even for kids coming out of really good school systems). If you can afford it budget for some tutoring, if your able to do that, tell your child you’ve put money aside for this if needed. Although you may not spend this money I think it does help kids to know that the option is there.

- If your school doesn’t have interviews until the end of semester, try to organise to meet with teachers and discuss progress at about the 8 – 10 week mark. At that point staff should have a good enough understanding of how individual students are doing to discuss with parents what issues exist and provide input into action plans for addressing gaps and getting them on track.
 
thanks for all the good ideas. I will ask for extra time during her lunch if needed and meeting with teachers ant the 8-10 week mark is going to be very helpful.

I know she will be anxious starting back to school. I want her to have a normal life in high school, but I know we can do home school if needed. I think stress can bring on flares too.
 
julie345 said:
thanks for all the good ideas. I will ask for extra time during her lunch if needed and meeting with teachers ant the 8-10 week mark is going to be very helpful.

I know she will be anxious starting back to school. I want her to have a normal life in high school, but I know we can do home school if needed. I think stress can bring on flares too.
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Definitely stress can do it. Jae has done so much better since getting her out of the stress of middle school. Even with all the testing and doctors visits and blood draws, she has taken life much better when she didn't have to face school in the midst of it all. I hope B does well and loves it.
 
YES! Stress can definitely bring up symptoms. Ryan has had some stressful situations the past few weeks and guess what....pale skin, dry hands, fatigue, and blood! Aaagh! Thinking an anti-anxiety medication might be a good addition to the mix (for both of us :ybatty:)! He's not going to stop being a type A teen any time soon!
 
My name is Sarah and I'm a junior in high school. I'm in the middle of a crohns flare up and I'm missing so much school. I'm an A+ student but now I'm falling behind. I'm so sad and always in pain and I feel like no one understands. I just need people to talk to :(
 
Thanks so much! This is the first time I've even heard about a 504. And I really was looking so hard for a teen forum!! thanks!!!! <33
 
Sarah,
Welcome to the forum.
I am sorry to hear you are currently in a flare and trying your best to keep up at school.
Your health is most important and I agree about the 504 plan.
We are all here to support you and help in anyway we can.

I just met with the counselor at my daughters highschool as she is starting 9th grade next year with Crohns. We went over every little detail about what she can do in any situation. The counselors are very supportive and a good place to start.
I know when you are in a flare it is hard to keep up and deal with all of this stress. I would be glad to tell you what we put in my daughters 504 plan if she had to miss school.

wishing you the very best.
 
Sarah you can definitely come and talk to us about it, some of our parents here have kids who are facing very similiar issues to you and may have ideas how to help. *hugs*
 
Hope345 said:
Sarah,
Welcome to the forum.
I am sorry to hear you are currently in a flare and trying your best to keep up at school.
Your health is most important and I agree about the 504 plan........
I know when you are in a flare it is hard to keep up and deal with all of this stress. I would be glad to tell you what we put in my daughters 504 plan if she had to miss school..[/QUOE].





Thanks so much. I would really like to know what is in your plan regarding missing school. I have missed so much :(
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some basics included:
pass to bathroom anytime, with access to a private bathroom if needed

Able to keep cell phone with her

Water bottle in class if needed

Missed days:

No penalties for missed days

Allow longer times for assignments

Limit assignments to absolutely necessary assignments (maybe half)

Set up home instruction teacher if missing more than 10 days

Have other students take notes in class and pick them up after school

Access to summer classes on line if needed to make up a class

Access to on line classes during school year if available

Additional help during open academic time

Note: Good communication with teachers is essential. If they know you are trying to keep up, they will work with you.

If you are passed a certain point, home tutoring or on line classes might work best. You could return next school year.

If you feel you can still make up missed classes, get your 504 plan going (get it going either way) and start to do as much make up work as possible.

The 504 plan is great. It also continues on with you through college but is always kept private.

I know some of the other mothers may have more to add to my list. they are all so helpful.
 
Hi Sarah. Welcome.

My name is Kimberly and my son, Reed, is also a junior in high school. He too is an honor student and has missed a lot of school this year! He missed about two months straight!

I'm sorry you are having a difficult time right now. I know that at Reed's school he was able to ask the Home Hospital program to hire each of his AP teachers to tutor him for one hour a week. Do you think you could send an email to your counselor and see if an arrangement can be made? Perhaps they could film any review lessons for you to watch as the end of the year approaches so that you can relax and heal, rather than stress.

Additionally, since Reed had to teach himself honors trig, the teacher allowed him to use an answer key book and a worked-out solution key book so that he could try to work the problem backwards if he was struggling. What math are you in? You tube has some great resources. Most textbooks for any subject generally come with student CD's that the teachers don't usually give out because they are often in limited quantity. Ask...you may get some great materials. Don't underestimate the audio book idea for novels. It will give you a chance to lay down and rest your body while studying at the same time. Anyway, it's fun to be read to!

Plus (okay, I'm on a role now...LOL), you can have a home set of books and a school set in each classroom to lighten your backpack and make you more comfortable.

Also, find out which classes you can get an incomplete in and which ones you really need to take the finals on. I would suggest finishing up your math, and saving history assignments, for example, for the summer. Try to allow yourself to focus and not spread yourself too thin.

You are bright and have a good sense of things. You can do this! Be kind to yourself.

I'm sorry. Here I am in "fixing mode" and you just wanted to talk.

I hear you. Giant hug!

Kimberly
 
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Hey Sarah - sorry to hear you are not doing well... You should be able to have plenty of time to make up your work so your grades do not fall behind (your teachers can give you a low grade as a place holder and then change the grade when you're finally well enough to complete your work assignments). My son ended up finishing his 7th grade education in the middle of the Summer because he got so sick mid year and wasn't able to do the work at that point.

I hope you can turn to your friends and family for support. My son is now 16 and is very open about his diesease with everyone. He's homeschooled through our county, but he keeps in contact with everyone via social media and then attending activities, sports, etc...

Hope you feel better soon!!
 
Wow thanks for the support everyone!! I didn't realize how much better this would make me feel. It's good to know I'm not alone here. Thanks to all of you for the tips and support! <3
 

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