Crohn's Disease Forum » Parents of Kids with IBD » School/College/University & IBD


 
05-22-2011, 06:21 AM   #1
DustyKat
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School/College/University & IBD

This is a place to provide information and discuss issues faced by parent's/carer's and children as they navigate the education system.

American parent's/carer's may find the following wesites useful:

http://www.ccfa.org/kidsteens/?LMI=8

http://www.nhlbi.nih.gov/health/publ...ma/guidfam.pdf

Dusty.
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05-22-2011, 06:24 PM   #2
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This is an article that discusses the issues your child, with IBD, may face when starting school...

http://www.suite101.com/article.cfm/..._support/23846

Dusty.
05-24-2011, 05:55 AM   #3
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This is a scheme open to NSW senior high school students who are sitting their HSC and wish to obtain a UAI. Medical disadvantage is one of the criteria to gain approval. Sarah applied for this scheme in 2009 and although she did not end up needing to use it, it was good to know it was there. The other advantage is it also automatically flags you to the Student Equity and Disability department of the university that you accept an offer to.

http://www.uac.edu.au/documents/unde...oklet-2011.pdf

Dusty.
05-24-2011, 06:24 AM   #4
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My Support Groups:
· Stoma
I've got all of these from Crohn's and Colitis UK (NACC)

Children and young people with IBD: a guide for schools
http://www.nacc.org.uk/downloads/fac...ersCanHelp.pdf

Students with IBD : A guide for universities and colleges
http://www.nacc.org.uk/downloads/fac...ersCanHelp.pdf

Students with IBD: A guide for students
http://www.nacc.org.uk/downloads/fac...University.pdf
05-27-2011, 06:24 AM   #5
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I thought I would put down, in words, the story of Sarah and Matt’s university journey as it stands now. I will explain the reasons why we chose the universities we did and how those choices have panned out…

Sarah:
From the word go Sarah was adamant that she was going to attend university in the city. We had no issue with this decision as we felt that she needed to get away from her small home town and her brother. My perceptions may have been way off the mark but I don’t think they were. As most of you would know Sarah went 18 months before being diagnosed and she was then left with deficits, as a result of the extensive surgery that was required, due to the damage that was done during this undiagnosed period. This affected her ability to lead a normal life and I think she then carried a label of “Sarah with Crohns”. Don’t get me wrong, her friends remained nothing but supportive but I do think it was a legacy of living in a small town.

The issue with her brother has to with self esteem and I truly believe that she needed to get away from him to establish her own identity. She did not believe in her own abilities because of his.

Fortunately she did well in her HSC exams and was offered a place to a university in the city. I was scared as hell at the time, I still am! , at the thought of her being 600kms away. We decided at the time that living in a traditional college on campus would not benefit her due the types of meals and the times they were provided plus the general running and set up of the colleges. We therefore chose a private, on campus, college that provided apartment style living with students having their own bedroom with shared bathroom, living and kitchen facilities. Sarah chose an eight bedroom/3 bathroom apartment and she stayed in that accommodation for 15 months. She had no issues during this time, in fact she loved the experience, with the shared accommodation even though she has short bowel syndrome.

So why did she then choose move out in March? I don’t know if this is the general consensus in other countries but here many students tend to live on campus in their first year and then move off campus. I think this may have been a part of it but I also think that she tired of shared living. I learnt something about Sarah last year that really surprised me. We went away for a few days together and we were just chatting and having a laugh and I have no idea how it came up but she said she has OCD tendencies! I had no idea and she then went on to say that when she was younger she would count things in pairs all the time, it has continued and now when she buys groceries she will buy things in multiples of two! Well I was gobsmacked! I think since last year, when she told me this, things have settled somewhat and she is not so compulsive about it anymore. Anyway, I think some of these tendencies made it difficult to handle living with so many other people. Sarah is nowhere near what you would call tidy but she is particular and living with five other blokes became a tad too much.

So to sum up, she absolutely loves going to university in the city and it has been the making of her. She has found her feet and identity and she hasn’t looked back. We financially support her at university and with her job she is paying the difference between her rent on campus and her apartment off campus. All is good, very, very good.

Matt:
Matt has commenced university whilst still in high school; because of this he is attending the university that is located closest to us. He has been conducting his study as a part time external student, and since obtaining his driver’s licence last year he has also been attending lectures on campus when it is convenient. He finishes high school this year so will become a full time, on campus student next year. At this point in time Matt is happy to stay at home and continue to complete his undergraduate degree here.

Two very different experiences from my perspective but both kids are happy with their choices so who could ask for anything more!

I have no idea if this will be of any use to anyone but hopefully it was at least a good read...

Dusty. xxx
06-08-2011, 03:32 PM   #6
Crohn's Mom
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Here is a link to apply for a college scholarship for students with CD. This years (2011) deadline has passed, but it may be useful in the future

http://www.crohnsandme.com/crohns-scholarship/
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and Austin (18)
DX: Crohn's 7/2013
06-08-2011, 04:43 PM   #7
Entchen
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I'll add that most/all Canadian universities have a special services and disabilities office. You can work with this office to arrange any variety of supports that might be helpful to you (ex: extra exam writing time to allow for multiple washroom trips, perhaps taking the exam in a private room located near a washroom). Sometimes, the office may provide ideas for accommodation that you would not have thought of yourself or that you didn't think you really needed or perhaps even deserved to receive.

Note that you may be required to work with the special services office to be eligible to receive any form of accommodation from your instructor beyond what would generally be granted to students. The disabilities office at the university I'm presently teaching at (a large institution in Western Canada) provides an added bonus: they will advocate on your behalf when needed. The office is very well aware of your rights at a student and they will help ensure that those rights are respected at all times.
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
10-02-2011, 02:54 PM   #8
ASBV
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Hi Entchen,

Read your reply and just wondering what I should do in my case. When I started the college I'm attending I went to the disability office and spoke to the counselor there who told me that Crohn's is not considered a disability therefore I wouldn't be needing to submit anything to them. I have failed last semester due to a bad flare up and hospitalization and this semester has started off bad with another flare up. My Professors all ask for the accomodation letter from Disability Services but I can't get one because they don't recognize Crohn's as a disability.

What should I do and what are my options?
10-02-2011, 04:57 PM   #9
DustyKat
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Hi ASBV,

Perhaps you could send a private message to Entchen?

Since this thread is in the parent's section she may not revisit it very often.

Dusty.
10-03-2011, 12:36 AM   #10
Entchen
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Thanks for the referral, Dusty.
10-20-2011, 02:15 PM   #11
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useful links, thanks
10-21-2011, 11:42 PM   #12
DustyKat
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Great website for those of you with kids at college or if you are at college yourself...

http://crohnsoncampus.com/

Dusty.
12-14-2011, 11:05 PM   #13
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Even though the school was on board and I never had an issue with them I knew they didn't really appreciate what Sarah was going through. This was a concern I had in her final year of school so I arranged a meeting with the Principal, all her teachers and any other staff involved with her and basically told them what she went through on a daily basis and what I expected of them. This is the report I wrote.
Background
Sarah was diagnosed with Crohn’s disease in July 2006 following surgical intervention. In hindsight the disease had most likely been present for at least two years prior to hospitalisation. During this time other diagnoses had been made including Abdominal Migraine and Pancreatitis.

What Is Crohn’s Disease
Crohn’s disease is one of two types of inflammatory bowel disease (IBD). Any part of the gastrointestinal tract can be affected but the most frequent site for Crohn’s disease is the ileum. This is where Sarah’s is located.

Causes
The cause of Crohn’s disease remains unknown, however, a number of factors are believed to contribute to its formation. These include genetic predisposition, environmental effects, viral or bacterial infections and/or abnormalities of the immune system. The only one we can rule out for Sarah is genetic predisposition as she has no first degree relatives with the disorder.

Post 2006/Remission
The surgical intervention required in July 2006 was a Right Hemicolectomy. This procedure necessitated the removal of 68cm of bowel including the terminal ileum. As a result Sarah has been in remission since this time due the combined effects of the surgery and medication.

Side Effects
The issues that Sarah faces on a daily basis have little to do with her Crohn’s disease, they are a direct result of the surgery. Unfortunately the side effects impact significantly on her day to day functioning and they include:
 Eating – Sarah has to plan her eating around what her activities are for the day. On an average school day Sarah will not eat breakfast or lunch and if she is working in the afternoon will not eat until she has finished work. Occasionally she will have lunch at school.
 Toileting – The reason for the above issues are due to the effect eating has on her need to use the toilet. The removal of the terminal ileum has resulted in frequent loose bowel motions (the terminal ileum is where water and bile salts are reabsorbed back into the body hence the loose bowel motions when it is removed). One of the most disturbing aspects of this is if Sarah is unable to eat until quite late in the day she may be up to the toilet 7 or 8 times during the night. This then leads to the next problem.
 Fatigue – The majority of Sarah’s absences from school are not related to illness but fatigue/tiredness due to much disrupted sleep patterns.
 Anaemia – Sarah is frequently tested for haemaglobin , folic acid and iron store levels. The terminal ileum is also responsible for the absorption of B12 and other iron nutrients. Sarah receives supplementation of these but often sits at the lower end of the normal blood range and at times slips below. This then compounds the problem of fatigue/tiredness.
 Spontaneity – Everything Sarah does in her life has to be planned, she has no spontaneity. This affects her ability to socialise and attend outings, excursions, work and school.

Medications
Sarah takes the following medications on a regular basis:
 Imuran (oral) – This is taken daily. Imuran is an immunosuppressant drug and as the action implies its objective is to suppress the immune system in the hope of keeping diseases like Crohn’s in remission. It is not without its side effects the main one being its ability to affect blood cells which is the reason she is required to have blood taken at least every two months.
Imuran also causes photosensitivity so extended periods of exposure to the sun should be avoided.
 Folic acid (oral) – This is taken daily and is required as Sarah is unable to absorb it due to the removal of the terminal ileum.
 Neocytamin (B12) Injections – These are 3 monthly and again this is required as Sarah is unable to absorb it due to the removal of the terminal ileum.

Other Issues
Crohn’s disease and the effects of the (R) Hemicolectomy are problems Sarah is going to have to deal with for the rest of her life.
Migraines – Sarah also suffers from migraine headaches. These seem to be becoming less frequent and hopefully it will stay that way. Medication for these is taken on a needs be basis.
Sore Eyes – Sarah frequently complains of sore eyes. She consulted with an ophthalmologist as it was felt it could be related to the Crohn’s disease. No problems or defects were found which is good however the problem still persists

Discussion Points
• Sarah presents well thus masking problems that may be present.
• Matthew – do his abilities undermine her confidence?
• Counsellor – would it help?
• Needs sustained guidance and support.

04/06/09

Looking back at the causes, well I now do solidly believe that it is hereditary in our case.

I hope this helps,
Dusty. xxx
12-14-2011, 11:57 PM   #14
Entchen
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Dusty, thank you for sharing this letter. With your permission, I may adapt it sometime if needed for the workplace.
12-15-2011, 12:37 AM   #15
DustyKat
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Most definitely!

Dusty.
12-15-2011, 09:28 AM   #16
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We should have section for us kids who are going to college/university and dealing with crohns! Lol. I could share my experience
02-08-2012, 01:54 PM   #17
Crohn's Mom
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I'm curious if anyone has applied for the UCB Crohn's Scholarship this year ?

http://www.crohnsandme.com/crohns-scholarship/

Gab has just finished getting her information together, (she's a bit last minute LOL) and will be mailing her packet out tomorrow. I'm hoping and praying she gets it! I was so impressed by the letters of recommendation that were written on her behalf from her previous school counselor, her doctor, and the surgeon she works with shadowing at the hospital by her college. I think she has a good chance of getting it, but we shall see ...
02-08-2012, 02:17 PM   #18
DustyKat
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NO! They don't have one in Australia! Booooooooooo!

Oh T...Sending Gabs all the love and luck in the world!...

I bet those letters of recommendation weren't hard to write when you are dealing with such an inspirational young lady!

Dusty.
02-08-2012, 03:15 PM   #19
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I'll have to see if there's one in Canada!

Good luck to Gabs!
04-26-2012, 04:52 PM   #20
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Bump.
05-01-2012, 04:00 PM   #21
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18 Timberline Drive
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Template Section 504 Plan for
Children with Inflammatory Bowel Disease

The following was written by 2 psychologists, a social worker, and a lawyer who specialize in chronic illness. It is intended to include absolutely anything and everything that a child with IBD might encounter at school. It is not intended that all of this plan will apply to any one child; you can pick and choose the parts of it that apply to your child.



Section 504 Plan for ____________________
School _______________________________
School Year ___________________________


Nature of the Disability

This student has a form of Inflammatory Bowel Disease (“IBD”) called ________________ (Crohn’s disease or ulcerative colitis). IBD is a chronic disease affecting the intestines. Ulcerative colitis affects the colon; Crohn’s disease can affect any part of the digestive track, from the mouth to the anus. The most common symptoms are diarrhea, abdominal and rectal pain and cramping, nausea, vomiting, fatigue, and arthritis-like joint pain. Although its cause is unknown, IBD involves the immune system and causes inflammation and ulceration of the lining of the intestines. The emotional and physical pieces are interrelated in complex ways, and patients can experience flare-ups during times of emotional tension and stress. Changes in cognitive function including compromised attention and concentration, reduced capacity to process information, disruptions in memory and reduced ability to multitask are also manifestations of this disease. Changes in physiological functioning of the gastrointestinal tract characteristic of this disease can be exacerbated during period of environmental and/or psychological stress. The stress in/and of itself does not cause the disease.

Treatments can include immuno-suppressant drugs that render patients more susceptible to illness and intensify reductions in neurocognitive functioning described above. Patients may be on a restricted diet; may need to eat several small meals per day; and most likely will need to take medication during the school day. Some treatments are provided intravenously in the outpatient hospital setting that may cause a student to miss multiple days of school.

Although surgery is avoided to the extent possible, students affected by IBD may require surgery, including surgical revisions of the digestive track, such as ileostomy and colostomy. Such procedures involve a small piece of the intestine (the stoma) being pulled through the skin and a pouch worn outside of the abdomen to collect waste. Other surgical alternatives create a pouch inside the abdomen. Both procedures require students to have access to a bathroom facility to empty their pouches, and to clean themselves as needed.

Students with surgical resections of the intestines may suffer from the lack of a normal length of intestine, especially when part of the small intestine has been removed. These students may suffer particularly bad diarrhea and altered bowel demands, again necessitating easy access to the bathroom.

Students with IBD tend to be over-achievers or “type-A” personalities and work extremely hard to compensate for their illness and its effects on daily functioning.

Students with active IBD will need to use the bathroom several times a day – sometimes as many as 20 – often on a moment’s notice in order to avoid fecal incontinence. Incontinence still may occur, and students who suffer this symptom will need to be able to clean themselves and change clothes during the school day. IBD is a chronic illness that is cyclical; patients can face associated gastrointestinal symptoms in a recurrent pattern, with periods of symptom inactivity in between active flare-ups and complications. Symptoms may worsen in an unpredictable manner and conversely, may go into remission for varying lengths of time. Medications can help manage the discomfort and inflammation, but are not cures for IBD.

Introduction to the Plan

This is a Plan developed under Section 504 of the Rehabilitation Act of 1973 (“Section 504”), the Americans with Disabilities Act (“ADA”), and the Individuals with Disabilities Education Act (“IDEA”) to identify the health care-related needs of the student, as well as services and accommodations to be provided to the student.

________________________ shall be the point person at the school for purposes of carrying out the provisions of this Plan. This person shall be known as the Plan Coordinator. The Plan Coordinator will educate him/herself about the nature of IBD, the treatments the student is receiving, the side-effects of the treatments, and the student’s particular symptoms and needs. In addition, the Plan Coordinator shall be responsible for ensuring that the provisions of this Plan are carried out and he/she shall be the liaison between the student, his/her family and the school personnel.

For purposes of this Plan, __________ (the student) is a person with a disability under Section 504 and the ADA. He/she is significantly impaired in performance of the major life activity of disposing of bodily waste.

The purpose of this Plan is to maintain the student’s optimal participation in his/her academic curriculum and educational goals, aid in the management of his/her illness, and reduce the student’s stress. This Plan overrides any written or verbal policies established in this School District that may conflict with the Plan in any way.

Any and all communications pursuant to this Plan shall be in writing. Email and facsimile shall be accepted forms of written communication.

The Plan Coordinator and Due Process Rights

The Plan Coordinator shall provide each of the student’s teachers, including substitute teachers, with a copy of this Plan, and shall instruct them to comply with the terms of this Plan.

If the Plan Coordinator is unable to obtain compliance with this Plan by any teacher or other school personnel, he or she shall notify the School Principal immediately, and shall recommend an action plan, including but not limited to discipline of non-compliant teachers if necessary. School Principal shall respond to each such communication from the Plan Coordinator within one (1) school day, and shall accept the Plan Coordinator’s recommended action plan unless there is good cause for declining to do so. “Good cause” shall not include fiscal considerations.

If the School Principal declines to adopt any element or portion of the recommended action plan, he or she shall put his or her reasons in writing within one (1) school day of receipt of the recommended action plan, and this writing shall be sent to the parent(s) or legal guardian and the Plan Coordinator. In addition, the School Principal shall provide a copy of both this Plan and the writing referred to in this paragraph to an official of the School District who, at minimum, has authority to institute corrective measures on the District’s behalf.

Both the parent(s) or legal guardian and the Plan Coordinator shall have the authority to request a due process hearing if the School Principal declines to accept the Plan Coordinator’s action plan. This hearing shall be presided over by three members of the School District who are not in any way subordinate to the School Principal or Plan Coordinator. This hearing shall be in addition to, not instead of, any due process rights students and their parent(s) or legal guardian have under the ADA, Section 504, and/or the IDEA.

The Student’s Symptoms and Needs

________________________ (the student) has the following symptoms and needs, which may change over time:
_____ Diarrhea (estimated ___ bathroom trips per day)
_____ Pain and cramping (rated a ___ out of 10, with 10 being the worst)
_____ Fatigue
_____ Nausea
_____ Vomiting (estimated ___ times per day)
_____ Student has had surgery (___ times)
_____ Student has an ostomy or other surgical revision of the digestive track
_____ Student takes medication during the school day
List medications and dosages here:

Student has dietary restrictions
Explain here:

Student receives treatments/office visits that require absences from school
Frequency: every ____ weeks
Expected duration of absence: ___ days per treatment
Student requires school staff assistance with:
___ medication
___ dietary needs
___ ostomy or other pouch emptying and cleaning
___ Other (specify):

Student needs to maintain a change of clothing at school and may need privacy to clean him/herself and change clothes.
Side effects of student’s particular medications may cause/impact:
___ Headaches
___ Difficulty focusing, concentrating, sustaining attention
___ Hand/Limb tingling or tremors
___ Other (specify):

Other (explain):


Accommodations (select as necessary)

* The student will be provided with a written “any time” bathroom pass and shall be permitted to use the bathroom, without accompaniment by either school personnel or a student “buddy,” at any time, without asking permission, and without penalty.

* The Plan Coordinator shall walk the student through the school at the inception of this Plan to identify which bathroom facility the student will use when in each class. If a student bathroom is not immediately available, the Plan Coordinator will identify a bathroom closest to the door of the classroom, or a more private bathroom if available, such as in the nurse’s office or a staff bathroom. This will help to reduce anticipatory anxiety during times of active flare-ups related to the socially embarrassing nature of some of the IBD symptoms. If school bathrooms are locked for security reasons, the student will have access to a key to other bathrooms closer to the student’s classroom.

* The school nurse will provide the student with a place to lie down if necessary during the school day. Children will be allowed to store a change of clothing in the nurse’s office.

* The student will be permitted to carry a small bag or knapsack throughout the day, which may be subject to inspection, for immediate access to sanitary products to clean him/herself, snacks, a change of clothing, medication (if the student is self-administering medication), and other items necessitated by IBD.

* The student will be permitted to carry and drink water, eat small meals, candy (to treat dry mouth), or snacks throughout the day in or out of class, as the student deems necessary or appropriate.

* The student will be permitted to administer his/her own medications in school. If for medical reasons the student is not permitted to administer his/her own medications, the medications will be left with the school nurse, who will administer them to the student at times consistent with prescribing instructions. If the school nurse requires training in administration of the student’s medication, the Plan Coordinator shall ensure that the school nurse receives such training within ten business days of the date of this Plan.

* There will be “stop the clock testing.” “Stop the clock testing” means that, when the student is taking an exam, if he/she needs a bathroom break or a break due to pain, the time for completing the test will be extended by the amount of time the student spends away from the testing room. This accommodation shall be provided without penalty, and shall apply to all tests including but not limited to State Standardized Testing and course exams.

* If, because of his/her IBD symptoms or medical treatments, the student is unable to take an exam or submit a major project on a given day, the exam or major project deadline will be rescheduled. Cumulative term grades will not be determined until the student has had opportunity to take the make-up exam or complete the major project. This accommodation shall be provided without penalty, and shall apply to State Standardized Testing as well as course exams, term papers and projects.

* The student shall not be required to take more than one major test per day. The Plan Coordinator will be advised of all planned exams by the student’s teachers. If an exam needs to be rescheduled, the Plan Coordinator will make the necessary arrangement with the teachers. Brief quizzes may be given without prior notice to the Plan Coordinator. A “brief quiz” shall be defined as a quiz that will take thirty (30) minutes or less to complete. “Stop the clock testing” will apply to all brief quizzes. This accommodation shall be provided without penalty, and shall apply to State Standardized Testing as well as course exams.

* Only one major project shall be due on any given date. The Plan Coordinator will be advised by the student’s teachers of all planned major projects. If a major project needs to be rescheduled, the Plan Coordinator will make the necessary arrangement with the teachers. “Major projects” are defined as those that are assigned more than one week before they are due. If the student is unable to meet a deadline on any project due to anything related to his/her IBD symptoms and treatment requirements, the project deadline will be rescheduled. This accommodation shall be provided without penalty.

* The student will be given assistance to help him/her make up any classroom time missed due to the student’s IBD, as set forth below. If the student is absent from school for more than one day, or if the absence is planned, the student’s parent(s) or legal guardian shall notify the Plan Coordinator. The Plan Coordinator shall ensure that:
(a) each teacher provide the student with an updated syllabus, lesson plans, copies of all visual aids, and written homework assignments within 48 hours of when they were presented to the class so that the student can keep up with reading and some school work while absent;
(b) each teacher shall ensure that a note-taker in each class who is acceptable to the student will take notes for the student when he/she is absent, and that note-taker has permission to photocopy notes on days when the student is absent, or on days when the student is present, but unable to take notes due to difficulty concentrating or writing, or when the student is out of the classroom to take care of medical or bathroom needs;
(c) on his/her return to school, the student shall meet with the Plan Coordinator, who will assist him/her to schedule make-up tests and assignments; and
(d) assist the student to prioritize the work that was missed due to absence.

* The Plan Coordinator shall make arrangements to ensure that all written materials, including homework assignments, class notes, syllabi, lesson plans, and visual aids are obtained by the student each day, either by providing them to the parent(s) or legal guardian to be picked up, sending them home with a sibling or neighbor who attends the same school, or other method assured to result in daily delivery of the written materials mentioned above. Any and all make-up work shall be designed to show the student’s competence in the subject area; quality rather than quantity of the make-up work shall be emphasized. A teacher shall have the right to waive, modify, substitute or amend assignments so as to facilitate the student’s ability to catch up on missed work. This accommodation shall be provided without penalty.

* If the student is absent from school for an extended period of time (i.e., more than 7 consecutive school days), the Plan Coordinator shall determine whether the student is physically well enough to receive in-home or hospital tutoring. If he/she is physically well enough, such in-home or hospital tutoring shall be provided at the school’s expense, beginning within 48 hours of the determination that such tutoring is appropriate, in the subjects that the student is currently studying, by tutors who are knowledgeable in the subjects that the student is currently studying. If in-home tutoring is not appropriate, or if the absence is for fewer than 7 consecutive school days, upon the student’s or parent’s or legal guardian’s request, the Plan Coordinator shall determine whether the student requires extra help to make up missed work and, if so, shall coordinate with the teacher(s) to ensure that in-school tutoring is provided as necessary. If in-home or hospital tutoring is appropriate, the school shall provide a sufficient number of hours a day of tutoring so as to keep the student current in his/her classes and assignments. Teachers shall accept any and all work performed under the supervision of a tutor as if it were done at the teacher’s instruction. Work performed under the supervision of the tutor shall be designed to keep the student current in his or her assignments. Any and all assignments shall be designed to show the student’s competence in the subject area; quality rather than quantity of the work shall be emphasized. This accommodation shall be provided without penalty.

* The student will not be penalized for tardiness or absences required for medical appointments and/or illness. If the school gives an award for perfect attendance, the student will remain eligible for that award if his/her only absences are due to medical appointments and/or treatment. If the student is tardy, he/she will be permitted to participate in school for that portion of the day for which he/she is in attendance.

* The student will be permitted to have and store extra sets of relevant books at home or on various levels of the school, so the student does not need to carry heavy books back and forth, or around to all classes for the length of the school day. This may be relevant if disease activity impacts bone density, or the student’s weight or causes fatigue. Where available, the student will be permitted to use school’s elevator to get to classes held on various levels of the school in a timely fashion.

* The student will be permitted to participate in all field trips and extracurricular activities without restriction and with all accommodations and modifications set forth in this Plan. When outside of the school building, the supervising school personnel will identify for the student the location of bathroom facilities. A parent or legal guardian or someone designated by the parent or legal guardian may drive the student to the field trip or extracurricular activity location if it takes more than a half-hour to arrive at the location so that the student can stop for bathroom breaks.

* The student should be permitted to self-monitor his/her energy level and fatigue during gym class to determine if he/she feels capable of participating in a given physical education unit. If there is ongoing non-participation in gym class due to fatigue or other physical symptoms, the physical education teacher shall notify the Plan Coordinator, who shall notify the student and his/her parent(s) or legal guardian. The Plan Coordinator shall inform the student and parent(s) or legal guardian, who shall be responsible for seeking medical care, and medical verification of contraindication of physical exertion. This accommodation shall be provided without penalty.

* The student will be encouraged to engage fully in all school activities, and will not be discouraged from taking medication on time, eating snacks on time, complying with all dietary restrictions, taking bathroom breaks, or any of the other accommodations set forth above. All of the provisions of this Plan shall be provided without penalty to the student.

* Alternate seating must be available to the student for easy access to the classroom door to facilitate bathroom breaks and reduce anticipatory anxiety. The student may alter location in classroom seating charts, as well, if a neighboring student has or appears to have a communicable illness.

* The school shall notify the student or his/her parent(s) or legal guardian of an outbreak of chicken pox or other infectious disease as to which the student is at a greater risk due either to IBD or immuno-suppressant medication.

* The student shall be permitted to carry a cellular telephone, and be allowed to use it in an emergency that precludes the student from reaching a school telephone to contact his or her parent(s) or legal guardian.

* Any teacher or other school personnel having questions about this Plan shall raise those questions with the Plan Coordinator. If the Plan Coordinator believes that there are concerns that are not addressed in this Plan, the Plan Coordinator shall notify the parent(s) or legal guardian and schedule a meeting that shall include the parent(s) or legal guardian and the student.

*Academic accommodations necessitated by changes in cognitive functioning due to IBD symptoms/diagnosis must be addressed and considered separately on a case-by-case basis.

Emergency Contacts

In case of a medical emergency, school personnel will notify the Plan Coordinator, who will call ______________ at the following telephone number(s):
Home: _________________
Work: _________________
Cell: __________________
Other: _________________

Signed:


__________________________ __________________________
Parent or Legal Guardian Plan Coordinator

__________________________ _____________________________
Parent or Legal Guardian School Principal

__________________________ ____________________________
School Nurse Student (if able to understand considerations)

Last edited by DustyKat; 11-03-2012 at 06:18 AM. Reason: Made more user friendly.
10-16-2012, 02:03 PM   #22
Hope345
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Need advice from other parents of children who miss a lot of school. Our daughter missed the last half of her 7th grade school year - we tried at home school instruction, but she was in too much pain to do any studies. This year has been better but she has missed a lot of school already, with either Crohns discomfort, sore throats and more. It feels like a never ending process. We are fortunate to be in a program (504) that will work with B through her college years. Crohns is a life time disease, and we continue to look forward to a day of remission. My concern is that she continues to get behind and I dont want to stress her out either. Just when I think we are on the right track there are set backs. The cycle is never ending. I know it has only been only 8 1/2 months, but it feel like there will always be something to keep her home from school. Just want to know if others are in the same position and if they have words of advice.
b's health is most important, but need to look forward to her being able to continue learning.

thank-you

Last edited by Hope345; 03-15-2013 at 01:14 AM.
10-18-2012, 02:58 AM   #23
DustyKat
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I'm so very sorry to hear about Baylee...

Not being in the US I am clueless as to how the 504's work and what else may be available to you but I know there are quite a few US Mum's on here using them and with experience with children that are primary school and above so I will tag a few.

kimmidwife, crohnsinct, Clash, my little penguin, Jenn, Crohn's Mom, AZMOM, imaboveitall, Patricia...I hate doing this as I know there will be some I have missed!

I know some are also home schooling.

Dusty. xxx
10-18-2012, 08:50 AM   #24
Clash
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Julie I am we are in the same boat, we have 504, my son is 16 and in 10th grade and even with meds, planning, 504 he has really missed a good amount of days. I become concerned too because just the sheer volume of make up work from absences stresses me out and I worry it stresses him out too. No advice but just wanted to send my support!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
10-24-2012, 03:31 PM   #25
Jenn
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Location: San Diego, California
Fortunately, we have not missed this much school (yet, knock on wood...). And I just started the 504 plan but it has already reduced my stress a ton just knowing we have something in writing to protect him in future. It should provide for a home tutor to keep your daughter up to speed. Another option might be a charter school where the class size would be smaller? But it sounds to me the key is getting her healthy enough. It's a lifetime illness, yes, but her treatment should be making her feel better. What is she doing currently, what have you tried? Probably worth discussing again with her GI. Hope you can get her in good shape SOON.
__________________
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (25mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
10-24-2012, 05:22 PM   #26
Hope345
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Location: eugene, Oregon

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Thank-you everyone for your support. We made a decision on Monday, Oct 22 to take Baylee out of public school and do homeschool. It was the best decision for Baylee, I am sure of it. I noticed a difference in her immediately and I am ready to take on the task. She wants to learn when she feels well and we already started. I will certainly need any advice or ideas from all...
thanks again
10-24-2012, 07:55 PM   #27
my little penguin
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Hugs ... Most states have free cyber school programs to make homeschooling a little easier for you and her. There is also a very good program through Johns Hopkins university and Stanford university for kids age 4-18. ( mainly for gifted kids but you can pick and chose if she excels in one area )
http://epgy.stanford.edu/ohs/

http://cty.jhu.edu/
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08-05-2013, 02:51 AM   #28
DustyKat
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Location: New South Wales, Australia
Sending a Chronically Ill Child to School:

Good article and links, paricularly for those in the US.

http://ibdcrohns.about.com/od/parents/a/kidsschool.htm
05-06-2014, 02:41 PM   #29
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· Stoma
I thought I would add there is a Scholarship for Canadian Kids from AbbVie Scholorship application is now open:

http://www.ibdscholarship.ca/EN/index.php

Whether you are currently living with Crohn’s disease or ulcerative colitis [the two main forms of inflammatory bowel disease (IBD)] it can be a challenge to sustain optimal health. You are confronted with daily distractions and obstacles, but strive to uphold a balanced lifestyle. Your perseverance and ability to reach your fullest potential is an inspiration to others who are living with Crohn’s or colitis. Through the AbbVie IBD Scholarship Program, Crohn’s and Colitis Canada wants to help you rise above your personal challenges in pursuit of your dreams.
The AbbVie IBD Scholarship Program awards students who are living well with Crohn’s disease or ulcerative colitis and who strive to sustain an optimal level of wellness, allowing them to excel and inspire others to do the same.
Supported by an educational grant from AbbVie and made available through Crohn’s and Colitis Canada, these scholarships are available to students of any age, living with Crohn’s disease or ulcerative colitis who are entering into or currently attending a Canadian post-secondary educational institution in 2014.
__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
01-27-2015, 10:56 PM   #30
apl2018
 
Join Date: Jan 2015
i discuss going to college with crohns in my blog

Last edited by Jennifer; 01-28-2015 at 02:59 AM. Reason: link removed
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