Hey farmerswifey,
Sorry for the late reply. :redface:
There isn't an equivalent to the 504 in Australia but all schools across the country must adhere to Commonwealth Anti-Discrimination Act. You will also find that the Education Department in each state has a Disability Policy, this is Queensland's...
http://education.qld.gov.au/schools/disability/index.html
As to our experience...I had no problem with the school my children attended and whilst they were more than accommodating it took me some to realise that when it came down to it they didn't really understand what we were dealing with. I kept them fully informed at all times and spoke with them regularly about Sarah so made the assumption that they 'got it'. Like I said, they were fab but something was missing.
What I would recommend is to do what I did when I came to my senses. :lol:
I asked for a meeting with the Principal, Deputy Principal, all the teachers Sarah had, the school counsellor and any other staff that were involved in her teaching/care. I made it clear when making these arrangements that i would be conducting the meeting. I wrote the following report:
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.
Have a look through this thread. This is where the letter is located but it has loads of other useful information in it:
http://www.crohnsforum.com/showthread.php?t=18420
I gave a copy to each person present and told them that I would read through the paper, expanding on what was written, and if they had any questions to please ask as I competed each topic. I then asked again if they had any questions when I had finished reading through it.
As you can see at the end I listed additional points for discussion. It was during this time that I stated what i expected from Sarah in terms of her Crohn's and what I expected from the school in return.
You will also see that in Sarah's case she had issues with anaemia, toileting, eating, etc that did impact on her levels of fatigue and concentration.
The meeting was the best thing I ever did in terms of getting us on the same page. When it came to Matt then being diagnosed i did not need to go this extent again, and again I had no issues with the school.
Good luck! If you have any other questions ask away!
Dusty. xxx