I have also started to research what I need to do to protect Kyle in school. It is a year away, which is good and so annoying at the same time. He is 12 days too young. But his mind....
I was reading some documents today on American Partnership for Eosinophilic Disorders, ya know since Kyle has an eosinophilic disorder and several other disorders/diseases/medical conditions :)
This was a piece of advice:
Check your emotions at the door. It can be frustrating to try and explain a confusing disorder to educators and people who help support your child all day. It is inevitable that you will be faced with difficult situations that generate feelings of anger, frustration, sadness, and isolation. However, it is absolutely critical to focus on the factual information available
[I failed at this today, I threatened to make a scene and/or make someone very uncomfortable if I was forced to come in for an appointment with the child psychiatrist, so he could make a med change. The administrator asked how that particular threatening behavior was working for me....I said, "Well! My son gets the care he needs!" And the psychiatrist that on policy does not do anything on the phone---you aren't even allowed to leave messages; he called me and it was a 3 minute conversation including new drug, dosing, side effects, and going over the address of my pharmacy. We will be looking for another provider.]
Engage with the school as though you are entering into a business transaction. There is an identified problem or need that must be addressed. The goal is to find a resolution that creates a win-win situation for the child and the district. Emotions do not have a place in most professional situations, and the same is true when dealing with the school system.
Then this is what (at a very basic level---if he has no other needs) needs to be addressed:
Accommodations should be written to address the individual needs of the student. The following are examples of accommodations for a student with an eosinophilic gastrointestinal disorder in elementary school:
- Allergen interaction plan including medication (i.e., epinephrine/EpiPen®) storage location, administration, etc.
- Description of nutrient intake schedule
- Description of medication administration
- List of trained feeding tube administrators (FTA)
- Description of tasks to be performed by FTA
- Description of training for FTA
- Off-campus activities covered by FTA
- Designated locations where nutrition support (e.g., formula intake, bolus feeds, etc.) will be provided
- How lunch and snacks will be accommodated for safety
- List of “safe foods”
- Availability of water/food/restroom access
- Who will provide safe foods, supplies, etc.
- Location of storage for formula, safe foods, feeding supplies, etc.
- Full participation in all school-sponsored field trips and extracurricular activities
- Accommodations for field trips and special activities (parents should NOT be required to attend for student participation)
- Extra time/testing accommodations
- Teacher to provide missed instruction
- Reasonable time period to make up work
- Absences without penalty when related to the disorder
- Guidelines for handling vomiting and bowel disturbances related to the disorder
- Parent to be notified in advance of special activities
- Parent to be notified in advance of food-related instruction
- Parent may send in snack or special instructions
- Substitute teachers provided with written instructions
- Equal treatment and encouragement
- Privacy provided if desired
- When to notify parents of concerns
- Emergency contact information
Aiden will need one too.
How am I going to do this?