School and Invisible Rare Diseases
- kerriengebrecht
- Apr 14, 2023
- 4 min read
I was not going to post today, but it is Adrenal Insufficiency Awareness Month and my morning has taken an unfortunate turn. My son is fine, but I do not do this just for my son, but for the community and my heart is always with children. I will not share specifics of what is going on, as I have not been given permission, but will use examples from our story. I am no expert on this and you will see that in some things I succeeded for my son and some I failed miserably, in all I learned lessons. Everything I am speaking about is from my experience and knowledge with public schools, and using Addison's Disease as the illness.
First off, health plans. Health plans are just what they sound like and may have different terminology in different states and districts, but this is what needs to be done for the child's health. Our health plan was color coded. Green was what was needed at school to maintain stable health on a good day. For our son this was having his daily medication in the office in middle school and on him in high school. On yellow, when he was feeling a little off we would step things up a bit. He would go to the office for any OTC medications to treat symptoms that may be contributing, such as headache or allergy medications. At the same time the endocrinologist also had specific instructions to bump up his medication to make up for the cortisol his body cannot make. And on red he would be on the verge of a crisis. This step had a list of all the signs of crisis and how the school should respond. In our case it was to inject with his solu-cortef (we always had multiple staff members trained on administration of this), call 911 and then call me. It is important to make sure that the health plan is able to be administered in all school environments - recess, encore classes (art, music, gym), and field trips.
504s are the next level for schools to work with families on the health and education of children with special health needs. A 504 is to provide accommodations so that each student has appropriate access equivalent educational opportunities. I am still using Addison's as my example so the accommodations I use may differ depending on the illness that the student has. With Addison's Disease proper hydration with electrolytes and foods rich in sodium are often recommended. In these cases a student may have an accommodation for having electrolyte drinks and salty snacks in class. There are times with many chronic illnesses that the fatigue is debilitating and students need to time to rest in order to learn effectively in the classroom, for these children breaks in the nurse's office or another quiet place may be an accommodation. Truancy is a real problem schools face - our doctor wrote a note asking for the accommodation that our son would not be subjected to the truancy rules for illness related absences. Also, there were extensions on the length given for how long before make up work would be due. Other accommodations that we had in place were to help with difficulties concentrating and anxiety that included specific seating that was best for him, fidget objects, test taking in separate areas, and assistance with taking notes. There may be other accommodations that will bring other children up to a level playing level with their peers in an educational setting and that is purpose of a 504 - equal opportunities for all students in school.
IEPs are where I wasn't able to help my son. Three times I pulled teams together. I had advocates come with me. I watched our son's aptitude scores plummet after his medical trauma. I honestly believe to this day that something changed cognitively in our son - while he is still bright and has a unique way of seeing the world, he had a harder time expressing it. IEPs are adjusting the curriculum to fit what is appropriate for the needs of the student. After the third time of being told that my child was lazy (and he was told that many times himself) and just not trying hard enough, I was certain that the school was harming him more than anything in the school district was helping him and made the difficult choice to home school him through the end of high school. IEP evaluations are stressful and parents need to go into them prepared, but not intimidated. My story should not scare anyone who feels it is necessary for their child from trying to implement one for their child. I have been told numerous times how wrongly we were treated by the school district. What a parent does need to be sure of is that their needs cannot be adequately met by accommodations in a 504 for the existing curriculum.
I want to end this by stating that education, while important, is not nearly as important as your child's health and safety. Make sure that there are people who understand your child's illness at school. It is likely that not everyone will understand, but having some allies in the school will make a huge difference for you and your child. If there are special and complicated protocols, like the one I explain for our emergency injection, please find out who can and is willing to perform these duties - there are different rules and regulations in according to districts, cities, counties and states. Make sure that among those who are able to do the necessary steps to save your child's life they are also willing to. This last part may sound ridiculous to have to ask, but it can be necessary.
For more about 504s and IEPs please see:
https://www.wrightslaw.com/info/iep.index.htm
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