Part 2: Find your zen place
There are a few good examples of 504 plans online, I’ll link to them later (I’ll also make Arden’s available). But let’s not jump too far ahead.
The first thing to understand is that you will sound like a loon (to the school) when you begin to describe how you care for your child’s type I. It’s unavoidable, everyone except those who live with type I are likely to think that you’re an overbearing, overzealous loon. Of course you know that you’re not and I know you aren’t, but nothing short of living with type I can convey it’s complexity... can it?
Since you can’t ask the school to come live with you for a weekend, how do you get them up to speed? The answer is patiently and methodically. Your patience will be rewarded as the uneducated staffers begin to catch on. Don’t forget that these folks have the added burden of wanting and needing to appear in control and you are flooding them with a lot of unfamiliar, technical and jargon laden information. You may find a nurse with a ton of experience which is great! However, that could also lead to them wanting to do things their way for comfort’s sake. If you have a different care plan in mind you are going to have to communicate it, perhaps multiple times.
You have to resist the urge to acquiesce when faced with pressure. They know what they know, you know how to care for your child. Everyone is different and the schools tend to think of all type I children as the same. There is a definite coalescing period at the onset of this process. If you loose sight of the fact that this is an adjustment for everyone, you can and will fall quickly into a righteous anger. That anger may feel good but it won’t get you to the desired ending, which is a safe, healthy learning environment for your son or daughter. It will just get you to paying for a child advocacy attorney and years of uncomfortable daily interactions.
I did well keeping this in mind... Yes the 504 act provides for my child but that doesn’t mean that the school isn’t going to react in the way that people often do when presented with change, with resistance. I always tried to put myself in the “schools” shoes before I acted. Remember, every time you make a request, someone has to address it and your 504 is full of requests. It isn’t fun being asked to do more when you already feel like you do so much and the additions that you are proposing, are at their core, more things for someone to do. These request aren’t just more work, they are scary. Face it, it’s scary to be left in charge of our children. The reactions you are likely to encounter initially are emotional, understandable and not at all about you or your child... you must resist the urge to respond to them in kind or things will degrade fast. Keeping this balance without giving up your position is the crux of the entire exchange.
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