When Joey was small, IEP season meant weeks of angst, fear, research, late nights worrying about doing things right, doing things wrong, what to fight, what to compromise, and what Joey's future might be. The pressure for early intervention, the stress of finding ignorance where you were supposed to find wisdom, help, and support, and the absolute terror that if you took a misstep, Joey would suffer; these are things that meant weeks of preparation, power point construction, and study of goals, possibilities, services.
IEPs shouldn't be this way. Being part of the team shouldn't mean a parent should have to become a PhD in disability, education law, and service plans. Why have a team at all? As a partner, the parent has vital information about the child and the needs of the child, which need to be translated into schoolspeak and effective goals, accommodations, and programs for those children by professionals on the team. That isn't what usually happens, sadly.
And because it isn't that way, I found that all those weeks and hours were mostly a waste of time and a builder of stress, rather than being helpful to anyone, including Joey. My time and energy was better spent on Joey himself, because school just doesn't really get it. They are going to do what they are going to do, and you can have a ton of stuff added into the Present Level of Performance and have 15 goals and write out every little bit of accommodation and strategy he needs, and they are still going to call you at noon to tell you that oh, dear, he's just a mess today and ran out of the building. Really, the way we lessened the "come get him" response was to put him in a special school.
What goals does he need to meet to become independent? How much expectation can we have of him ever being independent? Since he is academically fine, will he lose support at 18? What if he isn't ready to function at 18, even if he's mastered calculus and won a Nobel Prize?
How do you get an IEP to reflect "we have to get him through puberty, people!" ?
So instead of weeks of planning, reams of paper, carefully constructed notebooks and powerpoints and statements- all of which were rewarded by rolling eyes of teachers and administrators- we look over the draft, chat a bit about how they don't address this or that, cross our fingers, and spend a couple sleepless nights realizing we should have done this or that, years ago, months ago, in this grade or that grade, but can we fix it now? Is it too late?
The angst seems to be less focused and sharp, more insidious and pervasive. It's exhaustion. Knowing that all that effort, and here we are, with the same question: what will happen when it is time for him to be an adult? Will he be able to advocate for himself and live independently, or should we start preparing for him to need support and stay with us?
It is a question no one can answer, because like all human beings, his development is going to go at his pace and in his time and with his agenda; not ours. Trying to get that translated into schoolspeak has proven elusive. What skills does he need to get to that goal? It is difficult to put a finger on them.
I can say that a person who walks up to random people in a store and tries to start of a conversation with "I lost thirty pounds in three months!" is... unexpected. A person who loses ability to self-regulate when frustrated is likely to be killed by police in this day and age, because of that same unexpectedness. Much of the fresh, bright, joyfulness that makes Joey so much Joey is going to be rejected by the wider world as strangeness, and people fear the unexpected and the strange. What will he need to survive a world that is going to be afraid of him, think he's strange, and probably assume he is stupid and less?
Yep, 2am, the morning of an IEP meeting. The one that will start his high school career. Maybe I should make a quick powerpoint...