Two very special stories

Oh, hey, how’s it going? How was the start to your school year? Please pardon me while I have this wine IV set up so I can tell you about ours.

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I don’t write much about the special ed process. And by that I mean that I don’t write a lot of stuff that I publish about the special ed process. Partially this is because a lot of people who read my blog also have kids that go to Kai’s school and going public with my angst about it potentially villainizes people that the community needs to (and should) trust. But it’s also because the process of getting services for child is set up specifically to take a normally confident and reasonably intelligent woman (me) and emotionally abuse her until she is but a husk of her former self, and by the time she climbs back out of that abyss, she’s moved on to more mundane matters like her son escaping the house in the middle of the night.

Kai’s IEP (Individual Education Program for those who are lucky enough not to know what that is) is the plan the public school system creates for educating him. Every child with a disability is entitled to free and appropriate education. This is a law, so the district has to educate Kai and it’s their job to figure out how to do it. Awesome, right? Except…

Except that this costs the district a lot of money. It's way more expensive to educate a kid like Kai than a kid like Ryan. Ryan just goes to school, learns stuff from her general education teacher, puts on her backpack and comes home. Kai, however, in addition to getting time with a special ed teacher, speech and social work services, has a person whose job it is to be by his side all day helping him stay on task and keeping him from wandering away or whatever else. This is a salaried position with benefits dedicated entirely to a single student—Kai. (What’s up, Dalila? Shout out!)

On the second day of school, Dalila informed me that she was told that she wasn’t going to be with him for recess or lunch this year, this according to the person in charge of scheduling the aides, and I threw what could only be described as an obscenity-filled tantrum right there on the playground and had to be asked by a teacher to please calm down in front of the children, to which I huffily replied that these were urban children and had probably heard it all before, but left the playground anyway before someone called the authorities.

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Anyone in Chicago knows that the school district is broke and screwed, and in an effort to save $42 million, they devised a plan to “modify” services to 50,000 special ed students. Seems legit. I mean, why not balance the budget on the backs of those most vulnerable? And why worry that the district just moved to a new office and bought all new office furniture because their old office furniture didn’t fit in the new space quite right when we can just toss a spectrum kid on the playground to wander off or get bullied or abused by someone who doesn’t know how to work with him? Am I right?

(Head explodes, painting the kitchen walls with blood and bits of gray matter.)

Anyhoo.

Kai was okay because CPS has to implement his IEP, which includes his aide and special ed modifications. Or should I say, he was okay until he wasn’t. Dalila told me to check Kai’s IEP when I got home, and, with a pounding heart and sweaty palms, realized that lunch and recess aren’t specifically mentioned.

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I did the only thing I could do at that point, and fired off an angry e-mail to the case manager. He’d had his aide for lunch and recess last spring after the new IEP had been set up in February, so what had changed? And then I asked that we meet to change the IEP to include lunch and recess, that I never would have signed off on an IEP that didn’t include them.

And then I said that Kai wasn’t going to school until there was a plan in place, an option that is pretty close to nuclear.

And then I waited for a reply. And waited. And waited. And the sun set and day became night and I fed the kids dinner and tried to calm down enough to teach a yoga class and later tried to get some sleep but tossed and turned all night, running over every possible outcome and fearful that we would have to take this argument to a higher authority or get lawyers involved and then I began to doubt myself, like had I overreacted and gone all over-the-top with my outrage in threatening to pull Kai out of school? And then assuring myself that I’d done the right thing, but did they secretly think, oh here we go again with Mrs. Judy and her precious snowflake what makes her think they’re so damn special, and then I reminding myself that I wasn’t there to make friends but to fight for Kai, even though I secretly want everyone to like me and that’s where morning found me last Thursday—with dark circles under my eyes and hands shaking from too much compensatory coffee.

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Over the summer I’d heard whispers of this, that the case manager might try to decrease Kai’s aide minutes, and I’d told my mother.

“It’s smart of them to choose you to try that with,” she said.

I looked at her like she was nuts. “But they know I’d never let that happen,” I argued.

“Exactly. That way, they can go back to the district and say that they tried but couldn’t make it work. You don’t do a job like that without being somewhat political.”

I thought about that while I waited for the case manager to show up on Thursday morning. Did I go crazy on them, and in doing so behave exactly the way they predicted I would? Or is that very thought the sort of paranoid delusion of a crazy person? And when the case manager showed up and calmly explained that this was all just a Silly Misunderstanding and of COURSE Kai has recess coverage for his safety I still wasn’t any closer to an answer regarding my potential for psychosis or their potential for treachery, but Kai still had his aide so I just left it at that.

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We are okay until December, and after that, who knows. I mean, after that, no kid in Chicago is safe because the budget includes $500 million unicorn dollars—money that’s in the budget provided the Illinois government generously decides to give it to Satan’s handpuppet Rahm Emanuel. Considering that Early Intervention therapists aren’t getting paid to treat special needs toddlers and Illinois lottery winners aren’t getting their awards because the governor wants to burn the whole state to the ground, well, feel free to draw your own conclusions.

(Head explodes again.)

Anyhoo. That’s a story for another day.

And speaking of stories, Kai told his speech therapist the story of the day he and Stella met on Monday. It was the longest string of sentences he’s ever spoken, a true story with a beginning, middle and end, punctuated with funny and sweet observations (“We drove for many hours, saw some windmills, then drove for many more hours.”) It was so long that the therapist realized that Kai’s voice lilted up and down during the course of it because he has no practice putting so many words together and breathing at the same time.

We both stared at him, open mouthed, both of us rendered speechless.

So you know. Despite the school districts vast conspiracy to make me go insane, Kai’s sort of kicking ass right now.

With Dalila right there by his side.