That’s right. That’s where I am.
I will not play nicely anymore, not while the school year slips away without LRHF getting what he needs.
I have no idea where to go next, but I am drawing on the sheer Badass-ery of how pissed off and tired of this crap I really and truly and rightfully am .
Because we are wasting my son’s time.
Do you want to know when I scheduled the meeting that closed down the media wing (Fuzzy gives me a hard time when this happens, as it apparently cuts into his Library Time, but hell, I’d meet in a lavatory stall if it got the job done, so yeah…) at which I wore real pantyhose and spoke relatively eloquently (and probably for a long time, too) about What My Son Deserves and What The Law Says and also How It Is All Perfectly Do-Able? Do you want to know when we had that meeting at which the Director of Special Education showed up everyone listened and smiled and agreed all over the damned place about every single damned thing on my LRHF List?
November 26th. Last November.
That meeting was months ago. Months ago. Oh, the magnificent things to which we did agree! It was, in fact, a veritable love fest, as such meetings go. You should have seen it! I was super-empowered (For the record, I think the pantyhose had a lot to do with that. Also, I wore grown up shoes, not my Birkenstocks, and I think that probably helped as well.) and super-focused, and I stayed on task and was not distracted by shiny things at all–after all, you know how I am about shiny stuff. Seriously, I was amazed at how well it went, that little meeting of mine. One hell of a meeting, as meetings go.
Right. As meetings go.
LRHF Binder (LRHF not included)
I had a list, a LRHF List of The Stuff LRHF Needs, and it was all right there in my Big Green LRHF Binder (Did you know about binders, by the way? OMG. They are amazing–Here’s how you do it–you put all your important stuff in the binder, and then, when you need that stuff again–Whammo! Important stuff right in the binder, exactly where you left it! Really cool stuff. Of course, I can’t lay my hands on the Big Green LRHF binder right this minute, but I’ll keep looking. I’m sure it’s here, it has to be here somewhere…)
Oh, and I had all the really cool acronyms…the IEPs, chats with ADAP, the AT assessments and recommendations from the SLP, the FIP and FABIP (performed by a BCBA, of course) and then, all of the standard FAPE and LRE stuff, you know. Actually, if you don’t to know, then count your blessings about it. That’s a lot of letters and the more you say them, the more you feel like you’re reading from a Thai menu, believe me.
Still, at least I had the Big Green LRHF Binder, right?
Gosh, how do I back track through this mess? Back to last year’s mess? Back to assessments that are almost a year old? I guess I haven’t said much about it because it is awfully overwhelming to find out that your kid isn’t getting a decent education, a free and appropriate education in the least restrictive environment. You feel pretty overwhelmingly stupid about it. It’s actually quite exhausting, keeping this kind of mess just at “overwhelming” and not let it seep into “paralyzing,” because it could so go there.
And that’s no good to anyone. So yeah, I try to stay right on the bubble at “Overwhelming.” Yay, me.
But back to the meeting…lots of talking, lots of agreeing, people taking notes, plans made, options considered, that sort of thing. And we decided, no, we agreed that it was reprehensible that LRHF did not have the technology he required to have access to the curriculum. This is a fancy way of saying that he needs an Ipad and some software so he can functionally communicate with his teachers and peers. So we can measure just how clever he is and address any deficits. So he can tell his mother how his day went.
Little things like that.
Because until this technology is in my son’s hands, we are all just guessing, and that’s not good enough. I am his mother and I can only guess how his day went.
Let that last sentence sink in for a minute. I dare you.
He banged his head rounding a hallway corner awhile back and the nurse called me and she had to guess that he was okay. His teachers have to guess how smart he is and guess where he’s frustrated and freaking guess when he has to use the restroom, for God’s sake. And let me tell you about the guessing thing–people will always guess that the non-verbal kids are kind of stupid.
Really. Apparently this is the default setting.
I am not going with that.
There are behavioral issues that need to be addressed. How could there not be behavioral issues, since the kid can’t communicate even the simplest of requests? Honestly. But dammit, why are we trying to “guess” about behaviors? That’s like playing charades with someone who isn’t in on the game. Or someone who doesn’t want to play the game. Why should LRHF have to play charades?
So where does that leave us?
I would like to be able to tell you that we are following all the appropriate protocol and acquiring all the necessary documentation and speaking with all of the salient administrators, and that things are smoothing over quite nicely for my son because he has a functional means by which to tell his teacher he needs to use the bathroom. I would love to be able to do that. In fact, if we go by what happened at that magnificent and happy meeting way back in November of last year, I should be able to tell you that. After all, we agreed that I should be able to tell you that.
But I can’t tell you that.
Nothing has gotten better. Nothing. And I know that nothing has gotten better because I have it all written down in my binder. Can you imagine not being able to ask your child about his school day? It is beyond sucky, it’s scary. Sometimes I think I imagined the whole “hey, let’s give the kid a way to communicate” thing, but I know I didn’t.
I have the notes.
There are big laws against this sort of thing, just so you know. In case you find yourself in a similar situation, you should know that yes, it is against the law to treat a child this way. And yet…
Do you remember those Early Autism Days? Back when I couldn’t say the word or bear the thought? Well, this is harder than that. Why? Well, it’s funny, I guess, because everything has flipped around and now I can’t stop bearing the thought and I won’t stop saying the word. Autism.
Autism. Autism. Autism.
My son is magnificently autistic and this is all wrong, where we are now. And I’m just so angry–maybe I haven’t gotten that across here but I am really, really angry. Worse, I don’t yet know how to make it right. I’m mortified that my son has no voice, horrified, in fact. Every day, every phone call, every conversation and correspondence is an exercise in staying on the “overwhelmed” bubble without slipping down.
This is hard. But this isn’t about me and it isn’t optional, you know? This is what moms do.
My Magnificent Autistic Son. No Trade-sies.
Because it is one thing to have an autistic kid, and another to have a remarkable autistic kid. But the most difficult part so far is to have a remarkable autistic kid and not have what he needs.
I am standing up for my son, speaking for him until he can do it for himself. Until that moment, I am screaming at the top of my lungs for him.
Because I can.