A pile of paperwork, a can of gasoline, and a lighted match...

There is one thing I love unconditionally about autism. Calvin Michael Stroh-Simon. My baby-doll son. That kid in the picture with the face like an angel, who is right now filling the room with sweet little songs in his mysterious elf-language, sitting by the window watching the wind move, his favorite.

So wanna know what I hate unconditionally about autism? Just about every other friggin thing.

A big thing I hate, one of the biggest probably, is not being able to get through a day without slogging through some multi-step bureaucratic nightmare that takes a ream of paper, no less than 35 phone calls, and somewhere around 80 emails to negotiate from A to Z.  Maybe that doesn't sound so bad, but if you know me well enough you know I'd rather get a soapsuds enema out of a power washer. I AM NOT GOOD AT THIS. I'm not built for it. I need directions, clear ones, step 1, step 2. It's why I bake amazing cookies and can crochet a nuclear device out of recycled T-shirts. Recipes. Instructions. Insert tab A into slot B, and all the better if there are illustrations or a youtube video.

Guess what. There ain't no fucking recipe for this everloving mess. Not even close.

Maybe picture it as a game of Chutes and Ladders, remember that fun little pastime where you could be a hairsbreadth away from the promised land of Chocolateville or whateverthehell, only to land on the fun little space that sends you flying back down to just about where you started? And there your little piece lands, right on its ass, wanting to punch things until all its little cardboard knuckles are bloody and raw? Remember that?

Well, ok, as usual I exaggerate. It's not that I "can't get through a day" without Chutes and Ladders hell. I can get through plenty of days without doing any goddamn thing anywhere on the whole goddamn board. But here's the bitch of the thing. Any day I take off from Chutes and Ladders is one where I haven't done everything that needs to be done for the boy and his care--and then by extension, for the 4 of us here who all live together in our crooked little house. Neglect the cable bill for too long, they stop letting you use the on-demand feature...disappointing but oh well. Neglect playing Chutes and Ladders for too long and the bad things that autism can do to your life grow and swell and bloat and you're worse than nowhere.

Oh, and there's a punchline. Any and all assistance you're trying to secure through this crazy-ass labyrinth might not even exist for all you know...or you may or may not be deemed worthy to receive it...because please, don't worry, if there's anything that we in the world of developmental disability know for sure, it's that we're not "entitled" to any of these gifts and graces we're devoting our lives, full time, to get our grubby 47-percenter hands on. So anybody overly concerned that I'm expecting a free ride while I lie here on my ass and eat unsold girl scout cookies, keep your shirts on, drink your tea.

That's all, just full of venom and self-pity and hormones and profanity and stupid stupid tearful rage today and I know if I post this people will say kind things and remind me things aren't really as bad as they seem.

So go.

(P.S. If you want you can even tell me I'm still pretty.)

Homework: I'm so over it...

Lots of people are not going to want to hear this. But I'm going to say it anyway. (That's starting to sound like a familiar refrain with me, holy crap what a troublemaker, sorry.)

It's about my 8-year-old's homework, and here it is:

Other than supervised reading time, reviewing of math facts, and studying for a test coming up the next day, homework in elementary school, and possible even through middle school, should be eliminated. Period. 

I'll just give that a minute to sink in, parents...because I know it's the after school hour, and if you're reading this, and you have a grade-schooler, he or she might just be terrorizing you over the topic at hand. Ok, moving on.

Homework. I want it abolished. It wastes time and is crazymaking and it's got to go. Parents, dear dear parents, I know a lot of you are thinking it. And you feel like if you say anything you'll be viewed as a useless shirker and irredeemable lazy-ass pig. Lucky for you, I don't give a shit if anyone views me as a useless shirker or a lazy-ass pig, because I probably have even better and more colorful names for anyone who would dare. I might even know some card carrying public school teachers who agree with me wholeheartedly, although I would never mention their names here lest they end up on a black list, or have their laminating machines revoked, or worse. Suffice it to say, dear opposition, if you exist and are reading these words, argue with me if you want to, but I've been watching how this all plays out for almost 4 years now, and it's become more than evident to me that I'm right, you're wrong, get over it. 

And here's why.

When my daughter gets off the bus in the afternoon, she's spent. She's had it. She's one of the smartest people I've ever met, and a day of third grade makes her ready to pour herself a martini when she walks through the door. (We DON'T do that, it's an image meant to further my point, don't email me on this or I'll know that you're stupid.)  She knows when she gets home that she can have a snack, some downtime, maybe a half-hour of Sponge Bob (which is a hilarious cartoon, so go ahead and judge if you're an intolerable tool of a prig)...and then, well that's when the sad music kicks in to the soundtrack of our afternoon. Because now here comes the shrew tapping her foot, pointing to the clock, and demanding the child sit down and tackle the load in her backpack (and by the way, if she gets severe scoliosis or becomes a hunchback from having to haul that monster around on her 50 lb frame, you can guess who's being billed for any medical expenses not covered by our insurence, it's only fair).

Oh, and about that foot-tapping shrew...you may have guessed who gets that fun job. And it's a crying shame, because all the shrew really wants in her heart to do with her daughter when she gets off the bus is to have some snuggle time, or they could kick back together with a coloring book, or maybe even bust out the treasured miniature tea set to have a chat and sit a spell.  You'll just have to excuse the shrew if she'd like to sneak in as many of these moments as she can with the kid since there are pretty much just a few short nanoseconds left before she's grown up and moved out and left me...I mean the shrew. So can you cut us a break?

Answer: no.

Instead what happens is she goes over to her homework spot...I'm sorry, did I say that she goes over to her homework spot? I meant she trudges over there as if there's a root canal with her name on it waiting for her to sit down and enjoy. Then she gets to agonize over a folder full of a mishmash of worksheets, and a couple of workbooks, and what's today's agenda say to do, well that doesn't make sense, whups forgot the spelling book, what's this now, oh, refer to the 20 pound science text to answer the following questions on topics Mommy didn't need to deal with before Advanced Placement bio, but whatever. And math. Draw an array to figure out how to divide 72 by 9. Ok, but first, WTF.

Um, yeah.

So here we are and it's crystal clear that the kid is already cooked, stick a fork in her, she's done. So guess what, it doesn't take much before she's crying and moaning and standing before me with her giant wet eyes--the ones she usually whips out on these occasions are the ones that go, "I'm a 19th-century starving urchin in Merry Ole' England, crust of bread, gov'na?" Oh don't worry, I'm ready for it, she's not going to get the best of me. I gather myself up and start spouting in reasonable mommy language a bunch of horseshit when all I really want to say is Jesus H., Grace, if you'd just chill out and stick with it you'd be done in 20 minutes or less. We'd be on our 8th consecutive Sponge Bob by now and all would be right with the world. But by now the torture has been going on for well over an  hour and we flipping HATE each other. 

Oh, and by the way, if there's any after school activities the child is involved in that are, well, freeing and fun and good for blowing off steam...like maybe dancing or cheerleading or girl scouts or an awesome drawing club...well, then there's hell to pay.  So go ahead and multiply the above tale of woe times the square root of 152,000 to the nth power where "n" equals " a whole fucking lot, and there you have it (an equation which, by the way, will probably be covered in tomorrow's math homework, so yay).

Well, maybe this nonsense has got to stop. 

Teachers, I do not blame you. I truly, TRULY don't. No sarcasm. I know you're mired in a dizzying web of requirements and responsibilities, most of which bear no connection to anything resembling the teaching profession you believed you were signing up for as you worked your asses off for the pieces of paper that eventually allowed you to apply for your jobs. Requirements and responsibilities that take up so much of your time you're probably lucky if you're making minimum wage per diem, and how sick is that. Nobody can fault teachers for any of this...most school boards do not give tenure to rabblerousers.

I'm thinking more along the lines of, what if all of us who are responsible for the care and well-being of these kids took a stand to stop the madness. It would have to be all of us, or at least most. I'm going to need a lot of cooperation here. My voice in the wilderness is just a crazy nut. All our voices are...well a whole bunch of crazy nuts, which is scarier and therefore potentially more effective. Take Congress, for example (I know, am I a card or what...just wanted to make you laugh.)

Before I go, don't get me wrong, I know my daughter needs to learn to be responsible, and to be willing to tackle tasks that might not be the most immediately gratifying but worth it in the end, and to learn follow-through and feel the sense of accomplishment that goes along with it, and blah blah blah.  But something's wrong if it's like pulling teeth...out of an alligator...who has lockjaw.  Right?

Well, talk amongst yourselves and get back to me. Maybe we can start a movement.

For now, I have to go get my girl off the bus. And I'm really not in the mood for torture, so today might be all about the tea party.

Not THAT tea party, jeeze!

You guys are too funny.

Unnecessary Evil

The following is the (slightly edited for clarity) text of a public note I posted on Facebook. I'm posting it here so that people who follow my blog can see it as well, and pass it on as they see fit.

(P.S. I have no idea why blogger is doing this horrific white thing to the text, I can't get rid of it, sorry.)

Today was Calvin's CSE meeting where we meet with the committee for special education to map out his program for this summer and the following school year. And it went exactly right, just like last year. Excellent team working with Calvin in a setting that could have been designed with him in mind, providing all the services he needs. And if there are services we don't know to ask for, his teacher and therapists do. And not only do they provide all that at school, they help Mike and I learn to extend it into the rest of our lives as well. What a concept. That's what you get at the Orange/Ulster BOCES STRIVE program. And as an extra bonus, you walk out with the same number of gray hairs you walked in with, and you don't need to start popping blood pressure pills like Tic Tacs. 

I feel blessed and thankful beyond reason. 

And I really mean beyond reason, and maybe against all odds, because all of the above being said, the fact that I know so many families that are suffering and struggling and fighting tooth and nail for their kids' even most basic educational needs makes me seethe with a rage I can't describe to you without starting to cry.  I was warned, if your son needs BOCES, if he needs that restrictive environment, get him in there from the start or you're screwed. This was the warning I received from the parents who'd gone before and bought the load of crap about how appropriate the mainstream school setting would be for their child and are now suffering the consequences. I owe each and every one of these families a debt of gratitude I can never even begin to repay.

All this isn't just wrong, or sad, or tragic. It's criminal. And it quite literally breaks the law, although that doesn't seem to matter much, even for parents who try and use the courts to fight for their legal rights.  They don't win. They spend their life savings and they still don't win. An old family saying comes in handy here: IDEA law? That and a piece of toilet paper and you can wipe your ass with it.

I know that in each of their cases it's nothing but money and politics at fault. That's all. Which makes it so much worse that it makes me feel like I'm choking and can't get air. I can't breathe, and these are "other people's children." Yes, there are excellent programs. Excellent professionals. Appropriate settings. All available, all a reasonable bus ride away...all dangled in front of parents who spend their lives researching and finding these programs but who cannot get to access them. Not without selling their homes, and an internal organ or two. It feels like spite. But don't take it personally. It's just politics.

And you wanna know the best part? Here's the best part, my favorite effing part of all. As the autism epidemic soars, and nothing continues to be done about it, eventually it won't be some piddly margin of children that will need special education. It'll be almost all of them. And as for educators, instead of having to worry about losing their jobs because of standardized test scores--a reality so stupid it's hard to believe anyone coming up with it has an IQ any higher than that of a can of soup--they'll be retraining so that they can teach their students how to walk, talk, use a spoon and fork, follow one-step directions, use the toilet, and survive a medical check-up or a haircut without withstanding feelings of horror so bad that the rest of us are lucky we don't have to go through it and instead just get to look on helplessly.

Yep, maybe when we come to this inevitable state of things--with no end in sight with regard to the systematic poisoning of tiny babies' brains so that people who are already millionaires and billionaires can profit some more--maybe, just maybe, the necessary services will start being made available to all those who need them. And kids without disabilities will be so much in the minority, nobody will know what to do with them.

So yeah, that's all coming, but in the meantime, rage and grief and endless endless heartache for family after family. 

This note is public, so don't feel shy about sharing. All I know how to do is write. I don't know how to make the people who are responsible for this hideous damage stop doing what they are doing. But the more people who get pissed off about this the bigger the march on the White House Lawn will eventually be. And maybe that'll help.

Something has GOT to help.

(This is Cal with his phenomenal teacher...I'm spying from the sensory tent so as to observe oh so stealthily)