Some Days, Y'know?

It was a little before noon today when the nurse called to tell me that Calvin was miserable and crying endlessly so I'd better come get him because they were stumped. So much for productivity. I'd only just summoned the will to pull out the broom and sweep all the debris on the main floor of the house into a ginormous pile in the center of the living room. Suppose I might as well leave it there indefinitely and call it modern art. Maybe the kids will enjoy jumping in it like a pile of autumn leaves. Right now I so don't give a fuck.

While on the way to school to pick up my boy, a stupid useless c-word pulled out of a parking lot onto the main road, which is normally a fine thing to do, except she wasn't looking and I happened to be in her way. The massive gray-black snow banks on either side of her might have been a factor, but you're supposed to peek around those before gunning it. Brakes work as good as the horn on my car, yay for me. Wanted very  much to pull up to within a millimeter of her back bumper and ride along the rest of my merry way with our two cars making sweet sweet love. Congratulate me that I didn't. That and the pile of modern art in the middle of the living room will be about the extent of my accomplishments today. I've done worse.

Just saying that I'm feeling a little discouraged (by which I mean burnt out to a crisp) but hopeful that this is the part of the movie where everything seems like shit on a shingle after a shower, then the clouds part, the sun pokes through, the plucky heroine gets a makeover and goes on a 10-day detox diet, and spring prevails.

I think that's probably the way it'll go.

Humor me.

Loving Avonte

I don't want to write this. I don't want to do anything but go back to bed...as though I have any "right" to be in such agony.  But I can't help it, so why even try.

They think they may have found this boy's remains, after months of hoping all would be well.

All I can come up with as an explanation for this despair that's all but doubling me over is that it's for all of us. For all us mothers who live with the shadow of fear of having to go through what Avonte's mother has gone through. For all of us who have survived the near misses, and for her and all the others who may be surviving the worst of all possible outcomes.

The spiritual reality I live in says that all minds are joined. Since this is true, then on some level this mother and all the other mothers can feel the unending love I have for them and their babies. They can feel the comfort, the healing, that I wish for them with all of my being...somehow...some way. You can add your unspeakably powerful thoughts to mine, and there's no telling the mountains we can move,,.mountains of grief...a thousand oceans of tears. We can do this for them. It costs us nothing. 

For Avonte's mother, I pray so hard that you feel your joyously free and everloving boy next to you always, forever, in a world without end, closer than your own breath and heartbeat, because I know that's where he is. Don't ask me how I know. I know. If I didn't, I don't think I could go on functioning.

I have to pull myself together now and go on doing the job that's mine to do. Mothering autism and all that goes with it. It's the greatest, most awesome gift I could have ever not seen coming. I thought I already knew that, but I may not have fully gotten it until today. Right this second..

Think the highest thoughts today, all the love in the world, in all the worlds. Picture that boy in the light as hard as you can. It's where he's always lived, and where he always will. No matter what the evidence from the water ends up telling us. Whether this boy has moved on to his next adventure, or is still somehow dwelling in ours, love him like he's your own. 

Because he is. 

Regarding Avonte

We're used to "If you see something, say something" as a way and means to keep ourselves from getting blown up by the bad guys.

Fine advice, but it's time for the world to learn how to use that same set of directions in more ways than just that one.

The world has to wake up to something it may not want to see, something it may be afraid to see, and that something is:

Our world is teeming with Avonte Oquendos.

You don't need me to spew the statistics, look them up if you haven't heard. And here comes the hard part, that part that we really don't want to think about:

The Avonte Oquendos can't go it alone. There's no luxury of "the world is my oyster...I am a rock, I am an island...hurray for rugged independence...manifest destiny...she's leaving home, bye bye" for these people. They need us to protect them, to surround them with our care, because we are quite literally all they have.

Talk about an inconvenient truth.

Because I'm not just talking about just those of us who are "in the know," those of us who rolled the dice, had our babies, and landed one or more times on the space marked "Autism." Because if you aren't that parent, you're that grandparent, that uncle or aunt or cousin, that coworker, that boss, that employee, that best friend, that sister, that brother. No one is left out. If you care about anybody, you care about this. It's a logical fact. It's the law of probability. The numbers are growing and growing and growing at a rate that you could almost call ludicrous if there was anything funny about it.

So if you see something, say something.

"See what?" you might ask. So many signs to consider. Again, take a minute, Candy Crush will still be there, a quick Google search will tell you plenty. Maybe it's a boy or a girl, anywhere from tiny to way taller than you, in his or her own little world, flapping hands, spinning a string, flicking a pencil, making funny noises that sound like crowing or barking or meowing, maybe spouting rhymes or lines from movies to no one in particular, spinning a wheel on a toy alone on a sidewalk, rocking back and forth rhythmically, or spinning in circles, looking like no one is minding him, or minding her. If that person is in any stage of undress, there's another good sign. If he or she doesn't seem at all responsive when spoken to, that could also be a clue. That's not all I can tell you, but it's a start.

He or she could could be any race, color, or creed, and any age. He or she is likely to be exceedingly beautiful...although I may be saying that because over the past five or so years I haven't seen or met one autistic person that I haven't found to be exceedingly beautiful.

Maybe you're not seeing exactly what I described, but you just have a feeling....something is off...it nags at you that this looks like a person that shouldn't be on his own, or on her own, without a caregiver. That's enough to maybe observe a little more and follow your gut.

If you're nervous about approaching the person, if you're not comfortable, if he or she is bigger than you and you worry you could be hurt, fair enough. Most of us have phones, just call 911, mention what you're seeing and that you wonder if the person might need help, that from what you've learned about autism, you think this person might be affected, could someone come and check it out.

If you're wrong, no harm, no foul, nothing to be sheepish about because, guess what, you've still done the world a service...because if you feel the need to act on something like this, maybe people you know will start thinking along those lines too, you don't know what your sphere of influence is, you don't know how far you ripple out.

If you're right, you've saved a life and brought joy back to people who were in danger of losing a piece of theirs forever.

Maybe you're like me and you can't stop thinking of this boy from the news, seeing his face in your mind, his family's faces, the brother we've seen organizing searches, the mother whose face I wish I could stop seeing, but I can't.

If you believe in angels, in big, powerful kickass angels, like Michael the Archangel, think about him shielding Avonte, protecting him. Can't hurt, might help, what do we know? "More things in Heaven and Earth, Horatio, than are dreamt of in your philosophy," Shakespeare says, and honestly, he's terribly smart about things. And also, just for the record, we're all Horatio. So just for good measure, call in anyone you can think of, anyone you're used to talking to, and whatever or whoever you call it. It doesn't care what you call it.

God...Jesus...Jeshua...Yeshua...Moses...Kwan Yin...The Blessed Mother...The Prophet Mohammed....the Buddha...God the Father...Krishna...The Magdalene...The Divine Creator...Your Powerful, Powerful Grandmother in the spirit realm...the Soul of Mother Theresa....John Paul II...Saint Anthony (if he can help find things why not people)....Saint Francis...Saint Jude...the Legions of Angels...the Elementals...the Greatest Good and Highest Joy of All Concerned...All That Is...the Light...the Dude...the Holy Spirit...Love Actually.

I think we've pretty much all been lost. We've all needed to bring in the "big guns." We've all been pulled out of the abyss by something we couldn't exactly see or hear or smell or taste, whether we want to believe or admit it or not.

I told you a story over a year ago called "Scared Shoeless" (http://everlovingmess.blogspot.com/2012/07/scared-shoeless_13.html) It's the story of how for just around a quarter hour of my life I was like Avonte Oquendo's mother. If I could find the absolute worst person on the planet, I don't think I could bring myself to wish on him or her what that moment in time was like for me.

While I may have gone through a nasty bout of premature aging during those fifteen minutes or so, "Scared Shoeless" had a happy ending on that quiet summer day. But having been through just that tiny, minuscule fraction of what Avonte's family has been enduring for weeks upon weeks, my heart can't really sleep well. I wake up every day and hope to hear the news his family prays for with all they've got.

I don't know what has happened to this boy. But somebody has to know.

The thing is, Avonte Oquendo can't talk for himself. We have to keep talking for him. Please keep talking. To yourselves and each other and to anything seen or unseen that you believe in. It can do no harm, and it could change the world.

Please please please. And thank you.

Mad Elephant

It's a precarious place I'm in right now. All of Calvin's favorite "moobies" are in a red DVD wallet labeled "Portable Favorites." We had to start storing them that way because the boy's become so obsessed with our DVD collection that if he gets his hands on one, he pulls it from the case and uses it like a frisbee, or spins it on his forefinger, or gets it stuck on his forefinger (found this out once when his regular noises turned into the type of scream usually reserved for the Nightmare on Elm Street franchise). So if we want to have any DVDs left that are not scratched beyond any hope of ever playing again, we had to come up with a system. (P.S. Geeks, I love you, but now would not be the time to tell me that the DVD is obsolete technology and why don't I digitize, because I'm in a kind of mood to tell you exactly what you can digitize...)

Anyway, I mentioned the red DVD wallet labeled "Portable Favorites." It's gone missing. I'll give you a moment to gasp theatrically. This is the time of night where if my son doesn't settle down and go to sleep I might have to tear my own face off just a little bit. And tonight he does not want to settle down and go to sleep without his "moobie."

I've been walking around the house in circles like I've just slipped my straitjacket, muttering things like, "How the fuck can this happen, how the fuck can this happen, how the fuck can this happen." I don't know why I mutter in such a manner, because I know exactly how the fuck this happened. The last time I handled the red DVD wallet labeled "Portable Favorites," it was four o'clock this morning, and I had been up since one-thirty, because that was the time my beloved son sprang from his bed and began behaving like a squirrel who'd just polished off a case of Red Bull. So by four a.m. the only thing I could think of to do was to hand him the red DVD wallet labeled "Portable Favorites" and let him pick his poison and pray that it settle him down.

He'd picked Dumbo. I fucking hate Dumbo. You probably remember Dumbo as an adorable baby elephant with ears that were so freakishly large that the surrounding cruel world bullied and rebuffed him mercilessly. And you probably grieved with him when they ripped him from his mother because she'd gone a little ballistic defending him and got herself locked her up for being a "mad elephant." Yeah, I used to feel that way too. I felt bad for Dumbo and his poor locked-up mother. Now I hate the little bastard, hate him. Irrationally. Eight hundred fifty-two thousand viewings of an animated Disney film, usually somewhere between 1 and 4 a.m., will do that to you. And all I can think of when I consider Mrs. Jumbo's incarceration is how quiet and peaceful it must be in there so she should stop complaining, ask the Ringmaster for a copy of Fifty Shakes of Gray, and enjoy some time off.

I sat down to write to you all in order to distract myself from going truly insane. I think it's working. And I may have overreacted a little bit about Dumbo. I was just a little cranky. I don't hate him, he's very cute and sweet and I'm very empathetic and when Mrs. Jumbo rocks him tenderly in her trunk through her prison bars to the tune of "Baby Mine, Don't You Cry," I usually have to go hide in the bathroom and sob into a towel.

Plus, look at what's happened in the meantime.

And all is right with the world.

Now excuse me while I rip the house apart and find those goddamn "moobies," or we'll end up meeting back here tomorrow and I'll probably have a few choice words to say about Curious Friggin George.

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)