Soup

I was warming up some soup for Calvin just now--beef barley, his favorite. While I was standing there at the stove, stirring, he sidled up to me and started pulling on my arm. I'm used to this, it means "follow me to the thing I want you go get/do for me." So I said, "Not right now, Cal, I'm making your soup."

But he tugged on my arm again anyway, calmly though, not so much demanding as inviting. Then reached up to my shoulder, pulling downward, and it finally dawned on me that he wasn't trying to pull me away, or toward something he wanted. He was pulling me down to his level...so we could be face to face.

Then he proceeded to plant a gentle kiss on my lips.

Then he said "Lubboo."

Then he smiled at me.

Then he put his arm around my hips and rested it there for a few beats.

Then he ambled along to the table to wait for his soup.  All the while wearing his school-bus-yellow noise-blocking earmuffs that make him look like he should be waving at planes from a tarmac.

So there I was, left holding my wooden spoon, stirring what turned out to be my favorite can of soup I've ever made in my life. Not wanting to move even an inch away from that spot until every last particle of sensory input he'd just provided had time to spiral through me like a warm current and become a permanent part of my soul.

Because moments like this come along to remind us that we can do this. In our own imperfectly stellar way. And when they come, it's probably a good idea to hang on with all we've got and never EVER let them go.

I lubboo too, sweet boy.

Now eat your soup.

120 Cases of Measles...Are You Scared?

If the owners of the media have their way, then yes, you are. And as such, there's something I need to get off my chest so it doesn't explode. If you've watched the news in the past few days, you've heard about a measles outbreak in this nation and, thusly ,a renewed panic over nonvaccination. And how so many of us have presumably been misled that vaccines can be linked with autism.

The truth is, we have not been misled. There is plenty of good evidence that more care must be taken when it comes to how we vaccinate our kids. This does not mean we should not vaccinate. It does mean, among other things too numerous to go into here, that the measles, mumps, rubella, and chickenpox vaccines might not be such a good idea mixed up in one vial. 

I'm begging everyone who can hear me. Please don't buy into the hype. Do you think it's a coincidence that this propaganda is being scattered around during autism awareness month? Does 120-something cases of measles (an outbreak? really?) across the entire U.S. concern you as much as 1 in 68 children with autism? 

As usual, what the media will say about us "vaccination phobes" is inaccurate. Because most of us are are not afraid of vaccines. We like that modern medicine can help protect us from diseases that used to kill or maim us.  What we are afraid of is a vaccine machine that has blown up into a monster that's out of control and that sanity has left the building. 

Just this one thing I'm about to bring up should be enough to raise your eyebrows. Just this one. Let's just take the MMR, or MMRV if that's what they're giving again these days (the MMRV is what my kids got before it was temporarily discontinued, who knows why, believe me I wasn't informed that for some reason the potion injected into my kids was deemed unsafe and taken off the market, this was a piece of info I stumbled upon on my own when my own child's health blew up in my face).

But back to my point, there's this measles and mumps and rubella and chickenpox vaccine, all in one shot, which is incidentally the only way you can get it because it's the only way Merck will sell it. It is given, for the first time, between ages 1 and 2. Then, in New York State, in order to be admitted to kindergarten, the kids must get a "booster." Of the MMRV. Just a little side note that you may or may not know--it so happens that the only vaccine dose that's requred by New York State law is the measles component, but you can't get that by itself, so what the hell, boost them all. Why not. I mean, if you just wanted to take penicillin, but the only way you could get it was in a formula that combined it with Prozac, Tylenol, and, I don't know, Celebrex, you wouldn't mind, right? I mean what the hell, it won't kill you. Maybe.

So why not give a quadrupal vaccine when just the single component is required. No worries. And if you've heard or read anything about how there are doctors, here and in other countries, doing research that suggests that combining all those vaccines in one vial makes each individual virus more virulent, and therefore dangerous, maybe even causing bowel damage, that some autistic kids have been found to have the vaccine strain of measles in their diseased lower intestine, just put that out of your mind. Keep your eye on the ball, here, there's been an OUTBREAK of measles.

Except get this about that kindergarten booster thing I mentioned above. Most of the time the kids still have immunity to these viruses from the first shot, and need a "booster" like they need a few ounces of arsenic in their juice boxes. You know how you find this out? Simple blood test. It's called "checking the titers" to see if the immunity is still solid. I found a pediatrician that doesn't blink an eye about checking this out before re-vaccinating. Those doctors aren't easy to find. His words were "I check my dogs' titers before revaccinating them, why wouldn't we do it for kids too?" Good question. Maybe the answer has something to do with how well the people who make the MMRV are doing when every child entering public school kindergarten is required to get this booster.

Except that they're not necessarily required. If the child's blood shows immunity to measles, at least in NYS, they're good to go. Maybe you haven't heard this.  The doctor I know who doesn't object to checking titers, on children as well as dogs, told me that in his decades of practice there has only been 1 kindergartner who didn't show immunity after the first shot. Sure, that's a small sample. Anecdotal evidence. It's the best we're going to get, because if those with the big power and the big money don't want us to know stuff, do you think that their big power and their big money is going to be put toward helping us gain this knowledge? With huge double-blind scientific controlled studies blah blah blah? Um, no. 

So when we're told that there's no incontrovertible evidence that vaccines are related to autism, there's some truth to that. If by incontrovertible evidence you mean "expensive funded study." It's like the old joke about looking for your keys under the lamp post when you lost them in the bushes. Because the light's better over here. 

So there you have it. Want answers? We need better lighting. And for that, friends, we're on our own.

Light Me Up Blue

Yesterday was my birthday, and if I live to be exactly 90, I am exactly middle aged, plus one day. No fooling. Yippee.

And today is April 2, which means that two years ago today my Grampa died. (The rest of them say Papa, which is fine, but once upon a time it was just me, and he was Grampa, and I've never really made the switch.)  Makes for a disturbance in the force today. My tribe is hurting. We miss the leader of the band.

And it's World Autism Awareness Day. Light it up blue day. Blue feels about right. The school nurse called this morning, I saw the school number come up and I was like, seriously? Is he even off the bus yet? She wanted some insight into why they had to hurry and get him off the bus and figure out what all the hysterical crying was about. His ears look fine, his throat too. Any thoughts on what might be bothering him?

"HOW THE FUCK SHOULD I KNOW!!!!!" I screamed at her. Silently. 

Out loud I told her he's been fine, happy all morning. And it's completely true, but I feel like she thinks I'm lying, because maybe deep down I am lying, maybe there was something terribly wrong and I'm just in a constant state of denial. Even though I'm his mother and I'm supposed to know him to the depths of his soul and understand how to take care of him. So much for MY autism awareness.

But what does she want from me, he giggled and laughed and made kissy faces with me while we waited for the bus, he hopped aboard with a spring in his step, and that was that. Is it my fault I don't speak his native language, and he doesn't speak mine? Of course it is. Whose else could it be? Way to go mother of the year. 

Aren't you glad you tuned in?

But speaking of you... 

Do you have any idea how many of you wished me well yesterday? Sent me good wishes and sweet sweet words? Called me your forever friend, partner in crime, beautiful friend, Wonder Woman, beautiful wild woman, fabulous cousin, sweet friend, My Tracy...wonderful wife (last but not ever least). One of you even made me a tray of eggplant parm that I got to keep all to myself (timely road trip, dear husband...). On and on you all went, remembering me and being kind. 

And today, because of what today is, lots of you are posting pictures of my baby boy, because of how precious he is, and because you want everyone you know to know all about him. Know why he's worth lighting up the world about. Blue, certainly...and all the rest of the frequencies that make the colors. On the spectrum. An infinite spectrum of light that starts and ends with colors we can't even see. Yet.

And another thing, Grace hid in her room yesterday to take out her clay and fashion me a puppy in Mets colors. She even made it like he was made of tiny baseballs, but left out the stitching because she didn't want him to look like he had scars. She came to me and said, "I didn't make you a birthday present this year....APRIL FOOL!!!!!" 

Yes. Infinite spectrum of light that starts and ends with colors we can't even see. Yet.

So thanks for the hand up. All the hands up. Thoughts and words. And characters tapped out on a keyboard, or a touch screen. A little clay puppy. Sloppy happy kisses waiting for the short bus.

So many reasons to get up off the couch.

And so, I'm up.

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.