So this sucky summer. So sucky. So very, very sucky.
And still.
Every day comes, and like it or not, I get out of bed. To mayhem, to bedlam, to Daddy's-been-wrangling-this-crap-for-going-on-three-hours-already, but what's a girl to do?
I wade in.
Reluctantly, sometimes tearfully, often fearfully, but nothing to do but go through. Through this sucky, sucky summer. Patch the pool. Change the diapers. Break up the fights. Lose the keys. Lose the autistic kid (okay, only once, and he was in bed asleep, so there)
And I am not much in the morning. Not much at all. I used to sleep, oh, years ago, but time and worry, dearth of morphine receptors and a Rasputin-esque resistance to sleep aids has stripped me of good sleep. So I am not much in the morning until well into the afternoon.
Very often, there isn't much to see. Much worth looking at, more like it. My boys, all mine, all very me, are Coke, Milk, and Orange Juice. Separately, they are fantastic. Together, rather difficult to swallow. And OH, Autism wears us down every minute of every day. My poor sons, paying individual prices for what autism rains down. My poor marriage, my poor husband, paying in time and touch, nurture and need. My soul, sold, in it's tattered entirety for better or worse, but for a therapy that is working as provided from a brilliant, good, honest person with lots of letters after his name who took another hourly fee cut that I wasn't supposed to know about. Everything is HARDER. Everything is RISKIER. This is mostly, almost exclusively the case.
But.
Everything is not what it seems. (total caveat: sometimes) I've said it before--that which we take for granted in our typical kids, typical lives, those moments, those achievements, those brief lights, they are elevated to Andrew Lloyd Weber-like miracles. Joys. (e.g., "he used an abstract pronoun just now! did you hear it? I heard it! He made a request and used an abstract pronoun and he totally gets the concept!"
And that was just yesterday.
Today, my husband admitted that yes, he'd made the right choice for our marriage, but that the outcome sucked. Seems his mother (and don't get me started) doesn't think there's much to be done for my glorious face-of-God-son, so she's not interested in helping out with the 32k in therapy costs. The less than 8% my husband told her we needed. She "might need a new water heater next year."
Oh.
Like I said, don't get me started. She will have to explain all this to Jesus at some point, and so I must be satisfied with that for now.
So you see, Wade, my friend, my fourth grade friend, I am witness to mostly extremes, I think. My marriage, a great worry for a bit, will be fine, and oh, I am so very grateful for the gift that is my husband and his love, but I am incensed, horrified, pained, grieved, and supremely pissed off that his mother, any mother, any human, could play a part to deny my son's future because the possibility of a faulty water heater next year. I know that she is very broken and that my husband is very lucky to have salvaged himself, and I know that this is not how the story will end for my most red-headed son, so I tell you that these are simply the extremes, the normals that come with those lessons I apparently missed in high school.
And forgiveness? what do I know of that? I know that it comes in many, many forms and that not one of them involve forgetting. Guess I'll have to wait for it, because I am so not feeling it now, but I know that this thing we call forgiveness, our way, not God's, is for our benefit. I will be better for having learned to do it. When I learn and choose to do it. I'll choose. Makes me feel superior.
Autism? I hate it. Hate it. But it has made me stronger. Tougher, even. Essex Girls not tough enough, eh? Try Essex Girls who have sweet redheaded boys who have autism. Tough Bitches, we are. But true to what is necessary and what is sweet and what is bullshit.
And we don't mix them up. Ever.
Wading in, whining always, wanting out, all just a part of Havoc and Shine.
Thank you for every time you listen.
xhxhL
Thursday, August 5, 2010
Monday, August 2, 2010
Such a Sucky Summer!
Wow.
Seriously, Wow.
Thank God we start school obscenely early in the Deep South or I'm not sure how many boys would be left to register...Bad, bad, bad Mommy.
Well, tired and worried and stressed Mommy. Mommy who is terrified that Daddy has made choices that will change our marriage in the not-good-beginning-of-the-end- ways. More on that later, but suffice it to say that it involves His Mother and how much she prefers her cats to her grandsons. Especially the grandsons with pervasive developmental disorders and windows of opportunity that will not be indefinitely open. Am so angry, so hurt, so unable to wrap my head around it, that it terrifies me. In that dark place where nothing makes sense. We've been there before, remember? Yeah, that's the place. My new address.
When I can, When I can make enough sense of it to explain it, or at least convey it, I will will share with the class. This is not then.
Ahhh...I'm tired. It's late. I don't have anything witty or brilliant ot say. I'm just...
just scared.
Seriously, Wow.
Thank God we start school obscenely early in the Deep South or I'm not sure how many boys would be left to register...Bad, bad, bad Mommy.
Well, tired and worried and stressed Mommy. Mommy who is terrified that Daddy has made choices that will change our marriage in the not-good-beginning-of-the-end- ways. More on that later, but suffice it to say that it involves His Mother and how much she prefers her cats to her grandsons. Especially the grandsons with pervasive developmental disorders and windows of opportunity that will not be indefinitely open. Am so angry, so hurt, so unable to wrap my head around it, that it terrifies me. In that dark place where nothing makes sense. We've been there before, remember? Yeah, that's the place. My new address.
When I can, When I can make enough sense of it to explain it, or at least convey it, I will will share with the class. This is not then.
Ahhh...I'm tired. It's late. I don't have anything witty or brilliant ot say. I'm just...
just scared.
Wednesday, June 9, 2010
Somebody Blinked
You know the pictures--grown-ups posed, children stilled, cameras click...
"Cheeeeeeeeeese!"
Hurray! That Haley's Comet Family Moment When Everyone Shines exists for all time and for all to see. Facebook it. Email it. Make prints for the Christmas card. This is concrete proof that you-and possibly,(but not likely, let's not kid ourselves) your siblings are just really quite fine.
Oh, but Hell--look again, a little closer. Maybe it's someone on the end. Maybe someone in the back. But Somebody blinked!
Ruins the whole shot. And, of course, there's no second chance because those people, in that moment, will never shine quite like that again. Parents will age. Marriages will falter. Children will sulk. Schedules will conflict. Grudges will sprout.
Sheesh. Family, right?
But maybe next year we could all... right?
See, I was part of a picture like that when we were on vacation this summer. So cool. All of us. My husband's extended family. People I haven't seen since, geez, our wedding, maybe. We had a vacation cookout and we told funny stories, and the kids were lunatics and then we took this picture by the pool. Everyone looks happily wind-tousled and sunburnt, the kids made goofy faces and I knelt behind Fuzzy (how else to keep him still?) and smiled, and waited for the six timers on the six cameras to go off.
But it was in that new and happy moment that I realized that my family would never have such a thing. We missed out big. There will never be that picture.
Somebody Blinked.
My family, my parents, my brother and sister and their spouses, the cousins, my kids, extra friend-along kids--I know now that I won't ever smile and wait for that flash. Not because I don't show up on film (although that's always my first excuse when I see a camera), but because, in an instant, in the blink of an eye, we lost our chance.
That smiling wind-tousled-by-the-pool moment passed by my family, as casually as salty breezes do, drifting past us to some other family, by some other pool,on some other vacation. And probably this family, this other vacation family, didn't have to research the number of doors, the depth of the pool, and where the fence ended for their autistic kid. And this other family probably didn't have to worry about Grandma stealing candy from Harris Teeter, or grabbing food off the grandkids' plates during dinner. This family, this let's-set-aside-our-differences-for-the-week-and-relax family, I'll bet they took lots of pictures.
I know I would. But then,that's because I know what we've lost in the last few years.
How it has changed us, hardened us, made us look away.
My sister is silent in a different way. Her blind fury at me (and for what? how many goddamn times can I ask? you know I've asked at least that many times and then some) has silenced her and thus, she cannot, will not explain.
Gone.
And my brother, the only one who can and/or will make words into sense, had some thing, some infection, and almost died in the ICU not too long ago. . I didn't know. And I almost lost him. That suddenly. In the blink of an eye.
That smiling wind-tousled-by-the-pool moment passed by my family, as casually as salty breezes do, drifting past us to some other family, by some other pool,on some other vacation. And probably this family, this other vacation family, didn't have to research the number of doors, the depth of the pool, and where the fence ended for their autistic kid. And this other family probably didn't have to worry about Grandma stealing candy from Harris Teeter, or grabbing food off the grandkids' plates during dinner. This family, this let's-set-aside-our-differences-for-the-week-and-relax family, I'll bet they took lots of pictures.
I know I would. But then,that's because I know what we've lost in the last few years.
How it has changed us, hardened us, made us look away.
My dad tells me that mom is losing language entirely now. Agnosia. Part of the Pick's Disease Package. My mother, once so very quick-witted and gracious, is fading with the tangled fury of a late-summer rip-tide. There are no lifeguards and swimming parallel won't help at all, this I know.
My sister is silent in a different way. Her blind fury at me (and for what? how many goddamn times can I ask? you know I've asked at least that many times and then some) has silenced her and thus, she cannot, will not explain.
Gone.
And my brother, the only one who can and/or will make words into sense, had some thing, some infection, and almost died in the ICU not too long ago. . I didn't know. And I almost lost him. That suddenly. In the blink of an eye.
But there was this one time, tho, we planned to rent a beach house together, all of us.
A lifetime ago. Big Boy was not yet big at all. Fuzzy and LRHF were strictly conceptual in nature. My mother had only just begun to be a tiny bit lost, and my siblings seemed well and happy and tolerant, if nothing else.
So simple. One good picture, right?
What could go wrong? So quickly, so precisely, so mercilessly?
I surely didn't see what was coming.
I must have blinked.
Monday, June 7, 2010
500 Miles...Lord, I'm 500 Miles Away from Home
That's strictly an estimate regarding mileage and (handily enough) one of my favorite songs.
Vacation. Of sorts. 13 hour drive to unknown place with lots of glass doors, sand, and notoriously rip-current-y ocean, several days of arguing (I mean discussing) with spouse who should monitor LRHF (did I mention the private pool? and hot tub? and lampshades with glass beads on them?) and then the 13 hour drive back home to...the week-old catbox.
(Jealous yet?)
And no, of course, we could never afford this luxury. We're staying with family, very gracious family (which means not from my side), and we're all learning Very Important Lessons about vacationing with a special needs child. Am sure family is perplexed--am sure they assumed we, parents of special needs child, knew what we were doing, had taken some class in this, but this is our first vacation since before we had Big Boy, so we're um...no help at all regarding the special needs thing. No idea. Nada. Nothing. Yeah, he might make a break for it. Yeah, he could take out all 8 flat screen tvs...
(oooh, you might want to hide that. And that. Oh, and that.Just to be on the safe side, you understand...)
Then again, he might not do any of that stuff. LRHF could be totally cool. He's mercurial like that. Autism is mercurial like that. And of course, mercurial is not conducive to relaxation or fostering happy family memories.
So here we are.
Our very, very first family vacation. Maiden voyage of sorts. You know me, I never go. I stay behind to refinish floors and paint rooms and watch entire box sets of Dr. Who. And yet, here I am on vacation. With us. Part of us.
Scared of us.
And yet there is this one image that brings me and keeps me here in this fancy-ass glass-doored unknown. At some point on this day, my LRHF will see the ocean. And he will see the sand. And he will see where the two meet. And I do think, I really believe that this will be so very glorious to him that he will birdie dance himself into levitation.
So, as with so much, I am weak and scared of what I do not know. But, equally with so much, my son, my LRHF will be better than me. He will be unbridled glee and unabated wonder.
(of course, then we'll have to chase him and possibly call in professionals to lasso him right and proper, but then again, maybe not. We just don't know.)
Vacation. Of sorts. 13 hour drive to unknown place with lots of glass doors, sand, and notoriously rip-current-y ocean, several days of arguing (I mean discussing) with spouse who should monitor LRHF (did I mention the private pool? and hot tub? and lampshades with glass beads on them?) and then the 13 hour drive back home to...the week-old catbox.
(Jealous yet?)
And no, of course, we could never afford this luxury. We're staying with family, very gracious family (which means not from my side), and we're all learning Very Important Lessons about vacationing with a special needs child. Am sure family is perplexed--am sure they assumed we, parents of special needs child, knew what we were doing, had taken some class in this, but this is our first vacation since before we had Big Boy, so we're um...no help at all regarding the special needs thing. No idea. Nada. Nothing. Yeah, he might make a break for it. Yeah, he could take out all 8 flat screen tvs...
(oooh, you might want to hide that. And that. Oh, and that.Just to be on the safe side, you understand...)
Then again, he might not do any of that stuff. LRHF could be totally cool. He's mercurial like that. Autism is mercurial like that. And of course, mercurial is not conducive to relaxation or fostering happy family memories.
So here we are.
Our very, very first family vacation. Maiden voyage of sorts. You know me, I never go. I stay behind to refinish floors and paint rooms and watch entire box sets of Dr. Who. And yet, here I am on vacation. With us. Part of us.
Scared of us.
And yet there is this one image that brings me and keeps me here in this fancy-ass glass-doored unknown. At some point on this day, my LRHF will see the ocean. And he will see the sand. And he will see where the two meet. And I do think, I really believe that this will be so very glorious to him that he will birdie dance himself into levitation.
So, as with so much, I am weak and scared of what I do not know. But, equally with so much, my son, my LRHF will be better than me. He will be unbridled glee and unabated wonder.
(of course, then we'll have to chase him and possibly call in professionals to lasso him right and proper, but then again, maybe not. We just don't know.)
Saturday, May 22, 2010
Who Doesn't Love to Read Eulogies, Right?
Well, I write them. And then I deliver them. And yes, I, too, wonder what this says about me, but it seems to fit pretty well into the general package, so it's no big deal. They die, I write. Sometimes there's drinking in between those two things, but that's pretty much the protocol. My friend John refers to this peculiarity as "limited speaking tours."
Anyway, I don't think I ever really told you about my grandfather. He was, well, he was special. Until I was seven, I wasn't 100% sure if he was Johnny Cash, or if Johnny Cash was him. Seriously. And I was sharp in my early years. I'd never seen them in the same room and knowing my grandfather, seemed reasonable enough. It still does, sometimes. Even now, two, (three?) years done gone on to Jesus. And even these years gone, these new trials begun, I grieve him. Mostly in the early Spring when I'm tilling or planting. Or maybe mostly under the June sun when the tomatoes are turning. Or could be when I'm putting the garden to bed in the Fall. Well, I know I miss baking his favorite bread, overnightting it to him, and then hearing all about it for spending the money to overnight his Christmas gift.
But Enough. It's been a few years, right? But still, he was so much to me, so much of me- his eulogy was probably the most effortless and natural writing I've ever done, could ever hope to do. As easy as showing a picture, I swear. And now, sitting here, completely filthy and sweaty and sunburned from working in the garden (Big redheaded boy picked the first pepper this past week--how 'bout that?!) I am remembering him, his words, his work, his faith, and sweet Jesus, his garden. Now that was a garden. And he told me once that everything I ever needed to know about God, about life, I could find in the garden, if I just knew how to look. And he took the time to teach me how to look. Wish you would have known him, but since wishing ain't having, here is what I knew of him, what I saw of him, and what I got from him. This would have been in late January, so the seed references are off. I know how annoying that can be.
It’s just about time for me to start my summer seeds where I live. Most people don’t realize what a rather delicate and time-consuming process it is, and frankly, I’m glad that God handles the vast majority of the plants in the world because seeds are a pretty tricky thing. The soil has to be just right and the light has to be perfect, and the humidity has to be balanced, and even with all that, it’s a long and quiet wait before you see growth. A gardener has to have faith that seeds will turn to plants. It might be the dead heat of summer before you get something even a little bit like what you’d hoped for, and by that time, well, you’re tired and your hands ache with the effort. Still, it’s always a magnificent piece of God’s handiwork poking out of that dirt and you are glad.
My grandfather was a gardener. He was careful and patient in his garden and he knew when to give and when to hold back and his plants were, to my knowledge, inevitably fruitful and strong. When I taught at Sparrows Point, I’d sometimes stop at Kenwood avenue on the way home and Mom-mom would wipe her hands on her apron and bustle around for the cookie tin and Pop-pop would walk me to out to his garden so I could see how well, how lovely, how strong it all was. How his faith and his hard work had paid him back once again.
Amazing.
Now, I think that most grandfathers are gardeners, because even if they never no much as dig in the dirt, they plant seeds. Our parents raise us, our church and schools teach us, but it is our grandfathers who provide the good beginnings—the history, the knowledge, the wisdom, the rich soil and good light we will need to flourish and be productive.
In this respect, Pop-pop was a particularly gifted gardener. He taught me how to pick a crab and he took me to Memorial Stadium. He brought home hops from the brewery so we could see and smell how beer begins from a plant. How
We all know that by nature, my grandfather was not a patient man and he did not suffer fools. We know this because he was generous and unquiet with his opinions and he had a knife-sharp certainty in both his morals and his faith. In spite of his nature, tho, he was had the wisdom to be patient and steadfast and diligent with that which he knew would grow.
I burned through five years of college in no particular direction and my grandfather, who never even got to high school, watched. No sign of growth there, heaven knows, but I think he had faith and he waited. So when I came back to him, asking that I might go back to school to become a teacher, he made sure that I understood two things about an education. First, he had been his own teacher, having left school in the 8th grade, and while this was a hard way to come by knowledge, it had graciously taught him the second thing that I needed to know—that knowledge was the single thing, the only thing that no one, no depression, no war, no job loss could take away. My grandfather, who had known mostly survival and sacrifice in his own youth—my grandfather, who had never known the luxury of youthful drifting, apparently had faith that if he sowed the seeds and kept good watch, I might grow. Might yield something worth his efforts.
I’d like to think that I did do that--if only because I learned from him that my students, and most people in fact, will flourish and grow at the hands of a loving gardener.
There are so many memories. So many family events and discussions and lessons and transitions, well, it’s a long and arduous list and I don’t believe that Pop-pop would be happy to sit through it, so I cannot rightly ask similar of you. I think that if I say to you only that my grandfather was an extraordinary man—dignified and practical, tireless and faithful, strong and focused, that you would know him just as well as if I’d passed around our family photo albums.
Neither he nor I ever imagined that we’d be so far away from each other. In our phone conversations, he would ask about my gardens and I would mostly complain about the clay-thick soil, or the drought, or even how little time I had for the labor we both loved so dearly. His response never changed. He said, “every year, you work a little bit more, clear a little bit more ground. Learn from your mistakes and look to the next season to make it better.”
His words were not meant to be left in my dry and rocky
I will grieve him deeply, especially in this season when I’m tending seeds and tilling ground and teaching my own children the lessons of a useful and fruitful garden. Surely, surely, I know I cannot spare him—I will mourn him harder as the days lengthen and warm and I know I will more readily stumble in my garden for the loss of his practical knowledge. By then it will be the dead of another
But in that time, when nothing is growing and hope is a rainstorm that’s nowhere in sight, I will be more patient. I will stop and I will bless him because I know, I have seen how easily miracles can spring from the tired and calloused hands of a faithful gardener.
Next year I’ll try again. Clear more ground. Learn from mistakes and make it better.
So all this mourning and missing and emptiness is just leftover for all of us. My grandfather had a job to do. He accepted the rocky parts and learned to make them better. He did this tirelessly and well for almost a century, and now my grandfather, my beloved and watchful gardener looks out over the endless and glorious gardens in his heaven and he rests.
Millions and Millions of Mommy Months and Myriad Milestones
That's how much time has passed and what has happened since my last visit to Lahlahland. I know. Most of you have managed to self-regulate perfectly well in the interim, and for that, I say "high five!"
There's more to say, of course, and always.
Always with the saying, you know how I get. Mostly okay-ness, or at least used-to-it-ness, but nothing is that simple, no?
So we'll talk soon. I promise. How better to pique your interest? Yeah, right.
hxhxhL
There's more to say, of course, and always.
Always with the saying, you know how I get. Mostly okay-ness, or at least used-to-it-ness, but nothing is that simple, no?
So we'll talk soon. I promise. How better to pique your interest? Yeah, right.
hxhxhL
Saturday, October 24, 2009
My Turn
A dear friend asked me to write to a mother whom I do not know, whose daughter was recently diagnosed with autism spectrum disorder. I cannot know what this mother faces, or what choices she might make for her child, so I did not tell her of the truly amazing progress that LRHF has made since July. What music is it to hear him speak his brothers' names. How he says, "I love you," and "Sweet Dreams." How I now know that he sometimes prefers pretzels to crackers after school (I know because he told me. He told me.) I refrained from mentioning the commonplace amazement of his therapists and doctor at my son's sweet and steady homecoming. I did not tell her any of this because my blessings are beyond my hopes and rare as pearls. I tell you, of course, because when I did bother to look up, you were always right there--along for the drive. This diagnosis is a pointing finger and nothing more.
And now it’s my turn to whisper the important words--words that will flicker just brightly enough to keep you from falling all the way down into the dark: Your beautiful child remains your beautiful child, regardless of where a finger points. Here is my hand, Mommy--you are part of us now, and we mothers of auties pass those words down to new mothers of auties like other mothers pass down silver sets. In fact, it may well be that this one act and these few words are the single speck on the spectrum that we mothers hold in common.
Autism is so many things, so many different ways of being. People will ask you “what is autism?” Believe me, they’ll ask you all sorts of crazy things, but when they ask this particular question, they may as well ask, “what is skin?” How do you answer? How can you? But since no mother begins this trip with answers and since you cannot give what you don’t yet have, just leave it. Leave it. This is your trip and you will gather so very many things along the way, so please pack lightly, and that means leaving other people’s stuff behind.
Take this road through whatever terrain you must--anger, grief, frustration--and know that you will come out the other side a changed and stronger mother. Go ahead and take the long road with all the hills and muddy spots. Stop where you feel the need, think a lot about turning around, and understand that you will always bitch about why you have to do all the damned driving. But you will drive and drive. And then drive some more. You will keep moving forward, I promise.
Claim your place with like-minded mothers and know that we are one goddamn tough bunch. We will stand with you shoulder-to-shoulder, stretch mark- to-stretch mark because we have all done the drive, in our own way, at our own speed through many, many stretches of bad weather
My autie is a million kinds of magic to me. Just as he had no words for the first five-ish years of his life, nor do I have words for our bond. His everyday obstacles show up on time and every day, but they are only as welcome as we allow. So often, too often, we have a thing with the obstacles—we set them apart and make absolutely certain that we can say, “That’s my kid there--the different one--and wow, will you just look at the size of his obstacles ? They are RIGHT THERE and THEY ARE HUGE.” Let me be very clear now, that those same obstacles have no power over the million kinds of magic, not the least little bit.
Say that outloud to yourself right now. Good.
This child sits closest to my heart and I can tell you even in his worst moments, God shines tiny bits of my best self. He is unbridled joy. He has a lightness that comes in quite handy during the darks. And while my chaos is just tired mommy chaos, his chaos is—well, he’s often quite glorious in his chaos. In fact, our road is occasionally strewn with his gifts of glory wrapped in chaos. Now, understand that these gifts are rare and precious. They are mostly unexpected and sometimes quite sticky and of unknown origin. Some days you will have to look long and hard to find even the dullest one. Some days you’ll give up looking altogether. Again, please know that giving up on today can never, ever forfeit the gifts scheduled for tomorrow. Keep looking. You’ll see.
LRHF's diagnosis shattered me--god-- like a rock hitting glass--a big ugly hard thing hitting a not-very-sturdy-at-all thing. We sat in that tiny room with the tiny chairs and filled out those very not-tiny-at-all pages of parent questionnaires and I cried. The whole time. Long pages. Lots of crying.
Not a good day, to be sure, but one that you’ve now survived. You remember the tiny room with those tiny chairs, and you surely recall filling out the stack of parent questionnaires. You might also recall that your answers were often limited to three choices:
Often, Sometimes and Not At All.
So do you bend your beautiful child to fit those tight little circles? Oh, you know that answer already. And when you worry that your daughter's diagnosis might change how you see her, who she is, and how she may find limits, that answer (finally!) fits quite nicely into one of those circles.
That answer is Not At All.
(and um...I don't know what happened with the font/bold thingie there in the middle of the whole thing. Sorry. )