20 May, 2014

Motherhood and the Scientific Method

My Mother's day began with pancakes, and coffee, and champagne, and strawberries...followed by a short nap. When I had been properly feted, Lucy said she really wanted to do "fun stuff," so we turned the day towards our children, and what adventure would make every one happy.

To the lake shore! Jake played in the sand, Descartes lounged in the shade, and Lucy and I set about to make a sandcastle. It's one of my favorite things we do together, even though it wrecks my hands, leaving them dried out and cracked every time. 

On our trip home later that afternoon I dug through the console of the car and found lotion to slather on. I rubbed in the moisture, and discovered a few age spots that have appeared. Actually, as if I hadn't seen them in years, all of the scars that I have, seemed to stand out on my hands; a burn from grabbing dinner at the wrong angle from the oven, while shooing away a dog and a kid from the open door. And there, on my left hand is an odd 90-degree-angled scar: two lines, each less than ¼ inch long. They came from my son's perfectly square tooth. He was two, and that was his only way to tell me that he wanted nothing to do with my art project. (Ironically, I was trying to encourage him to paint Mother's Day note cards for each of his grandmothers.) My hands are keeping track of all of my parenting.

I think Motherhood is like a great scientific experiment. 

When we begin we have a hypothesis of what we think might happen, who we will be, what our children will be like, how we will teach and discipline, and love and care for our kids. Then it begins, and what follows is a series of trials, endless trials. This mothering lab runs 24 hours a day, 7 days a week.

And every time we think we know where the data is going, when we think we've cornered the answers, and can make predictions, the children grow, life changes, we change.  At the end of each trial, if there is a pause longer than a breath, we review the data, check for patterns, then we try to make better decisions about what to do in the next go 'round.

Sometimes, a few times, it all makes sense: you have a clear expectation of what will occur, and things play out in exactly that way: I will carry my baby, and that baby will be healthy and enter the world without any struggle. More often, you begin a day expecting one thing and get another, different, but wonderful thing... Silly Putty, Play Doh, and potato chips were each happy, unexpected surprises.

Other times it looks like nothing you expected, with no books to guide us because we are outside of the norms, and we are stuck on how exactly to Mother. At a loss, we seek counsel from other researchers. But it seems that no one has this motherhood thing down, no one has figured out the one way to perfectly parent children.

Honestly, there are days when the entire lab seems ready to blow, when I have little tolerance for the details, when there are too many moving parts to keep track of it all; moments when all of the slides smash to the floor, and it's all you can do to find a place to stand while you bleed. Loving this much means that your child's struggles can tear at you, and leave you sleepless, and wrought. Being undone can feel more familiar than having it all together.

Of course there are breakthroughs-- moments of clarity. Moments when you stand back and you can see that the work, this life, your family, has taken on its own cadence, and there is a peace in watching your children move on their own, safely, happily, greeting the world with kindness. You have presented a part of your data set and perhaps you get to know, briefly, that your work is good, that you are on track.

I'm just another phase in this trial, and my work is made easier because of those who have done this before me. I thank all of the women from whom I have learned, all of the women who pushed the boundaries for what being a woman and being a mother means. I am grateful for the enduring support of my peers, and the advice from my elders.

When I find myself alone with my thoughts at the end of the day, I ask,

Did I give to my children more than I took?

Did I endeavor to show patience when my grace was running low?

Did I love so deeply that my children feel it, even as they create their own space in the world, apart from me?

Did I break their falls just enough so that they bruised, but did not break, even though my heart ached with every moment they struggled?

Did I put my hands into the sand without reservation, and play with the earth alongside her little fingers?

Did I listen to, and honor, my son's voice even when no one else can hear a word?

Did I help them learn to choose the right thing, even when it does not benefit us; to choose to be kind, though it could be easier to be callous?

***

I am rarely satisfied with how I finish a day, especially when it comes to my work as a mother, but I am learning, that in this grand experiment I will often fail myself, and my kids, sometimes spectacularly. I do know that they are worth every trial, and when it is all written down in the end, the conclusions in the lab report of my life, I can only hope that I have continued to move the line on what it means to parent, and that somehow I've created some beauty in this world by helping shape my children.

29 April, 2014

We Called Him Gus


Lucy named him Gus. Which was short for Octavius, the mouse in Cinderella, and also for Augustus Gloop, the boy from Willy Wonka and the Chocolate Factory. Gus was a little chubby, but he was good natured and eager to please.

My husband is good at picking out the “used puppies” we tend to invite into our family. We never get a dog when they are new, only after they’ve been around awhile, maybe had a hard time, maybe they weren’t treated very well, that’s when they come to us, and it is always obvious which dog should come home with us. Gus made it clear he wanted to be our dog when he let four year-old Lucy walk him on a leash, and curled up next to Jake with his head under Jake’s hand to help initiate being pet. He was still not 100% healed when we got him, and while they were reluctant to let him go, everyone agreed it was a good fit. He was ours, and we had only stopped by to “take a look around.” 

He was skittish getting into our van the first time. It’s possible that given the ubiquity of that car in this state, that he was tossed out of one before he was found on the side of the road. We coaxed him in, and he lay down between the kids as if the spot had been built for him. We proceeded to eat dinner in the car, over his head, and not once did he try to sneak food from us. He was a good dog. He was a perfect addition to our family. Gus. Such a good boy. 

As it turns out, he didn’t really ever retrieve, despite being a Golden Retriever, and he is the first of that breed I have ever seen who was not motivated by food. Given the amount of edible debris spilled on the floor each day at my house I was not thrilled with this lack of enthusiasm for vacuuming. But what he lacked in housekeeping skills, he made up for in patience. 

That dog was laid on, jumped over, stepped on (by accident!), pushed out of the way, scooted out of the kitchen, and chased down the stairs. He was a pumpkin and a princess and a superhero, and a cowboy, and many, many other things that little children can dream up when they are between the ages of 4 and 8. He wore each costume with a slight roll of the eyes, but stayed still while little tiny fingers tried over and over to make the too-small hat fit upon his head. He trick-or-treated next to Jake’s wheelchair, amid all of those people and didn’t ever make a peep. 

Even when I stayed up way too late, hours after the other members of our family had gone to bed, Gus would wait for me, sitting at my feet, keeping me company in the light of the computer. 

It’s not easy to be a part of our family. We are loud, and unruly. There is almost always a television, an iPad, and a phone in use at the same time. We travel, to other destinations with more children and more dogs, and we over pack, leaving just enough room for living things to fit...just barely. Our house has many stairs, and a deck that overlooks the city, and there are deer all over the place outside, creating a life of attractive nuisance; all the deer a dog could want to chase, with none of the barking allowed. 

We love those who become a part of our pack, even those who spend their days lounging across the kitchen floor, seemingly in the way of every path to make dinner. With our whole hearts we are thankful for the time we had with Gus, for another bit of fluffy, warm love that we got to have in our lives. We were so lucky to find him and so happy he chose us. 

He is loved, and he will be missed.

24 April, 2014

Such Stuff As Dreams are Made On

The building was huge, a true monstrosity whose architect was clearly influenced by the creepiest aspects of a poorly laid out mall, an abandoned naval yard, with just a whimsy of the dark garage of the neighbor you were never supposed to visit as a kid.

I'm not sure what happened first.  Did I know something wasn't right, or did they tell me they had "lost track" of my son? I just remember that the two women standing there behind the flimsy stanchion and rope "gate" looked both unsurprised, and only slightly worried, mostly about losing their jobs, and not about my lost son. My mostly nonverbal, does not come if beckoned, additionally taxed with cerebral palsy, and thus has poor fine motor skills, son. He is beautiful and funny and one of my true loves, but one thing he is not, is a boy who can be left alone.

anger.

It's hard to convince people to take it seriously. To lock the gates behind them, ensure the fence has no openings, make sure the dog door is closed. Hard for others to see that a deck with a low railing is really not safe enough, and if you add a chaise lounge next to the rail, so as to make it easier to rest your drink, you've just created a giant step to leap right over. It's hard to explain why just holding his hand in the parking lot does not guarantee safe passage, because he is strong now, and has moves like Houdini, able to twist his hyper mobile arms out of being held.

panic.

I'm sure that's what it feels like for him, that he is ever-captive, with no freedom to go about his day as he might choose. No matter how many engaging choices he makes, I can't leave the back gate open to let him explore, I can't sit in my chair on the sand as he walks along the shore. I have, or someone has, or someone should have, a hand on him almost all the time, any time we leave the confines of our house; he is ensnared.

So it's not surprising that he would have escaped under not-too-watchful eyes, and was now wandering in this poorly-lit labyrinth of a building.

fear.

I run down the corridor, but I know this is not where he would have gone. He's no fool, and would dart into a smaller walkway as soon as possible to avoid detection. I can see him across the abyss from one viewing station to another, four stories of art and science, and humans below us. I look to find the stairs on my side to head down to the level he's going to, but when I look back across, he has disappeared into a shadow again.

loss.

I'm alone in this. I can't get ahold of my husband, my daughter is too young for this responsibility, and yet I ran and left her with the very two people who lost my son. My daughter. I've just left her. I just turned and ran.

The phone in my hand is uselessly filling with voice mails that say, "if you can't handle it, let me know, and I can come help. If you can't handle it..."

shame.

It seems I am surrounded by an entire nation of people who do not get it, who walk by, either staring at my plight or avoiding me. No one who can, will help, and those who don't know how, are scared to ask. It's just me in this giant, horrible building where none of the signs make sense, and there are only open tread stairs between floors, and everything is echoey as I run, madly, searching for my son, hoping my daughter will somehow remain safe-enough until I return.

***

I woke with a clenched jaw and a headache painfully draining any good thoughts I might have had, and as the light seeped between the curtains, I begged the sun to tell me that it was just a dream.

And then I am clearly, fully awake, and I wander to the children's rooms to check on them, even though it is obvious we are not scattered through some other building.

I peek at my daughter lying on top of her covers, flat on her back. She looks like Snow White, with her hair framing her fair face, her ruby lips turned lightly at the corners; she sometimes smiles when she's sleeping, and that seems to make me think her life is pretty good.

My son is equally safe,  a tangle of teenager in his extra-long twin bed that is already looking too small for him. His leg is draped over the side, unwound from the covers, looking like a specimen of the perfection of man, with muscle and strength showing even through sleep.  His toes are set lightly upon the ground, like a sprinter sets their foot, ready to press off and beat the track down with perseverance.

I sigh at the wonder of them, and try to shake the chill of that unforgiving, other dimension.

I am ever-thankful that it was all a dream, but I realize, even hours later, with both of them safely at school, that I remain a little distanced from the present. I worry that some of that panic, and fear, and anger, some of that shame and threat of loss, I wonder if I carry a bit of those things around all the time, and that is a little unsettling. And I wonder how much of it is manufactured and how much of it is real? What is my business to figure out, and what are things I wish would change in the world around us?

Our every day has a lot of good in it. There's laughter and hard work, and good food, and adventures, and there's movie night and family snuggling. There are friends and family and celebration. So this night, when I sleep,  I will push away the dark and dreary, and envision instead our average day, our filled-with-so-many-good-things, average day, and when I close my eyes there will be my Snow White and my young, Strong-man, because the people they are, our little life- it's the stuff that dreams are made of.



Our revels now are ended. These our actors,
As I foretold you, were all spirits, and
Are melted into air, into thin air:
And like the baseless fabric of this vision,
The cloud-capp'd tow'rs, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea, all which it inherit, shall dissolve,
And, like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on; and our little life
Is rounded with a sleep.
Shakespeare
The Tempest Act 4, scene 1, 148–158

01 April, 2014

Being Hopeful Is Never a Mistake

Over the last few weeks I scanned-in, then shredded, thousands of pages of our life, old documents that were taking up space. The guest room is not a place where old memories should go to die, and so I pulled out a giant bin and began re-living moments of pain, distress, and joy as I watched old bills, prescription leaflets, and holiday cards float across my table. I cried a little, smiled a lot, and more than once clutched a few sheaves against my chest wondering how we moved past some of the hurdles in our past.

I was amazed by how many pages I remembered instantly, where I was, how tired, or happy, or anxious the words made me at the time. When I hauled those bags out to the recycling bin, and there will be more of them, I poured in those pieces of paper and I knew these things:
  1. I really didn't need to keep most of that paper in the first place.
  2. I now have a digital copy if I ever need it again.
  3. My brain has a lot more room in it now that it is not holding on to "Where is that specific paper from 2004?"
More importantly, sifting through all of those documents, medical and educational, family journal pages and scraps of paper, I was able to see how my son has grown. His IEPs have finally taken shape and the words on them really matter; there were milestones and he has met them. There were medical queries and they have been answered.

It is obvious that being hopeful is never a mistake. Before we used the words "presume competence," I can see that we tried, and as we've grown in understanding, we've expanded our thinking, changed our behavior, and developed expectations for ourselves and our family.

We're not done figuring things out, but at least I know there's a little more room to do it now.

*****

It's Autism Acceptance month at Thinking Person's Guide to Autism. This month we're asking our autistic friends and community members What Do You Want? What Do You Need? We'll be featuring their answers all month long, and if you'd like to be a part of it, please email us at thinkingautism at gmail dot com.

If you haven't joined our Facebook community, get in while the gettin's good. We've doubled in size since January 1 of this year!





28 January, 2014

I Don't Hate Autism, I Hate Migraines.

Last night my baby girl had her first migraine. Or maybe it wasn't a "real" migraine, but it was a headache so big, that it made her cry on the floor, holding her little seven-year-old head, while afraid to touch her scalp. It made her need help lying down for fear that that her head would 'crash.' She wept and moaned, and looked scared by how the pain took over her entire brain and she told me it made her unable to think of anything else.

myGirl at 7
She didn't have the aura that I get, though she found it painful to read or look at light. It was a headache that built up over the course of the day, and had not diminished after water, food, exercise, or relaxation. She was so miserable, and almost unable to be understood between her sobs and pleas for help.

We have the tools to make those kind of headaches go away at our house, and so with a cool glass of water and a magic melting pill (Maxalt) she was able to crawl into bed, and lay flat, and eventually her swollen eyes closed, and she slept. She awoke today pain-free and chipper from a solid night's sleep. 

*** 

I don't sleep all the way through the night very often, between checking on children, and restless dogs and the occasional bouts of snoring (mine or my husband's, or the dog's) I awake at least once an hour, and I get out of bed 3-4 times a night to be sure that the hatches are truly battened down and no one has escaped, or died. But mostly I fall back asleep easily, unless there is something big playing around in my mind.

Last night, each time I awoke, I realized I had been expecting something. I listened each time waiting to hear the sounds of un-soothed uneasiness. I had been expecting Lucy to be throwing herself around her room, or sobbing, or screaming in pain, because I had been triggered, and I remembered all of those horrible nights when Jake was younger. All of those days we had before we knew he had migraines.

Watching Lucy on the floor of the hallway last night so upset, barely able to speak, I realized how lucky we are that we figured out Jake's headaches at all. Right in front of me was my eloquent daughter with all of her ability to speak, unable to communicate her needs; how did Jake ever stand a chance? 

myBoy at 7
It took us years-- years of testing, and reading, and researching, years of praying, with people we barely know, praying. We drove 'round and 'round, and devised elaborate set-ups to rock him gently even when his body was too big to be held in the gliding chair, or the IKEA swing. We hired caretakers to allow us to sleep, knowing that he would be crying and screaming all night long. We made his twin bed into a giant gated box so he could at least throw himself down onto the mattress over and over again. We took turns holding his hand as he leapt up from between us in our bed and threatened to fly off onto the floor. We tried to keep him safe even as he knocked into and broke our noses, and his grandparents' glasses. We tried to keep him eating and drinking. I remember holding him, crying with him, and making him every promise to try to help him, feeling like I was failing when I had to take a break and pass his care to my husband. He was at least seven before we had a handle on it.

And for all of it, as bad as it was for Descartes and I, and how ashen we got, and how it affected our friendships, and our careers, and our health, and our marriage. I know that it was so much worse for Jake. It was so obvious he was in pain, but no spinal tap, MRI or genetics test could tell us why he was biting at his own hands in frustration. You can still see the scars on his beautiful hands.

Those years before we figured out the migraines are often a blur, sometimes other people need to remember them for us, but I do recall how sad Jake was. So very, very sad. I remember the desperate look in his eyes, like he wanted out of his own body. I remember how he yelled at me, and I just kept hoping that the sounds would turn into words that I could understand, so I could help him. Not being able to soothe him was the most helpless feeling I've ever had.

He had all those sounds, and actions, and giant movements (despite his cerebral palsy), to try to tell me something, and I just couldn't understand the one thing he wanted to tell me: Mom, I have a migraine. 

***

Sometimes people in the online-world think that Jake must have very few needs because I speak about parenting him without saying things like "I hate autism." or "Autism can suck it today."  I have never felt like something "stole my child," or that the "real child" is "hidden behind the autism." I don't believe that saying there is an "autism epidemic" helps my child, or my family. I don't believe that autistics are burdens on society. But just because I don't buy in to all of that doesn't mean I don't find this particular flavor of parenting harder than I thought it would be. It doesn't mean that I don't sometimes long for my son to encounter the world with fewer hurdles. It doesn't mean that I don't want, sometimes, for things to be different than they are. 

But those notions or longings and desires are not always about autism, and my guess is that similar wistful thinking happens for all kinds of parents and people all the time.  I don't need to hate autism to want my son to have an easier time at things, just like I don't hate being tall just because no store-bought clothing ever fits me properly. Autism is intrinsic to who he is, and you can't hate a part of your child and not have that child feel like they are damaged goods. 

I don't hate autism. I hate migraines.








14 January, 2014

No Woe Here. It's a Happy New Year.



I drove past the building where my husband and I went to those prenatal classes. The ones we went to when I was pregnant with Jake, and a sob lifted up through my gut and caught me by surprise by gasping out so sharply it was like a gunshot in the distance.

I wasn’t sad, exactly, or happy, or nostalgic, just jolted by how very much I have learned since those classes finished; what a different woman I am.

We were late for every single one of them, every single class. We thought we were too good for them, I remember that now. I thought we knew more, and were smarter than every other couple in that class, before we even walked in the door. The nonchalant arrogance of youth and privilege, health and prosperity, kept my feet several inches off the floor, even as we were good kids who held doors open for others, and made plans to take our future children on world tours, so they could truly understand how blessed we are. I was not ungrateful or unkind, just unwearied, and undereducated by life. I didn’t know how much I didn’t know.

I remember that I liked that we were joining a new club. With the addition of  “parent” to college graduate, married, and employed, we were bound to just add to our parents’ pride in us. We bought a home and stripped the heinous paper off the bathroom walls. We had so much. We were almost done setting up everything to play out the perfect life.

But I wish I could talk to that younger me, take her to coffee and let her know just a few of the things that would be ahead. Our pastor quoted Dante at our wedding “Abandon hope all ye who enter here…” and, well actually, that’s what I would give her, like a talisman: Hope.

I would let her know that hope is not neurotic anticipation. Hope and hard work will be the foundation of every day from that day forward, and without one, the other will be useless, so have them both.

I would tell her that no amount of childhood can prepare you to be a proper adult, and our parents can’t be blamed or praised for everything, because every day is a new chance to be better, or to make bad choices all on our own. Who I am today is a result of my foundations, but more a result of all of the choices I’ve made since my parents stopped telling me what to do. So depending on the topic, I have been free to make my own choices about some things since I was five, and others I have just learned to manage on my own.

I’d remind her that there is no guide better than her own moral compass, so don’t get caught using someone else’s directions. And when hearing the words of others, I’d tell her to try to translate them to their best possible meaning, because most people don’t mean harm, even when their words are sharp, and most of the vitriol she will hear won’t really be aimed at her directly anyway. I’d tell her to remember the kind words that people say to her, because replaying only the mean things will break her heart. And when things finally blow over, whatever they are, she should let go of being sad, because people who do mean to hurt you rarely come back to check on you.

I would tell her to sleep easier, and tell that voice in her head to go ahead and think it through, and make a path, but not to lie awake each night branching out every plan until tomorrow is so, so far in the past you are regretting your future before today has even played out.  I would encourage her to enjoy each bite of life, and when there is a pause, remind her to recall what it was like just before that biggest problem you have ever faced, appeared before you, because that is life too, the sweet parts in between the hardships. And the truth is, there is more sweet in life than we think. 
__

I pulled the car over to breathe properly,  because I remembered the lightness, and remembered what I thought was hard then, before I had ever experienced all of the amazing twists of humanity I have seen since. And I realized that driving past the building thirteen years later is one of my sweet moments before something else comes to our door, so I wanted to remember the feeling. I know more than those people in that room now for sure, more than my younger self, but I know now how much more there is to learn.

As this New Year begins to unfold, I find myself grateful and humbled.  I am aiming to live joyously and without apathy. I want to hear each person’s best intentions, and help people hear the good in each other’s words too. I am full of hope, or I am trying to be full of hope. I really want to start each day with a full cup, and if most of it spills out, then I will try again tomorrow, but at least I’m going to try. 

 ***
because of course a Happy New Year post should include a giant quote about Hell.

Dante Alighieri (1265-1321).  The Divine Comedy.
Canto III
I then, with horror yet encompast, cried:
“O master! what is this I hear? what race
Are these, who seem so overcome with woe?”
He thus to me: “This miserable fate
Suffer the wretched souls of those, who lived
Without or praise or blame, with that ill band
Of angels mix’d, who nor rebellious proved,
Nor yet were true to God, but for themselves
Were only. From his bounds Heaven drove them forth
Not to impair his lustre; nor the depth
Of Hell receives them, lest the accursed tribe
Should glory thence with exultation vain.”
 I then: “Master! what doth aggrieve them thus,
That they lament so loud?” He straight replied:
“That will I tell thee briefly. These of death
No hope may entertain: and their blind life
So meanly passes, that all other lots
 They envy. Fame of them the world hath none,
Nor suffers; Mercy and Justice scorn them both.
Speak not of them, but look, and pass them by.”

TL;DR
do not live selfishly and
don't muddle through this world indifferent to good and evil;
there is no glory in a life of apathy.

10 December, 2013

Last Night in the Very Late Early Morning

It's late.

I've tried all the remedies to sleep, but my mind is so filled this time of year, it's hard to imagine it will slow down.

Instead of sleepy,  I fall in to nostalgia, which is possibly the worst category; it's worse than plain sadness or melancholy, or insomnia. I think nostalgia is a purgatory for people who have a solid sense of recall and an ability to  include all of their senses when they remember.

It conjures up almost every place I've been-by smell, and vision, and emotion. The night is instantly filled with forty one years of life, instead of whatever became of this day.

I certainly relive all of the most recent moments that have happened when my feet were a little cold, when Christmas was around the corner, or upon us, but more likely my mind wanders back to 8, and 12, 19, and 22, to when I was a bride-to be, and days of new-motherhood.

I remember learning to ski with my "Unka Danke" (because that is what we called my mother's brother; we always had so many reasons to thank him). He pushed me down into the soft snow and taught me to get up on my own, then fed me soup from a thermos, and taught me how to open a beer. I never feared falling after that trip. Eight years old, and I mostly knew what you should always figure out: what is the the worst thing that can happen? Prepare for that, and everything else will be cake. Doomsday prepper in the making? Perhaps, but we have "go bags" for almost every part of our life. He gave me love and direction with no strings attached. His pragmatics dictated that he gave me distinct praise for my abilities and accomplishments- I always knew where I stood. I didn't know how rare his adjudication was until much later in life. And he treated me as an equal who just had yet to learn, never basing my identity on my age or gender.

When I am sleepy, and there is a chill in the house, I can remember being asked by my parents to help with my brother's gigantic Lego gifts that were from "Santa" because my parents had lost the patience to complete whatever Millennium Falcon or aircraft carrier was laying about in thousands of pieces (or maybe they knew how much I loved Legos, even though they were never my gift?). I spent hours on those December 24ths putting together set after set, and I was always in charge of the stickers.

I can remember that I slipped the neat bow off of the silver gift box (in the middle of the night) to see if my parents had purchased the right purse, so I would have the proper face of appropriate joy upon opening the gift, just in case they had gotten it wrong. I wanted to be disappointed alone so I wouldn't make them sad. (But they got it right!)

I remember lying, something I truly strive every single day not to do, to my parents for at least half of December one year, about who broke the foil-covered chocolate ornaments on the tree and ate part of each ball.  I took the blame so my little brother would not get in trouble...as if my parents really cared. He ate so many of the chocolate balls that no one paid attention to all of the candy canes I pocketed each morning.

On this chilly night, I have a strong feeling, mixed with a  solid haze about the years where I was still living with my parents, split between them since they had divorced. I remember the realization that I really had two sets of parents. There was a dinner when my not-yet-step sisters talked on about going skiing with friends and I wanted so badly to be a part of their world, yet unbeknownst to me, at my other house, I had a new ski jacket, boots and skis waiting for me under the tree. I was a pretty lucky kid.

That was a year when I knew that things had broken, but not forever. I knew my brother and I would never suffer the ill fates that some of my friends had: angry, sad parents, changing schools. With so many parents who really loved us, how could we possibly fail? It's been confirmed in my head, after all of the stories I've heard, just how great we had it, how lucky all of my siblings from both sides are to have so many, many, parents who love them. I say now that I have six parents: the ones I came with, the ones I gained, and the ones I married into. We have that many people loving us, caring about our future, and our children's future. I've got extras looking out for me and the ones I love.

When it is this cold and  I can't sleep, I can remember starting college, and there were so many new-to-me-religions. I was invited to go to Beverly Hills with my Jewish friends, and I craved the solid, persistent, unequivocal religion they experienced. They had family and religion and culture and education all tied-in-to-one thing. It made me understand Catholics better, and Buddhists, and Hindus, and Muslims. It made being a protestant seem bland, or undecided; I church hopped. I only knew I was not a Unitarian.

I can remember, on a cold day like today sitting in the 1st Congregational Church in Berkeley, with my very kind boyfriend trying to figure out how to be a critical thinker and a Christian in one fell swoop, something he had perfected, an armor he wore without shame or arrogance. The church was clapboard and painted buttercup yellow inside, and the pews were smooth; the coffee was weak, but it was served with a smile. None of those things were a good fit for me, not the boy or the little yellow church.

I can remember racing home for the holidays, the acrid smell of tobacco in the car as my best freshman-year friend and I traveled down I-5. Thirty-eight degrees, windows open, pretending that cigarettes and 87 mph in a two door Toyota Corona couldn't shave a moment off our lives. My dad told me I should wait a bit to call him the next time I drove down, because he could do math, and knew that we never should have arrived that quickly.

In this sleeplessness, I feel the physical ache of working at the Big Blue Logo Box store I ran way back when, as the store manager. Looking at my watch (!) 4:45 pm on December 24, knowing that it would take me an hour to get to the airport, and my flight left at 6:10 pm. I remember thinking that the only place to be for Christmas was somewhere in Orange County, where the sun is shining, the grass is green, the orange and palm trees sway. I can remember the joy of exiting the plane wearing the most awesome all-wool sweater skirt and jacket with a black bowler hat and the most precious Mary Jane character shoes, with dark black tights, and realizing that upon disembarkation, I looked like someone heading to Annie Hall's funeral.

The cold, the not-sleepiness, makes me remember the nights I spent poring over books and charts trying to figure out who I would be, and the timeline it should follow. I thought my security, my future, my lifetime happiness, was most strongly knotted to marriage, which would bring me children, and a spouse, which would, in turn, garner praise from my parents. And I had hoped I would find satisfaction for myself, because for whatever shortcomings I have, I always thought my children will be better than I will ever be. I thought my awareness of my weaknesses would somehow give them strength. At the time, with all of my education and desire to succeed in the business world, I really thought I had only two tasks to get right: be married to good man, and be a good mom.

But even now on this sleepless winter night, I can feel the anxiety of trying to be the right person, the right girlfriend. I can feel the needs-to-be written-about experience of my underwear, every piece of of lacy bit I couldn't afford, falling out of my suitcase and down the airport luggage carousal, a ten foot drop, waiting to be swept up into the arms, of what I thought at the time, was going to be my father-in-law. I can remember, as my nose chilled and my cheeks pinked to a hue unknown at makeup counters, thinking that perhaps, I had just become a story in some other family's life.

Numbed hands and toes, I remember declaring my love for Descartes as snow fell around us, feeling warm in what what was surely a blizzard. I remember the longest drive home that day in the windy Jeep.

I remember the cold fog at Fort Tejon on December 26th, 1996, when my now-husband, unwittingly admitted me into his life forever by asking me to marry him, and smell of the oranges we bought miles later at a roadside stand. I wore a yellow sweater that was donated last year by accident. The sky was so very blue that day.

And I practically relive the nausea of being in a fold-out bed in my sister-law's house, suffering from the worst food poisoning. I lay dying in their front room praying the world would end because my body was dissolving from the inside out, knowing that if I had not already been engaged, my groans alone would have heralded the end of my relationship.

The cold reminds me of how warm my children's little bodies are when they crawl into my bed in the morning, making my bed a tumble of  joy I didn't know could be so very big and heart-fulfilling. I think of Descartes' giant 'Lumber man' jacket that he purchased in the middle of August in Montana, making it the best off-season purchase ever. I think of ice fishing, calculating whether my child was bigger than the holes we cut in the ice.

So many memories, so little sleep.

10 October, 2013

Cluttered Mind

Today I am over...giant backpacks, barking dogs, spilled water on the kitchen floor, the need for caffeine to remain awake, and the arrogance of the people who run stop signs.

Book keeping, refinancing, infighting, and adult acne remain top contenders for the best thing to add to a bad day to make it worse.

And while non-pologists can be ironic, their words are merely placeholders for the sadness that fills the space while we wait for contrition.

Loose pages of elementary school work, broken pencils, the desperate need for a 9-volt battery, eczema, and any other reasons skin itches, rashes, or flakes should only be doled out in the smallest of portions to anyone who also needs to bathe children, or themselves, or requires oxygen on a regular basis.

I could also do with a break from "cure speak," ungrateful people, chicken in any form, traveling spouses, and inane homework questions.

I wouldn't mind if the hoops we jump through to procure medical devices would dissolve into puddles of rainbow sherbet, and I don't even like rainbow sherbet.


And I've been thinking, the world would be better off without political posturing, lack of civility, callous disregard for fellow citizens, self-absorption, and those who litter. And domestic abuse, there's really no positive benefit to that at all.

The buzz from fluorescent lights, laundry that sours in an hour, and that little grit that remains in some of the travel mugs when they've been through a full dish cycle-those things should be abolished.

I don't think anyone should need to have a splinter until they can afford to buy their own tweezers and extract the little bugger themselves; it just seems unfair.

On the other hand I could listen to Lorde singing Royals once an hour, for this week, at least, and my son's teacher makes him laugh, and learn, and he skips to the school bus each morning. We could use more people like her in our school systems.

And every single day, the view from my window is only beautiful or better.

I have a blister on my heel, which would seem to be troublesome, but I have two kinds of band-aids to choose from, and how many days of my life will I be able to choose Angry Birds *or* Hello Kitty to heal a wound.

It's small things that build upon each other that make the difference between alive and living.

My children still like me to read to them, and when we don't start our day in a pile of parents and children, snuggled-in for 'cozy cuddle time', we all miss it. 

We have enough, and then some, and a little to give to someone else if they need it.

We have friends who we trust to share how hard this life is sometimes, people who get it, and sometimes we are called upon to help, so we know we are trusted too.

My mind can still be changed with better information, and my heart is filled to bursting on a regular basis.

So if in the face of irritations I can be open to learn, or when confronted with pettiness, I am still able to love, I am hard-pressed to say that, for at least a moment, I have experienced anything less than success.





18 September, 2013

Meaningful Communication

My boy is home sick for the third day. He's in good spirits, but his nose is so runny that it's not fair to him or to his classmates and teachers to send him to school. So we are at home together, just the two of us.

We do our own thing. He plays in the back yard. I scan endless papers into the computer hoping that I will eventually not feel overwhelmed by the number of trees lying about my house in 8 1/2 by 11 inch slivers.

We meet every ten minutes or so, fifteen if I can hear his happy sounds through the open door, and five if I can't hear him at all. It's a good arrangement. I wipe his nose, spray sunblock and offer to put on a show if he wants to lie on the couch. He lets me clean his face, and takes my hand when I invite him in for lunch.

He loves shumai, little dumplings. And after a little searching I have found him petite, one bite shrimp shumai at the intimidating, but cool, "all of Asia and other Ocean-y places and don't forget the half shelf of Mexico" store. I add chopped up pineapple, a banana, and lunch is served.

We alternate between me feeding him bites and him taking the loaded-fork to do it himself. He asked for more watered-down limeade by rolling his cup to me. I asked him if he liked the shumai.

He made a lot of higher-pitched "Ye-aa-AHH" sounds, and clapped his hands together and turned towards me and smiled.

"I'll take that as a "Yes?"

"Ye-aA-AAA!"

and so I know he likes them. Awesome. My kid has the mad eating skilz. And then I sat there next to him, and it flashed over me, as if I had never thought of it:

my son doesn't really talk.

Whoa. How is that even possible? I mean, how did my kid develop, and grow up to be this almost thirteen year-old who doesn't talk? It was, for a moment, the strangest thing I had ever heard of.

It must be similar to the feeling that other people, those who do not have contact with people like my son, react when I tell them not to expect him to communicate in words. It must be an odd concept to grasp if you do talk, and your whole family talks, and everyone in your family for generations back has used spoken language, and your circle of friends, well, they all speak too. Not speaking must seem like a really big, daunting, overwhelming, horrible thing.

I felt for the first time how foreign that might seem to people who don't live with a person who communicates differently.

and I didn't feel sad for Jack. or for myself.

I actually felt a little sad for all of those people who don't know my kid. Not only because he is a cool kid, because he is, but because communicating with Jack is, on a regular basis, so much more meaningful than communicating with an average person.

When he expresses what he needs, and I understand him, it is one of the best feelings I have, one of the best feelings I will ever have, until the next time it happens. The sense of accomplishment and relief I feel when I have understood his desires, when I have actually heard what he is 'saying', when I have met him where he is, instead of expecting him to come all the way to me... I feel amazing and successful, and he, most importantly, HE is so damn happy that I got it right.

Parenting win! Happy child!

Because that's what we all want, to be heard, to be understood. We want to have someone interact with us where we are, as we are.

And I'm not saying that it is not challenging, for me, or his dad, or his sister, or his grandparents, or for any of the people who try to educate him in classrooms, because it is. It is frustrating to want to know what he thinks: Does he want to go to the street fair or stay home? Does he know the names of the planets? Does he want to watch a movie or play in the backyard? What does he dream about? Does he really enjoy road trips? Does it bother him when I run the dishwasher after he goes to bed? Are his shoes comfortable? And to be honest, it's not always easy to consider an entire other being's paradigm, when I am not always sure of my own needs.

I imagine however, that it is much more frustrating to have all of the answers to those questions and more, and not be able to tell someone. To know exactly, precisely, what you want, and be unable to convey your opinion, on how much salt to put on the eggs, or where you would like to spend spring break.

Or to have all the questions-- what if he has all the questions: Why can't you take pictures of stars? What's the deal with Stonehenge? Who invented pizza? Will time travel ever be possible? What if you had all of the questions, and couldn't ask a single one of them?

And I'm just guessing, but it must be frustrating to be this close to conveying what you want to have happen next, but the person with whom you are interacting gave up listening too soon, didn't wait for your answer, or worse, assumed you didn't have a clue as to what was happening at all.

I worry that he is bored, and that is a terrible thought. I find myself really trying to tease out what is disability, from what is his disinterest.

This conundrum seems more real to me lately as Jack gets older; he is an age that I can distinctly remember. And I'm finding I spend a lot of time unraveling the emotional mess of wondering what are my hopes or my delusions and what are realistic expectations, and that is all tied up with the respectful presumption that my son understands the world around him.

But when it comes down to it, I believe he has a lot to say.

I don't get it right every time, probably most times. I guess wrong, I forget to ask, I don't explain something that's happening, even though I know it could probably be a teaching moment.

But I try. He lets me know when I am on the right track.  

My communication with my son is harder for me than the ease I have with other people. It takes more discipline for me to wait for his answer when I am used to buzzing around. I can't multi-task and still get the gist. It makes me think more. Yes, it makes me tired, sometimes exasperated, but I think it is making me more thoughtful in those other conversations with the rest of the world, and engaging with him is worth it every time.

 ***

Lunch is over. I ask him a few more questions trying to determine what should happen next on this stay-at-home day. I finally understand, "play outside." He is out the door in a flash, his smiling face thankful that I guessed right. He claps his hands, and lets out a whoop.

I'm smiling too, because really, how often do any of us get that kind of recognition for anything we do?

10 September, 2013

We Do Not Cross the Line

Just after the recent murder of Alex Spourdalakis, yet another parent has attempted to murder her autistic child.

Services to help families are not available to the degree they are needed, often leaving parents of children with intense needs feeling abandoned, depressed, suicidal and, in some cases, homicidal.

I just sincerely wish these conversations could be separate. They must remain separate.

I know how it happens, how the conversations seem like they should go together. As parents of kids with intense needs, medical, mental or physical, we are each slogging through life, with easy days and hard days and harder days, until something really bad happens, then we are triggered to say to the world, "See, look how hard this is. Why doesn't anyone care?" But the problem is that caregivers say this at the very same same time that someone was trying to kill their child. The minute you tie those ideas together the conversation changes into, "See, look how hard this is. We told you. Have empathy. The poor mom was really struggling. You can't blame her."

But you can. You must blame her. We must unitedly and unequivocally say that we can blame her because she tried to murder her child, and those other caretakers, they actually killed their children. We can't "cut her slack" because she was having a hard time. We can't even cut her slack because she had been injured by her child, badly. We cannot say, "We understand why she did it. You know her life was so hard because of her daughter,  because she didn't have enough help, because she was burned out, because..." Because what? So what do you mean exactly? So it's understandable when there are days or weeks, when life is hard...

Like when my son didn't rest...for years?

He didn't sleep, he screamed. He bit himself until he bled. He bit us and we bled. He lashed out. He threw himself to the ground. He broke my nose. He gave black eyes to me and one to his grandmother. We went to doctor after doctor, and therapy after therapy to no avail. We had no medical insurance for him because he had pre-existing conditions. We paid the bills with credit cards. Our life fell apart a little bit, a lot of the time, for several years. There are parts, emotional parts, that are still raw. It was very hard. I was very sad, and hope was hard to find on most days. So because it was hard, because almost every hard thing led back to my precious boy who was beside himself writhing in some kind of anguish that no one could identify, unable to speak to us and tell us what was wrong, so it would have been okay to kill him? Of course not.

NEVER OKAY.

...and I know some of you know her, that mother, and maybe I'd feel differently if I did, but I don't. I can tell you this, if my best friend tried to kill her son, you can bet your ass I'd want her in jail. I would feel horrible. I would be certain that I had failed her as a friend. I would mourn the loss of my friendship, but those things are about me, and it would not change the fact that we cannot even intimate that there are excuses as to why we can kill our kids. I would want her in jail, held accountable without question. We can add in all of the complexities of our weak family support systems, and lack of services, and all of those complexities may be real and truly horrific, but they do not, ever, explain away the fact that this woman tried to kill her child.

We can't cross that line if we want everyone to value our kids and give them an equal place in society, because in every other way that's what we ask people to do. We want our children to have a place in a proper educational setting, and we want them to be able to go to the movie theater and grow to have meaningful work, and a safe place to live, and all sorts of basic rights. Then when it comes to the most important right, the right to live, that's where you cross the line?

I thought we had all decided that we don't want our children to be  marginalized and put to death because they do not contribute enough to society. Don't we want our children to be treated as deserving to be called wholly-human? A human who has every right not to be murdered because of their neurological makeup? When we tie the two conversations together it glares at me, and I am not autistic, so I cannot imagine what it would feel like to be autistic and read that a parent could, "see how that could happen." I don't think most parents think that's what they are saying when they offer empathy, but even said eloquently, this is all I hear...my autistic child is not as valuable.

but there can be no excuses. 

We Do Not Cross the Line.
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