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.”

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?"


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.


...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.

05 September, 2013

When I am Undone

When it is too much.
When I am
overwhelmed, or tired and sad. 
When I am unable, unstable, and undone. 
I go, because it will only take a moment to be okay again. 
I go, and I am:
Lying on my back
on a yellow catamaran.
I am in Mexico,
and responsible for only myself, 
(and perhaps for my fellow travelers in practical ways, but I am not holding on to their passports.)
I am staring up the mast
to the mainsail
and the clearest blue sky I can ever remember,
as we race the sun to the tip of Baja.


My knuckles are white from gripping my husband's
life vest,
as we skim across the waters of Lake Tahoe on a wave rider,
and I am laughing and laughing. And laughing.
I am thrown off and flying, and laughing
even as I go under the chilly blue of the lake. 
When I emerge,
he is smiling and circling back for me.

20 August, 2013

A Thank You to the Other Tables

Dear Fellow Patrons of Harry's Hofbrau,

You are awesome, and my son thanks you for greeting his whoops and hollers with smiles instead of glares. I am grateful too, as it made eating lunch a lovely date with my son, instead of feeling like a torturous way to get sustenance.

Thank God for people like you, the people who see difference and go back to your own lunch. Thank you for that, for giving my son an entire experience outside our house where he was included in the fold of society without judgment. 

I hope you get a chance to call the people who raised you and thank them for the good job they did. If I had the chance, I'd thank them myself. 

And you can tell all your friends about  how easy it was for you to do something that mattered so much to my family...maybe those other people will see how little takes to make us feel welcome. 

You made my day. 

The Mom of Another Kind of Kid

15 August, 2013

Clean Up! Aisle Five.

Most writers I know crave a space of their own where they can think, doodle, and hopefully-write. I have an entire Pinterest board devoted to retreat-type spaces that given more time, space and money I would create and use to nurture my soul and encourage my craft. I imagine a life where there are outlets on every wall, and at least four places to sit or lounge, so one could read or rest or write.

It will be a quiet space, except for the sound of rain on the roof, which will never be louder than inspirational patter. It will be cozy, with natural light, and bold colors, or not, and blue walls, or yellow, or white-washed old pine. There will be alfresco dining and writing, and the sounds of birds or perhaps the city. It will be a beautiful space that is just barely big enough to invite someone else in, with room for everyone on the patio. It will be glorious.

Or, what really happened, after years of quaint cafes in Berkeley and surrounding environs, museum spaces in San Francisco, then later, my dining room table... I find myself, in a Starbucks cafe inside of a Target.

I thought it would go the other way, that the more I called myself a writer, the more likely my environment would look like a writer's life was supposed to look. I only started saying I was a writer when my daughter introduced me as one to her kindergarten teacher. It gave me the legitimacy that I had been waiting for, so I am going with it, but what about my retreat?  Where is my awesome chair and the corner couch?
Apparently on aisle 5...just over there, past the underwear and the back-to-school section.

Is it a fall from grace, or me recognizing that I do not need as many props as I used to? The coffee is hot, and the wi-fi is free. I'll take it.

In college I wore the uniform, black, and black. I had journals and fancy pens. I carried a leather mail bag that was so heavy it makes carrying a sleeping child seem like a breeze. I brooded appropriately. I drank black coffee.

I looked over some of my writing just yesterday and was pleased to see that not all of it was drivel, but some of the events that weighed down my being, while not frivolous, were certainly not the forever heartbreak I thought they'd be. I didn't even know what I didn't know.

Some of what I read triggered nostalgia, remembering the carefree time spent out dancing with friends until the bar closed, and smoking on rooftops with no railings, three stories up, in the fog of the Marina. Some of it triggered the feelings of lonely I had, even as I was surrounded by people who cared about me.

I was thrilled to find pieces of my husband, as background, then more, as we went from friends to marriage. I laughed at a crush or two I had forgotten.

I missed my little apartment with the tiny room that was barely attached to the house on Dana Street. I missed my friends who have scattered around the globe, and my little vase I filled with flowers every Friday as a treat to myself.

I missed writing every single night, aware that anything I forgot to put to paper would be lost to time. I wrote with passion, about passion. I wrote about the mundane, and the dramatic, and there was poetry, and lists of character names. I wrote, and wrote and wrote.

The time I am in is always the best one when I look back. Even if it was ugly, it was the best because I survived or endured something and came out the other side. And of course there are all the moments that enlightened and surprised me, those were the best too.

But I just know these are the best of times, with happy, healthy children and husband, and our great friends, and lovely adventures. I need to take care to remember these days.

So this wobbly Big-Box store cafe table will suffice. I don't need a specific space in which to write--I just need to make more space in my head so the words can attach to each other in meaningful ways, and then I need to write them out. I don't want to lose this section of our jumbled, messy, lovely, happy, frantic life over a throw pillow and a tin roof.

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