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.

Frozy Toes

We just had a great Easter weekend in Tahoe with my sister and her family. So many things went right. Yes, I said so many things went right.

I think that's how travel is for most people. They just pack their bags and get into the car, or get on the plane, then they check in or knock on the door and then they put down their bags and they enjoy their vacation.

I'm not about to complain about going to Tahoe, don't worry. I already now how lucky we are to have a home there filled with supportive and loving family.. who let us stay there for free (or maybe for a case of Two Buck Chuck). It's just that travel is so difficult sometimes that it makes us want to go back home, lock the doors and have groceries delivered.

Lucy and I went up on Thursday night, so we would be there in time for me to sing with my sister at the Good Friday Tenebrae service. I think it's the first time I've made it in time to practice and be able to sing with her at church. I love singing with her, so it was very special for me.

Lucy and I had such a nice drive. We stopped and ate inside In N Out burger, something she always wants to do and never gets to, since it is often easier for our family to keep driving while I feed kids in the back. She had great table manners and we really enjoyed each other's company. We talked for most of the car ride up.

Descartes brought Jake up after school on Friday, and despite a very big storm, made it in time to put sleepy Jake with the babysitter and still get a chance to go for a drink at a new-ish wine bar.

Saturday we took the kids sledding. Jake didn't last in the sled even to get across the expanse of flat between the car and the hill. The powder was deep, and when he dove off of the sled we were pulling we let him stay there, playing in the snow. I stayed with him for a bit, then Descartes while the other one of us helped Jaster and Demanda with the sledding. Then I heard Descartes holler for me.

Jake lost a shoe. Lost a shoe? Lost a shoe. And of course this was the one time we had left the house without an extra pair of shoes for him. His snow boots had already been left at home, home 4 hours away, so we were pushing it with his tennis shoes. And it's not like Jake is going to tell us where he lost the shoe. Descartes carried him back to the car so Jake could heat up his frozy toes.

It was fine. Jake and I played in the car while the little kids finished sledding, and because they are little and every hill is a mountain, it wasn't too long before the whole gang was back to the car.

I'm not sure I've mentioned it yet, but we are headed on a cross-country trip this summer. We will be flying to the East coast, where we will meet Oma and Papa and their RV (which they will have driven across the country). I am going to the BlogHer '10 conference in New York that first weekend, then Descartes, and the kids, and the grandparents will pick me up at a train station in a state I've never been to (Pennsylvania?) with the RV with a car in tow. I will be detailing the trip later, but basically we spend a few days with my in-laws then drive the rest of the trip across the country with our little precious children, blisfully taking in National Parks and quiet streams and fabulous diners etc.

Except I just started to worry a little bit. The shoe thing got me thinking. I know if we forget anything we are probably going to be able to afford to buy it along the way, and there is an entire RV for Jack to hang out in if we lose a shoe, but what else will happen? I'm starting to get little butterflies about the whole thing. Detailed checklists will begin shortly.

*****

We will probably be blogging (Descartes is going to go all "bloggity blog!") the entire trip, and we will complete some of the same route that Descartes took with his family more than 20 years ago. It should be neat to take photos and take notes of the same places so many years later.

Hand, Hand, Frozen Fingers, Frozen Thumb

Squid interviewed me for this article about how children like ours handle truly cold weather.


1) How do your child's sensory needs color their response to cold weather?

Jake does not seem to notice hot or cold, generally speaking. If the covers fall off he curls into a ball. If he's hot in the summer he falls asleep next to his window on the floor. He loves the outdoors more than he dislikes the elements, and would happily play in our backyard well past the time a "typical" child would seek warmth. (This is a picture of Jake in our backyard in a little fish pond we no longer have because he would get into it whenever he had the chance no matter how cold it was outside.)

Because we have to be aware for him we try our best to clothe him in the most appropriate outfit for the cold. I try to wear a similar number of layers and fleece/wool combination so I can help gauge when he might be too hot or too cold. We spend hundreds of dollars each year to get him the new size of snow overalls (bibs), snow boots and gloves. Of all the children in the (extended) family, it is most important to get Jake's outfit right, since it seems to make or break any snow event for the rest of us.

If Jake is not comfortable he will whine or drop to the ground repeatedly until we remove him from the situation or correctly diagnosis his need. Once we figure out the problem, he will generally have a little more patience for us to fix the problem, but if we don't he lets us know he's done.


2) Can you relate a particularly memorable, related incident?'
My family loves to ice fish, and even hosts an ice fishing even each year (you should come... it's great fun!). To get to our favorite lake there is a very short hike, perhaps 30 yards up a berm and over the edge, then there is just a large bowl of flat easy walking. It seemed simple enough, and we really try to do things as a family so we all ventured out. We had a complete outfit for Jake top to bottom, he was even amenable to hats then, and really the only thing that wasn't quite working were his boots. They were just a little bit too big. This would be manageable for most kids, but Jake also has low tone so every step he took his little foot popped out of a boot. Then Descartes tried to carry him, and every other step, a hat, or a glove or a boot would come off. It was mostly funny, but so exhausting. Luckily my husband is strong enough to carry Jake, and we are smart enough to carry extra socks. Jake recovered eventually, but he was so frustrated the day was cut short. (I am pretty certain this is a photo from that day.)

3) Have you had to modify your family's routine or lifestyle (or location) because of your child's response to cold weather?

We have realized over the years that Jake is happiest with 20 acres at his disposal, his parents watching from a distant perch on the porch of a log cabin. Since we no longer go to Montana every summer (why can't everyone else just stay married dammit? We did!) it is a bit harder to find a free range outdoor spot where we can see him and keep him away from traffic. Luckily my sister lives in South Lake Tahoe, with a large back yard and acres of woods behind her house.

Descartes and I made a plan several years ago to move to Tahoe. We love it there: supportive family, beautiful scenery, reasonable cost of living (compared to the Bay Area). We researched available businesses for sale, did due diligence on a sporting/outfitters store and began looking into financing. We started talking about selling the house.. the whole deal. We went to Tahoe on a Friday night, giddy with our plans, sipping wine and laughing with my sister and brother in law about the great life we would have. In the morning, after a fresh snowfall we went to play in the backyard. We bundled our tiny new baby in a bunting and set her on the snow. All wrapped up she giggled and watched as her brother ran around the yard. Watched as he flailed and tore off his hat, and his gloves and hopped out of his boots. We got his boots back on, eventually. We ended up duct taping his gloves onto his jacket with his hands sort of stuck in them. I'm not sure he has ever worn a hat since that day 3 years ago.

When the gloves came off again we were done with the whole thing. Exhausted, we stripped Jake down inside the house and realized that we could never live in a climate any less temperate than the Bay Area. Overnight lows in the 30's perhaps, but winter days in the teens? Though the benefits of family support were so tempting, the idea of epic struggles every single day just to stay safe was just too daunting. If not winter and gloves there would be summer and sunglasses. Tahoe kids wear gloves half the year, and things like hats and sunglasses year round.

We were very sad. It is hard for us to admit defeat; we make plans and we execute them. We don't know what our family would be like without autism so we just keep plowing on making choices and dancing through this life, and most of the time we are happy and strong, but sometimes we are stopped. Of course we could make it work, living in a place with "real" seasons, but would that be fair to Jake, being tortured daily for months on end? Would it be fair to his younger sister to have to wait 20 more minutes each day while we get her brother dressed, the little girl who already has to "wait", "hold on!" and "be patient" constantly?

We still play in the snow, but this New Year's day we played in the front yard, as close to home as we could be, and instead of wearing gloves Jake just went inside every 15 minutes or so and got warmed up. Sure we missed the big sledding hill, but we made a cool snowman and an ice fort, and all of the kids were happy, which of course, kept all of the parents happy too.