structure

27 October 2014

Saturday Moment: Halloween Prep in Sodor Brings Some Surprises

IMG_0018He’s on a roll with drawings and decorating, and today the trains need Halloween prep. I never fail to marvel at the focus and precision he brings to these projects, which are totally his idea. Add to that he has positioned himself right in the middle of our own project of reorganizing part of the basement – we are working near and around him, going back and forth, calling to each other and generally making a racket. He is unperturbed. Add to this list of potential antecedents my request that he move part of his train set temporarily so that I can clean out and move a cabinet that holds various frames, craft supplies, toys and videos. I don’t really want him to see the things I intend to give away, but have already decided that I won’t give away anything he wants me to keep. We have finally learned to pick our battles.

IMG_0016I can tell he doesn’t want to move the train tracks out of my way, and I am prepared for him to declare that I am an Onion lady who is too full of organizing.  I wait a while to let the request sink in and focus on something else. Then he materializes in front of me, holding a box of videos: “I’m too old for these.” They are Richard Scarry ABC and counting videos. They are my favorites. But I take them and set them aside with the other “give away” things.

Then he appears with another box of videos, classic Disney this time. “We have all of these on DVD, which is more efficient.” Then I realize that, rather than move the tracks or allow me to navigate around them (which I couldn’t – I’m such a klutz I would definitely step on them) he is carefully removing everything from the cabinet himself.

IMG_0017So while he was constructing Halloween decorations for his trains, he was also making decisions about growing up, and managing change and doing it all beautifully, meticulously, and offering up explanations along the way. A task that would have been frought with emotion and behavior management (and that in younger years I would probably have attempted in the middle of the night or while he was somewhere else) had evolved so peacefully I almost didn’t notice – until I realized that he was having an easier time parting with things than I was (you don’t want that 12-foot train puzzle that you put together a thousand times, really?).

Not so long ago I wondered if he would ever grow out of some things and I concluded at the time that it didn’t hurt to wait. It’s not always true that all things come to those who wait, but on this day it is. As I was reminded by him more than once this week, “Patience is a virtue, Mom.” True, that.

30 July 2013

The Miracle of Enough Sleep

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It is a breathtakingly beautiful early summer morning – sunny, cool, dry – and for once I do not have mixed feelings about being awake to appreciate it. I am not a morning person. Never was, never will be. I am awake because I have to be but I can also say that I have had enough rest. This is new.

Last Friday night I slept for 12 hours. I don’t think I’ve done that in the 20 years since I had my first child. We had an early dinner and I fell asleep on the sofa, moved upstairs to bed at 1am and then woke up at 8am. I was aware of bedtime routines and kisses good night but everyone seemed to know what they were supposed to do and follow through. After a week of 5-6 hours a night, that sleep was not only needed, it was transformative. I faced a busy weekend not with fantasies of a nap but with energy and enthusiasm and a sense of emotional flexibility that often just isn’t possible.

SONY DSCI thought about the parents who have gone for years without even those 5-6 hour nights I’m whining about, and I am thinking about them again this morning. Sleep deprivation plagues many people for many reasons. For those who are awake because they have a sleepless child who requires constant supervision, the exhaustion is complete and relentless. Even on nights when the kids manage to sleep through the predawn hours, parental eyes pop open anyway, expectant of the footsteps that may or may not patter down the stairs. Knowing that the child is asleep doesn’t mean going back to sleep for another hour or two. Usually, worry fills in until they do wake up. It’s a hard pattern to break.

For those of us who face the day bleary eyed and worn out, I hold out for the promise and possibility of the restorative power of sleep. We don’t create sleep deficits on purpose – many children on the autism spectrum have intractable sleep issues and keep parents up until all hours, and we use the few hours while our kids do sleep to do things they can’t get done when the kids are awake. It’s just as important for our kids that we are rested as it is for us – people who’ve had enough sleep have more patience and make better decisions. If you can find a way to accomplish that magic 7 hours of rest, it is worth striving for.  Jane Brody wrote an informative essay on the health risks posed by sleep deprivation – it’s good tool for advocating with family and caregivers to let you cobble together a longer night or a decent nap.

SONY DSCI can’t blame autism for my sleep problem entirely. My boy is a better sleeper than most; it is the other obligations (obsessions?) and the worry that keep me awake.  I enjoy the quiet, peace and dark of late nights. I love being awake when everyone else is asleep. Books and movies are more fun in the dark. For years I sat in the dark on the floor of my boys’ room, waiting for them to go to sleep. As much as that process was driven by necessity, worry and confusion, I genuinely loved those moments sitting (sometimes writing) by the glowing night-light and waiting for the steady breathing and gentle snoring that arrived with their slumber. By the time I tiptoed out, no matter how crazy the day had been, we were all in love again. I wanted to savor that feeling and not go to sleep right away myself. I needed some time to wallow in the normalcy of sleeping children and talk to my husband uninterrupted. Still, there were times when I konked out on the floor before they did.

One gift of adolescence is that it brings kids who sleep in, when school allows it. This break in our summer program leaves my boy in bed at 9am still asleep. I never dared to hope there would be a time when he would master a self-directed bedtime routine at reasonable hour and sleep in on a sunny morning, even with sun streaming through the skylight directly on his bed. It might not sound like a miracle, but in its way it is. It gives me time to write this, time to think up some structure for this unstructured day, time to appreciate the breeze though the open windows after a week of hot and humid weather.

Peace of mind and enough sleep – I don’t think I can have one without the other, and having learned this lesson (again) I am going to try not to forget it.

PS: This is my 100th post. Woot.

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9 December 2012

When they were handing out Christmas Spirit, he got in line twice

We volunteered to throw the class Christmas lunch at our house and found ourselves in major prep mode. The light snow that had been falling all day put us in just the right spirit. When walked into the supermarket they were playing a snappy version of Jingle Bells. Our boy started to bop a little as he walked in time to the music; I did, too. We bumped shoulders a little and headed toward the bakery, bopping together. I was lost in the moment, having fun.

“Hey there!” Busted, dancing in the store, by the mother of a classmate of my daughter – someone I know well enough to be a Facebook friend but not so well that I didn’t feel sheepish. I threw up my hands.

“Okay, you caught us dancing the supermarket! We are modeling good holiday behavior!” He was bopping off without me so I had to move on, but we left her smiling. When I caught up with him he was very busy at a table piled high with Christmas cookies.

“We have to move these cookies to allow the train to go through!” Among the piles of cookie boxes there was indeed a buried train setup. The cookies were encroaching on the tracks and had dislodged the train from its proper spot. He worked quickly and efficiently, keeping the cookies in neat piles but reorganizing them so they would not interfere with the train setup. He was the spitting image of his father in every wonderful way, so I took a picture to e-mail his traveling Dad and tell him how we’d been caught dancing.

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When I finished sending the mail on my phone I looked up and the teenager who works in the bakery was standing a few feet away, watching us in bewilderment. She had come out from behind the counter to watch us warily and I saw it dawn on her that he was doing a good job, and was improving on what I assumed to be her cookie arrangement.

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He finished up and surveyed his work with folded arms, pleased as punch.

“There! That’s better!” I looked at the girl.

“Is this okay?” I asked.

She nodded slowly, “Oh, yeah.”

And then he was off.

“C’mon Mom, we have to track down that sneaky pizza crust!”

If there is a future in holiday cookie displays, we are in great shape.

30 October 2012

A Different Kind of Storm

Hurricane Sandy may have passed, but clouds remain on our horizon. I’m not yet ready to post about our boy’s ordeal over the past couple of weeks, but as we stumble through the second day of weather-related school cancellations I see a furrowed brow and a short temper that prompts me to warn my younger son to cut his older brother a wide berth. Other families face much greater challenges from aggression than we, but I am so conflict-averse that even the rough and tumble of typical adolescent boys sets me on edge. We are all off kilter from too much TV storm coverage and howling wind and pouring rain, followed now by creepy cloudy silence and listless lack of routine. We know we are fortunate to have the power on and the trees intact – it wasn’t our turn this time but who knows what the winter will bring now that we have used two of our snow days.

We read on Facebook about some families taking delight in the drama of storm prep and others – the ones with kids on the spectrum – wary of how no power or school might unsettle their kids. We are somewhere between. My boy slept in the basement last night to protect his trains and animals from the perceived threat of the storm – his strong protective instincts run from cutting trees with Dad to carefully tending to his stuff: the Thomas trains stored in their sheds and Playmobil animals in the barns – even the portable DVD player that is the Sodor Drive-in theatre tucked safely away. Camping on the couch in his sleeping bag is part of what makes him such a beast today even though he came upstairs at dawn and finished his rest in our bed after Dad went to work, his feet looking for mine while he fidgeted in his sleep.

And as I write I hear the boys talk in warm tones and the sun emerges to cast a brighter, wintry light on wet fallen leaves and bare branches. The clouds are expected to come and go with maybe one more wallop of rain from the backside of the storm. We’ll proceed cautiously through today and look forward to the routine of tomorrow – which, I now realize, is Halloween. Oh boy.

16 January 2012

Tyranny of the Snowflake Plates

We have plastic plates with white dots on them that look very much like snowflakes, and this morning my boy came in and said, “Mom, you need to put these snowflake plates away.”  All of the holiday stuff was stowed last weekend, but I usually keep these plate out because, well, it’s still winter.  “They are TOO Christmassy.”  he says. “How about we just think of them as polka dot plates?” suggests my clever girl.  Nothing doing.  “Put them away,” he says, “they make me worried.”

Everything its place at its proper moment; this how he keeps from being overwhelmed and thus he structures our lives for us by compelling us to manage the details properly. Sometimes, just so he knows that change is doable, we will do something really crazy like have hamburgers for lunch at home (“It’s not dark!  They are only for dinner!”) or ask him to take a shower in the morning (“HMPH!”).

But this time, on this subzero no school Monday holiday (“No PJs all day, right, Mom?”), I will store the plates away until the day after Thanksgiving, when he will undoubtedly ask for them.

I should probably take the Christmas wreath off of the front porch, too.

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PS  The cookies in the photo are salted shortbread cookies and the recipe can be found here.

23 July 2011

It’s the Little Things

This post originally appeared on the LettersHead site in the summer of 2010.

Living with a person who has autism brings surprises every day, some pleasant and some decidedly less so, but they always catch at your heart, one way or the other.  Take this box of peaches.  I left it in the back of the car for the night, knowing that if I brought it into the house that my son would eat them all before dinner and then I would have no fruit to put in his lunch the next morning.  He is, after all, a teenage boy.  This morning when I went to fetch the box, I found it like this, with four peaches eaten and the remaining pits carefully placed in each compartment (the two empty ones are the ones I put in his lunch).  When I asked if he “sneaked the peaches,” he said, “Yes!  And I left you the seeds!”