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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Vacation Revelation

We went straight from camp pickup to vacation; now is the only significant length of time between June and December that we will all be together. There is a lot to process: camp, work and school transitions, the sudden loss of friends and colleagues over the summer. It seems I say in every post that we are learning a lot, but each time I write it I suppose I really mean to say we are learning unexpected things about the twists and turns our lives take, beyond what we have come to expect in the earlier years of raising children and getting older. The more I try to live in the moment, the more these unanticipated  events seem to get in the way.

Even as I write a hurricane (Isaac) has popped up out of nowhere to bluster through our trip and set us back a day – it’s causing both excitement and anxiety, but right now the nearly empty beach is populated by just two people, Dad and boy out for a snorkle in a window of late afternoon sunshine between the bands of wind and rain. This is the revelation of the vacation for me. Usually too chicken to snorkel, the calm waters of Caneel Bay convinced me that even I could venture out into the reefs. Much as I am enchanted by graceful sea turtles and spiky urchins down on the sea floor, the most breathtaking sight is the beauty of our boy moving through the ocean. I have always known he is more content under the water than above it, but I never understood the truth of that until now. While I have to remind myself to breathe through the snorkle, he dives and darts down through the water with an ease that astounds. This is a moment I can savor and one I would give him every day if I could.

And when he comes out of the water he rests. And then he talks. And most of words and phrases are his – not scripted or non-sensical. He wants to know more about his friend who died suddenly of leukemia while he was away (we don’t have a lot of answers; we can’t make sense of it, either). He wants to talk about school and home and his sister going to college. The water has cleared the static in his brain and it reminds me a little of Oliver Sacks‘s stories of people who gain clarity and lose it again. Even though the increased fluidity does not last, the gift from the sea is a window into his mind, and I wish and wonder how we could prop it open a bit longer before the storm arrives, passes, and we go home.

Letters? Oh…you mean theeeese letters…

Naturally just before Parent’s Day they get the kids to get caught up on their correspondence – just in time to ask you to bring them stuff. You know they’ve been sitting around his bunk for a while because there’s no mention of the knee injury. Doesn’t matter – I live to see his distinctive handwriting (best in family), which I keep trying to make into a font.

You can tell that the bulk of his letter-writing experience has been to Santa Claus and the Easter Bunny because he’s got the gift requests down pat – very specific, down to the materials and manufacturers. The boy understands how to communicate when he wants something – he includes visual prompts. He drew the cookies he wants me to send.

Awesome.

Second Phone Call: Talk to Me

Damn the communication disorder. We agreed on early morning phone calls because we wanted the call to be as far away from bedtime as possible to avoid homesickness, which is more likely to strike at the end of the day. But now he comes to the telephone sleepy and hungry, ready for breakfast instead of conversation. Sweet and groggy, he gives maddeningly short answers.

What’s your favorite thing? “Evening swim.”

How’s the food? “Good!”

Are you having fun? “Yeah.”

What do you think of camp? “Awesome!”

I know these are good and encouraging answers, but I want details. Reassurances. Stories. Questions about how things are at home. I remind myself that I, too, am monosyllabic at 8am. More importantly, this isn’t any different from the conversations we have over the phone when he is here. I know that he is looking at his counselor as he speaks, waiting for prompts, and that the short answers mean that he is not getting prompts because they know I will hear it if they model answers for him. I also know that if he really wanted something, he would tell me. All of that is good, but at the halfway point of a 7 week separation I can’t help but want more. I am being unreasonable.

So the voice, with a trace of sleep in it and a smile behind it that I can detect, will have to suffice. And I blog about because as I write it down it gets more encouraging in the retelling.

What are doing today? “Having breakfast.”

What’s for breakfast? “I have no idea.”

What do you want for breakfast? “Pancakes.”

What do you think of camp? “I’ve been here a lot of weeks!”

Is that okay? “Yeah!”

We are coming to see you on family day! “Good!”

We will all give lots of hugs. “Yeah.” <heavy sigh>

We love you and are so proud of you. “I love you, too!”

We can’t really ask for more than that.

But a letter would be nice…

Day 21: Forbidden Fruit Out on the Table

And so begins another week, boyless.We are holding his place for him even as we try to take advantage of being able to do things that it doesn’t make sense to do when he’s home. You never know what you are going to miss, that’s for sure, and you never know what small temporary joys will pop up – like being able to leave a bowl of apples and peaches on the table. Other items are scattered around the kitchen that aren’t typically in plain sight – bananas, french rolls, hot dog buns, home made chocolate chip cookies. He loves them but should not eat them – they cause physically mild but emotionally distressing reactions – but if they are within reach he cannot consistently resist the temptation (kind of like me and chocolate). It almost seems disrespectful to have them laying around; like an open bar to an alcoholic. It’s not that big a deal but it is nice to have the food where I can see it – how many rotten apples, black bananas and moldy breads have I found in drawers, closets and cabinets over the years? I hide the food better from myself than from him much of the time. Often I just don’t buy what he shouldn’t eat but when others in the family request it I think it is important to respect their preferences, too.

The place holding is literal as well as figurative – his seat at the table is marked by two ceramic hearts he made last spring, professing his love of art and of us. I can’t predict how much he will have changed when he gets home, but I am certain that I will be different having gone so long without him. The hearts will prevail, though, that I know.

First Phone Call: Permission to Breathe, Granted

Week two. We have proof now. He is still the same boy we dropped off last week. He is as strong as we knew he was and so much stronger than the school experts – and I use that term loosely – said he could be. He is always capable of throwing us a curve but he will never let us down when it really counts. Everyone who knows him well knew he would rise to the occasion.  The voice is still a little flat, the answers short but sincere, and no discernible traces of angst. He is still wary, still not entirely comfortable with being so far away from home (I see the Scooby Doo he smuggled to camp tucked under his arm now and then, a telltale sign) but he sounds safe and brave and proud. And in the typical role reversal he has given me permission to be braver and prouder than I was a week ago, because I have as much confidence as I have ever had that he feels and is safe. These are rare moments, indeed, for in this world there are few places that provide both haven and meaningful activities for people with developmental delays, and the older they get, the narrower the choices become. So many people are working to expand the options and opportunities for adults with autism and I can see that I will soon be joining them in building a community of which we can all be proud. I still don’t know what it will look like but from the sound of his voice it appears, for the first time, truly possible.

A Woman Adrift

I thought that a break from managing autism would mean less stress but what it has created is a vacuum in my attention span and total emotional disequilibrium. The opportunity to not build my day around the boy has made the opportunities that emerge less easy to embrace – maybe it’s latent exhaustion, or latent guilt, or just a loss of identity. I did not expect to be happy for him to be away, but the sudden moments of devastation take me utterly by surprise. There have been plenty of moments of grief in my life, but this physical emotional ambush is entirely new to me; I need to be able to identify the signs so I can see it coming or my family will stop going places with me. Add to this the realization that, while I was building my attention around him, everyone else built their attention around other things and people. With him away, I feel excluded. I haven’t yet figured out how to reinsert myself back into my own life. I’m lost, boring, and stupid.

And yet these are good problems to have because it means that he is doing well at camp and I don’t have to focus on making that situation better at this point. I recognize the luxury of breaking down and cannot decide if it is a process I have to go through or one I have to beat back.  Depression and self reflection and recovery all sometimes seem like the same thing to me. Healthy time and space or withdrawal from life? It all depends on the  moment, doesn’t it? On the quality of the thought? Sleeping too much or too little? I seriously do not know.

All I really do know is that an hour of absolute quiet here and there is what I always crave and is what is allowing me to process these thoughts now. No music, no TV, nothing but the humble spin of the clothes dryer and an open window that lets in the summer breeze. I think that if I can have these moments for part of every day I can get my groove back. And as I sit before my keyboard and type this I find – yet again – the startling image of me as my mother. Drinking coffee and typing, thinking, ruminating, and inexplicably driven to write down what is on my mind. How is it that I work so hard to cut new paths only to find myself on these well worn tracks? Am I carrying on a valued tradition or am I just a cheap knockoff of an extraordinary person? I can’t say that I am living in her shadow; our lives are so different. It’s more of a behavioral blueprint that my brain references without my permission. It is the best and worse part of me that makes me overly analytical and controlling and keeps me from being in the moment and thus I never appreciate anything fully unless it’s in hindsight. But I am really good at hindsight, I must say, which can make me good at planning, too. But this constantly looking backward and forward is making me dizzy and literally unable for focus on what is in front of me.

My sister has advice that I remember at times like this. She talks about making sure that you structure your life so that you are in “moving water.” I find this concept incredibly helpful because it can mean so many different things. When you are a stay at home Mom the difference between moving water and a riptide isn’t much. I remember vacations on the Carolina coast when I felt like I was standing still, bouncing gently in the water, enjoying the salt water’s ability to make the baby in my belly float independently.  And then I  realized I was a half mile down the shore from the beach house that was in front of me a few minutes before, carried south by swirling waters made stealthily swift by an approaching hurricane. I recall the sensation of emerging from the water, feeling the satisfactory weight of the baby settling back into place, order restored. I made my way back up the beach to the place where my life waited for me.

See how that happened? I started out in one place at the top of the post and now here I am making a metaphor out of a distant vacation. Equilibrium restored, for now.