It’s been a rough couple of weeks for me and Owen, since the time change.  Owen always starts to change his clocks before anyone else does, waking at 4am or so at random intervals weeks before D-Day.  I was completely perplexed by this, again, until I put the pieces together.  Oh yes.  This has happened before.  About six months ago.

I’m sure Owen has a body memory of this twice a year assault to his schedule, when suddenly and unaccountably everyone around him begins to do things at a different time, day after day, all out of rhythm.  This may mean that his morning bath suddenly lasts twice as long, and he waits too long for breakfast.  Or it may mean his mother or father comes into his darkened bedroom, turn on the light and ask him to get up.  Either way, very unsettling – and he responds by beating us to it, and disrupting his own schedule.  First he seems to anticipate the change and get up earlier, then he gets up even earlier (ha showed you), the he can’t get up early at all.  When the routine is to be unsettled, for reasons you do not understand, well – no wonder Owen stops sleeping well.   And I suppose it’s no wonder during non-time-change times of year he occasionally turns tables, flipping on the light in his parents room to let them know that he is up, and they are not.

This spring, through a variety of mis-chances having to do with late nights and spring break, we came at the changing of the clocks already tired.  Cue overdrive.  I found myself buzzing between four or five projects, every evening working on a couple of things simultaneously, as if this were the normal thing to do.  In a way it is, for me.  My family has seen this behavior often enough not to notice much.  When I got to the point where I had three plus projects in the living room and dining room, (two or three in the studio is a given), and was taking on about 4 new volunteer jobs at the church, even I began to be anxious and lose sleep.  A thought penetrated my foggy consciousness:  I can’t do all these things.  Why am I trying to do all these things? Help.

During that week we took Owen and his plastic collection and scissors with us to a church supper and talk. Owen was pretty good, but he was busy.  One of our dear old friends sat at supper with us, and she commented, watching Owen chop, “He’s so industrious!”  Some people are blessed with a positive way of looking at things.  In years of writing about Owen’s obsession with chopping large objects into small, I had never thought of this as industry.  It gave me a new perspective.  Maybe Owen’s busy-ness and mine…bore some relation to each other.  Maybe Owen and I both suffer from spring mania.


Ah! Spring! The sun comes up earlier, bird sounds start earlier, and not content with that, society sets its clocks to wake us suddenly, rudely, even earlier.  Inspired perhaps by growing things, opening things, stirring in the tree sap, who knows, we sensitive spirits start to buzz.

All over the house are Mommy’s piles : photographs on their way to albums,  seedlings on their way into gardens, ideas waiting to be articles, memos, thoughts, half-written letters, reminders for commitments or committees.  And all over the house are Owen’s piles:  clear plastics from fruit boxes in various stages of manual purposeful disintegration, pieces from vinegar bottles, green plastic hunks chopped from mushroom boxes, bright colorful bits chopped from who-knows-what-don’t-think-about-it found objects, also papers and bottles and cans collected on walks into the woods.  There’s always more – always more plastic (wood, metal – but mostly plastic), and always more ideas pouring out of my brain into our house.

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My frenetic activity bears a lot of resemblance to buzz – I buzz more than I am productive.  I might as well be chopping up plastic bottles.  And through that buzz I tried to think whether Owen does this gathering and chopping more and more intensively during this season.  The jury is still out.

He may – as he darts forward to drag a half buried bottle from the bushes, or charges across the parking lot at church, with unexpected speed, to investigate the contents of the recycling bin.  “Oooh! There’s another over there! And there!—and THERE in the weeds! That one needs loving!!

For days before Easter weekend I worked purposely to disengage,  to calm my mind, to breathe, and so prevent myself swirling into a tighter and more layered frenzy of industry –-  But any juggler can always add one more ball, right? It’s just one more! – for a good cause!  –  And they need me!…


You need only add a little Easter chocolate to spring mania to run helter skelter to the extreme end of the spectrum: Omnipotence! Omnipresence! and Omnipresence!  Whew!

 Naps are the only cure. Naps will save us.

The way back out of this intensity, apart from a trip to our doctor, thank God for him, is to start purposefully sleeping more, doing less, eating less sugar, drinking no caffeine, no chocolate!  Very sad.  Life is not always fair.  If I can make myself stop, I nap before Owen’s van arrives at the end of the driveway in the afternoon.  If I can’t, I make him a snack, and talk him into taking a rest with his bin of plastics, while I rest on his bed.  A harder struggle is to get into bed earlier that night, when all is quiet and the projects make a siren calls to me  from every corner.

Owen has begun to clean up his piles from floors to drawers, and I am now wise enough to follow his example, to dismantle my 5 or so projects and put them away.  In my manic states, I can imagine a million ideas,  hundreds of brain children, but it becomes harder and harder to get any one thing done.  And I usually stop writing.  Writing requires inward focus, and quiet borders around my life.

This is the world where Owen lives, I suspect, and part of the reason he does not progress or progresses very slowly, in learning.  The exception that proves the rule is that when he REALLY wants something, under this sudden focus on one idea he open locks, climbs fences, locates hidden sweets, or charges across parking lots at unrecognizable speeds.

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As I struggled with how to finish this rather long posting, this morning Owen gave me my ending, and my purpose, as he so often does.  I thanked him. I was washing his back in his bath, thinking how peaceful was this small bathroom world, and this humble chore.

The thing about my states of mania is that they start in wanting to make a difference, make a change, to improve something. It never looks like trying to climb mountains until I am in the middle of the project.  In the midst of spring mania, possibilities like mountain range vistas open before my eyes – I can see things I didn’t see before – I can see how things could be done!

But, from the vantage point of a mountain, the only things that seem real are other mountains.  Hills hardly register.  People, houses don’t even appear.  Mountains are reality!  Mountains are exciting!! But, it takes a lot of energy, dealing with mountains.  And getting from one mountain to the next takes much more energy than it looks like from the mountain top…

When I began to come down from my mountains,  I was relieved to rediscover the calm everyday work of my life waiting for me.  Like scrubbing Owen’s back.  By the simple fact of needing my help, Owen helped me find words for my feelings:  how powerful the small things can be, how important to just create everyday calm out of chaos.  Even mountain climbers need a warm meal, clean clothes, and clean sheets to sleep under.

The chaos of enthusiasm and creativity, joyful and productive, is a state I would never leave entirely behind.  But as long as I can stop, and come away, I will remember those vistas of mountain ranges of possibilities as a gift, as I descend into the oblivion of sleep.

Another time I will try to wrestle mountains of photos into tidy albums.  Another spring, I may plant more seeds, earlier, for the summer garden. In some future election year, I may make thousands of calls in support of a worthy candidate.  But today, I will scrub Owen’s back, get him a warm breakfast, and make sure to give him a hug and kiss before he goes out.

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All Flugged In


As far as I know, Owen never actually said “flugged in” meaning plugged in.  But I can’t swear to it.  With each of our kids a few baby words crept into the Simons family vocabulary and stuck there.  Owee does turn his ps into fs sometimes — so we speak that way to him sometimes, when we are trying to communicate.

This is not something any speech therapist would recommend.  For as long as I have known Owen, the therapists in his and our life have been insisting that we make him reach for it – ask him to use the right words and wait for them, give him heavy things to carry to increase his strength and balance, and so on.  One excellent teacher made me aware that the things Owen wears and carries should be “age appropriate” too – at 15, his backpack really shouldn’t have a kiddie logo on it, she pointed out, and we might want to encourage him to carry more age appropriate toys. (What, not the legless baby doll??)  So to speak to him in baby talk is certainly not good practice.  I know this.


But…it’s warm.  Words spoken that way come naturally, and seem to reach out tentatively across space to make a better connection in often unreceptive ground. Owen responds to those words. So I still say, “Flug it in, Owee!” without (mostly) thinking about it, when it’s time to buckle up in the car.

The first time I witnessed Owen flug in his own seat belt, I was amazed and delighted – so proud of him!  I had absolutely no idea he could do that.   To this day I have no idea who taught him or how they taught him to do it.  I know I didn’t.  I still get a jolt of pleasure every time Owen pulls that belt over and turns to attach it at his side. He may fumble to get the vertical piece aligned just so with the receptacle, twisting his torso, curling down.  Sometimes he has to hold the receiving part UP while pushing connector DOWN, since the very effort at junction can push it away and down out of sight.  But he can do that.  It means pulling up with one hand while you are pushing down with the other – as with so many things we do daily, far more complicated series of movements than we ever notice.  But he usually can do it, if I force myself to wait, and breathe deeply.  Maybe assist, if he’s having a foggy day.  That seat belt “click” it is a reminder that I still do not know everything about my son, that I don’t know everything he is or will be capable of doing.





Once a long while back, my Aunt Dorothy directed me to a book called Steps to Independence, a manual all about how to teach intellectually challenged people how to do things.  The author suggested it was possible for people to achieve a lot more independence than anyone guessed if you analyzed the task to discover how many pieces it was composed of, and then taught those pieces, or steps, separately, one at a time. The book was full of charts and graphs to illustrate the basic premise. I admit to not being very excited by that manual at the time I first looked through it.  No manual is very exciting reading to me.  And at that time I still had a chip on my shoulder about being Owen’s teacher or trainer as well as his chief cook, laundress, and bottle washer.  I was still resisting; I had not yet embraced my chaos. But still I found myself using what I read there.  It heavily influenced the way I work with Owen, and I still have the book. One step at a time.  One simple step, building on another.  Obvious.  Brilliant.

How many jobs today that we do for Owen could he have the satisfaction of doing for himself, not to mention the praise and appreciation for accomplishing, if we could slow down and teach them?   But finding the time (and patience) to teach them, step by step, is more difficult than just doing them ourselves.  Or so it seems.

When my brother Keith was a young guy struggling with a far lesser intellectual disability than Owen, I remember how hard it was for my father to let him mow the lawn.  Keith was, among other things, directionally challenged.  He couldn’t lay the mowed grass down the way that made sense to Dad – he just couldn’t seem to do the job the way my dad wanted it done.  Too bad Dad didn’t have the book…

Similarly, it wasn’t until my father-in-law experienced health problems and became unable to stand for long, walk far, or carry weights, that there was a place in his life for his special needs son Chuck to carry his groceries, wash up his dishes, and stand at the grill and utterly kill the hamburgers.  (Chuck was famous for overcooking hamburgers, which is a sin in my husband Edward’s family.)  Like my own dad, Dad Simons had been a strong, active, and able-bodied man most of his life.  It wasn’t easy or obvious to him how to incorporate his special needs person into it.  But the accident that disabled Hil Simons opened doors for Chucker.  I think there is a lesson for me there.

It’s wonderful to be needed.  It’s also not a bad thing to slow your world down enough to need help. I could probably use that reminder every day.

Flug it in, Wystan.