Owen Meets “The Revolutionary”


Last night Owen went to see a show of student artworks.  Sculptures.  He loved it.

This piece is called “The Revolutionary” – a young head on an old body. The only bad part was not being able to touch them. Even standing too close is frowned on in the art world, let alone hovering and patting.

Unless the artist in question is your sister Bronwyn.



Owen, always a restless fellow, inclined to sudden pirouetting and wanting to touch or retrieve items, or straighten them out, can be a stressful person to take into a museum environment.  But last night he was pretty calm, and it felt right for him to be there with us.

Still, I wondered, as we drove home.  It was Bronwyn’s first show.  Was this for her yet another time when Owen’s needs dominated the family scene, distracting mom and dad’s attention? They do, even on a good day.  You can love someone and still feel conflicted.


So after we had come home, I texted her to acknowledge that.

“I feel the exact opposite of a loss,” she texted back. “I’ve always privately bonded with [Owen] over the way we like to touch material. I think we’re both very sculptural, and I was thinking about the way he touches faces when I was building mine…”

You’re a pretty lucky guy, Owen Simons.


Interview Time Again

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What is it like for a potential caregiver to meet Owen for the first time?  I have to wonder this, as we prepare to interview caregivers again.  Good caregivers move on, their life changes, etc – and caregivers that don’t work out move on even faster.

So it’s a never-ending job, looking for people to provide the support and respite that makes the life of the parent of a very special needs person a balanced life.  Caregivers are terribly, terribly important.

Years ago, when Own was just a little guy in a family of little guys, I our sitters were neighborhood kids.  I can’t believe I went so long without regular respite from the care of him, but I did.  He had his school every day, and on weekends we just powered through.  In those days Owen didn’t stand out so much from his siblings, and I was younger. Our church provided help with Owen on Sundays so I could attend services, and apart from Friday or sometimes Saturday nights staffed by kid sitters, that’s what we had.

When during those desperate times I tried to find some kind of help from organizations like the ARC, they had nothing for me.  They didn’t have a list of possible caregivers and they didn’t connect me with a company that did.  I think their concern may have been lawsuits, being held accountable for caregivers that don’t work out or behave inappropriately or aren’t sufficiently trained. The fact that I was crying into the phone didn’t make a difference.  No one could connect me to a list of providers of care.

As Owen got older and taller, and more physically developed, and the available kid sitters seemed to get younger and shorter, I began to rely on Owen’s sisters and brother to sit.  Owen likes that very much!  Owen’s sibs have always been excellent with him – there’s a strong bond there to overcome the frustration he brings up.   But our other kids have their own lives to live – as they began to leave home for school elsewhere I realized it was time to take my head out of the sand, and do something.

Finally I geared up for action, and put ads in the papers. This was about the time of the recession, and I got LOTS of nibbles.   To many people the $15 per hour we were offering sounded great. But out of 30 or so interested people, maybe one or two were actually appropriate for the job.  Out of that group I got one wonderful caregiver who understood the job well and enjoyed taking Owen for long walks.   But then, alas, that wonderful sitter’s life shifted and she could not continue.

The problem is, watching a person like Owen is not a job for everyone.  Special people require special caregivers.  Specially clever at figuring things out, specially patient, specially gifted with a sense of humor and an appreciation for quirky people.   With younger untrained applicants a typical pattern is to simply stop showing up and not answer my calls when they realize that this job is not for them.  I can be a little slow, but eventually I realize that this energetic young person is not showing up.

In the special needs world, Owen has been considered a peach – he doesn’t hurt himself, he smiles even if he doesn’t always talk, when he talks he says funny things.  He can be snuggly.  But he knows how to be a real PILL nevertheless.  And not everyone lives in the special needs world.  And some people who can deal with one kind of “special” cannot deal with another.

One kindly young man who worked for us a few times came running to get me a few minutes after he had started out with Owen for a nice walk in the woods.  Owen had jumped into the drainage ditch beside the driveway and started stomping, laughing wildly, his shoes and pants covered in swampy black goo.  Presumably, testing.  Such a kindly young man.  He didn’t last long.

Owen’s incontinence is probably the biggest challenge about him.  During one period when we had a lot of new sitters learning the job, Owen must have decided he had had enough of these non-family individuals in his life, and he took incontinence to a new level.  His sitter was a student from University of MD who professed an intention to be a special education teacher.   I wonder if she ever did?  Owen may have changed her career choice when he stood for his potty break and whizzed all over the floor of the bathroom.  The young lady’s response was outrage – she hadn’t signed up for this, she said.

I know just how she felt.

It wasn’t until my friend Sheila (bless her,) mother of a special needs young lady herself,  told me to check out Care.com that I even knew where to look for help.  Care.com is a service that I have no hesitation endorsing here.  All it does is provide names – no guarantees.  I train, I check references, etc.  Of course.  But it has certainly changed my life.  Owen has become accustomed to the sitter thing by now.  He prefers what and who he is used to – he likes his routines – but our sitters haven’t seen anything outrageous lately. (Quick, Kathie! knock on wood!) 

So the interview process begins again.  Sitters come and go in our lives, and we enjoy getting to know them, getting to know their families, their dreams.   We share stories with each other.  And we share Owen.


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This photo from last summer is a great one for so many reasons, including its reference “American Gothic.” (That famous pitchfork and farmer painting by Grant Wood.)  Despite what it might look like though, the fact is that Owen is leaning on that pitchfork, and any lifting that happened with it afterward was a four handed operation.

Does that matter?

Owen is not what I would call a hard worker.  He’s described medically as “low tone.”  Low muscle-tone that is, meaning if you put a prop there, he will lean on it. If you try to get him to do something, it seems like there is no strength in his fingers.  He requires prompting for most jobs, from washing his hands to dressing himself – anything that isn’t his own idea.

And yet, when he is asked to, he can carry bags of groceries into the house, clear the dishes from the table, or carry a bag of dog food too heavy for his mom from point A to point B.  He can do that, and he will do that, and he will often kind of pirouette along the way.

I notice that Owen always comes away from instances of being required to help in a better mood, regardless of how much assistance was needed to get the job done.  One irony of his life is that although he does not (mostly) actively involve himself in the lives of people about him, and only rarely makes connections spontaneously, Owen loves to be involved, to be connected, to be required to help out.  I think he likes to be a part of things.

Oh yes – he also likes rewards.  I learned from Owen’s school therapists to ask, “What do you want to work for, Owen?”  Working for something, even the most trivial thing, is like the magic key.  The therapists sometimes they offered the plastic food in the toy bin, rather than real food.  Very observant.  Owen has always loved plastic about as much as I have disliked it.  He also is a chow hound though – the point is to find something he wants enough that it replaces that missing drive, something that will help him focus his attention and his attention.

I recently learned that in some circles today it is frowned on to use rewards to motivate an individual with special needs; it is considered demeaning, as if they were a doggie doing a trick.  In daycare centers, rewarding with food is not permitted.  This surprised and frustrated me, particularly since a law like that ties caregivers in knots, making their already difficult job harder.  In the wide world, EVERYONE works for rewards.  For cars, houses, power, for glamour, for food, for satisfaction in a hundred ways.  True, it’s important how any reward is offered, what kind of language and tone of voice are used.  But to disallow it?

Much as he loves his bits of plastic, Owen will also work to be reunited with them.  So, if I am feeling strong on an outing, rather than doing the whole job myself in the auto checkout line, worrying that he is wandering off, or stalking groceries in someone else’s cart, I can ask Owen to help bag up.  I set his plastic bits du jour in front of him, and tell him he can have them back when he is done.  How about you work for your bits Owee?  Exactly like real life, where we get our rewards for working, except that I have to draw the connections, and make it happen.

Owen doesn’t find it easy to load grocery bags, it’s a very non-specific job, he tends to zone out, hold the wrong side of the bag, and giggle.  But with a lot of prompting and re-directing he will slowly load a bag while I am zapping the bar codes at the other end of the conveyor belt.  I know that if we did more often, he would get used to the job, and accept it, and get better at it, as long as there was some reason for him to do so, like those terribly fascinating shards of plastic waiting for him to get it done.

And when he lifts that bag of groceries into the cart and gets his plastic bits back, with his mom’s “high five” and thanks, he seems pleased, connected, and, interestingly, calmer.  Which is his mom’s reward.


Trash Pickin’


Owen frequently goes out on trash-pick-up walks during his afternoons with sitter Kathie.  To be accurate, Owen goes out picking up trash all the time, wherever he is.  But Kathie is the only sitter who’s been willing to foster and guide his tendency to grab for any stray plastic cup or fluttering paper scrap, and make it something useful.  She arms him with a plastic bag, and they clean up the trails.  At the end, he gets to choose a piece for himself – the perfect reward!

Walking with Owen through our local Home Depot, me avoiding kiosks of  potted orchids etc. and him wandering away constantly, answering the siren call of tantalizing fragments of broken palette or plastic strapping, I feel certain “trash pick up” is a job he could love.  He has a sharp eye for things he cares about. I see him wearing protective gloves, the orange apron, and picking up every single forgotten bit from forgotten corners of the store and parking lot.  I see him being part of a working team.

I remember expressing to one of Owen’s teachers at St. Coletta School in D.C. my anxieties on the subject of adult employment – what to do after school.  How could anyone ever get Owen to do a job? She said the school had surprising success, that as with anyone else, you look for a job that matches the person’s isms and fetishes. Teaching the guy with a fantastic memorization skills who loves routine to sort mail at the post office.  Or hiring the slightly mentally slow, but very patient and dependable guy to be a live-in caregiver to supervise the dressing of one who is so highly distracted he can’t get dressed.  These two are real-life examples. It just takes time, she assured me.  Owen was easy-going but pretty education-resistant, but I haven’t given up.

Succeed, and our special populations will experience a life of connectedness to the larger world.  When and if we don’t succeed there is that other life, safely stowed in front of a television, out of sight under the fluorescent lights of a daycare program.  While it’s a wonderful thing to be warm and dry and fed — something that even 100 years ago (50?)someone like my Owen would not have experienced courtesy of his government — it is also marvelous to be occupied, to be part of a team with a common goal.

But there are problems with my vision of Owen as Maintenance Man.

Like the fact that he is likely to take a chance on that little brown thing being chocolate, that he isn’t too picky about a grubby piece of popcorn or second hand apple.  The education process would take time and cleverness, finding a reward more potent than the lure of the garbage itself.  I am sure that it can be done.  And Owen’s dad and I are more interested in an active life for him than a risk-free one. But given the safety conscious times we live in, so full of Americans ready to file suit and claim their fortunes, can I convince a program, an aide, or a prospective employer to take a chance?


“Everyone’s Favorite Guy—“

Crunching along side by side over the iced snow, Owen and I have our eyes fixed on our footing.  Our path is really no more than a trail of dog and human footprints, now a lumpy mess to walk on.  No sound except birds and the crunching.

Out of the blue Owen says, “Gas-ton.”

Seems like a cue, so I run with it.

Gastohnnn! I respond in the voice of the sidekick LeBoue, “you’ve got to pull yourself togeeeether!”  

Disney’s Beauty and the Beast is one of Owen’s favorites. Glancing over into his down-turned face, I am pleased to find him lit up with a grin.  That’s the only encouragement I need to bellow out into the frozen woods–

Gosh it disturbs me to see you, Gaston, 

Looking so down in the dumps!

Every guy here’d like to be you Gaston

Even when taking your lumps—“.

 The words, the characters, have been memorized without trouble over many years of supper-making to the tune of Disney movies.  We have a theater-loving crew here,all of them fond of costumes, accents, and ham.

But it’s easy to forget this spoonful of sugar.  All too easy for me to get cranky when dealing with Owen, to become instead plain old bossy and impatient mom.  Better rested, I remember Mary Poppin’s advice –  find that “element of fun” and snap! the job’s a game!  Well, no not really, but it is a whole lot more pleasant all the way around.  A spoonful of sugar beats a bowl of vinegar.

And the ham in me loves to make Owen wake up, tune in, listen and laugh.

“There’s no man in town as admired as you –

You’re everyone’s favorite guy.

Everyone’s awed and inspired by you,

And it’s not very hard to see why –!”

Maybe accents give voice to someone who always struggles to find his own. Sometimes Owen will quote to us from movies too, although these days it’s more likely to be a single word.  It is an imperfect communication device for us.  I have heard him growl, “Dee beeeeast.”  Not sure if this would mean that O. is remembering a scary thing (from movie? life?)  or telling us that he’s feeling pretty frustrated about something himself.  We all have a beast somewhere in there.

This past week I took Owen’s sister to check out college musical theater programs in Boston and Philadelphia – the reason this posting is so late.  The people in the arts communities we met were generally charming, open-energied individuals, people I can easily imagine knowing how to respond to Owen’s sort of person.  In fact I think it would be a beautiful friendship.  Makes me think that we should hook those two worlds up together more often.  Actors love to make people laugh, and the good ones are trained to be highly observant, read cues, and fill in the blanks.  That’s what it takes.