Month: May 2015

Sleep Like a Dog. Then Wake Up

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My friend Lori was writing this week about her son Ben and his sleepless night.  Usually Lori posts about marriage support (she and her husband John are marriage counselors) on her blog Caring for Marriage.  But a family member with special needs tends to make a pretty large impact on a marriage – so sometimes she posts about Ben too.  Or her other kids.

Maybe there is something in the air.  Owen and I have also been pretty sleepless, rendezvous-ing the last two nights in the kitchen around 3:30am.   I never know what wakes me (us), and I am inclined to blame Rascal my neurotic Australian Shepherd. (The Aussie is never confident about the safest place to sleep  – central location top of the stairs to protect his flock from all those terrible things out there? Or right next to mom’s bedside to be protected from all those terrible things out there?)

To be fair to the dog, guys like Owen and Ben commonly have disrupted sleep patterns.  It could be that some inner connection to Owen wakes me long before I physically hear him.  Or it could be years of experience. I have wondered, nights when I am lying there wide awake, what it is about.   But I tend to sleep lightly anyway, while my husband and the Boston Bulldog generally sleep like the dead.  Either way, by the time I heard crashes in the kitchen early this morning I had already moved the Aussie twice and lain awake (like the Aussie) worrying.  Maybe Owen had been doing that too.

Lori and I have in common that we aren’t finding it any easier to deal with broken sleep cheerfully in middle age.  She says she glares; I tend to fuss like Donald Duck in a fit. (You’ve seen the cartoon?)  However on this second night I found myself better able to consider things from Owen’s point of view rather than my own sleep-deprived rage.  Lori’s post gave me the gift of a sense of community.  Lori, Ben, Wystan, Owen, the neurotic Rascal, and who knows how many others out there are enduring this phenomenon together.

I shepherded Owen toward the digital kitchen clock and showed him the numbers “3:30” there.  Three is time to be in bed, I said.  I asked what did he want? was he thirsty? I sent him back upstairs with a glass of water.  I tucked him in.   And Owen seemed calmed.  He didn’t get up again, although I am not sure he slept.  Basically I found myself acknowledging through my tone of voice and peaceful manner that he has his own inner life and possibly his own reasons to be up.  Owen was probably surprised by this zen version of the nighttime encounter with mom.   I couldn’t have been so zen about it had I not read Lori’s musings earlier that day:

“…While I have plenty of phrases at my fingertips with which to express my side of Life with Ben, he does not. So he yells. His hurt is probably as legitimate as mine, his distress as deep.” 

Yeah.  Owen has always had times when he seems more frustrated, more restless, more zoned out, less communicative.  And lately it has been one of those one of those times.  Reflecting some more on what Lori writes, I am getting the strong impression that my job in Owen’s life is to be to a connector.  It’s not a job I am sure I want.  But I see what a difference it makes when someone is helping him meet people, helping him to make sense of sounds, images, smells, events (why are we here, now?) – helping decode all the incoming sensory experience, connect the dots, make sense of the chaos.  Owen becomes a different person the more I treat him like someone who understands things, but just needs support.

I suspect that there is a lot more going on in that curly head than me or most other people know.  But because of the potential I think is there, often my response is to get mad when Owen masks what I think (hope?) he is capable of.  Owen’s disability is an intellectual disability.  Helping him overcome it will never be straightforward or visible, like attaching a prosthesis to replace a missing limb.  The people who see potential in Owen are his prosthesis.  It is we, or no one,  who will to find a way to bridge the gap, and connect Owen to his world.

But...am I willing to give up my own agenda to do that?  

Better sleep on it.

Read more about Lori’s blog and how to receive it here – http://archive.aweber.com/marriagemoats/5E4Mv/h/Marriage_Moats_Pray_for_Ben.htm

Laughing in Church

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Owen curls forward on the church pew, close to touching his curly head to the back of the cotton dress shirt of the man in front of him. He is snarffing in the crook of his arm.  Despite the fact that he is stuffing his mouth into his sleeve, little noises are escaping.  He turns to look at me, trying with his whole body to repress the mirth that is crinkling his eyes up and shaking his body.

That’s new.  Owen frequently laughs in church.  What’s different today is that he truly has a case of the giggles, and he’s trying so hard to repress them.  His genuine, forbidden, over-spilling mirth is contagious, and I find myself (veteran that I am) fighting the upturning corners of my mouth.  I shake my head at him.  I wonder what the joke is.

I slid in next to Edward and the boys a little late this morning, since I brought snacks this week and got caught up in chatting in the church kitchen.  Our placement in the back of the center row of pews is Edward’s choice.  I can’t help worrying whether the family in the row ahead of us sat there after Edward and the boys came in, fully conscious of what they might be putting themselves through, or if they were there first and we joined them.  This particular family already puts up with a lot from Owen, since they happen to be our next door neighbors.  Personally, I believe in spreading the love around a little.  But Edward is cheerfully oblivious to these sorts of subtleties.  Lucky guy.

Owen’s noises are pretty famous at our church, after all these years.  People there knew him when he was a yappy, fussy baby, a paper crinkling toddler, and an occasional speaker.  More recently he’s been a plastic twister and snapper.  Thankfully, he seems to have moved through the recent phase of letting the most amazing belches fly in that quiet space. (Cross fingers and knock on wood, if that isn’t inconsistent.)  Every Sunday we would wonder, what is it about church? One Sunday during services last summer, Owen really let ‘er rip.  One of our friends said kindly afterward that he felt the relief from that belch himself from three rows back.

Owen is an innocent fellow.  I’m just not sure how innocent.  He has always been amused by being a pest, prone to chortling at other people’s irritation.  And innocent or not, I draw the line at his new tendency to lean over to one side the better to release the noxious gasses that are roiling in his gut.  Giggling mom and Owen exit church to find a seat in the foyer.  A complete calm falls over him there, and he sighs as we sit together in the chairs against the wall in the carpeted reception area. I can still hear the sermon, but I am distracted.  I keep wondering What was so funny? and is he doing it on purpose?

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Loot and Pillage

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IMG_0366The day of the Baltimore riots, I was supposed to be writing a post for this blog.  I couldn’t focus, and as you know, I missed posting that week altogether.  I couldn’t see a way to connect the life of Owen to the crisis there, and what was happening there was all my brain could hold.

In the days since that Monday I have watched and listened as people respond to an experience of chaos, most of us from the outside, most of us without firsthand experience of life in that part of Baltimore or the lives of those who swept through and looted it.  On FaceBook and in person, I have interacted with people who are offended or angry, who protest against or at least wonder about any helping such a set of losers that they would set fire to their own homes, as it were. I have read people speak dismissively of the angry, violent Baltimoreans as individuals so (dumb, violent, ignorant, thuggish) as to be beyond pity, and beyond help.  Isn’t a situation like that, and anyone who would act as irrationally as that, hopeless?

Last weekend, as I found Owen emptying his second super-sized bottle of Neutrogena dandruff shampoo into the sink, having already gotten in big trouble for emptying the first super-sized bottle about three days earlier, I had an acute sense of the hopelessness of the cycle we were in.  Hopelessness does not describe how Owen felt however, since that afternoon at the doggie park he tried persistently to get to other peoples’ bottles of water for their dogs, because he wanted to rip them up.  I drew him away several times, but finally just as we were leaving he charged over and poured a river of Mountain Dew out of a beautiful green bottle.  The dog owners sat watching him in uncertain silence.  Who does something like that? (We found four quarters in the car for Owen to give the poor shocked former owner of that Mountain Dew.)

It is not acceptable to pour out expensive bottles of shampoo.  And regardless of how much you want it, or how frustrated by not having it, it is not ok to grab someone else’s soda and pour out the contents on the ground.  Society is dependent on people NOT committing random destructive acts of this kind.

But Owen does insensitive, destructive, invasive things pretty regularly.  And day after day, week after week, year after year, Owen’s family can only redirect and educate him that he cannot do them.

The reader may be offended that I compare anything about my mentally handicapped son to those people who became angry and violent in Baltimore.  Certainly, the two are not the same.  The actions of a mentally handicapped child-man arise from a different intention, a different set of needs, and a very different level of intelligence.  Owen can barely be held responsible for his behaviors, and the adults and children who looted stores must be held accountable.

But still I found myself seeing a connection.   People who cannot speak, or feel themselves without a voice, will sometimes use strange and inappropriate ways of letting the world know how they feel.  It is our job, as receivers of a disruptive communication, to decide what to do with the incoming information, or to walk away.

As I shampooed Owen’s hair this morning with a sweet smelling shampoo product, I had to smile.  Why was it the two super-sized bottles of strong smelling tar shampoo that were pitched – and not this one? Owen really loves ALL bottles, but I don’t think he has ever gone for the gentle-smelling organic shampoo.  Could it be that the products that Owen dumps out are not usually the ones he likes to use?  Maybe a super-size number of shampoos with dandruff shampoo was more than Owen could bear, and he took matters into his own hands.

Or maybe I am reading this motive in.

But it’s a place to start.  I believe Owen will learn to communicate better, slowly, over time, with a lot of encouragement;  it is going to be a long process.  Frustrated as I get though I am not ready to consider his pillaging a hopeless dead end.  So far I have not taken off for California.  Like my brothers and sisters the looted and pillaged of Baltimore, I get out my broom to sweep up the streets.

Making and Unmaking Beds

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This April post was delayed a week.  My sincere apologies.

It is 5 am.  Because a thump noise or two woke me, I am stumbling down the dim-dark hall to see what’s up with Owen.  His door is shut, but light streams out from underneath it.  Well, good, at least he’s not in the kitchen.  Open the door, and there he is in all his glory, naked, seated on the rug, and sifting through the contents of the huge rolling drawer under his bed, stuffed with bits of his past and present treasures.

Owen generally strips in the mornings, and generally strips his bed as well, and the pile of bed linens and night clothing he throws off mounds up behind the headboard, wet, dry, and in-between all mixed together. And so most mornings start with a sorting and hanging-up-to-air-out ritual, with Owen helping.  After all these years, and much as he likes routine, Owen still seems uncertain what the criteria are for which thing goes where.  He hesitates, dangling a dipe nervously over the trash can, so I curb my impatience and direct him.  THESE things go to the laundry, THESE things to the trash, and THOSE things we hang up.  Owen hauls the wet away to the laundry, while I pull up the window shade to let rays of early sunshine beat in upon on the mattress and blankets.  Then we hurry on to the bath or shower.

I like things better at the other end of the day, when it’s time to make up beds again.  Laying down the mattress protector and tucking in a fresh, sweet smelling sheet is a job I never grow tired of, although my back does. It’s satisfying to build Owen a nest.  I wish other parts of providing for him were as straightforward as this one.

Before I know it, the cycle will begin again, the stripping and then washing, the airing, the drying, the remaking. Repetitive tasks are seen in our culture as tedious, but they can also be calming.  They have a rhythm and an inevitability, a cycle as continuous as ocean waves.  Perhaps my mind makes this association because of the recorded waves we play on Owen’s sound machine at night.  It’s as if my bed-making arms were the waves, rolling out, rolling in.   Pull, drag, dump;  pull, carry, hang;  pull, fold, and tuck…

As I settle Owen for the night, I am reminded of something I read once in a parent newsletter written by Jon Shestack, father of Dov, a rather famous young man with autism (Strange Son, by Portia Iverson).  Shestack described being uncomfortable with his profoundly disabled and agitated son when he was awake, but loving to sit with him and watch him sleep.   Then the troubled face was beautiful, the tense body relaxed.  Then, finally, he could hold his son in his arms.

There is Owen, all curled up in the covers of a freshly made bed, safe, warm, and relaxed.  He has had his prayers and his kisses.  I know he is happy – Owen loves to go to bed. For the moment, there is nothing more I “should” be doing to care for him. Well, ok, launder some socks and undies maybe.  But until he rips those sheets off again, his restless spirit has everything it needs in a nest of clean linen.