Brat

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All around me this month of November people are being grateful.  Gratefulness posts fill the Facebook feed. People are grateful in the newspaper. Soon it will be Thanksgiving, and people will take a pause on bad news and be grateful on the radio too. This gratefulness is very wearing.

I do not feel grateful. Although I know I should.

It is not yet three months since I was diagnosed with  bilateral breast cancer, and I have a lot to be grateful for.  My surgeon and staff were wonderful, and surgery went well. Lumpectomies, rather than full mastectomies. My surgeon is happy with the cosmetic result. So am I. Now it is November, and the prognosis is good. Friends and relatives call and write and show up in our family’s life to take care of the business that I can’t take care of myself. Despite being truly thankful for the help, I am not experiencing gratefulness in my heart. I see rather than feel the good fortune that surrounds me.

I am afraid.

I still cannot use my arms freely. I tire easily.

I wonder what the next treatments will bring.

Lately, I am a grumpy brat.

And unfortunately for my family, I have never been very good at “faking it.”  Honesty oozes out of me, like ripe cheese.

It’s taking far longer to recover from my surgery than I expected. I am not sure what I expected. The scar tissue in my underarms still pinches or burns if I lift things, move or twist. My lymph system hasn’t figured itself out yet, and sometimes my underarms are puffy with lymph fluid that can’t circulate properly. Three of my perfectly healthy lymph nodes in each armpit had to be removed to ascertain that they were cancer-free. I should be grateful that there were cancer-free, I know. But I just want my lymph nodes back. If this puffiness lingers or becomes extreme it’s called lymph-edema and requires medical attention. This is very frustrating to me me: shouldn’t there be a better way to tell if an organ is healthy or not, than by removing it from the body and chopping it up??  I was told about the possibility of lymphedema, but I didn’t think it would happen to me. I didn’t think breast cancer would happen to me. I still don’t really believe it is happening to me.  I picture being stuck like this, alive, yes, cancer free, but unable to DO anything. Alive, but not able to LIVE.

I am impatient, as you would expect an ungrateful brat to be. At least I am staying in character.

People come up to me to congratulate me on the latest good news, which is that I do not have to take chemotherapy. The results of my tumor biopsy and my blood work show that hormone therapy with tamoxifen will be enough to repel cancer, (unless it gives me cancer which is also a possibility). I want to be happy about not having full scale chemo, and when the doctor tells me, I am relieved, and I celebrate. But once the  bottle of white tablets is sitting on the kitchen counter, the idea of really taking this drug for 10 years fills me with dread. I am already dealing with fluid-filled arms and other medical side effects of the cure — how next will my body be altered? I remember how I felt at the beginning of this process, before every appointment  like hiding under our bed. Now I feel like climbing into my car and driving to Mexico.  I like my body the way it is. I do not want to be altered, even in an effort to save my life.

One night before I say prayers with Owen, I try refocusing my mind on some things I’m grateful for. The temperature is dropping, so I say I am grateful for a home in which to stay warm and cool and dry, no matter what the weather. I am grateful for yummy, interesting food to eat. I am grateful for nurturing care from family members and from friends — for meals and groceries arriving at our door. Loads of laundry washed and folded. For people who care.

Owen leans over and places his hand on my head as I speak these words aloud. I have to smile. It feels like a benediction. The hand of an angel boy on my head. A  mischievous and naughty angel boy  — capable of pilfering snacks from his nephew’s backpack and sneaking off with them — yet who still seems to act on behalf of better, gentler spirits than my own.

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Yesterday I poured out all my frustrations and negativity to my physical therapist Erica. It’s asking a lot from a PT, but she’s a game lady. Maybe I am not the first. Her response was to show me a diagram to explain how the lymph works, how it meshes with the capillaries and yet operates in an entirely different manner from blood. That really helped. I could see this troublesome lymph as beautiful, not stupid and lost, but clever.

And at that moment I made a decision. I will take my tamoxifen for my mom, I decided. I will do everything that imperfect medical science has to offer in her name. Rather than driving to Mexico or hiding under my bed, I can do this for her — because she didn’t make it in her fight against cancer, and I very probably will. So this afternoon, after a certain number of hours of avoidance, I faced down my white tablet of drugs beside the sink. It was surprising and nice to turn around and see her face just then, smiling at me from inside a frame on the kitchen counter. My mom, captured looking joyful and festive in her kitchen, preparing a turkey for a Thanksgiving long ago.

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Above my studio desk is tacked a pen and ink sketch of a woodland shoreline. “To Mother, With dearest love from Marianne”  reads the inscription at the bottom, a Christmas gift my mother to her own mother. When I look at it, I think of the bond that my mother and her mother shared, and the many letters that traveled between them. Below this, also tacked to my wall, a huge paper is filled with a child’s water color of a figure and the words MOM FREYA MOM FREYA.

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When my daughter painted that joyful pink and purple figure, its stick arms and fingers spread wide to give or receive a hug, was it an image of herself  or of her mother that she captured there?  The lines that form the boundaries of self-hood can blur. Who is who? What parts of me overlap with you, in a given moment, and what parts of you are responsible for me?

Misunderstanding, trampling the boundary between self and other seems part of the human experience. At least this is what I have witnessed in my own evolution as a human being. Not only between mother/father and child, but between lovers, in academia, in art, in business.  A mother takes over her child’s wedding, a father tries to turn his son or daughter into the athlete he never was, a surgeon is overbearing, a nurse bosses the patient in her care, a receptionist takes out her tooth pain on the next caller. Every day, in 100 ways, we crowd each other, mostly unintentionally. How easy it can be to forget that every person we meet has a unique thinking and a singular experience of reality.  Especially those we know the best and love most dearly.  We can lose track of our sacred separateness – until a clonk on the head reminds us how we transgress. But only in a heavenly marriage have two the option to become “one heart and lungs.” Any other time, try to start breathing for someone else and suffocation is the only possible result.

Dealing with a person who is mentally disabled, who cannot speak for himself,  invites the blurring of boundaries. As we head into winter I try to figure out: is Owen cold? or is it just that I am cold?  Owen’s way of showing that he is too hot is to be cranky until someone removes a layer. Why doesn’t he just remove a layer? Given his tendency to take a tour of the patio mid-Saturday-morning-bath, even on a recent 20 degree morning, his mother is inclined to guess that his sensory system does not work right. But those who do not speak or care for themselves, even those whose sensory systems do not relay accurate messages, can still have a great deal going on in their brains.  Wants, frustrations, fears. It is up to those caring for them to intuit needs and desires, guide behavior, and yet to respect their autonomy.

For Owen these past weeks of my recovery from surgery have been a trial I think.  It has been both amusing and frustrating to watch Owen and the bulldog Trum each misbehave as kind volunteers and helpers attempt to take them out for walks. Trum stops midwalk to turn and stare at the person at the other end of his leash, Owen stonewalls about leaving the house, or walking down the trail in the woods. Of course Owen stonewalls for me too, in normal life. There could be so many reasons for his uncoopertive behavior.  He could be voicing the eternal “NO!!!” but he could just have a stomach ache. I cannot take ownership of my child or my dog’s ungrateful behavior. I can only be grateful that there are friends willing to step in and try to shoulder the burden of running our family.

My job is to heal, something that is taking far longer than I ever expected.  As I try to resume my normal life the smallest things such as the way I snap the sheets when folding them, or swoosh the water down the drain after Owen’s bath, or chop the carrots is rough on my healing armpit muscles. I seem to keep re-injuring tissue not yet healed. Even small movements like typing and writing weary the scar tissues there. Why is it taking so long?  No one has suggested an answer. Maybe I am abnormal.  But I have no control over this either. My armpit muscles and myself share a lot of turf, but I cannot change them. I want them to hurry up, they seem to want me to slow waaaaay down.

When I pictured how our family would get through this challenge, I worried about how reactive Owen might be to the changes, and what form his acting-out may take, whether he would make horrible messes for unhappy people to clean up.  You would think that a woman who blogs under the banner of “embracing chaos” would be more chill about letting go — but it’s one thing to embrace your own chaos, and another to ask other people to do the same. I have watched people come and cook, and go buy groceries, and I have witnessed people come and take recalcitrant Owen for walks, and wash our laundry now for almost four weeks. It is humbling to allow those boundaries to be blurred, and to receive care. And it is hard.

We code events in life as good or bad, but how do we really know?  An unfortunate event makes unexpected growth or relationship possible that was not possible before, or without it. We want to think we know, but there is so much we do not understand. What seemed chaos falls into order.  What was intended well can be revealed to be destructive. The boundaries can blur.

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I remember a painful phone conversation I had with the author of this painting, in which she was able to tell me how much it angered and hurt when I said what I thought was the reason for her past adolescent behavior. Even though the event had happened years before, it felt so good to her to speak of it, to cry over that broken boundary between us, to ask how how could I presume to know what she herself was still figuring out?  How indeed.  Thankfully, boundaries blurred and broken, like aggravated muscle tissue can be healed, with time, with rest. With apology.

My mother struggled with boundaries, a tendency to try to manage what she could not manage, or to control what was not hers to control.  I remember her telling me that silver jewelry was for me, based not upon what I preferred to wear, but on my skin tone.  For a while I did wear only silver jewelry; it didn’t hurt me. She only wanted me to feel beautiful — missing the fact that I already did. In her last months on earth I remember watching her advise a family member how to dress better, what category she belonged to, based on her reading of the book Color Me Beautiful.  My 20 year old self was outraged and called her out on it in words I cannot remember. She did not deny it — but wept.

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Wonder where the heck I am coming from about a married pair becoming like one heart and lungs? It’s better explained here by Curtis at Off the Left Eye.

Gut Feeling

 

0905171530a~3What does Owen know? How can I possibly know guess? If I ask him he just turns away. Or smiles.

Last week, in the first days after I learned that I am going to be fighting breast cancer this fall, Owen began to Crank It Up.  He dumped and chopped bottles of laundry detergent and fabric softener.  He gathered all the bedroom and bathroom linens into a mountain in the laundry room, and then he did it again the bathroom. I kind of wondered, standing and feeling dwarfed by the piles of mess, what he knew. He knew something. He could tell that something was different. Maybe he could feel it. His Spidey senses were tingling? Whatever it was,  he didnt like it.

Anyway after about five days of mad chopping, dumping and peeing, at bedtime one evening Edward said, “Owen. Mom is going to be okay. She is going to go to the hospital, and then she going to come home again.”

Edward told me that Owen became very still after this. And then he looked right into his dad’s eyes. The words seemed to mean something to him.

When we went away for Labor Day weekend a few days later, to stay with family and friends in a set of rustic cabins beloved to Edward since his boyhood, in the cold, rainy woods of the Poconos without laundry, I wasn’t exactly sure this was a great idea for a way  to de-stress.  But it turned out that Edward knew by some kind of instinct. He was right. All three of us needed just stop thinking about what might be coming next.

And since none of we humans can really know what’s coming next, at any time, that’s a pretty good idea.

 

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Vacations End

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I am sipping a locally made blueberry kombucha in the Cocoon, Hawley PA,  and digesting a wonderful vacation. Owen has been at his Camp Loyaltown in the Catskills for ten days. I needed a vacation from him, and he may have needed one from me, by the end of June. I drove off into West Virgina to go camping with our youngest son Oskar, and left Edward to get Owen to his New York camp and join us later. (Edward was not sad to miss a camping outing.)

But what does my need of a vacation far from my special needs boy communicate to you, my dear readers? What is your take away?

I am digesting something at the end of this vacation – something involving the tension between privacy and inclusion. It is somehow connected to anger, but also to fear. It also has something to do with body fluids.

It’s complicated.

“Say something, I’m giving up on you…” plays over the coffee shop sound system as I reflect.  I felt like I was giving up on Owen, a couple of times those last June weeks. It had been a rough month or so. Whether babies or elders or those whose bodies or minds function a-typically, care of specially needy people is exhausting. Messy.

But — what to do about that mess? Does my need to get away suggest to you dear reader that Owen is an undesirable experience, an unlovable entity, someone I wish I didnt know? A person whose mess should be kept out of the stream of normal life? Should he be permitted to bother folks, to invade their space with his behaviors?

In the week before vacation, I found myself sitting outside the glamorous camping store REI in DC. Owen had disgraced himself in (on) the camping display.  We ran to the toilet, and took care of everything, except for the wet spot on the super duper camping mattress that he sat down on as he realized the flood was coming and he didn’t know how to tell me. I turned to find him looking surprised, gripping himself, pee pooling, and both of us helpless to anything to stop it. It’s embarrassing. It’s aggravating. I have no idea how it is for Owen. I do not handle these things well every time – I fuss. We had just been to the toilet before this. But some days are just like that for Owen.

What struck me was a disconnect between the colorful painted diagram on the ladies bathroom wall about pooping in the woods, and the manner of the shoppers and salespeople that day at REI. With the exception of one couple and their baby, people we met that day seemed uncomfortable with Owen, with his flapping plastic, and then his inappropriate urine. When I told the sales woman about our accident (I am unremediably honest) she seemed polite but rigid, nervous. The white around her irises kind of stood out. She was not exactly down with it, man.

Sitting safely outside at the metal tables and chairs, waiting for son Oskar to finish his purchases, I watched a lady with a dog on a leash enter the store, and felt bitter. To be fair, that dog probably has better bladder control than my son. And maybe it wasn’t as weird as it felt to me, in that moment. Doggy poop we can understand. But human beings that can’t control their the functions are frightening. We want an environment that we can keep perfect and beautiful and pure. Pure nature, uncontaminated by people who dont fit in.

Well, frankly, who wouldnt want all bladders and bowels controlled? I would bet a hundred dollars Owen would love to be able to control his. He tries to. The various mechanisms nervous system and muscular just dont always function right. And in spite of everything that he doesnt understand, he is highly aware of the humor in most crisis situation.

But what’s your take away, reader? What about the impact of those who do not conform on others? REI has its profit margin to consider and protect. I support profit margins, which allow businesses to exist at all, and employ people, and provide goods and services. I also believe in private property, even though I am in the care of someone who does not understand that concept.

As I watched the multi-colored mist rise above Niagara’s Horse Shoe Falls two nights ago, I reflected how to write about this, and found another thread to the story when I remembered my friend Sherry.

Sherry is the very put together and organized mother of Katie, a young lady with Rett Syndrome. Looking at Sherry, as I often do over Thursday Coffee, is an enjoyable experience. She matches. Her hair is beautifully cut, her colors and jewelry harmonize. She is generally an inspiration.

However, looking at Sherry you would probably never guess the steel she is made of. Sherry is totally calm in the face of poop. Life with Katie has given Sherry some difficult and hilarious poop stories, which she tells with just the right amount of humor and brevity. She knows, or perhaps Katie has taught her, the value of both beauty/ artifice, and of human-ness, in its beautiful and unbeautiful moments. She is a tenacious fighter for inclusion for her daughter, in schools, and in life. Regardless of what it takes, she has no intention of allowing her daughter to drift aside, isolated, out of the active stream of life. Sherry also knows when to take a break and go shopping.

“Every job has its bitch, Wys,” my high school friend Paige advised me years ago, explaining how she could work as a nurses’ assistant in elder care, emptying bed pans. “You just have to pick the bitch you can live with.” What about when the bitch picks you?  “Every job has its Bliss, if you can find it,” my homeopathic doctor advised me gently, as he helped me crest waves of frustration and rage during early years caring for and trying to understand Owen.

Hmm….Bliss. Owen.

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Water pounding on rock at Niagra Falls

Once when Owen was a drooly fellow with a constantly damp shirt front, we spent a Thanksgiving holiday with my sisters family. One of their friends arrived for a visit, and he kneeled on the rug telling us about the frustrating holiday morning he had had. Owen wandered downstairs, entered the room and before I could stop him, he bent over this vexed and kneeling stranger, and gave him a slobbery kiss on the temple.

I didnt know what to think. I grabbed Owen away, at least partly horrified. I apologized. I expected him to be tolerant but grossed out. The young father and husband ignored my embarrassment. He touched the wet spot on his forehead with awe. “I feel like I’ve been blessed,” he said.

What if every time a person like Owen interrupted my life or yours, we both saw this as a blessing? Can we imagine a messy, irritating, and inconvenient blessing? A message perhaps from a larger Energy Source, that permits us experiences from which we can grow? Or, if you prefer, what if everyone looked at each being (human, animal) they interacted with as someone by whom they may be blessed, if they were open to it. Where is the bliss in dealing with that cranky receptionist, the smelly old man ahead in line at CVS?  If your life or your home had been blessed by one of these individuals rearranging its contents — what is there to take from that?

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Lake Kaubashine, WI. Photo by Ann Buss

I am learning not to get in Owen’s way. I believe he has work to do, that has little or nothing to do with me and my embarrassment.

The centerpiece of this roadtrip vacation took Edward, Oskar, and me to northern Wisconsin for a clan reunion. During the week we sprinkled my Aunt Rachelle’s ashes on the hillside with ferns, birch, and pine. As we stood there I remembered my aunt telling the story of the autistic young man vacationing with his family next door who wandered over, fiddled with and disabled her elevator so that on arriving at the lake she could not get upstairs to go to bed. She spent the night in her wheelchair in the garage. No doubt this event brought up both anger and embarrassment at the time — depending which camp you were in — but I heard the digested version, which was full of humor. Owen shares his Great-Aunt Rachelle’s sense of the humor connected with crisis and upheaval. Maybe being wheelchair-bound herself gave my aunt (and uncle) perspective on the issue, who knows. But I so appreciated her laughter. Although phrased as a cautionary tale to me, mother of another such trouble maker, the subtext felt like “Oh well. It is upsetting. But crazy upsetting things happen.”  Warm salve for psychic wounds.

Like my son, my aunt was a complex person, a challenge to those who loved her, a colorful, multilayered personality. I will always be grateful for her telling of story of the boy who broke her elevator, for her laughter.

So, what is my take away as I get ready to reclaim my son from his camp, and take up my life as his care-taker, acknowledging both the bitch and the bliss of it?  Every experience has its bliss, if you can find it, and unlock it. And should some unasked-for force open your door and traipse in, rearranging your furniture, maybe you too are being blessed — in some slobbery, messy, complicated and inexplicable way?

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Photo by Natalie Striecher

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Testing, 1,2,3?

 

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Did you ever think what if the way you hear someone is all wrong? Noticed that the way you understood the actions or words of another person changes completely when you understand what they meant by them? What if you could never understand what someone else meant by what he said or did?  Well, actually…can you?

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I feel like Owen is testing me lately. Resisting. Resisting anything I want him to do. But it can be pretty hard to determine for sure what Owen’s behavior means, and his words are generally mysterious. When he seems to not want to sit down on the toilet, is it because he doesn’t need to go? Or is he fed up with people all the time directing his activities? I have several children letting me know that they need a little more or a lot more autonomy – is Owen feeling the same way too? Or am I reading into the situation? When he is laughing, does Owen’s irrepressible hee-hee-hee mean joy? disrespect? ridicule? Should I understand it as “Haha! I got away with it!” or as “Oh oh! I’m in trouble! What-will-she-do-now?”  Does it matter how I understand it? Should I just be grateful to have a child who can move, who can express emotions, and sometimes communicate with me in words?

Owen was laughing irrepressibly just yesterday as I cleaned poop off the floor…and the potty….and his under clothing… and the tub.  That laughter was the last straw for me.  Sometimes his laughing at inopportune moments brings up rage, but this time I just felt finished. I cleaned up the mess, and hoped my “cross wet duck” verbiage and a cold rinse would impress on Owen the aversiveness of this choice, versus just sitting down on the toilet right away the moment the urge strikes him. He has this idea that all his clothing should be in the laundry first

Then I left Owen drying en plein air in the bathroom and laid down flat on Bronwyn’s bedroom carpet. Luckily for me dear Bronwyn is home right now, post graduation, and she offered me the night off.  I took it. She took Owen for a walk, made him supper and put him to bed (of course he was jolly and happy, and beautifully behaved for her). Edward and I went out for dinner and a walk around Annapolis. I was grateful for the break, and felt relatively fresh this morning at 6:30 to start the day having Owen replace all the towels on the bathroom bars.

Owen was very happy this morning. He had lots to say, including  “I need a drink.” Using a pronoun like that is rare for him. But who knows what he meant by “a drink” anyway, since when I brought him the drink of water he took a taste and immediately dumped the rest into the sink. Was he hoping for ice water? Juice? Bourbon on the rocks?

In my short 53 years I have had conversations with typically functioning people that were much more upsetting and painful to me than dealing with Owen. Believe it or not. But dealing with Owen makes me wonder today, as I stare out of my studio window over the chicken coop roof, to the huge trees beyond that, and the drifting white clouds and blue sky beyond those, whether I understood correctly what those mentally typical people meant by the words they said. How do we see the world through another’s eyes?

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Naturally perhaps,  we talkers make assumptions all the time about what the non-talkers are feeling, thinking, wanting. We assume that people who do not speak do not think. Do not have opinions. Or, that their opinions do not matter.  A friend said to me the other day that all the special needs children of people she knows seem to have angry behaviors. This makes a lot of sense to me!

As Owen expresses his opinions, frustrations, or anger to me more and more these days, I have to find ways to make that ok, to allow him places and ways to express his feelings, even while I work to keep my manner with him free of anger and frustration. I feel relieved that we have now figured a way to stop him from getting into the kitchen or out the front door early in the morning. But Owen wants to get his own food, and choose when to walk and where, and search trash bins as desired. He has taken to hiding things from me, behind his back, or at the bottom of the trash can. (Earlier this week bottom of the trash can was his stash for those macadamia nuts that went missing – a very effective subterfuge.) I read these actions as a desire for more autonomy. And how do I explain to him why those doors are locked? or trash bins a toxic no-no??

But experience shows me that Owen is capable of understanding a lot more than he is able to express.  I must try to explain to him what is happening, and what I mean by what I do. Why I am speaking the way I am to him, or to the dog (he has let me know he doesn’t like it when I yell at the dog). It’s good to be called out, and held accountable, even non-verbally. Even when it seems unreasonable.

I must try to explain – and I must be still – and listen.

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Glory Day

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I knew there was no point in leaving the collards in the orange and purple bag. I took them out as soon as I got home, and squashed the greens for the chickens into two zip-lock bags. I tucked those zip-lock bags into the door of the refrigerator.  And I tied the old shoestring around the fridge door handles in three square knots.

And I left the beloved cello bag for Owen to find

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After this generous act, I was a little stung to discover the organic baby tomatoes demolished the empty box put back, pointlessly hiding on the stack of plates. And, in a different cupboard, half a chewed pear sitting on top of the box of pears I thought I had hidden!

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It’s true, I knew that leaving the Glory Collards bag in Owen’s drawer I had removed about half the fun from the whole thing. A good part of the incentive seems be the sneaking behind my back, or catching the fridge open, or getting the old shoestring’s 3 square knots untied (Mom: is this possible?!), and escaping quickly.  Otherwise, why not just ask?  I do feed this kid. All the time. One day I found him and stopped him with the green plastic box of mushrooms three separate times, until he finally got them both, (Does he really know how to untie 3 square knots?! He must know how to untie 3 square knots!!) and emptied the mushrooms into the bathroom trash basket, no doubt while I was outside deep breathing in the garden. You know, perhaps, those scenes between the gibbering twitching Chief Inspector and Clouseau in The Pink Panther movies? That’s me, looking for my missing mushrooms, frothing at the mouth.

In a three week period during which I have multiple events to run (because I volunteered for them), and Edward has several trips, and we were trying to rent an apartment, and to get the gardens planted and figure out what to do with the broody hen (read more about the Simons Gardens at suburban growing.com) it is I guess not surprising that Owen should become really, really difficult. Spring is busy. But I think it also has a lot to do with what he has been finding in the trash cans.

That is to say, what he has been eating.

I will never forget, as an undergrad at Temple University in the 80s, in the darkened and packed auditorium, the psych lecture on Pavlov and his salivating dogs. And more pertinently the mice and VARIABLE REINFORCEMENT.  How could the professor know how many times one student would reflect upon his lecture, over years of raising children and dogs? Variable reinforcement, more effective than consistent reinforcement.  We learned in that darkened auditorium that if mice were given a reward every time they performed a behavior, this was not nearly as powerful as if they only sometimes got the reward. The power of uncertainty — will there?… or will there not?… be something GOOD at the bottom of the trash can?? — is something that my son Owen has manifested beautifully this past couple weeks.

If, for example, one day well after Easter you happen to see something lurking under a few layers in the kitchen trash can, as you lean over the kitchen gate and flip the lid up super quick before anyone can stop you —  and that thing turns out to be a cracker – OR a bag of assorted leftover crackers! – which Mom foolishly only partially concealed – WELL! who knows what yummy food source might be found under layers of garbage at any moment! in any trash receptacle!

Owen’s prescience is amazing. First he scoped out those crackers in the kitchen trash can. Then he dug up a bag of gluten free bread out of the back bottom refrigerator drawer and ate 4 slices, satiating and also further firing his awakened carbohydrate cravings. Days later he struck it rich in my bedroom trash basket where I had put (underneath stuff) the aged Halloween popcorn balls from G’mom, cached for absent college children at their request, rediscovered too late. I knew it was a little risky, but figured what are the chances of Owen looking into my bedroom trash basket? There’s never anything good in there.  On any other day it has nothing in it but dead Kleenex and scrunched up dry cleaning bags. (Dry cleaning bags are not cool plastic – Owen has zero interest in them.) Of course I forgot they were there at all. Until Owen’s archaeological dig left the spoils floating on top.

So, his system wrecked on carbs and then hard sugar, Owen became irritable, unresponsive, unable to understand basic instructions, or to speak, incontinent, surly, and just generally difficult. And mom, try as she might to start calm and positive, wound up frothing.  Being bought off with a orange and purple cellophane Glory Days collards bag at that point is just an insulting bribe. He took it of course – and shredded it – but he didn’t enjoy it. Everything we had to do became a struggle —  walks, supper, getting dressed, getting dressed again, getting out the door, coming to the table, staying at the table, pulling up a sock — a long, drawn out, mulish Idon’wanna until my nerves were raw.

Times like this, I understand completely why parents of kids with behaviors take off into the sunset. I start to have visions of climbing on a bus going south and west til my money runs out.  Yeah right. But it was really, really good to see Edward back home from his second trip Tuesday night, and to have Kathie take Owen all Wednesday afternoon.  And when Owen came home from his Wednesday afternoon with Kathie he came right to me in the kitchen where I was making soup and laid his head on me and gave me an Owee hug. Spontaneously.  Very unusual.

And in that hug I heard or felt this “I am sorry for being such a butt head this past week.  I am glad you are still here. I forgive you for being so angry at me.  I am not angry at you any more. Also, I am really glad you are making my supper, instead of working on a project somewhere else. It smells good.”   

Huh. Did that just happen?

Something to treasure. Even better than a cellophane bag.  Glory be.

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Pears, incognito

 

 

Easter Weekend With a Carrot Percussionist

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Where should I start to write this week? SUCH a wealth of material has been accumulating, and it drifts across my brain now, like plastic bag shards in spring breezes.

Shall I tell the story of the turmeric? The turmeric in it’s cellophane bag from the health food store, that cellophane bag that is so irresistible? The deep orange-y yellow turmeric powder, still staining Owen’s bathroom cupboard and basket whence it was thrown and where it lay too long in deep yellow drifts.  I think I wanted to believe it would go away if I did not acknowledge it’s presence, puffing out in little breathy piles onto the bathroom grout and the bathroom mat (I think I have now removed all yellow traces from the white curtains which still hang over the banister in the hallway waiting ironing). ((And yes Owen, I DID notice the circle of teeth mark you left in the center of one there.))

Or the continuing saga of nudity – removal of one’s clothes is never enough these days in preparation for whatever is going to be happening in the bathroom. Having stripped, Owen must take everything down the hall to the laundry, his clothes and the towels — and then those annoying bathmats — and then, for good measure, the bathroom stool.  Then in a spare, tiled space he can commence whatever business is at hand. Unless he couldn’t quite hold it in that long.

Perhaps it isn’t surprising that I have ranted lately as we walk in the afternoons, or try to walk – first at Owen and then the dogs, I don’t feel particular. There are times when I cannot take it when Owen simply won’t walk, wont walk, won’t WALKoh forgoodnesssakeswouldyouhurryupwhatareweouthereforifwearentgoingtomove?! and instead stands paused, staring into space. I always wonder how much the sounds of my frustration invade neighbors yards and homes. I stop, and look back impatiently, then find myself smiling, watching the familiar push-me-pull-you of Owen and Rascal walking together: Owen paused and yanking backward to dig a small bit of trash out of the dirt while the dog strains forward, and then Owen straining forward while the dog pulls back, pausing to go pee again.

One afternoon, my usual walk frustration (just building up during the effort to get Owen off the property and onto the trail) melts away in the face of a huge smile that Owen gives me. He turns – and looks me in the eye and pauses to make sure he has my attention. He pauses also to locate the desired words. Then “Moose on the table!” he says with great emphasis. It is a morph of unknown origins, intended clearly to tell me something very important. But I don’t know what that is, so I say, “Oh that naughty moose!” and this seems to please him very much. And him being happy and responsive always lightens my load, and brings me back to the most important things.

But the best story is the most recent, and I notice it seems to follow the same theme. At the end of a busy and lovely Easter weekend involving many treats and multiple changes of clothing for Owen, was my daughter Freya’s jazz recital for her program at Temple University on Easter Monday. Having looked at the cost of having Owen cared for during that afternoon and evening (10 hrs x $20 per hour = Ouch), we had decided to just bring him along and maybe get a college student to hang out with him, in the hall…?   My efforts to locate a sitter in Philly led nowhere  – so we fell back to our usual mode, take Owee, and hope for the best. His dad packed him two boxes of carrot sticks, his mother multiple changes of clothing, and we started up I95. We changed at the border – no accidents. Of course we were tight on time, and located a parking lot just before the concert, jogged to the building, and were guided through the warren of hallways by a kindly music student, taking our seats in Klein Recital Hall just in time. Freya greeted us and got us a program.

Owen had to like the concert hall. It was petite, with cozy turmeric colored walls, and dimly lit. He looked a bit surprised, and sat curled forward checking things out with sideways looks, armed to entertain himself with scissors (somehow the security guard let this slide – ah art school!) and a fabric bag of plastic shards.  But what he really wanted was the second plastic box of carrots he knew were in my purse. I held him off the carrots however, since we had an hour of music to make it through.

When the pianist, bass viol and percussionist opened with an original jazz composition “Monkesque,” Owen was surprised again – he stopped moving – and his body language said “listening.” The composer did all kinds of different things on his bass viol, creating unusual rich sounds. Owen has a great sense of humor about things happening in unusual or surprising ways – and so do jazz musicians. This includes Owen’s sister Freya. When she rose for her turn to perform we learned that she also was going to sing an original composition, a piece titled “Unrequited Love: Why Coco Channel?”  mourning the unaffectionate nature of her hamster, Coco Channel. How come you do my like you do? It was a great song, and a fun performance, Freya smiling out at us, relaxed and musical.

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But from my seat in row four or so, next to the wriggly guy with a pile of plastic hunks under his chair, there was the added element not everyone got to appreciate. Finally allowed to open his box of snack carrots, Owen accompanied his sisters jazz piece with crunching.  Jazz, with carrot stick percussion. I wish I could have captured it for you my faithful readers, but this was one of those moment to just appreciate. The rightness and the wrongness of things, the appropriate and the inappropriate, meeting at the street corner, and shaking hands. Carrot crunching, hamsters, unrequited love.

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Owen appreciates jazz, carrot stick in hand

 

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