Birthday Hello

0812172049
Here comes the birthday blueberry crisp!

Today is Owen’s birthday. Most of our kids came home last weekend to celebrate August birthdays. That would be Owen and me, both Leos. We celebrated a little early this year. Twenty four years ago, on August 17th, Owen was my best present for my 30th birthday. So on Saturday Bronwyn and Oskar put up balloons and streamers, and Freya and her boyfriend Keir made blueberry crisp. Edward grilled lamb, and Daric brought some gorgeous gerbera daisies and also a very nice bottle of rye whiskey from his wife Jamie. The meal was the perfect birthday present for me: dinner table conversation is my favorite form of social life, and listening to the Simons children tell their stories, banter, tease, and support each other warms my heart. I can’t tell, but I think Owen may feel the same.

It’s my new custom is to decorate the fridge with photos in honor of the family birthday person. During the week before, I had dredged up sweet and funny photos of Owen from babyhood to now.  Coming into contact with his childhood innocence was powerful – and a big help I found as I tried to keep patience during some of our not-walks last week. But looking at old photos of my kids has its drawbacks. As delightful as it is to remember the childhood beings you may have forgotten, seeing them again captured in ink or pixels brings a sharp awareness of things lost. You will never go back, to those little people, and although you may look and remember, you will never know them (hear them, squeeze them, smell them) again.

IMG_1565

I find the subtext of any event in August these days is wistfulness for the end of holidays, and for coming farewells. I used to look forward to the start of school, buying supplies with the kids, sharing their excitement at new classes, and anticipating more peaceful moments for myself. And before that, September meant new beginnings for myself, the discovery  of new worlds that my new classes meant.  Now it means deep breathing. Practicing not being clingy, learning the careless smile when tears threaten. Saying goodbye gracefully as the kids move farther and farther afield. Emotional honesty is not a boon in every arena, Wystan dear.

Learning to say goodbye is a critically important skill that begins with babies and peek-a-boo.  I have had a lot of opportunity to practice it, from the time that my family moved away from Chicago and a huge extended family to a little college town in Pennsylvania. I still remember sitting on my Grandma Mary’s lap a last time before we left, her arms around me in the moonlight out in the garden (for some reason my folks thought it would be easier to drive through the night, something they never repeated). I wondered to my grandma why her eyes were so wet behind her glasses. I can’t remember what she told her seven year old grand-daughter, who was only excited about the adventure ahead.

Frequent practice does not seem to have improved my aptitude. Somehow I don’t think that’s how it works. As I prepared to bid farewell to my girls on Sunday, I thought of my Grandma Lucy and how she greeted us every time we returned to her home with “Rabbit’s friends and relations!” (Grandma Lucy was a fan of Milne’s Winnie the Pooh), and how at every parting she cried. We made that journey, with joy and tears, to and from Chicago many, many times. Owen didn’t get to meet Grandma Lucy. But he did make the acquaintance of his great-Grandma Mary, who was pretty sprightly most of the way to 97. How many hellos and goodbyes, in that near century of hers.

This weekend Oskar ,our youngest, heads off to his first year of college. Then there will be three of us for dinner, but since our kids did high school boarding school away, we learned last year to manage and enjoy. I have a full and rich life of my own. It’s just the actual facing the loss, the change happening, that is so painful.

“Nostalgia is a trap!” my mother said once. And she was too right. Now is the only time that we have, that is real.  Not those old photos of chubby cheeks, or boxes of little clothes, or those sweet and funny sayings lisped and scrawled down and pinned to the refrigerator. This moment, today, and what you decide to do with it, is alive.  And in truth I wouldn’t change out any of my kids’ future growth for a return to childhood sweetness — not even with Owen. It is too important to see where they are going, and how truly human they can become. Human beings are born to mothers every day, but truly human beings emerge only through the fires and floods of experience, and by learning to love something greater than oneself and one’s own agenda. Owen may be on his own special trajectory, but he too can learn, if ever so slowly.

This August however a new chapter unfolds for Edward and myself, that may change once again the way I feel about August.  Call it the natural reward for raising and releasing children, not to mention trying to become more truly human myself.  Or the best of birthday presents. If all goes well, and my Owen sitter works out, I will have the privilege of holding a grand-daughter out in Denver, in this our shared birthday month. I will snuggle her, and try to get acquainted, and sing to her my hopes for her future, before we say goodbye. I will probably cry, as my grandmothers did.  Joy, loss, growth, joy. Time never stands still.

0816171311b

 

.

 

 

Vacations End

0712171338_HDR

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.

0710171830_HDR
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?

FB_IMG_1499881663054
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?

FB_IMG_1499881686804
Photo by Natalie Striecher

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Testing, 1,2,3?

 

File_000 (20)

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?

File_000 (16)

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?

File_000 (17)

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.

File_001 (1)

 

Breaking Ground

download (8)
Pawpaws at Forested

Something exciting happened in the world last June.

It wasn’t loud or fancy. Nor noticed by many people.  Even those involved were mostly hot, itchy, and felt harassed — but then most births are not comfortable experiences.  And this was a birth in a garden.

img_3760
Lincoln Smith, Tia Bazemore, Kevin Jones, and Ben Friton  in the fields of Forested LLC            June 2016

Last June, Tia Bazemore supervisor of programs at Owen’s adult daycare, New Horizons Supported Services Inc (NHSSI) came with her associate Kevin Jones to check out Forested LLC, a teaching garden in Mitchellville, Maryland.  Tia and Kevin came to see if the garden might be an opportunity for the special needs folks under their care to engage with nature, to volunteer in and be a part of a new community. Tia and Kevin met Forested’s creator, Lincoln Smith, and his right hand man Ben Friton. I was there too. I claim to be the spark that got it started.

After that June day, all last summer and into the fall, a small group of folks came from NHSSI on Wednesdays to help out, and to taste what forest gardening is all about.

img_4991
Some of the mulching team from New Horizons

A “forest garden” is a sustainable way to grow food that works within a forest ecosystem. Rather than planting and replanting annuals that die each winter, forest garden systems rely on perennial plants and trees. There are many plants for food that are unknown to most American eaters, including me.  Lincoln was open to having people from New Horizons come out and help and learn in his gardens, when I approached him with the idea last spring. But he did not anticipate how much mulch his new friends from New Horizons could move!

Largely due to the efforts of Kevin Jones,  who not only drove them but worked side by side with a pitchfork, the NHSSI volunteers blanketed a surprising number of trees and shrubs with mulch, shoveling and dumping wheel barrows-full of wood chips. They also were offered fruit or vegetables grown at Forested to taste: tomatoes, “ugly apples,” lemon grass, or plums. Homegrown looks different than stuff at the grocery store. In the fall they planted a small bed of garlic.

“I like to get them out from behind their technology, and into nature, ” explains Kevin, when I asked what motivated him. “I’d like them to learn about farming.”

forested

How many gardening-type jobs can the individuals from New Horizons handle? We don’t know. So much is still to figure out. This was just a humble little connection between an adult day care organization and a local business.  Only once a week, for a few hours.  But I believe it was the beginning of something good.

img_4994
Rightly proud of their work – July

And still humble and simple as it was, this opportunity could not have happened without the passionate interest of five people.   Lincoln is passionate about the ecosystem that feeds him, and Ben about helping people around the world grow their own food (check out his website CanYaLove), and special needs folks. Tia Bazemore loves the idea of her people getting out into the sun, and also letting people see that they can help. Kevin loves learning about how plants make food himself, and without his drive to make sure this group got a van, the whole thing would have fallen apart. I of course am pretty passionate about my boy’s quality of life. As the spark, the idea generator, my job was bugging people: starting it, and restarting it, and smoothing the channels of communication, standing in for Lincoln or Ben when they couldn’t be there, bringing water and fruit and veggie snacks to share under the canopy when our work was done. It took all five of us. So I don’t mean to say “this is easy.”  I mean to say “this is important.”

Owen is one of the group that comes every Wednesday, with his one to one aide to keep him out of trouble.  He is not particularly drawn to gardening. But he can haul mulch, and he feels good when he has done something useful, when he has been (or been made to be) part of a team. Get out into the sunshine and sweat a little. Unwilling as Owen is, he still can make a contribution.  And the others on the team of volunteers are truly volunteers – they want to be there. They take satisfaction in that work. And that is exactly the point of the project.

2829

2828
Planting garlic with the guys in October

 

As Ms. Tia says, “It’s important to me for people to see that these folks from New Horizons do not just need help – they can be helpers. They can be part of the solution.”

How many systems and how many ways can we find for those we call challenged to be contributors?  It seems obvious to me that a life of usefulness as an integral member the community is beneficial to the individual, outweighing the value of even a safe and cared-for, but segregated existence. But how do society and the workplace benefit by the presence that someone with an intellectual disability (for example) brings to it, something apart from the skills each brings like any other human? There is something – parents (tired as they are) know it.  Those who love working with special needs folks know this well, and it is what they love. While hard to quantify, its presence is palpable. If you have a person with special needs in your life, and you imagine that person removed from your life, then you can see it. What is “it”? I would call this presence a sphere of innocence.

Exposure to all kinds of people is a valuable part of ongoing adult education. But regular contact with the sphere of innocence is part of education of the spirit. Regular contact with a person who is “different” can slow us down, might cause us to reflect, maybe re-think our over-full agendas. How would you measure that? Longer life? Less cancer?

Says Lincoln “The people [from New Horizons] are such a delight to be around. Cheerful, upbeat, willing.  It’s just nice being around their spirit – their energy.”

And Ben put it into words this way: “With New Horizons folks joy is expressed in their whole bodies and faces. For me, as someone who does the grunt work everyday, their joy in contributing [to what we are doing] is a delight. It brings me joy.”

How do you value joy — or positive human energy?  Truly, it’s presence hard to quantify on a balance sheet. But then again who wouldn’t want it?

IMG_4998

Post Script – I would like to get the names of these volunteers from NHSSI under these photos – as soon as I can get that info I will add it! But it’s time to get this article published!!

 

 

 

 

 

 

 

 

Glory Day

File_000 (44)

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

File_003 (4)

 

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!

File_001 (12)

 

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.

File_002 (8)
Pears, incognito

 

 

Easter Weekend With a Carrot Percussionist

IMG_0722

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.

IMG_20170417_180033

 

 

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.

File_002 (5)
Owen appreciates jazz, carrot stick in hand

 

File_000 (29)

 

 

Thank You, Planet Fitness

This is actually a post begun last year. I came across it just now, and was shamed by the optimism. Everything I wrote here is true. It just hasn’t happened for a while. By now everyone knows Owen loves plastic and trash collecting walks….

IMG_2915

But what about when the great outdoors just doesn’t cooperate for walking? I can’t let the winter season pass without paying tribute to one organization that helps Owen keep walking no matter what the weather brings us.  Our gym.

IMG_2051
Owen enjoying the treadmill – 
IMG_2054.JPG
He seems happier at a slight incline and 1.8 mph

Owen has his own membership, and can take a guest.  The manager and staff of Planet fitness in Bowie have come to know him, and to know us through him, as people tend to do. After he walks for his 20-30 minutes, rumpling a piece of plastic (the plastic is important!) he is done.  I might be able to get him to sit down on a weight bench and wait for me to do my shoulder exercises. Maybe.  Then we might wander a few doors up to My Organic Market to select a treat. (Artfully dodging the Tootsie Roll bucket on the Planet Fitness counter.)

 

I’m not sure why Owen is willing to walk like this on a treadmill for me, but I’m glad he is.

IMG_3001
Requisite plastic horde

The biggest challenge Owen has with using the gym is…us. Neither Edward nor I like going to the gym too much. We would rather work outside even in bad weather, which means Owen stands ignored (and frozen) while we rake or prune or weed or plant. And since dogs get left out of the gym equation, we are more likely to take that walk – even though Owen isn’t into it. But as I read this old post of mine, and look at the pictures, I am reminded of how valuable this gym thing is for Owen. How good to walk along and have me or dad standing there saying bravo.

He could use some more of that these days. Owen has been grumpy and difficult lately. He seems kind of explosive.  I think the problem may be that the kindly man who is Owen’s one-to-one aide at his day program is not a good match. It is hard to say why these things happen – but individuals with disabilities are individuals, with tastes. Sometimes the chemistry just isn’t there.

When Owen’s aide tries taking him to the gym, it doesn’t work at all. Owen ran away and ate Tootsie Rolls, the man wrote in the communication book, twice, he said. Owen came home with a big red ring of irritated skin around his eye. Owen walks nicely for me, and his dad, and for his sitter Kathie. It seems that being directed by this kindly older gentleman just irritates Owen. It may be mutual. Everyday lately he seems to come home pricklier and pricklier. What is it, I wonder? There so many possibilities. Is he bored? Not sleeping well? Constipated? Bothered by the weird winter? Allergies? Gut hurting from more garbage food grabbed on the sly? Luckily for Owen, the supervisors of his program are already on the hunt for a new one-to-one aide. And Owen’s mom has not given up on finding some kind of employment for him – everyone is happier when they have a job they have to do.

Meanwhile, maybe we need to get back to the gym. Movement can help most things feel better.

 

IMG_3002

Yeah — Owen knows how to use the Big Red Stop Button too. Nothing like being in control of your own environment. Bravo Owen.

And thanks, Planet Fitness Bowie, for YOUR support and encouragement —

IMG_3006

We all need all the help we can get!

 

 

Apparently

 

IMG_5905

The night before I was to leave I woke at 3am, three hours too early. I wondered why. And wondered. Did Owen maybe need me?

A trip down the chilly hall revealed Owen up on his elbows in bed, also wide awake. Who knows why. Who knows why I knew, why I felt the psychic call (did I?) for help. Do we do it to each other?

Three hours it was bathtime, and Owen and I were both up again. Then away I drove.

To be a caregiver — whether of an infant, or a sick child, a person with intellectual disability, or one with an aging body, or a friend in need — is to allow yourself to be connected. Plugged in. To respond to need at unreasonable times of day, without rancor.  Or preferably without rancor. Simply to respond, to do what needs to be done. This is pretty great spiritual practice for an independent, impatient so-in-so like me.

For the past days I have been out of reach of my Owee radar. I am sleeping very well every night. My daughter is filling my place and her father’s place, continuing her own lessons in caregiving that began early. Owen loves to have his siblings home, particularly when they are paying attention to him. I’m sure that is why I can relax so deeply.  In that sense my Owee-meter is still at work – I know he’s happy.

Freya texts me that he has been speaking in his gravelly deep voice, making remarks on a theme:

“A giant ogre!”

“Fee Fie Foe Fum”

“Cookie robots!”

Even though at home it’s cold, an ice storm in fact, and I learn they have lost electric power, I feel confident Freya has reserves of humor and creativity to manage what she is thrown.  For a few days anyway…although as I write these words down, I can feel my anxiety rising…it helps to remember that Edward will get back home before me.

When I am with Owen, my job as his  caregiver is to tune in. When away, my job is to tune out. To set down the burden of him for a while. To let go — to forget him in fact. Both things are important, in their season…each difficult. Apparently.

IMG_6139
Owen out for dinner – four forkfuls is better than one

 

 

 

 

 

Egg Hunt – Raw Version

File_000 (2).jpeg

The weather in Maryland has been playing like it’s April Fools in February. Will we have summer today — or winter?  –or spring? Anybody’s guess. And maybe Owen is playing along, kind of restless and antic.

During the February week that Owen’s mom (alias me) spent sick with a relentless cold virus, things got a little more chaotic in a world always teetering on the edge of the abyss.

file_000-1

Plastic piles in drifts accumulated around the furniture, an in corners of all rooms. Kale mounds spontaneously erupted on the bathroom floor.

file_001-2

Or so it seemed to mom, as she dragged herself from the chair at the breakfast table to her bed again, feeling buried in detritus but just not really caring that much. Owen’s dad took wonderful care of him, as always, and waited patiently for things to normalize. Instead he got the virus. So maybe it’s understandable that Owen is a little more squirrely than usual. Or blame it on these radically changing temperatures. Owen likes predictable. So do I.

Thankfully Owen is kind of predictable, in a chaotic sort of way. Which is why, when things did begin to normalize (?) and I came into the kitchen to clean up one night, after a speedy post-grocery-shopping-with-Owen supper of omelettes, and couldn’t locate the box of eggs – the brand new bulk box of Pete and Gerry’s – I was worried. I saw that I should have known better. In a moment of foolish practicality, I had purchased those 18 eggs in the plastic box. In another moment of wooziness, I had gone to the toilet without putting the eggs away, tying up the fridge, and locking up the kitchen. Drat. And drat Pete and Gerry anyway for using a plastic box. Gone AWAL.

The beauty of being sick for a week, however, is that you get lots of time to sleep. Although end-of-day weary, my sense of humor was intact. Feeling calm, I communicated the problem to my son.

“Owen,” I said, “Where are the eggs?

Owen presented a shuttered expression.

Owen. We really, really need to find the eggs!”

No eggs in the fridge veggie drawers where I have found eggs rolling before in similar situations. No eggs in Owen’s collection-of-stuff drawer in the family room. But in the green basket beside the drawer I unearthed hunks of plastic egg crate with a telltale label chopped and mixed into the melange.

file_001

I took Owen’s hands. “Owen, where did you put the eggs that were in the box?” I peered into his face, trying to keep my mind off of leaking albumen soaking into upholstery. “I need to find those eggs.”

He looked off away, into space, brow furrowed, mouth slack. For Owen, the shop closes down about 9pm, and after that the processing of language will be even harder than it always is.  He looked as though deep thinking were required – Eggs? hmmm. Eggs. Do I know Eggs? It seemed as though he would have liked to help me…on the other hand, he could have been really worried about what was on his horizon, when I found those eggs. What do I know. Either way, the circuits were clogged.

I took his hand, and modeled “search for” as we moved through the house. No eggs on the couch, good — and upstairs no eggs on Owen’s bed. Glory Days kale that had the misfortune to be packaged in a glamorous sunrise orange and purple bag wound up in a huge heap on Owen’s bed not too long ago.

That was my last best guess. “Owen! —–!

But oh – wait — one more idea.  Ahhhhh!

file_002

Found. How appropriate to end an egg hunt in a basket.

I required O to help lift the leaking shells into a convenient bucket, although he wasn’t happy about those goopy egg whites

file_004-2

The bucket had to be pretty clean I figured, since I usually use it for bathtime dousing. From there into a pot of hot water for the eggs, and into a newly made bed for Owen.

Edward returned from his evening meeting to find a kitchen full of groceries and a pot of hardboiled eggs — already cracked.

Making Limeade

file_000-11

I promise this is not an attempt to rip off Beyonce.  If she knew Owen, she I think she would understand. She looks like that kind of woman. Owen REALLY loves lemons, as you may or may not know. ALL kinds of lemons —

But he’ll take a lime ANY TIME–

file_002

 

–even if it zaps him back!

file_005

file_006

 

 

 

 

 

 

 

 

 

 

 

 

 

file_007

I have the flu this week, which makes everything harder especially cooking. No, maybe especially running after an Owen who keeps running out the front door is harder.  Particularly when I can’t find him at the recycling bin – and then he emerges from our renters’ door carrying a stolen soda bottle!!  Ooooh noooo Owen! Very embarrassing. Yep, that’s definitely more stressful…

Best to share the limes.

file_004

 

 

Post Script:

Happy Day-After Valentines to all my readers!   Please take the time this month to love me a little: drop me a message about what YOU like best in the embracingchaos.net posts. What would you like to see more of?

file_000-13
Owen’s Valentines Carrot Cake

 

Send your comments THIS FEBRUARY to wystansimons@gmail.com, and in thanks I will email to you my brand new, just invented RECIPE for this delicious Carrot Cake made for Owen and his dad (oh yeah – and me). Yep, it’s “paleo” and yep it’s very moist and very good. (Ok, true, the icing is a cheat. Owen can’t eat much of that.)

file_000-14
Oh oh! left the cake at home with mom all day…

Goal: once I get blog readership up to 2,000 followers, I will be positioned to go for book publication. Embracing Chaos, the book, predates this blog – it’s all written and ready to go, full of the hilarious and heartbreaking and outrageous stories that are part of life with Owen. Just need a little thing like an agent and a publisher to spread the joy.  And agents and publishers want to see readership to know that they can sell this thing. (Of course they can! everyone will love it.) The best way to know that real people are reading me is to have an email list of real readers. (since the WordPress system is full of “ghost followers” – fakes) Know that I will certainly not publicize anyone’s emails.

Every time you share this blog, you help to bring the publication of Embracing Chaos to pass, and the message of embracing and loving difference to a wider and wider audience. Which, I think, is a really great idea.

 

file_000-12