Seventeen days ago we came to G’moms house on the beach, to clear out old furniture, and begin renovations. I shouldn’t be surprised by now that there was significant mold growing there. Molds seem to be ubiquitous. Either that or the stuff is following me. Luckily we never planned to sleep in the house during renovations. Instead we have been trudging back and forth from here to a hotel. Now that most of the furniture is out, I look forward to sleeping here one day again. (I was not always as sensitive to mold as I have become.)
The pink and coral beach house stands between the intercoastal and the Gulf, on a long spit of land called Treasure Island. The island mascot, pirate Captain Jack, welcomes us each morning as we come across the causeway from the mainland. Mailbox kitsch is everywhere on display. The lavender house matches its lavender mailbox. Sun sparkles between palm leaves and over hibiscus flowers on the deck at 8300 Bayshore Drive — one block from Sunset Beach, one of the best beaches I know.
But this place isn’t just a beach destination. It’s a community. When Owen took off this morning, Tom the nextdoor neighbor went out on his motorcycle to help me find him. The neighbors on the other side (whose recycling Owen had just been pilfering), called out “Hello Owen!” and introduced themselves to him, as I supported him getting back to the house.
I am ready to go home. Seventeen days is a long time. Owen is restless and bored. All of us miss our normal routine. The trip should have been a week, but we added on ten days after Owen and I tested positive for CoVid. (All better, symptoms lasted a few days.) Although we appreciated them at first, we are sleeping badly on the hotel beds now, and tired of breathing dry hotel conditioned air.
But we will miss arriving each morning for smoothies and writing on the deck. We will miss finishing our days with feet in hot sand, lulled by rushing waves… until the sun lowers, and we realize that once again we are late to get supper…
I am a poor liar. So, I might as well confess upfront that this weekend Edward and I have flown far from snow drifts to warm weather. The fact that we needed respite badly does not mean we deserved it. What does”deserve” mean? We all need it.
Owen wholeheartedly agrees with any guilt I have, and he let me know that it was totally unfair. He pointed out that he has missed out on so many trips. It’s true. He was pretty bitter to be left behind, and also anxious that we might not return but leave him there, in the apartment that isn’t home, coping with a Pennsylvanian winter.
His parents are thawing. Uncoiling. Reading about sea turtles. Heartlessly writing in the sunshine by the pool, or snorkeling in the bay.
Even so, the ties that bind humans to each other and to their work are powerful and mysterious forces. We found ourselves standing at the waters edge on a beautiful beach, in lively conversation with a special ed teacher from St Thomas and a speech pathologist who serves the entire Virgin Islands. These dynamic women impressed us, committed to their work, serving an underserved population.
What also impressed me was that hearing the story of Owen’s voice emerging from silence through supported communication delighted them. They rejoiced.
This is not the common response among speech professionals of America. ASHA (the American Speech-Language-Hearing Association) has officially come out against supported communication. Plenty of other bright minds see it as a lie too. Consider Amy Lutz, an author and mother of a young man with profound autism and movement dysfunction. Lutz is a doctoral candidate at UPenn, out to prove that supported communication is a hoax. Her research involves pretending to families to be interested, and under the guise of interest observing them in their homes. Sadly she cannot see the independent movements that supporters feel. Owen started out supported at the hand. Now he can at times write supported at the elbow! But he had to start somewhere.
But even those who honestly believe they accept the premise of the split between Owen’s autistic behaviors and his true intentions, find themselves uncomfortable in that space. Doubt or disbelief do not surprise me. Even at the best of times we humans have a hard time listening to each other. When the motor system, at the mercy of lower brain anxiety, is at war with the upper brain, whether the diagnosis is autism, cerebral palsy, or stroke, it’s a lot harder. If this guy can control some movement, why not all of them? How can you move “unintentionally”? I hope science finds more answers.
Reflecting on inconsistent ability to move body parts, reminds me of a friend of ours. She told us she has first hand experience of what it feels like to be Owen after experiencing a stroke. She named one of her arms “she” because it would sometimes move unbidden, doing its own thing without permission. “Variable control” you could call it.
how do you firmly guard your soda bottle against mounted attack while conversing to (rather than about, or over the head of) the person in front of you, who is grabbing for it? And who shows no visible signs of being interested in anything you are saying?
So much easier to look away or to change the subject or leave, than to stand calmly, as our mason John Reagan did when meeting Owen last month. Owen had been thrashing around the house we are renovating, violently kicking the trashcans, likely because it is disturbing to see this house all torn up, still all torn up, but also because trash cans in general are his nemesis. Whatever their cause, the behaviors are exhausting to both of us, and I proposed saying “hi” to John on the way out the door.
I hardly needed to prompt his arm though, since Owen reached out toward John immediately, arm up and fingers forward in a salute that he uses sometimes with new people. Sort of like E.T. And John stopped smoothing cement, and looked up into Owen’s eyes and smiled and helloed back. His energy seemed completely relaxed. If he was faking he was really good at it, he seemed at peace. I loved that moment; it set me up for a week.
It has to be satisfying to finally let people know some tiny portion of the million thoughts and dreams pent up inside you. But it is clearly also pretty frustrating, like trying to run Niagra Falls through a pin hole. And the irony is that if you can speak, then you have the ability to lie. Apparently discovering that you can tell a story and make waves makes a nice change from powerlessness. Other caregivers of spellers and typers have lots of stories of lying, I discovered. It’s a phenomenon.
I remember the shock of the first time Owen told me a lie, and the greater shock when he told a lie about me. “Why would you do that?” I gasped, “that’s your voice!!”
It is his voice. That’s the point, isn’t it.
And this very autonomy that we sought for our children in the first place may be one part of the explanation for the failure to prove it is happening at all. Maybe it parley explains why the attempts to test supported typers and spellers have created damning, inconclusive, or confusing results. A bright mind that can communicate can be witty, can speak with double entendre. Or sarcasm.
If you can speak, you can lie.
Although, honestly, telling the unvarnished truth can be just as hard to take.
My parents are going to St. John It is really warm and beautiful there I want to go too
I would play in the sea And lie on the beach I would look at the clouds And the palm trees Birds would dive and soar
I can’t go and mom and dad Are leaving me in the snow I will be cold here with Trumbull Just hoping they come back
In the center of our parking lot at Meadowbrook Apartments stands a lone pine tree. It must have endured some kind of trauma in its young life, that chopped out or stunted the center top. Its Y shape branches salute me every morning and every evening, as I come and go from our temporary home here. The tree feels to me like a sentinel or a messenger. It isn’t an old tree. But it has seen a few things, already, and hasn’t let hard luck of being planted in tiny strip of grass in an acre of macadam crush its spirit. An old spirit in a young body. “Chill out lady. And smile, ok?”
My temporary home is his permanent one. The apartment complex, like Casablanca in the famous movie, is a place people come hoping to get somewhere else. People from all over the world are perched here, various languages spoken. Moving trucks come and go frequently. And some also call it home.
Like the pine.
Everyone wants peace. How do we find it? Where do we find it? Today in the parking lot, outside unit 503.
The boxes not in storage are mostly unpacked now. We are installed at Meadowbrook Apartments, on the second floor, waiting not-too-patiently for our new home to be renovated. It’s a nice apartment, looking out into a huge oak. Although ours is located next to the hospital it’s quiet. I haven’t seen a meadow or brook, but the West Trenton line runs though the woods beside our parking lot; the train thunders cheerfully by now and then. The whole complex is full of old trees, consequently squirrels. Also a clowder (a glaring?) of well-fed stray cats. The cats, and the old lady who feeds them, remind me of Berith, a force to be reckoned with, who loved her cats and dogs.
Berith C. Acton was my mom-in-law. She died suddenly, just as we entered the enormous effort of packing our house. I have hardly Had time to think about it. But when I see the prowling kitties, or when Owen wears his bright orange SunCoast tshirt, it aches to be reminded of the empty chair and puzzle table in Treasure Island Florida, just a block from Sunset Beach. Mom did not approve of our move. She let us know that it was “very sad” that we were leaving our home in Maryland, which she had visited so many times, to help after babies came, to witness Halloween, to help us get our tree and bake cookies for Christmas.
One of the early statements Mom made to me was regarding living on a barrier reef island – “terrible for the environment. No one should live on a barrier reef island.” But she did, and loved being so close to the Gulf. She loved living with her sister Gwenda, her travel partner all over the world, who also drove her nuts. She was always complaining about Gwenda. And I am cetain Berith drove Aunt Gwenda just as nuts. Mom loved classical music, Gwenda didn’t care for it. Mom disliked air conditioning, Gwenda liked it. Mom loved sci-fi (Star Wars!! StarTrek!!! even Buffy the Vampire Slayer), while Gwenda enjoyed romance novels. Mom loved cats, but didn’t have one for years because Gwenda hated them. Of course all my information comes from one point of view. When Mom took over the downstairs apartment, each sister had her own floor of the tiny beach house. Then cats could enter the equation.
Berith Acton passed from one life into the next life at noon on June 17th, with her boys all standing near. Even if it had been possible for me to be present, it would not have been appropriate to enter that sacred intimate family space. I would not have wanted to invade Edward’s and his brothers’ time with her, but I wouldn’t have minded a moment of my own. All summer, in the spaces between packing up our house, I have been trying to process the hole that Berith leaves behind, in my life, and in our family’s. Part of that story is also the story of the loss of my own mother, so many years before.
Under very different circumstances than Berith’s my own mom, Marianne Nicholson Gladish, died just before Christmas in1984, when I was twenty-one. It was sudden, the result of an aneurysm from her cancer drugs. She died as the medical staff tried desperately to save her life, no family members were with her. Afterwards my grieving dad dealt with the whole thing himself, on auto-pilot. I cannot imagine how hard that must have been for him. We had no opportunity to say farewell to her body, and it was not a time for cozy family remembrances of her. We desperately carried on all Marianne’s traditions, in an effort to keep some normalcy in our shorn lives. It is no exaggeration to say that the loss of my mom has affected my marriage, and the lives of all my children – for good as well as for bad.
One of the effects of that loss of my biological mother was that I needed Berith in a way that I would not have, otherwise. And over the years, I would find myself trying to plug Berith into that “Marianne void” with very poor results. My mom and my mom-in-law were very different women, with very different stories, and very different life experiences. The kind of open, warm affection that was natural to my mom (and dad) was foreign to my mom-in-law — I suspect that she never received it herself. Her family was more shy, and in Marianne’s family emotional wounds hung out there. My mom was the “golden child” in her family of origin, my mom-in-law seems to have been the “problem child” of the family — with a super-achiever older sister keeping her in line. Would Mariane have enjoyed knowing Berith? I think so; my mom had an excellent sense of humor, and wonderful social skills — something her daughter has struggled to learn.
The first time I spoke to my mother-in-law was by phone from University of Chicago, on pretext of finding a book, since she ran a book shop. Berith could sniff out a “pretext” a mile away, and did not care for polite chat. She was very uncomfortable talking to me, and edgy, and basically let me know she didn’t understand why the hell I was calling her to ask such a question. I was not prepared to be completely rebuffed. I wasn’t prepared any of the subsequent times it happened either.
By the time I met her, Mom-Berith had a long colorful history expressing herself boldly, loudly, and heartlessly, in defiance of the niceties of social life. Everyone in the entire extended family including Edward’s dad seemed to have stories of outrageous or hurtful things she had said, at one time or another. But then the whole family Is a loud, boistrous group, protective of each other and connected, but much more comfortable drinking together than talking about emotional wounds or repairing them. Not a good place for bleeding hearts. Or, is it?
But my mom-by-marriage doted on her cats. Mom told her cats all the crazy, affectionate, and silly things, in a loving voice, that she couldn’t say to her loved humans. (She is known in Treasure Island for yodeling at the top of her lungs to call the kitty home for bed.) To her human children she sent her love by mail — packages for every holiday, cards with money in them for every birthday of every son, daughter-in-law and grandchild. Elaborately wrapped gifts arrived at Christmas with lots of handmade bows, and later hefty checks when shopping became too much. She loved her family, yet she could not express her love for her family. The first time she echoed my “love you!” at the end of our family phone call Edward said that was the first time he had ever heard her say those words. Did I mean it? Did she?
Each Decemeber for many years Mom came to stay with us to bake her famous Christmas cookies. I would take her shopping, and let her take over my kitchen, mixing, rolling, baking, then wrapping each one, and packaging them in boxes to ship out to the family recipients. It is challenging, letting another woman take over your kitchen, and every year it started smooth then got uncomfortable, as I inevitably chatted too much and about topics that made her uncomfortable, and she prickled and took contrary views apparently just to pick a fight.
Looking back it reads like theater: Right at the time of year when my psyche was preparing for the anniversary of this blow the loss of my own mother, into my life I invite a woman who is famously undemonstrative and difficult. Usually Berith would not have wasted time on someone of my personality, nor I on her. We were complete mis-matches. And how much more so at Christmas time, season of family and pain, fullness of heart and emptiness, of loving and loneliness. She and I floundered and frustrated each other, year after year. Certainly she wanted to know her grandchildren and connect with Edward, even if she was not able to tell them the things she really wanted them to know. Instead she rolled cookies with them, argued about politics, drank her gin on the rocks, and watched the news.
The dark humor here could have been the end of the story. But looking back, I see that it is not. In her last years, loneliness softened her, and Mom-Berith expressed care for me, possibly to enjoy my company, or at least trust that I cared for her and was not a faker. And I learned to be better at loving safely, creating the required boundaries, and not to pour my heart out.
I remember how hard my own mother tried to teach me these social skills, with little success. I took my psychic wounds seriously; I bled. Mom-Marianne tried to teach me teen social skills, too: how to talk to my peers, how to stand, to appear nonchalant…she was very gifted at putting things into words. But I didn’t get it. Poor Marianne! She worried about me (which of course was no help). Later my wonderful husband showed me how, by loving me and being a fantastic example of social ease. But Mom-Berith showed me in her own way, brutally, but not brutal on purpose but because that is just the way she had always functioned. Reflecting on this makes me laugh out loud, as I am typing it. How we confused each other!
And, I loved her. I feel protective of her. Edward came back from Florida saying “My mother had a hard life.” I believe that she had no tools to say what was in her heart, and so she grew a thorny, hilarious, dramatic, prickly shell over her tender side to protect it. I long to hold the little girl she was, to tell her all the things that were special about her. That is my way. But I expect that little girl might have stamped on my toe and told me to cut it out. That was her way.
What makes us who we are? Nature? or Nurture? You have enriched my life, Mom. I am amused, and improved, and in the end warmed by knowing you. I am sure you are giving them fits in heaven. XO
i am moving to bryn athyn pennsylvannia this summer. i feel happy to go. but it is also very stressful packing up uoilli everything. i hope it is over soon.
i think that the new house would be perfect for my parents because it is smaller. it is not home but it is lightt inside and very good for having people over for parties.
i hoped we could move in soon but not everything about this house is perfect for us. we will be living in temporary housing until it is ready for us. it will just be harrrrd not to have finished the house beffore we go from maryland.
i am going because i need a better life and friends. that is the thing to remember.
Owen and I are each working on posts for the blog, amidst the confusion of a crazy summer. But meantime, this just arrived in my inbox and I had to share it with you all. From the Peace of Heart Community blog, written by my dear friend Amy Groschell. Amy writes here on a topic that has been in my heart all summer, and I couldn’t have said it any better. With love, dear readers —
“Any dance of celebration must weave both the sorrows and the blessings into a joyful step…To heal is to let the Holy Spirit call me to dance, to believe again, even amid my pain, that God will orchestrate and guide my life.” Henri J.M. Nouwen
BLOG: Joy & Pain, the dance of life
I am convinced that behind every belief system lies either a private pain or a fear of pain and suffering. Today’s current climate couldn’t be more reflective of this. While it is true that a virus of little known magnitude is sweeping through our world, it is also true that many others have gone before it. What makes our response to this one so different? I would propose it is our ability to name it and, to some degree, avoid it unlike the life-altering diagnosis of autism or cancer as it seems our fear of infectious disease is exponentially greater than diseases of unknown etiology. The human mind has a great desire to know what it is dealing with it we can find a solution to it. In some ways, the ability to name it (via testing) has given it power. In addition to power, the ability to name it has provoked fear. Fear of catching it, fear of a loved one catching it, or fear of what will happen if one does catch it. Often, fear of the unknown is greater than the unknown’s reality. Somewhere in America we missed the memo that suffering is a part of this world. It’s part of the experience that makes us human. Those who have suffered the greatest often are those most compassionate to others around them experiencing hardship. As one who has had a fair share of suffering, I don’t mean to sound insensitive. At one point we will all undergo something very hard. Something that seems like it will overtake us. Some experience that sends us into deep waters. What will our response be? While we cannot control the response of others, we can control our own. Many who have traveled to 3rd world countries notice immediately the joy and happiness of those with much less. They don’t have shoes, insurance or access to immediate medical care or medications yet find joy in the smallest things. How can this be? I believe the answer is simple: they know joy and sorrow are intricately connected. They know them to be part of the same human experience. I lived an idyllic life as a child. Autism hit me as a young mother: twice. I became fearful of “what was next”. When the dreaded next thing happened, losing my husband and father at the same moment, I knew it was impossible to avoid suffering. I began to see life less as something I controlled and more as something I navigated. Essential to me was giving space for God to move. The more I tried to have control, the less space He had. The result under those conditions were always less than desirable. Reducing my expectations gave way for scenarios I could never have dreamed of.
The question remains, what is our response to suffering or the fear of it? Do we behave recklessly or in blatant disregard of others? No. We dig deep into our beliefs systems about our bodies, how our immune systems are designed to work and how we can support them, and we make other lifestyle changes that support our health. We seek medical attention if we do get sick. We reduce our exposure to media and social media. We check in on our family and neighbors and make sure we help meet any unmet needs they have. We do not stand as judge of the beliefs of others knowing they have a secret pain or fear that they alone must navigate. We recognize their journey as their own. We trust that God ultimately is in control of all things. We use strategies like prayer and meditation, and we follow experts who give us tools that bring us peace. “…In this world you will have trouble. But take heart! I have overcome the world.” (John 16:33b)
Amy Groshell, Co-Founder, Peace of Heart Community
I love the cranky prophet, Jonah. He who, dragged back to the task assigned him by God, unappreciative of being saved from drowning (by a large fish), unsuccessfully calls the city Ninevah to repent its evil deeds, and then watches sour but hopeful to see Ninevah blasted for disobedience. But Poor Jonah! God forgives them. Some religious leader. He makes me laugh.
I think I laugh because I see myself there, all my plans and my agenda(s).
When I got the memo that a large portion of the rest of my life might be given over care of a person with significant special needs I was bitter. Like Jonah – hey! I didn’t ask to go to Ninevah! And it wasn’t just care of Owen that overwhelmed me. I ran away from my caring for children job in a hundred little ways.
A poem written at that time, most likely scrabbled down standing at the kitchen counter on my way to doing something else, expresses it —
Running to Kansas —-
in the garden patch
among the bees
Running away at the sewing machine
the washing machine
the committee meeting
Running to the novel in the bathroom – the music in choir–
Standing at the kitchen sink,
you are running away,
mother at home.
Standing now, to face the human need—
the hands that grab
the mouths that want
the eyes that want and weep,.
release the urge to find another world.
It will wait.
Creation like life never ends —
Be here, now.
Mother at home.
It has taken many of my 26 years with Owen to accept the job with grace. To learn how to physically care for another human without resentment or impatience — not to merely tolerate it, but to enjoy it. Of course I love my son, but the work of physically caring for another far past the usual cut off point is what I mean here. Side note: some of those unsteady moods I experienced (sadness, rage, despair) can be attributed to bipolar illness. I take medicine now to balance my mental states, and it is a gift.
Most recently in my mother journey, I understand my task is to support without intruding my agenda. EVEN if it is a very supportive, enthusiastic, loving agenda. Mom’s enthusiasm can be in the way. Last month Owen stopped being willing to communicate with me supporting him. I missed that connection sadly. But it wouldn’t work. After a few weeks he was able to spell an explanation: I CANT TYPE WITH YOU BECAUSE I FEEL YOUR GREAT HOPES FOR THINGS THAT COULD BE. Then he walked away. Later he explained more, in a conversation supported by his dad – I HAVE THEM [hopes] TOO. I JUST WANT TO DO IT MY WAY.
If you love someone, set them free.
How ironic to try to set someone free who depends on you for nearly every action in his life. Yet no person is more in need of that emotional freedom.
This Mother’s Day, I was treated wonderfully well by all my children, with calls and flowers, cards and gifts. One surprising gift was a song by Owen co-written with his teacher Brian Laidlaw.
It meant so much to receive this gift from you, Owen, to hear your words, to know that you feel this way, after all that we have been through together. You wrote those words, and in the same way that love produces more love, a never-ending stream or trickle (just when the pot seems empty sometimes), so artistic creation seems to breed more artistic creation – there is no end. So your entrée into the creation of your own artwork fuels mine – and where once I felt like I was drowning, I discover myself rescued and carried by a magical fish, to dry land.
i feel nervous about germs. this might seem funny to you since i ouilli have a struggle to not eat garbage. but i really am afraid of getting sick.
my mom says that i have an incredibly strong immune system because i eat garbage. she feels that that the germs make me stronger but i still feeeeel worried.
i need more evidence.
[UPDATE: This is a link — I hope — to a song that Owen recently co-wrote, with Brian Laidlaw, his new teacher – called the CoVid Blues]
[Owen uses supported communication. As he practices with his support people, he is gaining more and more control of his disobedient muscles, more and more independence at the keyboard. I compare the process to what a person recovering from a stroke might go through, recovering the connection between brain and body.. This piece is entirely his work, as he wants you to see it. — Wystan]