Susan's Blog

Sunday, February 4, 2018

The Lonely Witch

Near a small village where the river flowed into a deep narrow valley lived a young witch woman with hair as black and as long as a winter’s night. She lived with a cat the color of smoke, in a curious house painted a strange blue such as no one had ever seen before in this village of brick huts. Though the woman was a witch, the people were not afraid of her, for she had never set an evil spell in anyone’s memory. She made music, and she made magic. Her music was sweet and high pitched, like the hum of honeybees. And the only magic she practiced was making potions for the townspeople’s ills. If someone had a sleeping sickness or the ague, or a broken foot, the witch would retreat to her little blue house, shut her vine-covered door and then a few moments later she would return, producing for them a glass ampule full of some magic liquid, and with a few words of instruction, she’d send them gratefully on their way.

The witch was called May, for that was when she could be seen most often, gathering herbs and bits and pieces of animal leavings, bones, fur, and fewmets. She could be found staring intently at the sunny sky, or the stars at night, scribbling odd notations and jumping up and down with joy as she solved some strange puzzle that only she could know about.

Though May was a young woman, she was always alone because of her strange ways. There had been a young man or two who had dared venture to her door, seeking her company, but she had never answered their knock. A few bold children would call to her to come and watch their games, for they were young and intrigued by the idea of a witch. But she would remain inside. Only the townswomen would be allowed inside but just the doorway, and only when they sought her help.

It was said that May did not like people, but this was not the truth. May was very lonely and wanted a friend, but she could not be in the company of children or the townsmen. Everytime they drew near, she would have the most powerful pain in her head, and she would have to stay very still and think of nothing until they went away. There were no unguents or potions she could make to soothe this pain.

Each year in the late spring May would venture forth into her deep valley and fill her apron and her heart with the bounty of the earth. The newborn animals and the fresh seedlings were her only friends.

One particular spring, the sun did not show its face at all. The rains fell day after day, turning the grassy meadows into mud, and causing the young plants to droop and grow soggy. May’s heart ached more than ever with loneliness for she had to stay indoors during her favorite time of year. Finally she grew so weak and tired that she sought the help of her book of enchantments. Thumbing through the gilt-edged dusty pages she searched for something that would help. She came across an entry labeled “Life Force,” and she read the words. The Life Force spell was the most powerful of spells, and May had never known anyone to use it. But the spell told her that Life Force could be summoned in the most dire of times, by only the most skilled of witches, and it would bring to life something that had never drawn breath. It could not revive a dead soul nor could it keep a dying person alive, but it could create a life.

There was one condition to the Life Force spell: once this life was created, there would then come another being, someone who would need tender care the rest of their life. The spell book did not say anything else about this child, but May decided she would take the chance nevertheless. How she would tolerate the voice of a child? She knew not the answer. She would have terrible pain the rest of her life. But the pain in her heart was even greater, so she felt she could accept this condition.

She looked around her room of bottles, vials, and beakers. They could not become a person. She studied her oaken casks, her black iron pot, her stove. Her cat was alive, and so he could not be changed.

Suddenly she cast her eyes on her violin. “Ah, this will be my friend,” for the violin already had a voice that brought a smile to her face. She corrected herself. “My husband.” Her head pounded in response, but she knew that this was the only way to ease her loneliness. She shut her eyes and she whispered the powerful sounds of the Life Force spell. She waited. Suddenly she heard a voice. But it was not the deep rumble of a man’s voice. It was a young woman who stood before her.

The woman was small, and delicately formed. She had hair the color of spring earth, and eyes the shade of lilac blossoms. “Hello, May,” She said, smiling. “I’m June.”

May’s heart leapt with joy. Women never brought her pain! She would have this beautiful friend and she would have no pain! How could this be?

As if hearing her thoughts, June said, “Yes, your heart summoned a woman spirit, a summer being, and so here I am. “

May wanted to fall on the floor laughing, and weeping with joy. For June’s voice was the sweetest sound she had ever heard, that of the birds awakening in their nests, in the pinkening sunrise. The music of wings in flight, of eggs hatching, of gentle breezes that shake rosebuds awake.

June pulled May into an embrace and May felt her strength return, like sap through a tree. When at last she lifted her head, she asked the question that made her heart ache: “Where is the other one? The babe?” Her voice shook because she was terrified of this, knowing the pain that would come.

But June said, “Come outside with me, even though the rains still fall, and we will search for him. Don’t be afraid,” She held out her hand and May followed. The outdoors was so wet that their boots sunk into the ground, which sucked and pulled at them. May’s cloak was wet through. June did not seem to notice her own soaked cape.

They heard a noise, the tiny chatter of small animals. Out from a log sprung the strangest creatures May had ever seen. They looked like mice, but had rabbit ears and deep fur. “Oh there are my friends,” exclaimed June. “What do you have to show me?”

The three creatures chattered a little more, and then ran away, deeper into the woods, stopping at a small cave. “Here?” June asked. The three creatures chattered some more and then darted off into the cave. May and June crept inside.

There sitting by a small underground spring, sat a young man. But as their eyes adjusted to the darkness, they could see that he was not actually a man, for he had elfin eyes and the legs of a pony. His body was long and thin, and they could see his bones through his delicate skin. He looked at them, shook his head, and a golden forelock fell forward between his frightened eyes. He opened his mouth and made a sound as soft as moss underfoot. May’s heart turned over.

June said, “He is lost and hungry, poor thing.”

“Oh, he is so darling,” whispered May.

June smiled.

May said, “But this can’t be –“

And June said, “Why not? He is all alone here, in desperate need of food, but he knows not what to do, because he is merely a colt.”

May said, “We must help him!” And she knelt to touch the tousled head. The creature made the sound again, but it was quieter this time, and he closed his eyes.

June said, “Let us take him home and we will make him well again.”

But May’s heart leapt in fear. “The townspeople. They will be afraid. They have likely never seen someone like him, a boy-colt.” June laid a finger across May’s lips and said, “It is of no consequence. He shall be ours.”

May was still filled with fear as they led their foundling back to the blue house. Almost immediately the townspeople learned of the strange creature in their midst, and of the stranger who had come to live with May. And they shook their heads because they did not know what to make of it.

But as the days grew warm again, and the sun came out, young women ventured out into the valley where May, June, and their foundling lived. The door still opened for the townswomen, and one by one, they would return home with their potion to heal whatever ill had come to their household. They could sometimes hear the soft whisper of the creature’s voice, but it only reminded them of the sounds of the forest, and it did not make them afraid.

In fact, some of the townspeople started to notice, out of the corner of their eye, other similar creatures cantering at the edge of the forest. At first some of the children would laugh and point, but there was something about the soft whinny from the colt-children that stopped their laughter. They could see that the colt-children were suffering, in pain, unable to feed themselves. How they had lived this long no one knew. The parents would take their children by the hand and creep closer to try and understand what the creatures were saying. They started leaving food and drink at the edges of the forest.

The creatures came around more often, bringing the sounds of quiet with them. Men, women, and children alike would find themselves relaxing, resting, and enjoying the world around them whenever the creatures came near. Some found that their sons and daughters refused to leave the creatures, delighting in their sounds and their large bright eyes.

Many families eventually took the creatures home with them and raised them as their own. And no one knew where the colt creatures had come from. Eventually the townspeople forgot that they once had not even existed.

Only June knew that they had likely always been there, perhaps in another form, waiting to be seen. For some beings can only been seen when the heart is truly ready to do so.

Thursday, January 25, 2018

The Caregiver

There was once a woman who lived in a castle. She had everything she wanted, everything she needed — the finest food, plentiful drink, bountiful silks, warm woolens, the softest leather shoes. Her castle had tall windows cut into pink rock, and they lined the strong walls, curving around the towers and drawing in sunlight from every angle. The woman was known far and wide for her learnedness, her ability to understand even the most difficult of problems, and to solve them for the people of the land in a gentle manner that made them feel both cared for and empowered at the same time. She was beloved by all.

The woman had a son who was as fine a young man as could be, having grown up with her warm attention and beautiful, comfortable surroundings. He was tall, with hair the color of summer meadows, and eyes as blue as the azure sea that spread below the cliffs. He was as handsome as a prince, and upon meeting him girls would sigh with a longing they had never felt before.

And yet the youth was alone. He had no friends, because he could not speak, other than the strange sounds that came out of his mouth. Nor did he look at anyone. His eyes looked just beyond them, as if only interested in something far off. This caused much discomfiture in those who met him, and so that once people spent time with him they would eventually feel their hearts turn away, their eyes searching for an opportunity to move away from him. They learned from one another to smile at him even though he never responded. If they needed him to pay attention, if some danger were imminent, they would touch him gently on the arm. Only then would he look directly into their eyes, but for a flash only.

In that brief moment, people could see something, but they did not get a long enough look to understand what it was. The baker described it as a dream he’d had, where he’d felt happy upon awakening, but knew not why. The miller described the look as the moment the light shifts from winter to spring. People nodded at her description, satisfied, for they understood the importance of that time of year, that softening of air, the unfurling of something wonderful but unseen.

And yet, this sliver of the young man’s mind was so fleeting that it only caused more sadness and frustration among the villagers. And none so much as the boy’s mother.

It may be that her heart was too deeply entwined with his, or that her great mind grew clouded and gauzy with what she wanted so badly, but she simply could not teach him to talk to people or to listen. This felt like a profound failure to her, and this sliced at her soul like a dagger. And yet she forced herself to carry on and to show him how to do things. “If he cannot speak, and cannot think,” she said to herself, “at least he will be able to feed and clothe himself, and to ply a trade.” For her biggest fear was that he would have nothing and no one to look after him when she was gone. And truly, how could others, when they understood nothing about him?

Still, though they found it difficult to witness his strange eyes and hear his coarse sounds, they tried very hard to welcome the young man into their shops, their homes, their gatherings. The mother helped this happen by using her great wealth. Every day she would come down the castle steps with her son and no matter what she was feeling, no matter how tired or sick she might be, she took him into one particular shop or another. She would always take care to greet the proprietor warmly and to ask if he or she might allow her son to stay there, and perform any task for them, no matter how great or small. In return for their patience, she would pay them with a sack of gold.

The son could be seen carrying the heaviest loads of wood, and stoking great fires for the baker. Or he would be walking slowly across town with a set of fine crockery in his arms, careful not to break anything. Or he would be down on his hands and knees scrubbing the dressmaker’s shop till it shone. And he would do it but he would grunt the entire time.  He merely worked like a farm horse, sweating, chattering loudly like a squirrel and never smiling.

He never seemed to remember from day to day what he had been taught the day before. This tried the townspeople’s patience, but because they needed the gold, they tried every day to show him once more what he had done for them only yesterday. “He is a good boy,” the shop owners said to each other, but they really did not believe it. He was simple, useless, except for the tasks they would show him to perform every single day. Though he was a man, everyone saw him as a boy because he knew even less than their own infants.

One night the mother fell deeply asleep. A fairy came to her in her dream and said, “I will give you that which you desire most of all, but you must give up all of your worldly goods. But you will have your heart’s desire.”

Though the mother was asleep, her mind was still working and her heart was still soft and pliable. She knew exactly what she wanted: for her son to be able to take care of himself when she no longer could.

The mother nodded and said, “Take it all. Give my son intelligence so that he may look after himself one day when I die. Maybe he will be a baker, or a miller, or a husband, or a farmer. For every day I have had others show him how to take care of things, how to clean, to cook, to fetch wood and water. But each day he is once again a blank slate. He comes home, eats dinner I’ve cooked and goes to bed without even being able to wash a single plate.” She poured out her heart to the fairy, years and years of anguish over her son ebbed from her, enveloping them in a cloud.

“It shall be so,” said the fairy, and then she flew away. Upon awakening, the woman remembered only that she had had some kind of odd dream. She moved to raise herself onto her pillows to think some more, only to find that she had no pillows at all; she had only a straw mattress on the floor. And the floor was not covered with fine rugs, but was merely packed dirt. She stood and walked the small area within the hut, cold because the hearth had no fire. There was no more castle with pink stone; she had walls of wattle-and-daub, just as everyone else in the village. Her clothing was but one worn gray dress.

“What have I done?” cried the woman. “That fairy tricked me!” She thought immediately of her son, who was still asleep on a pallet on the other side of the room. The morning sun lit up his beautiful face, but it only made her wring her hands. He would have nothing, because of her stupid belief in an evil spirit. “Now I have no gold to pay for my son to learn work!” At that moment, her heart filled completely with so much black sadness that it broke in two. She was overcome with the pain and fell to the floor unconscious.

When she awoke it was nighttime, but several days later. She felt her stomach growl in hunger, and all of her worry returned. She found she could barely lift her head. Though the two halves of her heart could still beat, most of their energy had drained out. She was filled with terror that she might be dying then.

Suddenly she heard a strange sound and turned over slowly, so she could see what it was. Over a flaming hearth stood her son. He was grunting and cawing the way he always did, but something was in his hand. It was a ladle. He looked at it for a very long time; he seemed to be thinking very very hard. Finally he lowered the ladle into the big black pot.

His mother could hear something sloshing around in it. She watched as he stirred, very slowly at first, and then speeding up. When he was finally satisfied, he dropped the ladle on the floor. His mother could not help but sigh in disappointment. But then he stared at the ladle and again, seemed to be looking at it as though he were trying to remember something. Finally, he picked the ladle up off the floor. He put it on the table. Then he looked back at the spatter it had made and once again he stared at it for so long his mother thought he had gone into a trance. At last he reached for a cloth and bent slowly to wipe it up.  He rubbed and rubbed at the floor. Although he had forgotten the soup, he had made the entire floor clean and smooth.

The mother was by now wide awake. The pain in her chest was nearly unbearable. Her stomach growled loudly, so loudly that the son looked up from where he had stood staring bewildered over the black pot of soup, trying desperately to remember something. The noise from her stomach was a sound he recognized and he snapped into awareness, reaching for a bowl on the shelf. He poured the soup carefully, slowly, sweating with the effort to concentrate. But he filled it and then he carried it over to his mother. He set the bowl down next to her, sat down at her side, and stared at her for a very long time. Right into her eyes.

She gasped and then laughed, even though she was so near death. For there, in his eyes, was that sliver of him that showed so rarely. Only this time, though it made him tremble and struggle to breathe with the effort, he continued looking into her eyes. His tears came and dropped onto her hands. He babbled some more and turned away, reaching for the bowl.

He slipped an arm under her head as carefully as a doe tending her new fawn. Ever so gently brought the spoon to her lips. She could feel his body laboring to hold onto his focus. She tried to find him in his eyes again but he could not look again.

But it did not matter. He spooned the soup into her mouth, cradling her in his arm. From time to time he noticed the drops of soup on her chin and eventually remembered how to dab at them with his sleeve.

When she was finished eating, she felt that her heart’s pieces were full but that her spirit was beginning to make her head feel light. He tucked the bedclothes around her, and slowly brought the bowl over to the washbasin. Again, he stared for a long time at the basin. “The time is drawing near, my son,” she said so softly it sounded only like the evening breeze.

But he had heard her. He walked over to her and took her hands. He once again looked deeply into her eyes and showed his tiny light, though it hurt him to do so

She shut her eyes for his sake, but she was suffused by joy. For she knew that the fairy had not lied after all. It had not come the way she thought it would, though she had tried to teach him every trade there was. But he was not a miller nor a baker nor a handsome husband, nor a farmer. But he was enough. And even though he was as slow as the years, he was indeed able to take care of himself.

 

 

 

Wednesday, January 24, 2018

The Mandolin

Dear Readers, I have improved this story. See what you think.

Many years ago, in a small village across the sea, there lived a woodsman and his wife and their infant son. Every day the woodsman went into the forest to cut wood and then shape it into bowls, plates, and anything else that was needed, and sell it to the people in the nearby villages.  The woodsman loved his wife very much and would carve for her small things out of the wood scraps.

The woodsman’s wife was a beautiful young woman known far and wide for her beauty and for her healing powers. It was said that her green eyes, so unusual in color, could look into a body and see the sickness. Even though she was so young, she had cared for and cured many, many people, young and old, for miles around. People spoke reverently about her knowledge of herbs and plants and her great mind, and her all-seeing eyes.  Sometimes a person could simply catch sight of her coming up the walk and they would feel something ease inside them. For her success with sickness had become so well known that the very compassion that shone from her lovely face also aided in their recovery.

The one person she could not cure was herself. She would have bouts of sadness that were so heavy and black they blotted out the light in their small cottage. She would take to her bed for days and days and there would be a silence throughout the town as if everyone else was also feeling this great sadness. And indeed they were; such was the deep love they had for the young healer, and their sorrow that they could not return her care.

The woodcutter loved her most of all and when she would have her spells, he would become desperate to help her. He would think about all of her favorite things — flowers, trees, and plants — and these he would carve into the darkest hours of the night. His warm hands and his tears would soften and shape the wood into miraculous, intricate likenesses. When he gave them to her, there would be a brief tremble across her lips, the beginnings of a smile. And though it would just as quickly disappear, he knew she had felt momentary joy and would soon feel better.

But one day the young wife fell into a sadness that was deeper and darker than any she’d had before. The air in the town became cold and cruel, sending the townspeople indoors for days and days. The snow fell unceasingly and all activity came to a halt.

The woodsman was the only soul who dared venture outside during this time, because he desired nothing else but to find the perfect bit of wood and create something very special to help her. He walked for a long time but never lost his way, even with the deep white disguise of the snow, for he knew the shape of the forest as surely as he knew his own heart.

He was searching for one particular tree, a rosewood, and finally came to the small stand of rosewoods by the distant edge of the forest. There, in the center of those red-brown trees, stood an exquisitely curved rosewood. It had been cleaved in half by lightning yet was still upright. “Ah, this is the tree,” he said with a certainty that surprised him. It was as if someone else were speaking. He chopped at the heart of the tree and it was as if someone else were holding the axe. The tree trunk fell away easily and gave up its center, where its wood was newest and of the rosiest hue.

The woodcutter returned home and began whittling away at the bark. But again, it was as if someone else had hold of his knife. He did not know what he was making, but worked away with the help of this unseen power. What he did not realize was that it was his own life force that he was pouring into his work.

When he was finished, there before him lay a beautiful mandolin. It had a delicate neck, a curving top, and cut into the body of it were two hearts, to let the sound out. He went to his wife and awoke her. The moment her eyes opened they caught sight of the perfect instrument and she smiled instantly. She reached for it but noticed her husband’s arms trembling. She looked up at him and instead of her strong young husband, an old man stood before her. In an old crackling voice he said, “Play it, my dear.” Terrified, she began to play. As the melody curved above her head, she closed her eyes, for she had never heard such an intensely beautiful sound. It was the sound of springtime, of growing plants and blossoming flowers. She played and played, and her heart rose like the sun in the sky. The snow stopped and it was daylight.

When she opened her eyes, though, her husband was on the floor, dead. Her heart burst inside her chest and she fell to the floor next to him, weeping and dying.

************     ************

Now it happened that a stranger was traveling through the forest in search of shelter. He came upon the clearing in the woods where the woodsman and his family lived. His hands trembled and his feet had lost all feeling. He was about to knock on the door when he heard the most beautiful music. It rose and curled around him like the warmth of a hearth fire. It lulled his aching heart and warmed his numb limbs. When the song ended, he rushed into to the cottage to find the person who had played this incredible music. But when he opened the door all he could see was the old man, and the young woman with her arms around him, and he knew they were dead.

He sank to the floor in despair for the poor people, who though ill-matched in age, clearly had loved each other. Just then the rising sun shone a light into the corner. And there he saw a cradle — and it was rocking. He went over, looked at the baby, and inhaled, breathing in the sweet scent arising from its breath. Then it opened its eyes. They were the most astonishing green he had ever seen. And now, right next to his sadness, was a bubble of laughter; this was because his wife was childless, and he had been searching far and wide, across the sea for a healer. Instead he had lost his way in the snowstorm — and ended up here.

Looking out the window now, he saw that the snow had stopped, and there was daylight spreading across the horizon.

What a strange and wonderful gift he had been given. He knew he had to act swiftly. He slipped his large hands around the child, but as he lifted him out of the cradle, he felt that the spine of the child was lumpy under his fingers. A shadow behind the full daylight fell across them. Quickly he bundled up the baby and fashioned a knapsack to hold the child at his chest. He whispered a prayer of thanks to the couple, and knelt to scoop up the finely carved mandolin as well. Perhaps he could sell it for a good price. The baby slept peacefully against his body.

When the man returned home after so many months he found his wife huddled in a chair by the fire, her face nearly shapeless from crying for so long. But when she looked up and saw not only her dear long lost husband but also a baby, she stood and ran to him, young and strong again. He loosened his knapsack and handed the baby to her and she cradled him in her arms. The mandolin slid off his back against the floor. A small crack opened in the body but neither the man nor the woman noticed in their joy. Eventually they remembered the pretty instrument but because of its cracked body, they knew they could not sell it, and so they hung it up on the wall over the fireplace. “It will cheer us on long winter nights,” his wife said, though they knew they already had so much to be cheerful about.

The man and his wife raised the boy with all the love in their hearts. The man taught him how to hunt, and skin animals for their fur. They told him nothing of his birth parents, for they knew nothing about them, and he was surely meant to be their own son.

As the boy grew up he wanted for nothing. The hunter and his wife loved him with all their hearts. But as he reached manhood, his parents noticed that he could not stand up straight. There was a twist to his spine, and his right foot dragged as he walked. He certainly could not run. The young man knew from a young age that he was developing an illness in his body, but he kept this feeling to himself and continued to work hard, like his father, at the furrier trade. But his mother, who was no stranger to sorrow, recognized how ill-suited was her son to this vocation. However, she had no knowledge of the healing arts, and she knew that he must have a livelihood, so, she sent him out into into the woods each day, with a bow and arrow on his back and a long knife at his side, and told him he must search the forest for prey. Her husband agreed, for they were simple folk who knew only a few trades to ply.

Because of his physical disfigurement, the young man’s sorrow grew with his shame. He found increasingly that he could not find any animals, or that whenever he struck down an animal, he also had the desire to stop its pain.

One day in early spring he saw a young doe. He drew back his bow to launch the arrow when suddenly the deer turned towards him. She looked right into his eyes and he saw that they were not the customary brown of a deer; instead they were the most unusual shade of green. His breath caught in his throat. He was stunned by her eyes, for they were somehow familiar to him. Was this an apparition? He felt frightened by this, but at the same time, he could see that she would make an easy kill. And because he wished so dearly not to bring shame upon his family, he drew back the string of his bow and took aim.

But suddenly the doe spoke: “If you spare my life, I will show you how to save other lives, for I know who you are. You are not a hunter. You are not a sick man. You are  a healer. ” She turned her back to him, allowing him the full view of her magnificent side. He knew he could easily strike her down, but he was so moved by her words, and curious, also. How could it be that he was not sick in his body?

The young man lowered his weapon and followed the deer into a meadow. As she walked through the glade she sang and the words of the song were not like human words; instead they were simple description and instruction. She would nod at patches of flowers and plants growing alongside them, and she would sing their names, and their powers. He knew that she meant for him to gather them.

He had walked for miles, and it was growing dark. The doe stopped and said, “You must hurry home now and think on what you have learned today. And you must kill no more.”

The young man turned to leave but he heard on last thing from the doe: “your healing wisdom will not come from your mind. It will only come with the song I have sung for you.”

Desperate to recall the song, the young man walked home as fast as he could, frustrated with his slow legs, his arms laden with the greens, his weapons weighing on his crooked back. Without a word to his parents he set his plants down on the table. He looked at their green stems, their myriad of petals and leaves, for a very long time in the silence of the night, willing the song of the doe to come back to him. But all he heard was the crackling fireplace.

As he stared into the fire and a spark jumped out, flying upwards like a lightning bug. He followed its path with his eyes and really noticed, for the first time perhaps, the old mandolin that hung there.

Where had it come from? He peered at it closely, his heart pounding in his chest. What a beautiful piece of art it was. Though over time it had become very dry, with more cracks, and its neck was separating from the body, the two exquisitely carved hearts remained intact. The strings were coated with dust. He blew away the dust and placed the instrument high against his chest, encircling the neck gently with his hand.

He found that the curvature of his spine was such that it arced itself in the perfect shape to hold the instrument. His throat filled with joy as he realized that for the first time he could enjoy his body exactly as it was. He plucked the double strings on the bottom. Its sound was small and splintered, like icicles breaking off of an eave. Then he strummed the heavy double strings at the top, and he heard its bright hum, It was the sound of early spring water breaking through ice. It was the song of Nature, the song of the doe. And now the bundles of herbs and flowers made sense to him, and each told their own story.

That night the young man learned the healing arts. He realized that indeed he was no hunter: he was a healer. Renewed with a sense of purpose, he set out from his parents’ home and roamed from village to village, and began healing the sick and the sad with his herbs and his music. Soon word spread of the great skill and the strange way he summoned it, crouched over the old mandolin.

The young healer never learned of the origins of the mandolin, nor did he understand why he was able to play it so beautifully. All he knew was that he himself had been healed in his heart that night, all because a strange beautiful doe had given him her trust and her deep wisdom, and a mandolin that sang with her voice.

Saturday, January 20, 2018

The Reflection

There once was a girl who was born ugly. From the very start, everyone thought that word when they looked at her, and some even used it in her presence.. But what did it mean? No one could say, but everyone felt they knew. They’d heard it from others before, so that is how they knew what ugly was.

The one thing everyone knew was that ugly was bad. No one would ever want to be ugly.

In the case of the young girl, her face did not please. Her jawline wavered, not firm and straight. Her nose was graceless, long and bumpy. Her skin was mottled gray and bruised pink. Although she could speak, her words came out strange. She did not seem to understand what was being said. She was also clumsy. Ugly. From the start.

She learned that being ugly meant there was nothing that was just for you, nothing but what other people in their clay-like hearts felt like they could spare. The people around her believed that she should not get anything, because she didn’t deserve it. Her face, her body were the things that closed the door to having anything of her own.

As an ugly being she learned to become a benign white cloud, and to float around, unnoticed. It wasn’t that she could fly or swim, it was more that she simply did not show up in a group. Nor could anyone hear her. She learned also to stand very still, with her neck slightly bent, eyes on no one, eyes disappearing into her doughy face. This way she let everyone know that she knew she deserved her invisible, unnoticed place — although it was hardly a place. She occupied a disturbance in the air, but only in the way that a cloud might suddenly change shape with the breeze, meaning nothing. She dared not mean anything because she could not bear an even deeper dislike that might develop, from the sneering eagle faces that surrounded her.

The girl grew into a woman because her body could not help changing. She would have given anything to prevent this from happening because it meant that someone would notice her. And indeed, one day the girl wandered into the forest and there she met a man. He was tall and dark as the trees around her, and he smelled faintly of pine and cold air. She did not mean to see someone else and certainly would have gone the opposite direction, but it was too late. He did see her. He looked at her for a long time, his dark brown eyes stared, unflinching. Her gray skin flushed pink; she could not help it.

He looked her right in the eyes and she froze. And his spell was cast. She felt herself being chipped away, like an ice sculpture. Her arms whittled slender and straight, her lips and mouth cleared out, smoothed into the shape of an opening rose. Helpless, her insides turned to water under her thin sparkling icy skin. And she became beautiful.

The man’s eyes returned to their normal state, brown and hard as tree roots, but they would not look away from her. The appraising look on his face gave way to a pleased surprised that caressed her like loving hands. And because she had never experienced this sensation of fiery eyes on cool bare skin, she gave herself up to him. This is love, she told herself. This is love because it is powerful and transformative. This is love because I am no longer ugly.

She found, however, that it felt best to walk with his arms around her. Her legs were shapely but they could not move much. They hurt with each step. The man held her up and she closed her eyes to the pain, and at last she was able to leave the woods. When she came back to the village, there was a roar of excitement, a rush to look at her, and the handsome man by her side. They looked at her and they smiled their relief that they no longer had to feel her shameful ugliness.

The young woman basked in their soft new feelings towards her. She started to move among them with a new palpable presence, they made room for her, they allowed her to stay near them. They talked to her and she found she could speak to them. But her words were not her own, they came out fully formed with clever and witty phrases she herself did not understand. Yet she saw that they delighted those around her. She continued to experience hot and cold, pleasure and fear, and polar opposites, all the time. Her head was always strangely light, but her heart was constantly squeezed into a knot. For she knew she was paying a price for her new beauty: she lived in a constant state of fear that she would lose it.

The man would appear suddenly, but she never knew when or where. Sometimes he showed up at the foot of her bed, golden with sunrise. Sometimes he appeared in her dreams, and bore her away to strange and wondrous lands, holding her by the hands as they flew through the night skies.

He whispered that he would never go away, but at the same time, every time he turned his head for the smallest distraction — a bird in flight, a breeze carrying a flower petal, a maiden on her way to the market — her insides would freeze, buckle, and crack a little. For it was his attention alone that made her beautiful and she knew it was not her own. And once she had tasted it, she felt she could never go without it again.

Over time, the man became tired of her fearfulness — even though it was he who had created it. He grew bored and would make the girl sad, again and again, showing up in places where he should not be, and fading away from places where he had once lifted her to the heavens. And she still needed to have his eyes on her that way, for it was the only way to save her beauty. But now, every night and sometimes into the morning, she cried knowing that he was indeed leaving her. She was no longer enough for him. She was slipping back into non-existence.

Finally he stopped seeing her at all. Her silvery white beauty simply melted away and she went back into the gray of clouds. She was ugly again, uglier for knowing that the wonderful magic of his attention had disappeared. Uglier for knowing now what could be, but would be no longer. “Back,” she yelled, in her strange garbled way, meaning “come back!” Her heart twisted. The clever words and sweet voice had gone. The townspeople grimaced at the sound of her voice.

Because she could move on her own again, though her gait was clumsy, she took to wandering long distances away from the village, because now it was too hard to go back to invisibility and ugliness. People had seen her beautiful, after all, and they could not help looking at her now with scorn for no longer being cloaked in that beauty.

She would often find herself at a large pond in a meadow, so clean that in fact it was blue. She liked the pond because it would not reflect her image; its blue simply bounced sunlight into her eyes. But she found that this light soothed them. And with the sweet gentle afternoon light in her eyes came the slow realization that she had actually been burned from the man’s searing glance. The spell he had cast had altered her sight by its fire. She understood now that though she was ugly, her eyes no longer hurt. How sharply they had burned, but she had not noticed because of the intoxication of beauty. She had not felt pain and blindness in her eyes when she had been beautiful, but now she knew that it had been so; not only had her heart hurt all the time, but her eyes had been scoured by him so that he was all she could see.

And so she came back to the pond more and more frequently, for she could feel her eyes returning to what they once were, though they were plain dull gray. Something in her heart had unclenched, as if it were a separate being. She would lie on the ground, by the banks of the pond, and feel her eyes growing soft and her heart spreading gratefully in her chest.

One afternoon by the pond, she felt yet another change. Her head was no longer light the way it had been with the man. But instead of making her sad, she was relieved because after all, this was her very own head. It would never burn inside. It was no longer hot and floaty, carved from ice by the man. It was the head she was born with, the head she was meant to have. And she was glad. For she no longer had to be afraid that everything would be taken away. She no longer had to be afraid, or look longingly for the man. When she realized this, her heart expanded more, until it was outside of her, and was wrapped around her like loving arms.

Now she stood up, encircled by her arms, yet stunned by the sensation of having an external heart. She made her way to the pond, wishing to feel the water on her face. Wishing also to understand what was happening. But as she got to the edge, she saw that the blue color of the water had disappeared, that it was only a reflection of the sky that had turned it blue. And if the water was clear, wouldn’t it reflect her?

She realized that if she looked now, she would see herself.

Shivering from an emotion she could not name, she leaned forward and there she was, her face wavering in the soft ripples, her big body embraced by her heart, which was now as large as the rest of her. The sparkle of the water lit up her shapeless image, and she saw so clearly her mottled skin, her ungainly legs. The light from the water caressed her eyes, which were now entirely healed. She looked at herself and was able to say, “Me.”

And though she could hear that her voice sounded crinkly like a dead autumn leaf, she was filled with a soothing warmth. She was so happy, because all her pain was gone, all her fear vanished, because at last she was fully herself. She stood up and the air shaped itself around her. She was visible, lit up by the light, assured by her heart’s warm hug. She was free. She was herself. She was safe. She was.

And she understood then — with a relief that made her cry for joy — that in being, she was neither beautiful nor ugly, she was herself. She had no reason to fear, she had no reason to hurt. She could think her own thoughts (though barely speak them).

And she lived happily ever after.

 

Here

She could not stop smiling. Her face was so warm, she was inside-her-own-face warm. “Nobody rises” they were singing in the background. His voice was like smooth terracotta, round, earthy, just so right. They were all harmonizing yellow, again, just right. A springtime of yellow. The new shoots from the ground were her friends, she’d kind of just made them, the friends. It was no effort. She had only experienced that one other time, and that was with Him. The sweetness of it, sun-warmed chocolate, back-of-your-tongue thick.

These people, each better than the next, and all the next and before, so so so beautiful. They make music out of the smokey air of winter Cape. Smokey but no one’s lit a fire. Why does it smell like a fireplace? No one knows. She had stumbled into a whole garden here. Every favorite flower in there.

She was just softly happy. Summertime in January, pink and plump and sweet.

Monday, December 18, 2017

The Boy Who Sang Like the Wind

Once upon a time, there was a very young mother with a tiny baby boy. At first the boy was happy, but he became very sad and quiet at times. The very young mother, who loved him very much, was worried and sad and did not know what to do for him.

She asked her mother what to do. “He’s beautiful,” her mother said, for she could see all of the boy’s magic, but she did not know how to summon it. “Give him other children to play with and you’ll see, he will be happy once more.”

So the very young mother went out to the garden where other little boys and girls were playing. The boys and girls were so happy. Their smiles ran free and light like wet watercolor paint. But the little boy was different. The sad little boy would not play with the others.

The young mother thought she should keep him safe in their little home with her.

But the little boy became more and more quiet and unhappy. The boy’s face was so beautiful, his hair shone like gold, but the mother worried because she knew that her son did not understand the world he was in, and that’s why he had gone quiet and still. She asked her wise old grandmother what to do. “He’s beautiful,” the old grandmother said, for she could see all of his wisdom but she did not know how to bring it forth. “He just needs you more now that the baby is here. Play with him more.” But the very young mother was playing and playing all day long and sometimes at night. Nothing would make her little boy happy or take him out of his silence.

The very young mother took her little boy to the wise man, who said that the boy was indeed growing differently from other children. And though he was the wisest man in the town, he still could not tell her what to do for him, except to get him to a school.

The young mother took the little boy to school. By then her heart had become as deep as the ocean, dark and lonely. The only thing that made her happy was her little babies, and yet her oldest son had no smile.

The teachers were very kind and learned women, who showed him pictures, letters, numbers. They read him stories. They sang him songs. They threw balls to him. Eventually, bit by bit, the little boy learned how to smile there at the school.

For many years the boy was able to make his face smile, but his mother, no longer young, knew deep down in her heavy heart that his real smile was deep inside him. She did not know how to make it come out.

Then one day the mother heard something strange. It was music, a song she’d never heard before. It had a rushing sound, like summer rain. She followed the sound and there she found another little boy playing music on a violin, with his father. This boy was like her son somehow; his smile was not like the smiles of other children. His smile was not for the outside but for the inside. And the mother had never seen this before, but still she knew that it did not matter — because it was a real smile, nevertheless.

She thought this was because he could make music. She sat there listening and listening to the song of the musical boy and she felt the ocean inside of her rise, up, up into the sunlight. She hurried to ask, “Can my little boy play music sweet like the rain, too?” And the father said, “Oh, yes, I’m sure he will like it.”

The father told her to take the little boy to a forest clearing where some young men and women sat in a circle playing music into the night. All around them were instruments of all kinds: drums, pianos, violins, guitars, and even some that the mother had never seen. The song rang out in all kinds of colors and sounds. At times the mother felt should could taste the music. And then, when they finished their song, the young musicians looked at her unsmiling little boy, and they said, “He is beautiful. What an amazing smile he has.” And they gave him a drum.

The boy played the drum next to the other boy and their music filled the forest. Their music was the forest in a thunderstorm. The mother watched and sometimes she thought she saw a tiny smile tugging at the corners of her son’s mouth. She brought him back to the forest every day and watched him from the shelter of some old beech trees.

Then there came a day when the boy put down the drum and stood up. He opened his mouth and sang his song, from deep within mountain caves. His voice was like none other she’d ever heard. It was tuneless, like the wind, and yet it stirred the leaves with its great power.

As the boy sang, the deep sea made its way out of her, through her eyes, and she cried and cried while her boy sang the song of the forest.

And when the boy finished that song, his smile broke free at last. It shone from his hair, his eyes, even his teeth. His hands smiled, too, opening and closing with a great energy. No one had ever seen a smile like that, because it had come from so far inside that it shone like diamonds from the deepest mine.

The mother knew it was time to leave, and she made her way back to her hut, her heart light and free. Now, at last, she could live out her years in peace.

And if she listens carefully, even in the deepest darkest night, she can always hear her son singing with the others in the forest, bringing the wind, the rain, and the sun.

 

 

Friday, December 15, 2017

Subtle and Overt Exclusion of People with Disabilities

At some point, I remember the joy I felt when I realized that I could drop Nat off at a given social group outing or event without staying, without a one-to-one. To be honest, my happiness was in part because it was easier for me, but I believe that Nat also enjoyed the freedom from the buffering aide. (Ahh, that universal burning resentment we parents and self-advocates feel about having to worry about the one-to-one accommodation for the extracurricular activities! Particularly joining in the “Neurotypical People” social activities. It’s almost always on us to find someone who understands our guy and it’s almost always up to us to pay for this accommodation. Only occasionally does the organization provide and pay for the aide but it is rare.)

I’m not saying Poor Me here. This is not about any sort of self-pity about all the stuff I gotta do as an autism parent. This is not on the autism. Or Nat. I’ll do anything for Nat, I’m his mom, that’s the contract I signed on November 15th, 1989 — no ink, just my soul. No, this is on the organizations who should follow the ADA, Americans with Disabilities Act of their own volition, or even better: simply provide it because they want our guys to take part alongside their peers, for God’s sake.

Why are we still in this phase of social cluelessness? I’ve been fighting this fight for Nat ever since he started having social anxiety and struggles to adapt to this stupid irritating sensory overload we call The World. Since he was three. That was 1992, folks.

There are still times when Nat can’t attend an event or outing. No one says directly “Oh he can’t handle it.” No one would dare. Well, actually, a few times they dared. And I am going to call them out right now: CASE Collaborative in Acton, Massachusetts did, and they are a special needs school program. Certain Speech/Language organizations did. Our local elementary school did (the principal said, “Oh he would be so bullied here,” in such a concerned voice. I kid you not). Jewish Big Brother and Sister did. They deemed Nat’s needs too intense for them. These places always claim they didn’t have the ability to train. Or the resources.

An elephant — particularly a mother elephant, like Dumbo’s mom who literally brought down the roof on those bastards — never forgets.

Are you — special needs organization, public educational institution, specialist, sports venue, theater — inclusive — or not?

If you don’t include, don’t you dare put it on him, if you can’t plan ahead for the appropriate accommodations. You are breaking the law but special needs parents or self-advocates might not have the resources, time, energy to take you to court.

Where is the Special Needs Fairy Godmother when we need her?

Excluding Nat usually happens in a more subtle manner. I learn about the circumstances of the particular event. I hear a few warning words like “hmm, is it for him?”  And then it is up to me to decide. Yes, it is up to me because if I ask Nat he will say “yes,” even if he is not in a place where he will be comfortable with the way the event has been structured. I know him, I know he will not think ahead about the parts he won’t like — he is just like me in this way. All I think about is, “Yay! I want to do this!” and I rush in and then — whoa, I can’t handle this.

Sometimes exclusion isn’t even about needing a better ratio of staff to participants. Sometimes the transportation will be a problem. For example, Nat will get anxious going somewhere in someone else’s car. Sometimes. So depending on how his anxiety has been, I might decide not to send him out this way. Or sometimes the problem is that the transportation will be making an extra stop. Nat hate extra stops. Or circling for a parking space is too hard for him.

I believe that organizations planning events must think ahead — ask the self-advocates or the caregivers ahead of time — what the issues might be and plan accordingly. And then do it. Pay for it yourself, don’t put it on the person-to-be-included. Or compromise, split the cost. It is as simple as that. Inclusion does not mean allowing people with disabilities to participate at your sufferance. Inclusion means being a team of equals, figuring out together how this thing can happen happily.

And let me just add that sometimes people are completely sincere in wanting to include and they are beautifully receptive to input. You can tell when it’s going to work. We very recently had a very good experience with a lot of hard work on both sides figuring it out and making it happen. I am so grateful for the mensches of this world.

But until you learn how to do this, you will not get to be with this guy. Your loss.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Friday, December 8, 2017

Sunday Boston Globe 12/10/17

Enjoy my latest column in the Sunday Boston Globe Magazine online now!

A Ziegfeld Mom

“I’m a Ziegfeld Girl,” Barbara Streisand as Fanny Brice says to her reflection in the mirror in the wonderful movie Funny Girl. She means she has finally finally made it to the top. She would now be one of the Ziegfeld Follies, who put on gigantic staged numbers in the early 20th century.

Ned and I use that line with each other when we feel we have gotten to a pinnacle in our lives. When the New York Times Magazine published my Lives piece a few years ago. Lives! When I was on the Today Show. When I was invited to the White House for a dinner. Ned’s had his share of such honors as well. More than once we have both been Ziegfeld girls.

Last night was a Fanny Brice moment but not for me. As usual on a Thursday night, I sat in on one of Nat’s band rehearsals. Lately I’ve been going to Nat’s private voice session just before band practice, too.  I crept downstairs to listen in. “Crept” because I wondered if he would be different when I’m not there. I think he is more relaxed without me. What would he sound like if he were more relaxed — not aware of me there? I guess I have a theory that my presence during his voice sessions make him anxious, make him think about things related to his time with me. He might associate me with home, the weekend, and his schedule. Maybe with me there he thinks about his schedule, rather than be in the moment of the song. And when Nat thinks about his schedule, he becomes excited/anxious. His excitement spills over into anxiety so easily. He waves his arms and rushes through the songs and slurs the words more.

As I tiptoed down the stairs to where he was having his lesson, I heard him speaking in complete sentences. Within the song, of course. It’s not that he’s expressing himself with complete sentences, but when singing, he speaks. He does not have melody for some reason. He used to have melody as a little boy. You couldn’t stop his “Frere Jacques” while on the T. Good thing he was so cute.

Well, he’s still so cute. And so his singing with a speaking voice is gorgeous. He has what I call a rapping style of singing. I heard him singing the words to “Accidentally in Love,” by the Counting Crows and, well, the words! “I’m in love, I’m in love, I’m in love…” Those words! His voice! His speaking voice.

Yes, I’m being ableist here because I am showing a preference for neurotypical forms of communication. But anyone who knows me has seen that I rejoice in any form of communication coming from Nat, that I am thrilled to hear him or see him identify a want or need. Speech of any sort — typed, spoken, signed, gestured — is the way we step forward into community space and declare “I am.”

But. I am a flawed human and I am an honest one, and so I must declare for myself that I loved hearing Nat’s spoken sentences, especially in the context of a song.  Interesting, too, that he does not use melody, so the words seem even more real to me.

Then came the odd moment of Nat in band rehearsal afterwards, and his words are much less intelligible. It may be the loudness of the other instruments around him. I sense an almost panic in his delivery during band, where he is struggling to keep up, to perform. I suppose that is okay, because he is a musician in this partnership with the others, and he does have to keep up as best as he can. But I don’t want him to panic and feel anxious.

But I don’t want him to stop growing, either.

I wondered if there will be a time when the others around him, although they are developmentally delayed themselves, will resent his delivery. I confess that I look for it. I search the other guys’ faces for disdain of Nat’s more severe struggle with speech. With enunciating the words, with keeping at the right pace.

There is no such disdain, except me for my own weak shame. Shame is one of the worst emotions we can feel. Shame can immobilize you, it can silence you, it can make you hate yourself. It can make you cringe like a kicked dog. When actually I should just be howling at the moon in utter joy about how my challenged son is a front man in a rock band.

Hello, Gorgeous.

 

Friday, December 1, 2017

All that’s gold may not glitter

The name, or the concept, of “group home” is not pretty. I’ve heard people say, “we need a new term for group home.” The term falls from the lips like something dry and dusty. It’s a dead end. Ugly.

If a group home is run well, though, it is beautiful. Look below at a typical monthly calendar from Nat’s group home. What you should notice is that the activities are not necessarily blockbuster Disney-level exciting things. But this does not matter. AT ALL. What matters is that they follow this monthly calendar pretty much without fail. The manager gets it to us right at the beginning of the month so that the families can plan around it. The families let the manager know which weekend events their guy can go to. The golden nugget here is that there is communication among all involved.

The activities are not glamorous, but neither are my family’s. A lot of it is just operations of daily living. The things they do are just what a home might do, night by night, just living a life together. Sometimes it’s food shopping — whomever of the housemates wants to go. Sometimes it’s just a movie on tv. Sometimes it’s baking. Sometimes, though, it’s a trip to Dave&Buster’s or Sky Zone. Is your Netflix binge so much more uplifting?

In addition to the group activities, every individual in the home has one night a week that is one-to-one with the same staffer every time. This builds a relationship and a structure, around all the other structure written into the calendar. Nat goes with P once a week to his music class at the Teen Center, and P hangs out at the Teen Center, shoots hoops, listens to music. Nat is happy, P seems happy. I go and greet P and watch Nat practice. P brings me the meds Nat will need for the weekend — I must sign for them. It is all very official and yet very very natural and personal.

When I first heard about this weekly one-to-one, I thought grimly, “Big deal. That’s not much!” But now I see the beauty of it is that it is actually always done. Other poorly-run group homes may sometimes have the opportunity for more one-to-one, but is there a plan? Is it predictable? I think that we all know how important predictability is to our guys. And to us. Because if you know where your guy is most of the time, that is a lot of security right there.

Yes, in the group home the television is always on. Oh, how parents hate that. But I think the TV on is fine. Like it or not, the television is now the hearth, the way the radio used to be for people before TV. The way the fire was before that.  In our home it is not the television that is always on, it is our laptops. It really just depends on your social class or your own preference.

Group homes go out in an ugly van. For many, the group home van has symbolized all that you don’t want for your guy as an adult. It’s gray and it seems so dead-end. Right?

Well, think again. The van fits all of them like it does your soccer family, and it makes it easier for anyone who is having mobility issues to get in and out comfortably. It’s not a BMW X5 or a Volvo or even a CRV. Nope, it’s an old Toyota minivan.

So. What. It means they are out in the world, comfortably, dependably.

A big part of autism adulthood is getting past how things look. The guys may not be cute little boys. Maybe they don’t dress well, maybe they don’t have dental plans. If you are an upper or middle class family in America, you are used to “nice things.”

If you’re upper middle class you may be used to prettier cars, houses, vacations.  But now, in adulthood, in a group home, the guys are in a staffed home together and that in itself is very expensive. The staff live on a shoestring. They work other jobs. But here’s the beautiful thing: most of the staff has been the same for Nat’s entire first year there. I know who will be on when. I have an idea of his day-to-day life.

So no, the money just isn’t there for the shiny things. Group homes are not shiny. Not all that pretty.

And yet to me, dig deeper and you will see that even though something doesn’t glitter, it may still be gold. This monthly calendar — its very existence, and the fact that I know it will be followed — this is as shiny and beautiful as a trip to Bermuda.

December Recreation Calendar

Sunday Monday Tuesday Wednesday Thursday Friday Saturday
  1

 

 

YMCA

2

 

Movies

3

 

Decorate for Christmas & make ornaments for tree

4

 

 

YMCA

5

 

Bowling League

Dunkin Donuts

6

 

Library

7

 

Karaoke

 

 

NatB 1:1

Music

8

 

YMCA

9

Ice Bar in Fanueil Hall

10

 

 

Flaming Grill

11

 

 

YMCA

12

 

Bowling/

Dunkin Donuts

13

 

Library

14

 

Bake Night

 

NatB 1:1

15

 

 

YMCA

16

 

 

Movies

17

 

 

NatB Concert

Party afterwards at NatB’s house

18

 

 

 

YMCA

19

 

Bowling League

Dunkin Donuts

20

 

 

Holiday party at [nearby] group home @ 6pm

21

 

 

Families’ Gift Exchange

22

 

 

YMCA

23

 

 

Dave and Busters

24

Hot Cocoa &Cookies/ Watch Christmas Movies

25

 

CHRISTMAS DAY

26

 

Bowling League

Dunkin Donuts

27

 

Library

28

 

Make Pizza

29

 

YMCA

30

 

 

Movies

31

 

NEW Years Eve

 

Chinese Food

 

 

ALL ACTIVITIES ARE EXPECTED TO BE COMPLETED! Please inform the manager immediately if this is not the case. Thank you- Management

Wednesday, November 29, 2017

Revisit Those Memories

In some people with autism, there can be what appears to be an acquisition of skills and then a loss of them. People have asked me over the years if Nat lost skills. Tough question. My feeling has always been that skills showed up and then became quieter while he was working on other skills. I never believed that they disappeared entirely. He has always developed skills and returned to them. His development has not been linear, however. It is more like a series of loops but always a growing chain of them. For example, at certain “age-appropriate” stages, he has rejected typical toys or activities. Lined up by didn’t play with Fischer Price people; mouthed a ball; stared blankly at T-ball. Just lay there on his back in a pool during Mother-Infant swim class. Now I know: he never cared for those kinds of toys, and baseball just leaves him cold. But he does love basketball. This happened at age sixteen or so. And now his swimming abilities are legendary.

Development happens at any age and just keeps on happening. You must keep your eye on that truth if you are an autism parent. Try, try to return to those earliest days and see your child back then. See how much he has grown and changed and has become colored in. Go back in time and find the joy you had to have felt at this child of yours. Or see it now and rejoice in his uniqueness, feel that in your heart there is no one like him and yet he is also Every Baby.

It is infinitely interesting to me to go back in time and look at Young me with Baby Nat. Despite remembering so much sadness at not understanding my budding Autist, there was so much happiness, too. I wish all of you had journals to look back on, so that you could feel these blissful feelings you must have had with your infant autistic baby.

January 3, 1991, Fourteen Months Old:

We watch Nat in his crib at night. I really could stand there forever and the longer I do, the more I feel the need to laugh. It’s an odd kind of laughter that makes me shake and also feels close to crying. I have discovered this feeling in relation to Nat. I think it is what bliss feels like. That lump in my throat.

Nat sleeps in such a cute manner. His breathing is little puffs in and out in very small degrees. You can tell how small he is from the little breaths he takes.

His eyes are very puffed and round when closed. His whole forehead looks even more rounded in sleep. His candy mouth is slightly open and utterly at east, surrendered to his happy sleep. His little rounded arm is often close to his mouth with the thumb sticking out as if he could suck it at any moment. We hear him downstairs; suddenly there will be a chirping from the automatic sucking.

Best of all, his littlefoot sometimes escapes the blanket and hangs out from the crib, between the bars. It is all of 4 inches long, but chunky.

And of course the smell that lingers over the crib is pure perfue. And it is not merely baby powder and scented drawer liners. It is him; his essence, released during the peace of sleep, and lingering above him like a sweet cloud.

April 29, 1991, 18 months old:

Before I forget! Some cute/great things Nat does.

1) “sshh — aaah!” Screams and then says “ssh.”

2_ “Tee” means he wants to brush his teeth.

3) “Ah-hah” he wants something, probably a drink.

4) Offers up his arms to me to be picked up.

5) Delights in seeing his stuffed animals sitting in a chair, on the couch, etc. Fuzzy Lambkin, Russ, Dakin, Horsey Guy.

6) Calls cat “cah”. Calls dog “cah”. Calls Teddy Bear “cah”.

7) Says “Ma-ma, Ma-ma, Ma-ma” in a little soft singsong. Ned is “Da Da Dah.” Melts in your mouth.

8) Does “Eensy Weensy Spider”: Waves his arms in a circle saying “ahhh derrrr ahh.”

9) Yells and shouts a complete range of noises and sounds like a language but are not.

Finding these journal entries are like when the color comes on in The Wizard of Oz.

Tuesday, November 28, 2017

11/29/17 CALL YOUR SENATORS!!!!

Here is an important (abridged) message from the Autism Society of America which basically BEGS you to call your Senator and tell them “NO” on the Tax Bill

CALL 202-224-3121

Background
On November 17, the House of Representatives passed its version of a tax bill.  The Senate Budget Committee passed their version today. A final vote in the Senate is expected Thursday.  Both bills are extremely harmful to people with disabilities. A conference committee may have to work out the differences between the bills, meaning that provisions in either bill could end up in a final tax bill.

WHAT IS IN THIS BILL:

  • Increases the deficit significantly to provide tax cuts that disproportionately benefit the wealthiest Americans and corporations.
  • Leads to cuts to Medicaid, Medicare, Supplemental Security Income, and other critical programs for people with disabilities in order to reduce the deficits and debts incurred by tax cuts.

The Senate bill ALSO includes a provision to repeal the individual mandate to obtain health insurance. The individual mandate is a central part of the Affordable Care Act (ACA) which greatly benefits people with disabilities by eliminating pre-existing condition exclusions, banning annual and lifetime limits, prohibiting discrimination based on health status, and much more. Repealing the individual mandate will:

  • Results in almost 14 million people LOSING HEALTHCARE COVERAGE (according to an analysis by the Congressional Budget Office (CBO)).         
  • Increases health insurance premiums for those purchasing coverage on the exchange by at least 10% for the unforeseeable future (also according CBO)·         
  • The CBO analysis also says the repeal of the individual mandate will save approximately $330 billion (because of the large number that will not be insured) over ten years.  This money will be used to pay for a making the corporate tax cuts permanent and to cut to the tax rate for corporations and individuals on the upper income scale.
  • *****According to the Tax Policy Center, the Senate plan shows that 87 million households earning less than $200,000 will get a tax increase under the plan*****

We have a VERY short timeline to stop this very harmful and unpopular legislation.

TAKE ACTION: CALL 202-224-3121

  • Contact your Senators NOW. We only have days to defeat this! Autism Society is co-sponsoring a national call in day on Wednesday, Nov. 29. Call your Senators.  Use the Capitol Switchboard number 202-224-3121 and ask for your Senators.
  • Participate in a Tax Plan Protest Event.

WHAT TO SAY

  • I am your constituent and a member of the Autism Society.
  • *******Please vote NO on the Tax Cuts and Jobs Act.*******
    (That is the most important thing to say. Say the rest if you can but be sure to say VOTE NO ON TAX CUTS)
  • This tax bill will hurt people with disabilities and their families.
  • Do not repeal the ACA individual mandate.  This will further destabilize our health care system, raise premiums, and could lead to my family losing their health insurance.
  • We cannot afford these tax cuts that disproportionately benefit the wealthiest Americans and large corporations.  
  • Tax reform should not be rushed.  People should have time to understand the bill and how they will be affected.
  • This bill will lead to fewer jobs for people with disabilities.
Monday, November 27, 2017

Muzzle the Puzzle

Maybe you noticed, maybe you missed it. Something is different on my website. The puzzle piece is gone. Yeah, it was only like a glass puzzle piece — see-through and benign — but still. A marker for those looking to think about autism. It was there for the last twelve years, since the very beginning of my blog.

This symbol was to show people that this was an autism blog, even though I have always insisted it was simply my blog. I would write about anything I wanted. Bellydance, love, bike rides, writing, teaching. My two other sons, Max and Ben. But I don’t write about any of that all that much, it turns out. It pretty much is an autism blog. I don’t feel that I’m allowed to write about Max and Ben, really. It is embarrassing having them (maybe) see how I feel about them. I still do it, though. I need to. But I feel like I have to temper such declarations of motherlove, or be careful disclosing anything too much their own. I post on Facebook how I feel about them, do the usual brags we all do on Facebook, little sentences couched in humble, seemingly-innocent wrapping. Soften the blow of our happy lives with that cushioning disclaimer of “I don’t mean to brag but look at this beautiful/great/funny/serious/smart thing I did/found/thought of/hate/love.”

(I really hate Facebook. But I truly see its benefits. I’m gonna use it for what it’s best at. But that is not what this blog post is about.)

So why can I write about Nat? Well, I just feel that I can. Why? Because he probably won’t ever know. How shitty is that? Welcome to my shitty blog, which is a bit about autism and all my feelings about it. It just is.

So I’m redressing this somewhat by at least no longer claiming so falsely that autism is a puzzle, that my oldest son is a question mark. You know what the question mark is in this life? EVERYONE. I don’t understand why people do what they do, so why should Nat? Everyone else has developed layers and layers under which they can hide their confusion, their mixed feelings. I guess Nat has developed his “self-talk” as his layer, as well as a comfort. But he’s not to be looked at, looked down upon, as a puzzle! That is just so offensive.

It’s the rest of us who are puzzles.

Saturday, November 25, 2017

Stop talking about him in front of him.

What is it like for Nat to have people talk in front of him about him? Even when they are being kind, loving — wanting to know what this gesture means, what is he trying to say — it makes me so sad for him that others talk in front of him. It makes me angry at myself for not being able to break apart from the interaction and tell these others that they should not talk about Nat in front of him; they should talk to him. What is wrong with them? What is wrong with me that I cannot stick up for him when I should? I’m so much more worried about destroying the otherwise pleasant interactions in the room? I hate myself for not being able to say it.

Sometimes I do, though. Sometimes I say, “ask him.” Sometimes I say, “leave him alone.” Sometimes I say, “he’s right here!” and I smile to soften it, to not embarrass them too much.

Other times I lead by example. If they ask me “blah blah blah why does Nat blah blah blah?” Or “Would Nat like blah blah?” I say, “I don’t know, hey Nat! Do you want blah blah?”  Or if Nat cannot answer because somehow the words are stuck somewhere — I hate sticky words, I could just kill them — sometimes I say, “I think you probably don’t like that, Nat?”  I go with my instinct of what his answer might be, and I include him that way. It’s the best I can do.

Why can’t others do their best? Why are people still so clueless about this? Is it because I do not explain this every time? Why is it so hard to act in the moment, particularly when my own dear son’s personhood is being distorted?

I look at Nat when he is not singing, when he is not the star up on stage — I haven’t written about this, but he has joined a band and now sings! He is so happy up on stage. Never happier. This band is like Special Olympics is for him — it is a big beautiful world that opens wide for him, accepts him, teaches him even more, and then is awed by him. This is the opposite of what we get from the others mentioned above. Those others do not know the Nat on the stage. They don’t know his sharp bright smile, his intense focus, his adult body language, his charisma. His bandmates do. The other parents do. The teachers do. The audience does.

But what about the majority out there who does not see him sing or swim? They see my pictures of him, if they even give that much of a shit, but is that enough? Evidently not. They still must patronize him. They leave him out of his own conversations. They don’t see him. They don’t know him.

This ignorance, this dismissal is the very thing that first forced me to write about autism. I was writing about Nat because I knew about Nat. I knew how much real human space he takes up in this world, and I know how some do not see that, they don’t see him. It kills me that they see so little. That they see a two-dimensional Nat. I write in the hopes of making Nat and others like him visible, real, human, three-dimensional. I write so that you people out there who speak in front of him like he’s not here will open your eyes and maybe shut your mouths. Let him speak. If he’s silent, then he’s silent. If his speech comes through his hands, his gestures, his expression, his closed eyes that just cannot look at you the way you need him to.

Like Nat, I just cannot always speak up. So I need you people out there to do the right thing and talk right to him.  Nothing about us without us? Nothing about us without us especially while we are right here with you in the room!

Oh, and one more thing: try asking him about his day, his jobs, his band, his favorite activity. Wait for an answer. Repeat if you don’t get one. But please, include him.

Monday, November 20, 2017

Taking Nat At His Word

Where I last left off in this blog, we had dipped our toes into the world of Facilitated Communication. Nat had gone to two sessions. He’d typed with the therapist’s hand under his wrist, his pointer finger poised at the screen and the stuff that came out was extraordinary, breathtaking.

But in the end, I just could not believe in it. At the time, I wondered if I was betraying him, if this was his True Self, finally coming out. But the sentences just did not sound like him, other than in one or two instances. Yet I was to believe that just because a therapist (a person he’d only just met) supported his wrist in a particular way, that he was now typing what was in his soul, not simply the usual words shredded by his tongue. Never mind that he types independently on Facebook. No, this new approach was supposed to override all of that, as if all of his previous struggle to speak and communicate with us counted for nothing. The sentences were so long, not his clipped, economic use of only the necessary phrases. The first revelations were about how he loved me and how his brain was all there.

Rather than making my heart soar, this was what made me have my doubts — not about his brain, or his love, but about Facilitated Communication. Why in the world would Nat think I needed reassurance — about his brain or anything else? Our relationship is healthier than that. We are bonded unalterably. We take our love for granted. No, he does not say “I love you,” of his own volition. So what? Why should I be so vain as to need to hear that from his mouth? Parents are supposed to be there for their kids, not the other way around. My two neurotypical sons rarely just blurt “I love you, Mom,” except maybe on my birthday or if I’ve been sad about something in relation to them. It’s a high when they do. But it’s not my focus. Hearing “I love you, Mom” is definitely soul-satisfying, but the more important thing is how are they doing/growing?

And from Nat, who has a hard time speaking: I cannot expect “I love you” out of him, except in echolalia.

And as far as believing in his intelligence — I have nearly two decades of written evidence that I believe to my best ability that he is indeed competent and comprehending. Original, unique, loving, beloved. I don’t need a typewritten intentional testament to believe in Nat.

****And if you are using FC and feel good about it, then take that and run with it. ****

But now I gotta ask, why in the world would I disregard all of his labored utterances as well as his noisy silence out of some need to hear him sound like a Hallmark Card Man? When in fact, Nat is always communicating, always telling everyone what’s on his mind–it’s just that I don’t always know what he’s saying. But if a human being sits there and speaks in sounds that make him smile and laugh, he is indeed sharing with you that something is making him feel happy. If he sits there and then jumps up and starts flailing his arms and walking around really fast, you can assume that something’s on his mind that he needs to express. And so he is. Or he needs to express it stronger, so he finds another way. Sometimes it works, sometimes not. Okay, we are all works in progress.

There are at least three ways that Nat has always communicated: the tuneless phrases that answer our questions and tell us not to deviate from our promises, our schedule. The singsong self-talk that I believe is compressed or elongated meaningful words that he does not want to say directly, or cannot say directly. (“Mah-ee” is Mommy. “Wheels,” might be wheels, but it might be something else because it always makes him laugh.) Finally, there are his physical actions, the way he listens with his whole body when we are talking about events to occur. The way he jumps up to do any favor I ask of him.

I felt so guilty at first for having doubts about FC. Here was Nat, typing sentences, using “you” and “I” correctly, writing about the past, the future. Using metaphors. How could I not support that?

I asked him if he wanted to go back. But after all the wonder we expressed at what he’d written, and all the praise, Nat took no time at all to answer, “NO.”

And that’s a word I can believe.

 

 

 

 

 

 

Sunday, August 6, 2017

But is it okay?

Every time I drop Nat off at his group home my body goes on extra alert — trying to sniff out anything untoward or bad or depressing or neglectful or dirty. I never find it in this place. Okay, the television is always on. But ain’t that America? You choose the technology to sink your face into all depending on your age, your culture, your social class, your preferences. So eggheads like Ned and I are always facing open laptops. Millennials like Ben and Max are always on that phone. Slightly older people I notice have iPads so they can read with huge letters. And group home staff often have televisions on. Ain’t no crime.

So I stand there and I feel and feel and feel — the air around me, the sense of things, and open my eyes extra wide. Nothing. It is safe.

And Nat is willing to go and stay there. He does whatever we want, whatever we need. And we, on the other hand, try to give him pleasing variety. We break up the weekend usually with Nat being here one or two of the weekend nights. We work it out with him: “You want to come home after breakfast, or before? Go back for dinner there?” We give him choices. We write it in with him, on the weekly calendars that settle on surfaces throughout our downstairs like leaves. I almost never recycle Nat’s calendars because sometimes he likes to study them even if they are over.

So we settle on his schedule and we bring him back. He runs upstairs, comes back down, sits on one of the couches. I bend towards him to kiss him goodbye and we exchange a glance. I think that I see in his eyes something — not sadness, but not happiness — but I don’t know, do I? Not wariness, either, thank God. But not peace. What I read there is that he is willing to go back but what if he’d rather stay with us?

I feel — or fear — that he’d prefer to live with us, and just go out during the day to his program where he volunteers all around greater Boston or takes hikes or goes to museums or bowling or kayaking. I have no doubts about his day. Neither does he. And while he loves it when I pick him up from there on Fridays, he is okay with going to the group home, too. Maybe more than okay. If he didn’t like it, he’d tell me. Right?

As long as he comes here at some point on the weekend. So — is it okay, what we do? What if he would prefer to live with us? Should he?

He thinks he’d prefer it. But would he? I think sometimes he’s bored out of his gourd here. Here there is very little routine, other than meals. The structured activities are few and far between. I ride my bike in the morning and he comes with me. I drop him off after a three-mile loop and then I continue on my own for another hour. He seems okay with that. I don’t think he’d do well going with me everywhere else for another twelve miles because there’s too much noodling, no definite plan. I don’t know.

He goes from couch to porch to playroom to his bed and back again. He refuses books, movies, music. He wants snacks, walks, friends. We can’t give him that all the time or even a lot of the time. He waits in the kitchen, silently telling me he wants a snack, or needs his meds. But at his group home, there are a lot of activities, and they also say he initiates a lot. They have late afternoon activities — the Y, bowling, shopping — and then dinner, then showers, then bed. Thursdays he goes to music. Different guys go out with him, and different staff. Variety and schedules, dependability. Kind people. Lively roommates who notice him.

Ned and I think the group home is great. But I wonder if Nat believes he’d rather be with us, boredom and all. So am I supposed to take him home? Or am I supposed to be helping him live with others which is the natural way of things? Eventually he will have to live with others. There won’t be anyone to take care of him once we’re gone, other than the group home. That’s a reality. And if he lives with us for decades more, how will he feel moving out when the time comes, and he’s 60? But am I supposed to think that far ahead?

Is it right that I feel relief, too, when I walk out of the group home and then feel excited about being alone with Ned? I know I’m supposed to have a life of my own, and I do. But is that fair to Nat, if he’d prefer living with us?

And what if it’s just kind of an anemic wanting? What if he’s okay enough with staying there?

A friend of ours sees this all black and white. His son is in a group home. He fought to get him in there. He says, “Hey, he’s got it good! He’s got a roof over his head, people to take care of his every need, things to do. That’s better than most people on this Earth.” I love this friend’s certainty, it’s like a cold glass of water on a parched day.

But then I’m back to just me and my wiggly certainty, my fears. My deep muscular love for Nat, for my boys, where I want everything good for them. And even when something is pretty darn good, I worry: is it good enough?

Tuesday, July 25, 2017

Playing for Real

There are aspects to taking vacations with Nat that are unchanging. Because of his chronic anxiety there is always the need to think ahead and to plan so that he won’t be upset. There is always the spectre of his getting upset in the worst possible places like the beach or restaurant, or a store. Even when he’s not upset he’s very pronounced in his actions, his activity; he invites staring. Yes, it’s wrong for people to stare but they do. So for all of his life that’s one of the biggest things that has not changed: my discomfort of being with Nat in public.

My discomfort does not overshadow my joy in him, however. For the most part I feel great pride when I’m with him in public because he does not act out, and he really keeps himself together. Even when he’s doing his stimmy stuff he is so gorgeously outre, so vehemently himself, that I just feel so much love and admiration — along with a deep burning sense of outrage that the public does not. Plus I understand that the stims have a real purpose:  he is trying to organize himself, he’s trying to be comfortable in a world that greatly overstimulates and confuses him. His stims make him feel good, so they are good. I wish everyone else would understand that, but I think that if we just keep on taking him out there and making people familiar with what he does, maybe someday stimming will be much more widely accepted.

Certainly the worst part of being on vacation with Nat is how uncomfortable he is because of the necessary lack of routine. At some point, probably 10 years ago when he first started to live in group homes, we decided to have Nat stay with us on vacation for shorter periods of time than the rest of us. This is one of those terrible choices that we had to make and we still have to make in order to have a good time on vacation and please everyone — including Nat. This is not ideal but it’s the best I can do — don’t fucking judge me. This time, when he went back he seemed confused that we weren’t going back too. He took out our suitcase and wanted us to pack our clothes. He got more and more upset, hitting his head, talking loudly. I tried to get him to talk — so did Ned — but it’s hard for Nat at these moments. I felt really bad that I hadn’t given him the choice to stay the whole week. But it was too late to change the plan — we didn’t have enough meds for the whole week. And — ugly honesty —  I needed a break from the sheer effort of keeping Nat happy on a vacation.

We talked simply and to-the-point with him about what was happening, going over the rest of the week on his calendar. And he saw that the salient points were still the same: kayaking with day program tomorrow; Mom and Dad come get you Saturday.

I was/am so sad about having upset him and also giving him a shorter vacation. Eventually I told him that he gets too anxious on a full week of vacation and that it’s good that he has activities at his day program like kayaking which he’s going to do tomorrow. I said some people can’t do a long vacation. I tried hard to tell him the whole truth. I will try to figure out a better solution next time.

Even if I screwed up his departure, there are good things I did with Nat on vacation. I tried to figure out something that we can do together everyday that I consider quality time. On this vacation we rode bikes to my parents house on the cape and back everyday a six and a half mile ride that was really nice. However hard it is to ride with him on roads and to always be looking in my mirror to be sure that he’s okay I have this raging pride in the fact that he does so well on a bike. He goes as fast as he can but if I ask him to slow down he slows down he stops at stop signs if I do he knows the way I let him take the lead as often as I can. I want to yell out loud “this guy is autistic! Really disabled. BUT look and see what he does!!!! Can you, you staring judgemental asshole?”

Bike riding with Nat is a very conscious activity, where hyper-vigilance is required. Still, I can relax enough because I am confident in his ability to be safe. But there’s another kind of thing we do together which is the best, when we just fall into an activity. We just play. It happened when we went to Disney together. It happened when he was 12 and I was tired, and he was annoying, and we were on the couch together. On this vacation it happened when we worked on a jigsaw puzzle together. This is something he and I never do. And it was a significant size: a 300 piece one. That evening I found myself craving to do a puzzle. And without thinking too much about whether he’d say yes or know, without anticipating disappointment, I simply invited him to work on it with me. When I really want to do something with him I get strong and confident and he knows it and he wants to do it with me. He knew this with the biking and he knew this with the puzzle.

I don’t know what it is that I do that makes him aware of this and makes him feel like he can do it — yes I definitely feel like somehow confidence is a part of this a part of his communication challenges. His social reluctance feeds on his perception and his decoding difficulty, and vice versa. So if I feel confident in myself and in him he does too and then he wants to do the thing with me. Ah, but not always, and there’s the rub.
The beautiful things that I get to do with Nat are all the more special because they’re often surprises. I don’t realize at first just how strongly I want him with me. And I get surprised when he wants to.

But there we were picking up the pieces, turning them this way and that, trying to fit them in. Occasionally he would just look up and stare at me. Stare at me. I tried not to make a big deal of it. But I felt so flattered. I felt like I mattered to him. Stupid neurotypical me needs so much more feedback than I get with Nat. But that night, there it was. Was it as simple as I wanted him with me, no strings attached, and he then wanted to be with me? Oddly enough, the next day when I desperately tried to get it to happen again, he refused. All he wanted was to crumble the puzzle up.

So what made that night happen that way? Is it because neither of us overthought it? Is it just that we have to kind of sneak up on each other?

Monday, July 3, 2017

The Third of July

July 1 was my wedding anniversary. July 3 is an anniversary, too — but a terrible one. It’s been exactly a year since Nat came home with a big bruise on his chest and we then discovered he had fractured ribs. The state investigation yielded no clear findings, no evidence of abuse or neglect. We will likely never know what happened. And we have to grapple with the painful fact that Nat could not or did not tell us that he was in pain.

I had him come home last night for a special cookout because I knew he was going to be at his day program today and then at his group home for the Fourth. They are planning a cook-out with two other houses, so it sounded like it would be a pretty good celebration for him. We are not doing much of anything here, so I figured it was okay to have him be there on the holiday.

But family holidays should be family holidays. Even when the family doesn’t have a clue how to celebrate. Ned and I were going to go on a bike ride together today and Nat would probably enjoy it, but he is at his day program.

Driving in the car with him next to me, hearing the rise and fall of his self-talk, I felt the pain ball up tightly in my chest, but I told myself not to cry, not to show it. Not until I’d dropped him off at the day program. Why why why do I feel sad, I wondered. So sad, and yet he’s going to be having a nice enough day at the day program. And a cook-out tomorrow at the group home.

What makes him happy? I wondered this as I always always do. Looking around desperately for something that would connect us, I glanced at the radio and switched from NPR to Magic 106.7 — his favorite. I should always play it when he’s in the car but I can’t stand it. This selfishness I allow.

We were early at the day program and he said, “No early,” because he wanted to go in — either because he likes it or because it is the routine — (or both). So I decided we could spend a little time at a nearby farmstand with a muffin. He ordered it himself at the counter, the guy understood and did not make me corroborate what he thought Nat had said. One small victory. Nat ate the muffin in the front seat, coating his lap with a soft yellow layer of crumbs.

He was greeted by the assistant program director when it was time to go inside, and he walked in without looking back. I had to call him back so that I could get a Goodbye Kiss.

Is it okay to bring him to a carefully-manufactured adult life, and not keep him with me? On this most terrible anniversary, I cannot feel it is. I kept driving, though. Some part of me must feel that this is okay for him. He can’t live with me forever. Although he did for eight months last year after we discovered the injury.

The plan is for him to live very very close to me and be an intrinsic part of the family life while also building a life apart. He is doing that, but is it a happy life apart? The rolling cadences of his self-talk seem smooth but quiet. I suppose that’s good. Anxiety, for Nat, is clear and sharp as broken glass. So he’s not anxious, right?

But I can’t escape the press of sadness against my eyes, so at odds with the bright sun of the Almost Fourth.

It’s the Third of July, a date that now might always spill darkness over the Fourth’s majestic lit-up night skies.

Wednesday, May 3, 2017

A Return to the Institutions?

Today on WBUR.org, (Boston’s NPR station), I wrote about the potential devastation to access and community inclusion of guys like Nat (people with developmental and intellectual disabilities) if the current GOP healthcare plan should pass. You can read it here.

Thursday, April 27, 2017

Little Red Motherhood

Nature is red in tooth and claw. — Alfred, Lord Tennyson

Mothers are even more. — Me

Still not over it. Nope, so don’t expect that I’ll move on. Or rather, it has morphed into something else. Action. My grief over what happened to Nat — maybe it will always be with me because of the responsibility I bear. Because I failed to keep him safe. Twice. Yes, there was a quieter horror, lower down, in the shadows of an X-ray. There lurked the other, older healed broken rib.

No, it was not my fault, of course not. I would rather die than hurt Nat. Any of my sons. Take the bullet, no question.

We don’t know how it happened — violence or an accident that was then overlooked.

The other day I interviewed a psychologist who has made some inroads into treating trauma in people with communication disorders, people who cannot easily tell someone what happened to them. She was very insistent upon the likelihood that this will happen again. That the numbers of people with disabilities who are abused or traumatized are higher than the non-disabled population. The CDC backs this up indirectly — the research seems to be only about children with disabilities. But if you extrapolate — 1) the disability doesn’t go away, and 2) neither does some degree of vulnerability. Couple that with the low pay and lack of training for adult caregivers — as opposed to special education teachers — and you have a far worse situation.

Emotionally I’m back where I was when Nat was first diagnosed. I am at sea, nothing but my husband to hang onto. He’s a rock, an island of safety but he knows only the other half of what I know. Together we come up with some strategies of how to deal swimmingly with autism but it is in the end shit we made up. Our best idea was the Nat books (I also called them Crisis Stories). You would know them as social stories but I invented the Nat books before I even knew Nat was autistic. 1992. Carol Grey had only just invented hers, in 1990. Anyway, I sure didn’t know about them. That would have meant that I knew Nat had special needs, and I did not. Another failure. I did not stick up for myself, and consequently, for Nat. I knew something was going on with him but I did not push the doctor. Anyway I think the Nat books are better because there are actual photos cut up to fit Nat’s needs — not stick figures. (Stick figures are abstract; how would that work at all with my concrete thinker son?) And the sentences are simple but not insultingly so. They are written the way I talk to Nat. I wrote a Nat book about his traumatic event from July and he seemed to really be drawn to it. But then he took it with him to the group home and so now I don’t know what he does with it.

Surprisingly, I have not talked to Nat a whole lot about what happened to him. I am afraid to because I don’t know if that’s what he needs. But the other day I tried a new thing: I created a Nat book about rules he should follow. The rules are actually things like the right to not talk, the right to eat what he wants. The necessity to tell me, Dad, or anyone in his caregiving circle when and if he’s been hurt. Or if he’s sick. I spell out that no one may touch Nat on the penis or tush. I have to do it that way to be absolutely sure he knows what is what. No one may hurt Nat.

I also put in that Nat has the right to live where he wants. And ever since his injuries, he has made it clear that although he likes his group home, he would prefer to sleep and eat at our house. I take that very seriously.

Although — I have to add — that Ned is not convinced this is true. Ned thinks if we put things on the calendar he will prefer what’s on the calendar, whether it’s to sleep here or not. This may be true.

I am beyond relieved that he is happy living at his group home for some of the week. But I cannot just ignore the fact that he wants to be with us more than them. Anytime he’s given the choice of where to be, it’s our house. [Although like I said, this may only be because of how we offer the choice.] Nothing to do with the amazing manager there, the warm staff. The staff is frankly wonderful, on top of everything, they make and keep schedules, they smile, you know…

But I have decided that this is what must happen, someday, maybe soon:  My future will eventually be wrapped up with housing him, keeping him not far from my wing. Not keeping him in a bubble, but a nest right below my nest, same tree. In giving birth to my boys I did not realize that I was entering into an irrevocable contract. I was to nourish them, nurture them, educate them and help them grow up into wonderful capable adults. Then stand back and let them do it.

But if they cannot at some point, I will be there for them. And right now, Nat cannot do it. I now see that. He will always need my protection. And so he must have it. This is an axiom in my life, as true as I need to breathe oxygen and I have found my soulmate in Ned. The truth is that if my sons need me, then I will drop everything to help them. Right now, at this point in his development, Nat needs me, and needs to live at least part-time with me.

Ned and I are now looking into selling our glorious home and buying a two family with the downstairs apartment for Nat, a friend, and a caregiver. Tying up all our assets in that. Not a green golf course pied a terre in New York retirement.

Too fucking bad. This is my path. My children. This is how I feel I can keep him safer. It may not even have rational truth to it, but it is what I feel I have to do. It’s not a beautiful declaration of pure white love, it’s not some noble thing. It just is. A raw and heavy truth, with piercing claws. I’d have to rip my heart to get them out.

Nope, not a saint. Just a mother.

 

 

Older Posts »