Susan's Blog

Friday, December 22, 2017

The Mandolin

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. “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 sun broke through the dawn and 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. 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 a deep pink light spreading across the horizon.

What a strange and wonderful gift he had been given. He knew he had to act swiftly. 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 mandolin as well. 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 and 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.

The boy grew tall and strong healthy.  He wanted for nothing. But as he reached manhood, he felt as if there were a fist inside his chest, a heartsickness that he could not explain. 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 it in her son. However, she had no knowledge of the healing arts, but she did believe that if he kept busy he would soon forget his unnamed sorrow. And 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.

He was very poor at hunting. His sorrow grew with his shame and yet 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; 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. He felt frightened by this feeling, and he tightened the string of his bow.

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 a healer, as I once was.” 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.

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 ran home his arms laden with the greens, his weapons weighing on his back, but he felt strangely light on his feet. Eventually he realized that the leaden feeling in his heart had softened and now flowed through him like nourishing food and drink.

Without a word to his parents he set his plants down on the table. He looked at them 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 noticed, for the first time perhaps, the old mandolin that hung there.

Over time it had become very dry, with more cracks, and its neck was separating from the body. The two carved hearts remained intact but were coated with dust. He blew away the dust and placed the instrument against his belly, encircling the neck gently with his hand.

And 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 strings at the top, and he heard a low hum, but it was not like a mandolin. It was like a voice, singing. There were no words, but the song made him want to close his eyes and sink into a deep luxurious sleep. But he remained awake, listening to the voice of the mandolin, and feeling strangely sad, as if it were trying to speak to him but could not.

The lush notes rose before his eyes and without knowing he was doing so, they played the doe’s song. And now he remembered her words, and soon 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, 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, through 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 that night, all because a beautiful doe had given him her trust and her deep wisdom, and a mandolin that sang with the voice of a father he would never know.

 

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