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

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.

 

 

Thursday, March 9, 2017

Nat Is Okay

I have been having a very hard time managing my feelings about what happened to Nat in July. I think about whether he is happy or okay very often. I have nightmares. I talk about it too much. It’s because I feel that I didn’t protect him well enough and I don’t know how to move forward. But even more, I am so worried about how Nat has internalized all that happened to him. How does someone who has a communication challenge like his talk through and make sense of trauma?

So I went to see my old therapist. She had the idea that I make a Nat book for him, just like I did when he was a really little guy and needed help going to Thanksgiving at Aunt Rhoda’s. Give him a framework, the words, the images, to put the story right into perspective for him. About 15 Nat books later, and 25 years later, here is Nat Is Okay. I will try it out on him this weekend.


Nat Is Okay

Last summer Mommy saw that Nat had a big bruise on his chest. Nat did not tell Mommy what happened. But something had happened to Nat, either at ASA, Shaws, the van, or at Thornton Road.

They went to the hospital and the doctor said that Nat had broken ribs inside his chest. These are ribs inside the chest:

 

Mommy said that Nat could not go back to ASA or Thornton road because she wanted to keep him safe. Whatever had hurt Nat would never hurt him again.

It was not Nat’s fault that he got hurt. Nat is such a good person.

No one should ever hurt Nat. No one should hit Nat. People need to take care of Nat and keep him safe.

So Nat came home. He packed up his room at Thornton Road and he did not go back to ASA.

Nat went to Extreme Sports Camp in Colorado because Mommy wanted Nat to feel happy while his bruises healed. In Colorado, Nat rode a horse named Benji. He had a good time.

Sometimes Nat went with Drew and his social group to do fun things. Sometimes Nat went to Cape Cod. Sometimes Nat went out with Shannon.

In the summer Nat and Mommy visited Charles River Program to see if Nat felt happy there. At Charles River Nat could do Meals on Wheels, go bowling, go to the track, shop for cooking and other good activities. So Nat started going to Charles River on the van with Jackie and Carmen and JP.

Mommy and Daddy loved having Nat at the house. But Nat is grown up and grown ups have their own houses. So Mommy and Daddy looked around and found a nice home nearby.

Nat got ready to live in the new house. He moved his bed and dresser into the new room. He got a new van to take him to Charles River.

But sometimes Nat still feels sad about the time he was hurt, when his ribs were broken. Sometimes Nat feels angry about it, too.

It is okay to feel sad or angry about the time Nat was hurt. It is also hard to move to a new house. The new house is different from home. and Nat does not like when things are different. Nat likes the new house and Charles River, but sometimes people are late or things don’t happen and Nat gets angry.

Once at Buddy Dogs Nat was so angry that the police came and took him to the hospital to keep him safe. Nat did not like being angry or being taken away from Buddy Dogs.

One time Patrick bought Nat a Sprite at Dunkin Donuts and Nat liked the Sprite. But he didn’t like Patrick buying coffee, too. Nat got angry again. Nat hit Patrick but then Nat was sorry he did that.

Patrick is okay. Patrick still likes Nat.

It is okay for Nat to feel angry sometimes. Sometimes every person feels angry. But we have to try to stay calm.

It is okay for Nat to feel sad sometimes. Or scared or worried. But Nat, you should remember that everything will soon be okay. Mommy, Daddy, Makayla, Patrick, Shawna, Shilene, and Shahera want to make Nat happy. Nat should try to remember that we will all try hard to make Nat happy.

But if Nat is not happy, it is okay. Soon the sadness or anger or worry or scared feelings will go away. The sadness, anger, or scared feelings will go away.

When it starts to be spring and summer, Nat will start to feel better about the new house. Nat will start to feel better about the things that are different.

Nat will remember sometimes that he once got hurt but that he is okay now. He will not get hurt anymore. Nat will feel more and more happy. Nat is a good person and many people like him.

Tuesday, February 14, 2017

Go Ahead, Laugh in My Face

Sometime during the last year or so I discovered that Nat had started making this new face, where he drew his lips together almost like a kiss, and scowling a little, he’d tilt his head downward. When it first happened I was alarmed because — why did he feel he had to stop smiling or whatever he’d been doing? Had someone in his life been chiding him for laughing too much, being silly? This is where my mind goes, automatically looking for that hidden evil person in his life, who might be mistreating him and no one knowing about it. I have every right to go there, especially after this last summer when he came home with mysteriously fractured ribs. X-rays showed that this was not even the first time he’d had broken ribs.

I will never let go of that.

This gesture worried me, especially when he also would draw his arms straight down against his body. This made me think he was stiffening his body for no apparent reason. It looked so odd that we began to worry that he had catatonia. We took him to his neurologist, to a new psychopharm, and started him on new meds. I plunged into the world of autism catatonia, trying to learn at lightning speed about this terrible condition.

By now we know that he doesn’t have autism catatonia. We know that some of this pulling-inward was likely due to the pain of the first fractured rib. He’d also be very still, which makes sense if you consider he was likely in great pain.

This is all very confusing, I’m sure. Sometimes his stillness and stiff demeanor may have been about rib pain. But sometimes this gesture of pulling himself into seriousness is just that, he is trying to let you know that he is paying attention, he is riveted, focused.

Once his ribs healed, and I knew about this latter, newer possibility, I began noticing it in all sorts of situations. At his ISP, he’d lean forward, lips together, listening as hard as the worm in Dr. Seuss’s The Big Brag. OLYMPUS DIGITAL CAMERA

Another thing I discovered since he’d come home was that his hands, his palms, were as rough and knotty as bark.  I offered to rub hand cream into his hands, because of course he would never know to ask for it. Autism freezes his will, or something like that. But I don’t want to think about that now.

So I would rub Eucerin into his hands every night. I usually forgot until he was in bed. I’d say, “Nat you want some hand cream?” and he’d say, “Yes.” So I’d pump out a dollop and just rub it into his hands, in the dark. I’d do what manicurists do: pull each finger, rub the fat part of his palm.

Over the months that he was home, of course, his hands started to soften. And I noticed how eagerly he would agree to the hand massage when I remembered. I also noticed that he’d go very still and draw his lips together, as if trying to experience it with every sense he had.

I, too, would soften inside because he was allowing me to touch him, he was actually getting pleasure from my touch. That had not happened for a long, long time. As a baby he had reached for me, as a toddler he had wanted me to pick him up “I pick you up,” he’d say. But really so much of his “affection” as a grown up was just kind of letting people kiss him or hug him. He does not like hugs for the most part. Ned and I joke about getting “chinned” by him; he lets you hug him but shoves his chin sharply into your shoulder while you’re doing it.

But the hand cream is pure enjoyment; he’s not being polite, he’s melting. Last time I did it was just a few days ago. He was in the bathroom, getting ready for bed, and giggling to himself. I remembered the hand cream, and came upstairs to put it on him. As I started pressing it into his hands, he suddenly drew his mouth into his serious face, and impulsively I kissed him. While I was kissing him, he burst out laughing, totally into my face. It made me laugh, too. I kept my lips on his scratchy face and we just laughed onto each other’s cheeks.

How long does an autism mom wait for such moments? Completely unprompted, non-rote, natural evidence of affection. Because yes we do need it. Our hearts get roughened by the years of all the necessary effort, the putting-my-child-first, the letting-him-be-who-he-is. Autism parenting has grown such muscular mothering that we forget how much we crave a simple sign. And there it was, his startling, sudden joy in my presence, what we were experiencing together. A balm for my soul.

 

Wednesday, February 8, 2017

A Perfect Storm is Roiling Disabled Students

Here is my latest article in WBUR’s Cognoscenti Column, on the perfect storm of political nightmare roiling students with disabilities. Add to this icy mix Jeff Sessions who describes the ways in which IDEA and disabled students are burdens.

Wednesday, February 1, 2017

How Green Is My Natty

I’ve been here before. A fiery fissure breaking through my heart, Richter scale 6-8, the pain of saying goodbye to a son. This feeling is familiar territory with motherhood. But with autism there is an additional darkness in the chasm. My oldest, Nat, is 27 and autistic, and he is leaving today for a group home.

I spent the morning, and the day before at those home accessory stores, lost in a fog of pastel household goods and women, glassy-eyed like me, stroking carpets that hung like a row of furry tongues and other items they did not need. I was shopping for Nat’s new room: towels, bedside table, curtains. The only guidance I had from him was the word, “green,” in answer to my question of what color he wants in his room. And I was lucky to get this tiny chip of information, real information, from Nat in his otherwise barely intelligible symphony of sounds. I say symphony because his self-talk is so musical, rising and falling like a nursery rhyme, yet as complex as Beethoven’s Ninth.

In the store, I found myself looking at other colors, though. How would orange be? He likes his orange Gap shirt. Or yellow? He wears yellow tee shirts all sunny summer long. But does that mean that this room should have those colors? He said “green.” But still, there I was, wondering about the orange pillow, the splashy yellow dust ruffle. Always wanting to meet him where he is and pull him into more. Pull him to me. A la Greenspan/Floortime. Build that bridge, tote that barge. As if I am somehow the example of where he should be. I am so not.

I wandered the aisles thinking of Floortime, having thoughts like, “will they know him? why does he want to go, because he thinks he’s supposed to go, or because he wants to?” But mostly I felt like apologizing. Yeah, I’m really sorry for not being absolutely certain of what to do for you, Nat. I’m so fucking sorry that my body did not equip you with the easier, neurotypical DNA, those mainstream building blocks, that ladder to independence. You will always need others to watch out for you, and it can’t be me forever, and so I need to find others, I need to get you used to others. But Goddammit, there are others out there who are stupid or evil. Or indifferent. Lazy. I can’t imagine how they can be that way. I see red when I imagine a person not taking care of you right. HOW DARE THEY? You are a gift to them. You are utterly you, and yes, I’ll say it, you are pure. I’m not saying you are superhuman or an angel or any other such bullshit. You are special in that unlike Us, you are purely you, no guile, no artifice. Well, I know that the sign-song self-talk is an attempt to hide what is going on in your mind. Oh that is so dear. No, no, not patronizing you. I’m matronizing you, that’s different. When you vocalize, I listen with my deepest, quietest self. I heard “hooo-me” this morning and I knew it was “home.” Stretched-out words. You want to keep your thoughts private while expressing your feelings at the same time. You are infinitely clever. Who else could build what you have, with the tools you’ve been given?

Aside from this seven-month stint since July, Nat has not lived at home since 2008. This is a good thing. It was a good thing. He learned to live with others who do not love him or know him the way we do. He learned how to make his needs known, even with limited verbal ability. He acquired skills like food shopping, laundry, and other daily living activities. He developed beautifully.

But he also came home with mysteriously fractured ribs.  And though he did articulate a tantalizing few words explaining how it happened, we could not trust this for sure. The state investigation heard other such explanations from his disabled co-workers at his former day program, but deemed them “unreliable reporters.” Can you imagine being thought of that way? It chokes me, it feels like a kicked ass kind of rage. And yet that is how I sometimes think of Nat. I explain to doctors, “Well, he often answers just ‘yes’ by rote, because he either doesn’t know how to answer your question about his health, or he doesn’t want to talk, so ‘yes’ will get you off his back.”

So even when guys like Nat do express themselves in an effort to engage with us (the neurotypical world), they don’t really get very far.

And so, my dear, I will buy you green. All the green I can find. And I will hope that you will unfurl like the best of leaves, and find equally healthy growth in your new place.

 

 

 

 

 

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