Heroes

I am a literary geek. Somewhere in junior high or high school I fell in love with the English language. I fell in love with the concepts of imagery, metaphor, and the power of story. Each of us is the reluctant hero. Each of us follows the hero's journey. Each of us believes in the power of myth. None of us can deny the eternity of the written word.

My son is writing his story. His very own, unique, and uncompromising hero's journey. His journey has the appropriate escalating conflict that is essential to any triumph. I know how hard it is for him now. To rise above, we must first fall below. I hope to be with him. I hope to be between him and harm's way in all the dark places he must travel.

My son is writing his story. His very own, unique, and uncompromising hero's journey.

And he is writing mine as well.


My family has been in one of those dark places we must travel. We are searching for people to stand between us and harm's way. Today, knowing nothing of our current struggles, a friend reminded me of why I write. She reminded me of the poem that made me believe in the eternity of words.

I will share his journey and struggles soon, but it is still being written.

This is why I write. This is why I read. This is why I believe. Even though the Italian translation in the preamble says "Abandon all hope ye who enter here", this is why I still hope.

Forget Stacy's mom, T.S. Eliot has got it going on.

1. The Love Song of J. Alfred Prufrock

S’io credesse che mia risposta fosse A persona che mai tornasse al mondo, Questa fiamma staria senza piu scosse. Ma perciocche giammai di questo fondo Non torno vivo alcun, s’i’odo il vero, Senza tema d’infamia ti rispondo.

LET us go then, you and I, When the evening is spread out against the sky Like a patient etherized upon a table; Let us go, through certain half-deserted streets, The muttering retreats         5 Of restless nights in one-night cheap hotels And sawdust restaurants with oyster-shells: Streets that follow like a tedious argument Of insidious intent To lead you to an overwhelming question….         10 Oh, do not ask, “What is it?” Let us go and make our visit. In the room the women come and go Talking of Michelangelo. The yellow fog that rubs its back upon the window-panes,         15 The yellow smoke that rubs its muzzle on the window-panes Licked its tongue into the corners of the evening, Lingered upon the pools that stand in drains, Let fall upon its back the soot that falls from chimneys, Slipped by the terrace, made a sudden leap,         20 And seeing that it was a soft October night, Curled once about the house, and fell asleep. And indeed there will be time For the yellow smoke that slides along the street, Rubbing its back upon the window panes;         25 There will be time, there will be time To prepare a face to meet the faces that you meet; There will be time to murder and create, And time for all the works and days of hands That lift and drop a question on your plate;         30 Time for you and time for me, And time yet for a hundred indecisions, And for a hundred visions and revisions, Before the taking of a toast and tea. In the room the women come and go         35 Talking of Michelangelo. And indeed there will be time To wonder, “Do I dare?” and, “Do I dare?” Time to turn back and descend the stair, With a bald spot in the middle of my hair—         40 (They will say: “How his hair is growing thin!”) My morning coat, my collar mounting firmly to the chin, My necktie rich and modest, but asserted by a simple pin— (They will say: “But how his arms and legs are thin!”) Do I dare         45 Disturb the universe? In a minute there is time For decisions and revisions which a minute will reverse. For I have known them all already, known them all: Have known the evenings, mornings, afternoons,         50 I have measured out my life with coffee spoons; I know the voices dying with a dying fall Beneath the music from a farther room.   So how should I presume? And I have known the eyes already, known them all—         55 The eyes that fix you in a formulated phrase, And when I am formulated, sprawling on a pin, When I am pinned and wriggling on the wall, Then how should I begin To spit out all the butt-ends of my days and ways?         60   And how should I presume? And I have known the arms already, known them all— Arms that are braceleted and white and bare (But in the lamplight, downed with light brown hair!) Is it perfume from a dress         65 That makes me so digress? Arms that lie along a table, or wrap about a shawl.   And should I then presume?   And how should I begin? .      .      .      .      .      .      .      . Shall I say, I have gone at dusk through narrow streets         70 And watched the smoke that rises from the pipes Of lonely men in shirt-sleeves, leaning out of windows?… I should have been a pair of ragged claws Scuttling across the floors of silent seas. .      .      .      .      .      .      .      . And the afternoon, the evening, sleeps so peacefully!         75 Smoothed by long fingers, Asleep … tired … or it malingers, Stretched on the floor, here beside you and me. Should I, after tea and cakes and ices, Have the strength to force the moment to its crisis?         80 But though I have wept and fasted, wept and prayed, Though I have seen my head (grown slightly bald) brought in upon a platter, I am no prophet—and here’s no great matter; I have seen the moment of my greatness flicker, And I have seen the eternal Footman hold my coat, and snicker,         85 And in short, I was afraid. And would it have been worth it, after all, After the cups, the marmalade, the tea, Among the porcelain, among some talk of you and me, Would it have been worth while,         90 To have bitten off the matter with a smile, To have squeezed the universe into a ball To roll it toward some overwhelming question, To say: “I am Lazarus, come from the dead, Come back to tell you all, I shall tell you all”—         95 If one, settling a pillow by her head,   Should say: “That is not what I meant at all;   That is not it, at all.” And would it have been worth it, after all, Would it have been worth while,         100 After the sunsets and the dooryards and the sprinkled streets, After the novels, after the teacups, after the skirts that trail along the floor— And this, and so much more?— It is impossible to say just what I mean! But as if a magic lantern threw the nerves in patterns on a screen:         105 Would it have been worth while If one, settling a pillow or throwing off a shawl, And turning toward the window, should say:   “That is not it at all,   That is not what I meant, at all.” .      .      .      .      .      .      .      .         110 No! I am not Prince Hamlet, nor was meant to be; Am an attendant lord, one that will do To swell a progress, start a scene or two, Advise the prince; no doubt, an easy tool, Deferential, glad to be of use,         115 Politic, cautious, and meticulous; Full of high sentence, but a bit obtuse; At times, indeed, almost ridiculous— Almost, at times, the Fool. I grow old … I grow old …         120 I shall wear the bottoms of my trousers rolled. Shall I part my hair behind? Do I dare to eat a peach? I shall wear white flannel trousers, and walk upon the beach. I have heard the mermaids singing, each to each. I do not think that they will sing to me.         125 I have seen them riding seaward on the waves Combing the white hair of the waves blown back When the wind blows the water white and black. We have lingered in the chambers of the sea By sea-girls wreathed with seaweed red and brown         130 Till human voices wake us, and we drown. T.S. Eliot (1888–1965).  Prufrock and Other Observations.  1920. Courtesy of Bartleby.com Life is a journey. Triumph is a reward. Struggle is essential. Success is eternal. Thank you to those of you that read this. May hope stand between you and harm's way in all the dark places you must travel.

Hey Soul Sister

Siblings.

Although I rarely mention it, I do have a second child. A sweet, beautiful, warrior-poet of a daughter named Jade.

As the NT younger sibling of an autistic child, Jade gets hosed for attention. My wife and I try our hardest to spend time with her alone. We put her in pre-school already so she could play with her peers. We often separate the kids (and parents) for vacations or long weekends. Jade spends most of her hours at home, however, waiting. Waiting while we direct, or re-direct, or schedule, or chase, or rehabilitate her brother.

And she waits magnificently.

Recently our son has been having a rough time. A new school year has started. A new daycamp. Increased appetite. Different bedtime. Less television. A break from OT. We're always looking for the antecedent(s) to his behavior(s). It could be anything. We have 2 years of data now that show little pattern to what sets him off. It's frustrating to say the least, but of this we are certain: Something is not right in his world. Everyone is trying to find it. Everyone is trying to help. Everyone is reaching in to him.

Except Jade.

In the past few days, the baby girl (she's 2 1/2), has begun to imitate her brother's stims. If the boy is spinning in the living room, pretending to be the Hulk, screaming at the top of his lungs, knocking shit off the shelves, hitting anyone that may accidentally get in the way of his hurricane, Jade will bravely dive in and do the same. It worries me sometimes. I don't want to see the same behaviors in the younger child. You can imagine that we watch her development like hawks. If she tries to shake a booger off her hand, we instantly say things like "look! She's flapping! Shit!". Why on Earth would we want our younger baby to imitate the non-functional behavior of her brother?

She's playing. She's trying so hard to connect to her brother. She wants to be a part of his world so badly. She wants to be close to the one she is already biologically closest to. She wants to break down the wall of autism and isolation and say "hey, I love you".

And, once in a very rare while, once in a moment of understanding that only siblings can have, once in a moment of accidental/unintended eye-contact... she gets in. He unlocks the door and let's her in to play. The stim turns into some sort of FUNCTIONAL pretend play.

I spend so much time researching and worrying about how to reach my son. But my daughter just does it. She loves him. She wants to be him. She wants to be with him. She wants to help him. And she does.

Although I rarely mention it, I do have a second child. A sweet, beautiful, warrior-poet of a daughter named Jade.

She is amazing. She may not always know it, but her daddy is VERY proud of her. She amazes me more and more every day. We didn't have a second child to help with the first, but, son-of-a-bitch we got one that does. I love the way you love him. Jade, you are the most unique, amazing, understanding, talented, brilliant, empathetic human being I know. Keep showing the world. Keep shining on like the stone for which you were named.

Although I rarely mention it, I do have a second child. A sweet, beautiful, warrior-poet of a daughter named Jade.

Daddy, You Been on my Mind

  Daddy, You Been On My Mind

  JOAN BAEZ

  FROM THE ALBUM "BAEZ SINGS DYLAN"

 

BUY

I've been working on a blog about regression that life needs to play out a little longer before I can finish. In writing it, however, I keep coming back to a quick theme that deserves its own blog.

I have an amazing father.

I have several amazing people in my life, but this one is about Dad (sorry, Mom, you got the last one).

We've been having a rough last week or two. The boy hasn't been doing well (that's another blog). Every aspect of treatment looks for triggers or antecedents for behaviors. You wrack your brain searching for what is different. Is it a new setting? Is it a new transition? Is it less OT? Is it something he's eating? Is it the way I drove to school this morning? Do his teeth hurt? Does he watch too much TV? and on and on.

We have 2 1/2 years of data that rarely point to something specific.

So why now? Why is he behaving this way now? Is he regressing? Is he losing the skills he worked so hard to gain? For the first time since his diagnosis, these questions were keeping me up at night... worrying. What can I be doing differently.

So I called my Dad.

My father is a pediatric physiatrist (a doctor specializing in physical medicine and rehabilitation). He does not see children with autism specifically (although he sees several with other disabilities that are also developmentally delayed or autistic). He's a damn good one, too. We've had numerous talks about my son. We went to a conference together. He's started seeing children with autism in the regional centers he volunteers at in the Central Valley to assess physical needs that might not have been seen before. He's explained Occupational Therapy to me numerous times (some of which I still don't understand). Again, he's amazing.

But today I didn't need professional opinions or advice.

I needed my daddy.

And he was there.

Dad told me how periods of regression are normal with any developmental disability. They are going to come and go. You need to make sure you stay on the rehabilitation path you (and your team) have chosen. He's treated dozens to hundreds of children and seen it dozens to hundreds of times. And yes, rarely, those periods don't go away. Some children with autism DO regress. Some DO lose skills. Some DO retreat so far into themselves they become unreachable. What do I do then? And the answer was perfect. You deal with it then. Surround yourself with the best team you can for your child (and yourself). Just keep going on with the confidence knowing you are doing the best you can for your child.

It's not eloquent advice. It's not even eye-opening or ground-breaking. It's what I needed to hear.

As parents of special needs children, we are constantly seeking answers to questions.

The answer I needed was that the person I admire most, the father I aspire to be, thought I was doing the best I could.

Sometimes the answers we seek are right at the end of our arm. They are found in the arms of an embrace. They are found in the eyes of a friend. They are found on the lips of a spouse. They are found in the babblings of a child.

But they are found.

Seek, my friends. Seek.

Take it Easy

Here are 5 subtle things you can do as a parent raising a child with special needs to make your life easier.

1. When flying, use valet at the airport.

     Rather than spend the extra money on first class, the seat with more leg room, an extra bag, etc., valet your car at one of the parking spots near the airport. It doesn't cost much more than you would pay for parking anyway. You'll thank me for this tip when you get back. Some of the places will even wash your car. Those of you that already do this know the relief of not having to wander through another parking lot lugging all your shit and your kids in the sun. Well worth the extra 5 bucks!

2. Drive, walk, ride a bike, rollerblade, etc. to school.

     For those readers that don't know me, I am a quintessential dude. I like a good dirty joke. I drink beer. I watch sports. So, this advice is not because I'm trying to be healthy or save the environment (both good causes), but rather I don't want my kid riding the bus to school. It has nothing to do with the stigma of the "short bus". If the boy took the bus to school (which he wants to, trust me), I would say good-bye at the doorstep and hello at the doorstep. I would only see his teachers/aides/therapists/classmates/parents of classmates/administrators and friends (yes FRIENDS), two or three times a year. I want to be involved in his schooling... not by volunteering or anything crazy like that, but by talking to the people he interacts with every day. You'll thank me when you're sitting in your next IEP staring at 5 faces you know well, rather than a room of oppositional strangers.

3. See a shrink.

      Most health insurance plans cover it. Raising a child with special needs is hard fucking work. It's really nice to have a professional stranger to talk to. Don't worry, you're not "crazy" if you see a psychologist. The value of having someone that HAS to listen to you bitch about your life is priceless... and, God forbid, you might even learn something about yourself.

4. Take up golf.

      Or take up any hobby/sport that gets you out of the house. Here's why I golf. I live in a world where I have very little control. Sure I can direct, or re-direct, or react, but I am never entirely in control. Those of you that golf know this feeling. Little in life is more beautiful than a perfectly struck tee shot sailing through the air on a perfect line. You watch your ball sail against a backdrop of clouds and blue skies and land on a lush contrasting green. Nothing is uglier than a shanked tee shot that sail 80 yards to your right off the cliff, either. Good or bad, your shot was entirely in your control. A picture perfect moment that makes you turn to your friends and say "I made that. That came from ME."  Plus, golf is one of the few "sports" that you can drink and smoke while playing.

5. Accept the things you can not change.

      I'm still working on this one, but I've heard it's Nirvana if you can.


While I was writing this, I thought of about 8 more, but I promised you 5.

Good luck, my friends. I'll see you at the airport valet, or the schoolyard drop-off, or the psychologists office, or on the links soon.

And hopefully, one day, sitting under that cherry tree.