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Posts Tagged ‘C.S. Lewis’

“Never be afraid to trust an unknown future to a known God.”
~ Corrie Ten Boom

On Saturday Boo was his reliable, predictable self, and yet he never ceases to amaze me.  Andy had taken him overnight and so he was there when we arrived.  He had been asking for “grandma” and “mama” all morning, yet when we arrived he was more interested in the food my mother had brought him.  This time she’d added a new item:  a small container of mini-Oreos.  Jonah’s not the type to eat things in what others might consider a “logical order” – food, then dessert.  His banquet must be presented all at once, and though he did eat most of his sandwich, the Oreos were a big attraction.

Jonah enjoys the stuff in the middle — the meat and cheese inside the bread, his fingers first tap-tap-tapping against the sandwich and then, usually, discarding the bread altogether to get to whatever is the middle.  It was no different with the Oreos.  He held each mini Oreo carefully in his little hands and pulled it apart, scraping the creamy white stuffing out of the middle, then discarding the two outer cookie pieces.

cookie fun

cookie fun

He gleefully attacked his lunch with fervor.

cookie mouth

cookie mouth
YAY!

YAY!

We are waiting for warmer weather but offered to take him to the park anyway, or the train, or the Poet’s Walk.  When we asked him if he wanted to do any of these things he answered “no,” sweetly but firmly, to each one.  “Transfer station?” he asked, which is a recycling facility where Andy takes his paper and cans, etc. every Saturday.  It is car ride Jonah wants, and he almost always says “grandma stay here.”  I think it’s because he wants the whole backseat to himself.  So my poor mother is stuck watching QVC and Fox News on Andy’s TV until we return for a bath and then another request for car ride.

I found out about an open swimming program at Bard College on the weekends, but Andy seems reluctant to take him, lest he throw a fit.  I want to try, though.  Perhaps M will come down with me some Sunday and we can take him.  Jonah loves the water so much!  I was ready to book a 3-night stay in Cape Cod this summer, to take him to the ocean with Andy, to watch him frolic in the waves, to hear his little voice cry gleefully for ocean!  It is a word we do not use, for if we cannot take him it would be mean to plant the idea in his head.  Now it looks like I may be hard-pressed to take him at all.  I will find a way, for I am a determined mom and want to give the gift of ocean to my Boo.

I would like to end this post with some quotes and passages upon which I have been reflecting.  There are discoveries to make, and self-improvements to make, and faith to build.  There is self-awareness and I am attempting to step away from myself and see myself as others see me.  I am looking deep into a metaphorical mirror to ensure I can remain true to myself and to everything I have ever wanted to be…a great mother, a loyal friend, a good person.  Most of all I am seeking to be kind to all I encounter, to forgive, to understand (and not only to be understood),  as in the prayer of St. Francis, perhaps my favorite prayer/hymn.  I am praying it with everything inside me and turning things over to the certain God in which I believe.

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury,pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

Oh Master, grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life. Amen.

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“Experience: that most brutal of teachers. But you learn, my God do you learn.”

~C. S. Lewis

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Matthew 5:44-45 says, “But I tell you: Love your enemies and pray for those who persecute you, that you may be sons of your Father in heaven. He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous.”  Thus, now go on your knees and pray for the person who has hurt you.
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“To enjoy good health, to bring true happiness to one’s family, to bring peace to all, one must first discipline and control one’s own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.”

~ Buddha

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“Silence is one of the great arts of conversation.”

~ Marcus Tullius Cicero

– – –

“To thine own self be true,
and it shall follow, as the night the day,
thou canst not then be false to any man.”

~Shakespeare

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“We read to know we are not alone.” ~ C.S. Lewis

Where do I begin?  I’ve been away and basically “unplugged” since Thursday morning; M & I went on a 2-day mini-trip to see Guster play with the Colorado Symphony Orchestra in Denver, which was amazing.

It was worth every penny I’d saved up to do it.  More about that later, maybe.  First, this very cool piece of news…

Two weeks ago, I got an e-mail from the executive director of Turner, asking me if I’d be interested in writing a piece about Jonah (and why I blog about him) for HLNtv.com and its sister site, CNN.com.  She had been tipped off about my blog by someone I went to high school with who works for CNN.  (Thanks, MM).  So I told her I’d think about it OF COURSE and then I started to panic.  500 words and a two-day deadline.  What to say?  How to encapsulate all we’ve experienced in 500 words?

Here is what I came up with, and I’m humbled and proud (are they mutually exclusive?) to say the story is the #2 top headline on HLNtv.com right now.  I can’t find it on CNN yet, so maybe it’s just going to be on the one site.  Either way

Yesterday at school, with no warning, my son Jonah overturned and threw his desk, attacked his teachers, and was ultimately so aggressive he required a two-person takedown (where his caregivers follow trained physical maneuvers to protect both him and them). My son’s a slender, slight boy, but also wiry and strong. He has autism with severe behavioral problems. He’s been potty trained for five months now, and will sometimes utter a sentence/request: “I want juice please?”

On March 7, Jonah turned ten years old. 

Jonah’s also a cutie, and a charmer. He loves trains, baths, and the beach, tight hugs and Grandma and chases. Though he can only speak in phrases, he can sing entire songs, in tune and with near-perfect rhythm. He taught himself to swim when he was five and dives deep underwater, surging to the surface over and over again, spitting water in a perfect stream. He even invented his own nomenclature (any kind of cola, for instance, is black soda, and whether it’s a dime, penny, or nickel, to Jonah it’s moneycoin). He dances and runs, shouting his jabberwocky to anyone within earshot.  He’s never embarrassed, never ashamed. 

And since August 16, 2011, he’s been living an hour and a half away from me at an educational residential facility for individuals with autism.

I used to judge people like me, people who sent their children away.

I don’t judge anyone anymore. 

Almost two years ago now, Jonah started to say “swat” and whack people on the arm. We and his school tried everything to mitigate this behavior. It grew worse, however, until he eventually became violent without reason – even during a preferred activity. He grabs and breaks eyeglasses. He hits hard and yanks hair. He scratches and bites. He fights dirty, no holds barred. Eventually Jonah calms down, but it is impossible to say for how long. There is no pattern, or if there is a pattern, none of us can see it. 

His father and I tried hard to see it, to find another way. He got the earliest intervention possible; our family doctor knew something was amiss when Jonah was just 8 weeks old. He wasn’t looking at the doctor; he was looking at the lights. “Infants look at faces,” doc told me, smiling, reassuring me we’d keep an eye on him.  So by the time he was 19 months old, Jonah received early intervention services. Diagnosed with autism at 22 months, before he turned three he was admitted to a fantastic full-time school for kids with neurological impairments, where he stayed until the residential placement.

I blog about my son because I have to write about him. Normal is a Dryer Setting is not a triumph-over-autism story, and it’s not a wise mother’s guide to life with autism. It’s just an honest account of our crazy, messy lives. And if it comforts one other family – if I can help just one person feel they are not alone – then Jonah’s journey will be worth the telling.

The most difficult thing about writing this article was to pinpoint exactly why I’m blogging about Jonah, and I think that’s the point she really wanted me to drive home.  I write about him because I’m a writer.  Because it’s therapeutic.  And, I realized, I wanted to uncover this “dark side” of autism nobody talks about.  Because I know I can’t be the only one.  And, maybe most of all,  because I don’t want the other ones to feel alone.

I will come back soon.  If you have commented or written to me, I promise to get back to you as soon as I can.  There are a lot of responses, and I am indeed humbled.  Honored.  And yes, also proud, because I consider myself a writer above almost all else, and this is so invigoratingly validating.

You must stay drunk on writing so reality cannot destroy you.  ~Ray Bradbury

My beautiful Boo:  How many lives you have touched?  How many people can we help? 

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I’m writing like the wind to meet some deadlines, so until I can get back I’ll post favorite quotes:

“Never, never be afraid to do what’s right, especially if the well-being of a person or animal is at stake.  Society’s punishments are small compared to the wounds we inflict on our soul when we look the other way.”

~ Dr. Martin Luther King, Jr.

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Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind. 

~ Henry James

– – –

“The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one’s ‘own,’ or ‘real’ life. The truth is of course that what one calls the interruptions are precisely one’s real life — the life God is sending one day by day.”

~ C. S. Lewis

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“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”

~ Mark Twain

– – –

 “Adults are just obsolete children and the hell with them.”

~ Dr. Seuss

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