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djonah unchained

May 6, 2013 by The Never Normal

“The “D” is silent.”  ~ Django, in the 2012 movie Django Unchained.

So I just saw Django Unchained, finally, and enjoyed it so much I watched it twice.  I can’t believe it lost to Argo for the Oscar, which I also saw but thought was a good (but lesser) movie.  I’m not a huge Tarantino fan and am glad I went into it without the knowledge that he had written and directed it, because I would have been somewhat prejudiced against it from the start, though it should have been obvious he directed it: the violence, the structure, and all that ignoring of plot holes and logic.  It didn’t matter.  I didn’t even mind the violence…it served a purpose, and as far as folks criticizing the word “nigger” being overused, it was set, after all, in the antebellum era before the Civil War.  It was true to its time, for the most part.  I loved it.  Perfectly cast, too.

Djonah has also acted in an unchained manner of late – he even “eloped” (which is the autism world’s word for running away) on Saturday when my mom and I visited and we were eating lunch at Andy’s apartment.  With no warning he ran at the screen door, flung it open, and ran full speed down the short-ish street right toward the 55-mile-per hour road it meets.  Andy acted lightning fast, and thank God he’s been working out for months now because he caught him easily.  I would hope that with my new exercise regimen and super-power momma instinct, I also could have caught him, but luckily I didn’t have to try.  Left unchecked, Djonah would certainly fly, headlong into the street, I’m sure, powered by an inner need to escape something inside him which would ignore all danger of speeding cars on the road.  This eloping is new; he has only done it once before, and on the school grounds, where he is trapped on all sides by fencing.

There are other new things amiss with Djonah.  He is having multiple aggressions every day (which has always been cyclic) but he has had zero aggressions for something like 2-3 weeks prior to this – and also, now he is exhibiting signs of OCD (obsessive-compulsive disorder) we’ve never seen before, touching doorknobs 100 times and spinning ever-increasingly in circles, round and round.  This is all different. His nurse and his behavioral specialist are both really concerned.  There is also some blood in his left ear; it isn’t pouring out of him but when we gently clean it there is blood on the swab.  I have to call today and see if I can drive down to meet with Djonah’s doc and talk to her about what to do about all these things.  After talking to other moms in similar situations, I think I want to take him off all his anxiety/aggression meds and then put him back on them, one at a time, to see what is working and what isn’t.  Right now he is on such a cocktail of meds that adding and subtracting meds at this point is just a guessing game.

On top of all this his eye operation is a week from tomorrow.  I can’t see that helping any of these behaviors.  Things will almost certainly get worse before they get better.

Also on Saturday, he attacked Andy twice in the apartment.  Andy managed to get him onto blue bed and hold him, and I came in to lay across his legs so he wouldn’t back-kick Andy in the kidneys.  Djonah wept and wept…in frustration, anger, I don’t know what, drool and snot and tears all mixing together in a pool of desperation on the bedspread.  It took a long time to calm him down.  I tried singing softly, shifting my body so my face was near his, and he’d jut his neck out toward me as far as he could and open his mouth, gnashing to bite me.  I recoiled as if facing a cobra.  I kept kissing him, on his legs and feet and back, wherever I could reach safely, telling him softly, over and over, “I love you, Boo.  God loves you.”

Eventually he was able to calm down, breathe normally, and relax his lithe body.   He ate his lunch and took his bath and wanted his car ride.

settled down somewhat

settled down somewhat

People sometimes ask me how he is doing and I never want to talk about it.  I direct them to my blog sometimes, because I can’t live it and talk about it all the time too.  A defense mechanism in my mind kicks in so I can live a life without a constancy of terror and anguish, helplessness and envy.  And yet I have to balance this with the necessity of advocating for our son and ensuring he is getting the care and medication that will help him.

A friend called me last night to vent because her teenage son is being very rebellious.  All I could do was listen.  I know nothing of teenagers but for memories of my own teenage years.  I wish I could have helped her more.  I sent her a list of books he may enjoy, and she may enjoy them too, for they are both readers and in my literature-loving mind, a good book is damn near a cure for anything that ails you.  If nothing else it provides escape.  Here is what I recommended (most of which I have read but some I have not and recommended based on reviews):

Fiction:

Looking for Alaska by John Green

Divergent by Veronica Roth (inspired by The Giver, I’d say)

Matched by Allie Condie

Every Day by David Levithan

I am the Messenger by Markus Zusak

Boy21 by Matthew Quick

Don’t Care High by Gordon Korman

The Chocolate War (and its sequel) by Robert Cormier (all his books are great)

The Curious Incident of the Dog in the Night-time by Mark Haddon

Brave New World by Aldous Huxley

Non-fiction:

Me Talk Pretty One Day by David Sedaris (really funny)

Life Without Limits by Nick Vujicic

One Man’s Wilderness: An Alaskan Odyssey by Dick Proenneke and Sam Keith

Black Like Me by John Howard Griffin

The Wave by Todd Strasser

A Heartbreaking Work of Staggering Genius by Dave Eggers

Books always help me.  Writing always helps me.  Both are ways to immerse myself so completely that I’m in a zone from which I cannot be awoken easily.  They are meditations. 

I pray and hope and will Djonah to get better, for all of this to subside, for the wheel to turn so he is not squashed at the bottom but rather riding on top – happy in the warm weather – and soon, swimming again.

But there are good things on the horizon as well.  My mind is feeling calmer, and happier –and the changes I’ve made in diet, behavior, exercise, and what I put into my body in general have given me more energy and a better perspective on everything I see and all I encounter.

In the midst of the Djonah turmoil, somehow, I am feeling very, very blessed and grateful.

Auf Wiedersehen…

Posted in Anderson School, autism, behavior, doctor, grandma, haircut, The Anderson School for Autism | Tagged , , , , , , , | 3 Comments »

a better heart

April 28, 2013 by The Never Normal

If your head tells you one thing and your heart another,
before you do anything, you should first decide
whether you have a better head or a better heart.

~ Marilyn vos Savant

Undoubtedly my heart is better than my head, but I’m not sure if that’s saying all that much.  Oftentimes I extinguish the embers attempting to flare into emotions simply because I don’t want to feel those emotions.  And other times the embers are fed by a circumstance or song, and they flicker and come aflame unbidden…causing anything from tight-jawed pain to tremendous joy.

Yesterday Jonah was a happy kid.  My mom waited in the car while Andy and I went to the residence, and Boo was standing excitedly by the front door.  I had brought his “octopus” with me, but a small red-headed boy hugged me and held out his hand for the toy, so I dropped it in his palm, smiling as he ran off happily to play with it.  Jonah didn’t mind, and I can always buy him another.  Jonah’s more concerned with where grandma is, and whether or not there will be delicious things to eat.  We went into his room to gather a windbreaker, and another kid came running in to jump & land on Jonah’s bed.  Another kid was in Jonah’s window because he loves to look out at the playground. Party in Boo’s room.  Jonah tolerated it nicely as we apologized for the handfuls of hair incident from the other day, and asked about his morning (which, they told us, was good).

The caregivers who had endured Jonah’s attack were kind, smiling and telling us Jonah is good far more often and causes smiles more than frowns.  My heart swelled so that tears came into my eyes.  Also he has been doing something new; whereas he used to take his shower and go straight into his room to lie down, now he is coming out into the main living room area to walk circles or sit on the couches with the other kids.  I am glad he seems to be moving toward some sort of socialization, even if the kids can’t really talk to one another (Jonah is one of the most verbal) and don’t actually play with one another in a traditional sense.

He can easily outrun me to the car (Andy could probably catch him, but I just started walking and running, and I tire easily).  There he found his precious grandma, but wanted mama in backseat?  After I’d gotten in the car and Andy had gotten in the driver’s seat,  Jonah turned to me and said “need help?”  I asked him what help he needed and he pointed to his shoulder.  I noticed Andy had forgotten to secure Boo’s harness to the clips on the back of the seat and I secured each clip, in awe of Jonah noticing this mistake and actually asking to be strapped in more securely.  I gave him a ScareMeNot and he stared out the window, watching for deer and the ducks in the pond as we drove off the property and to Andy’s apartment.

I'd brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window...

I’d brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window…

(This was supposed to be a photo of Jonah kissing Valiant Valerie, but the camera was still set on video, so it’s a one-second video instead).

After lunch and a bath, Jonah asked for grandma stay here? and Andy and I brought Jonah to transfer station. I’d queued up Guster’s Easy Wonderful CD but Andy asked him if he wanted Gunther or radio.  Jonah chose radio, which slightly annoyed me because I know Jonah loves Guster and would have been fine with it if we’d just put it in.  Andy calls Guster Gunther because E (who comes with J to bring Jonah to most of his doctor appointments) always calls them Gunther by mistake.  Music on the Top 40 radio stations all sounds the same to me.  I guess I’m a music snob.

Were I in charge of the music my boy is exposed to I’d play all kinds of different stuff, including Guster: all the Beatles CDs, some traditional children’s songs, Marlo Thomas’ Free to Be You and Me, Elton John, Kula Shaker, Crosby Stills Nash & Young, Billy Joel’s Glass Houses, songs from Sesame Street, Mozart & Tchaikovsky, 80’s pop music, They Might Be Giants, Simon & Garfunkel, the Grateful Dead, the Hilltop Hoods….all kinds of different things.  And I’d never, ever, ever, ever, ever, ever, ever play that dumb Taylor Swift song.

I suppose it doesn’t really matter, so long as he’s not listening to Gangsta rap or death metal.

Jonah’s like me in that his hair grows fast, and already he needs another haircut.  We’d like them to give him a buzz cut at this point, for it is getting to be warm, and that way it’s out of his face and will grow back in soon enough.

I’m anxious to take Boo on walks in the woods, push him on the swings, watch him dive into the pool, smile at his widened eyes when train comes toward us and passes by.  I want to take him to a Guster show and not have to leave.  I want to be with him on the beach, watch him cavort in the ocean and run barefoot along the jetties.

Yesterday M’s daughter J was here; we held hands and ran together to the park, where we kicked and bounced a beach ball around, and went on the slide together, and chased one another, laughing.  M and Jack-dog followed behind while J and I goofed around on the playground.  Later we walked, just J and me, to Stewart’s, where I let her pick out ice cream and a surprise snack for her daddy.  I looked around me and realized people figured I was her mother.  For a moment I knew what it was to be in public as “the mother” of a “normal” kid.

It felt, well….normal.  Which in my world is pretty damn strange.

I have two blooming multicolored tulips in my yard now, and I’ve re-stacked my stone cairns.  Time to oil my Buddha tucked into the bushes out front.  Time to make nature pictures in the woods.  Time to rejoice in the springtime.  May 1st is coming – my favorite day of the year, because it slams the door on winter with the satisfying sound of finality, and who doesn’t love that?

“Ha ha ha ha
People are laughing
Children are singing
Come join the dance

And the walls around us
Which we kept at such a cost
When we turned around
Came tumbling down

Ha ha ha ha
She can’t stop laughing
He can’t stop singing
First day of may!”

First Day of May by James Taylor

Posted in Anderson School, autism, grandma, haircut, music, Uncategorized | Tagged , , , , , , , , , , , , , | 9 Comments »

two handfuls of hair

April 26, 2013 by The Never Normal

Andy called yesterday to tell me Jonah had a bad tantrum/aggression in the van – not sure where they were going to (or coming from), but Jonah was being all snuggly & lovey with a caregiver one moment, then launched himself at her, grabbing a chunk of her hair.  Another caregiver tried to intervene but Jonah got a chunk of her hair too.  When it was all over, Jonah had two handfuls of hair and a small bruise.

I’d almost rather hear that some kid attacked Jonah and got a hunk of his hair than be told Jonah was the aggressor.

His caregivers are dedicated individuals who deserve to be wealthy, and though I have been assured they are paid better than at some other schools, I still don’t see why they don’t get more for what they endure, and how they love, and why they do what they do…which is essentially to be foster parents for groups of disabled children.

So many things work backwards in our world.  God forgive us all for not caring more about one another.

I know Jonah does not hurt others deliberately, or at least not with malicious intent, and I know he can’t help who he is and what goes on in his little brain…but that knowledge doesn’t fix anything or help the pain I feel when he hurts others.  In all my life I never imagined giving birth to one who harms people.  It’s almost funny.

And in a little more than two weeks he will have his big eye operation to take the Reticert implant out, in a last ditch effort to save what little sight he has remaining in his left eye.  The irreverent thought just came into my mind that if Jonah cannot see as well, perhaps he will at least start missing his targets.  Andy and I will have to be hyper-vigilant to ensure Jonah does not touch his eye shield or try to itch his eye beneath it.

Today I am going to visit my therapist and I will talk to him about my struggle with this ever-cyclic aggressive behavior I can’t accept and have no power to control.  I know better than to hold on to the wish to control it, and I know better than to place blame upon myself, or upon Jonah, or upon God, or upon anything at all.  I know better.  I just can’t help the tears that always come, the feelings that always arise, the frustration I always feel.  The fear that as he gets older and bigger it will only get worse.  Hopefully Dr. A. can help me with all that.

I know when there is a situation I cannot change, I can only change how I react to it.  And so I am making changes.  Now I exercise, eat better, meditate, pray, and take long walks in the woods.  I breathe deeply, in and out.  In and out.

I’m counting on the spring to bring new life, new hope, and new health, body-mind-spirit all working together to find the place inside where things are quiet and still.  Where music plays and my heart rejoices.  Where there is peace.

No one gives their dreams away too lightly
They hold them tightly warm against cold
One more year of traveling ’round this circuit
Then you can work it into gold

They say, “Jonah, he was swallowed by a whale”, hmm
But I say, “There’s no truth to that tale”
I know Jonah, he was swallowed by a song

Here’s to all the boys who came along
Carrying soft guitars in cardboard cases all night long
An’ do you wonder where those boys have gone?
Do you wonder where those boys have gone?

Jonah by Paul Simon

Posted in Anderson School, autism, behavior, doctor, iritis, placement, Uncategorized, uveitis | Tagged , , | 2 Comments »

no mama

April 22, 2013 by The Never Normal

“If you can’t make it better, you can laugh at it.”
~ Erma Bombeck

There remains inside me, despite every effort to squash its useless purpose, an ugly envy when I see beautiful photos of families – husband, wife, child/children, smiling, caught in a snapshot of happiness.  The knowledge that these parents may tuck their little ones in at night, or cheer them on at sports games, or watch them proudly in the spelling bee.  The realization that they have the opportunity to guide and teach and comfort their kids, to gather together in their own family unit, tucked into time itself with undying memories.

Of course this is foolish, imagining idyllic problem-free lives.  It is never so.  Behind every smile is pain, and in every life falls the rain of sorrow.  Yet I have but one child, too far away from me, and I am unable to guide him anywhere against the wilfulness of autism itself which cages him in its unrelenting grasp.  Jonah’s father is gone from me – and as necessary as it was, it is too often cause for feelings of inadequacy, of failure, of loss.

The mornings are hardest.  Awakenings.  In sleep we are all embraced by the quiet wellspring of a dark, unknown possibility and promise. Saturdays are question marks, when every week my mother and I punctuate the ride to Boo with silent queries and fervent prayers.

When we first picked him up at his residence, he was happy and excited.  The caregivers told us he ate two breakfasts and was behaving well.  He was calm on the ride to Andy’s apartment.

Jonah and his "octopus."

Jonah and his “octopus.”

Just a few days ago I phone-conferenced in to his IEP (individualized educational plan) meeting.  I heard encouraging news about his progression in verbal communication – he is learning to say “I like” and “I see” (etc.) to begin sentences, instead of just “I want.”  He is not yet generalizing this beyond the classroom, but I am confident he will.  They tell me he is most anxious (and therefore likely to aggress) when he is in large crowds or feels encroached upon by someone sitting too close – which is most likely why he only tolerates anyone in backseat for the short duration of the ride to Andy’s apartment.  Often he will ask for daddy in backseat, but I can’t drive Andy’s stick shift and neither can my mom.  I suppose I should learn.  How hard can it be?

They told me he has a rash on his penis which they are treating, and they are beginning to recognize it as a recurring cyclic seasonal thing.  He will have been there for two years in August.

The mind reels.

This last Saturday brought change, as Saturdays often do. He ate lunch on his garbage can perch, and had his bath.

???????????????????????????????

Whereas usually Jonah will ask for mama to ride with daddy to transfer station, instead he held his palm up to me when it was time to go.  No mama, he declared.  Mama stay here.

I smiled weakly and stayed behind, briefly playing with Andy’s landlord’s kids, Manny and Isabella.  They are cute kids, and Andy’s landlord looks like George Clooney:

I call him George

I call him George

Sweet Isabella with Protector Patty, a ScareMeNot.

Sweet Isabella with Protector Patty, a ScareMeNot.

I pulled Andy’s copy of Clan of the Cave Bear off his bookshelf and read a few pages about Brun and Broud, Creb and Ayla, until they all returned.  Jonah came flying in the door, and my mother and Andy said he did not want to come back to the apartment at all.  He wanted park.

We were all glad, since usually he only wants car ride. But once again he wanted no mama.  My mother felt so bad for me.  “Mama is coming too,” she told him.  “No…no,” he answered.  My mother decided to be the one to stay behind anyway, and I brought along some root beer for Jonah to sip in the backseat of the car, as incentive for him to let me come along.  He was not appeased.

OLYMPUS DIGITAL CAMERA

“I hold it,” he declared as soon as he was strapped to his safety harness.  Andy opened the can and poured most of it into a cup, which he gave to me, then he handed Jonah the small can with just a bit of soda inside.

Laughing, Jonah chucked it at us, splattering the dash and control panel of the car’s radio.

sticky mess

sticky mess

I cleaned up while Andy removed Jonah from the car and took off his harness, telling him “You blew it.  No park.  Quiet time.”

looks like an arrest

looks like an arrest

After this we went back inside, where Andy and I got Jonah to lie down on blue bed and each of us lay on either side of him.  He was quiet for a few minutes and then turned to me and held out his little hand.  I kissed his palm.  He lifted his leg out from under the covers and I held his little foot and kissed a toe.  More kiss?  he wanted.  Of course more kiss.  I kissed each toe, his ankle, his fingers…the softest place on his neck.

“I love you,” I  whispered.  “I love you.”

And then it was time for my mother and me to drive home.

Yesterday Andy asked me to play an online Texas Hold’em poker tournament he had won an entry into but could not play (actually he’d had to place high in several tournaments to get into this one).  There were 750 people in the tournament and nine prizes, the top prize being either $2,000 or an entry into the World Series of Poker in Las Vegas (which usually carries a 10k entry fee).  After two hours of playing I came in 6th place and won a whopping $40.  I do like to play and am fairly good at it.  It was a fun distraction to my weekend.

The world events of this past week are a shadow-cloud over my microcosmic thoughts.  Too much too much.  My therapist tells me not to listen, but it is impossible not to hear.  While I was sitting on the steps outside his office the day before, reading and waiting for my appointment, a blonde woman with a gold cross necklace asked if I minded if she set her coffee cup down.  I told her it was not my building and even if it was, of course she could.  We chatted a bit as she pulled out a cigarette and lit it, telling me things about herself – she was from NYC.  She didn’t like Albany.  She had been mugged twice.  A man from the Troy Record newspaper approached us to do a “man on the street” interview about the Boston marathon explosions.  I politely declined, but the woman was all excited to talk and have her picture taken for the paper.

“It’s those damn Moos-lums,” she declared.  “We have to ship them all back to their own country.  (And what country would that be? I thought to myself).  “It’s going to keep happening,” she added with certainly, pointing her cigarette at the dark-coffee-skinned interviewer.  He grew visibly uncomfortable and told her he could not use her comment about the Muslims.  She was unhappy about this, accusing him of being part of the liberal media agenda.  When she walked away, he and I talked for a bit.  I could tell he wanted to interview me instead, and again I declined, saying “I think it’s sad that the only time we seem able to be able to come together in solidarity is when there is terrorism or disaster.”  He nodded in understanding, and I stood up and went inside.

Boston.  Texas.  Seattle.  Denver.  China.  India. Japan…North Korea…etc. etc. etc.  The suffering is everywhere now, every day.  If nothing else, it helps remove the envy I spoke about at the beginning of this post, replacing it with gratitude and sympathy.  God help us all.

“One way or another, this darkness got to give.”  ~The Grateful Dead

Posted in autism, books, grandma, Uncategorized | Tagged , , , , , , , , , , , , , , , | 3 Comments »

in the middle in the middle in the middle

April 15, 2013 by The Never Normal

“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.

– – –

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

~C. S. Lewis

– – –

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.
– – –

“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

– – –

“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

Posted in autism, behavior, grandma, Uncategorized | Tagged , , , , , , , | 2 Comments »

the tired of a waning moon

April 7, 2013 by The Never Normal

When I was pregnant, I imagined a baby who’d grow into a reader like me.  So as my belly swelled, I read my favorite books aloud to him.   I’ll read to my baby every night, I thought.  He will grow surrounded by books, and we will love them together.

I bought him lots of books from The Book Barn in Latham, my favorite used book store, where it didn’t cost me a mortgage payment to create a child’s library.   And I did read to him every night, until it became apparent he wasn’t enjoying it at all.  He ripped up lots of books, my Boo.  He mangled them.  Jonah only wanted books if they played music, or had buttons to press and make sounds.  The rest of his library sat untouched.  Some of the books I gave to Jonah’s classrooms, and some to other kids.  Some I still have, here in the house.  They have his bite marks; some are torn.  I love them all.

A few weeks ago I couldn’t sleep so I got out of bed at 2am and ordered 7 or 8 books on www.amazon.com.  (When it is not 2am, I prefer to get my new books from The Book House, an independently owned local book store). So when I speak of these books I mean actual books, you understand.   Mockingbird and Out of My Mind were the first two I read, and both were amazing; remarkable.  Now I’m starting Wonder.  I am reading books again.  I read in cycles. For months I’d stopped, reading only newspapers, and now again I am voracious for books.

I like to hold print objects in my hands.  Books, magazines, newspapers.  There are the many unique papery smells, of course…musty & woody, shiny-new & linen-clean – and that same uniqueness in the feel of the pages –  recycled-rough, factory smooth, stained with coffee, crisp or yellow-thin…but there is also the added element of holding.  Print does not disappear at the touch of a button.  You don’t turn it off.   It is unsettling to me that print media is stored in cyberspace, an imaginary land where there is no semblance of anything sensory at all.   Hell, there isn’t even the pretense of it.   You hold a never-altering device, missing all these wonderful sights, smells, feelings.   I just won’t do it.

This blog is nowhere to be found in print, and that irony is not lost on me.

There are still people who don’t “get” (or perhaps have never even stopped to consider) the significance of the names Kindle and Kindle Fire.  They may as well have called the damned thing the Fahrenheit 451.  I do not have one and don’t plan to get one.  In fact I’m seriously considering a backwards move in the land of technology.  No cell phone, then no cable.   I’ll buy a Victrola and play 78s all day while reading in my rocking chair.  I’ll hold a book to my chest and hug it close, by my fireplace, glancing up to walls full of volumes, of albums, of plants.  I’ll be on 10 acres of woods, smack in the middle in a small cabin.  Animals everywhere.  The deer will eat out of my hands.  Okay, maybe not all those things.  But I shall have my books.

Boo never wanted bound pieces of paper that did nothing and meant nothing to him.  The most colorful, amazing illustrations couldn’t capture his attention.  I brought him to the library reading room toddler times.  As the other tots gathered ’round, criss cross applesauce, for The Cat in The Hat, Jonah ran up and down the long aisles of books, touching their spines, tap-tap-tap-tap-tap, screeching every so often.  I was an alien suddenly, thrust onto Jonah’s planet in a rocket I didn’t ask to get on and didn’t know how to steer.

We didn’t try the reading room toddler times again.

“Back then” (2004 or so) they didn’t have autism-toddler-time around here, which would have maybe been cool –to climb into a leaky boat with other parents who feel just like me and whose kids also want to tap-tap-tap on the books.  To not feel so scared and alone.

I feel scared and alone again.  I feel tired.  The tired of a waning moon.

Yet Andy drove Jonah up today and we had a good visit; Boo was lovey, laughing, and demanding all at once.  Two baths, two attempts at driving to train (neither successful), many kisses.  Jonah’s laughter at jokes of which he is both author and audience.  It was a good day.

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

Posted in autism, books | Tagged , , , , , , | 6 Comments »

if left untreated

April 3, 2013 by The Never Normal

Andy drove Jonah up to the glaucoma doc this morning and I met them there.  The good part of that is I got to sleep an extra half hour and I got to see my Boo.  The bad part was the damned operation they’ve scheduled to take the Reticert implant out of Jonah’s eye on the off chance that it’s still emitting steroids, in which case we need that to stop.  Jonah, as usual, was very good through all the exams and procedures, the eye drops and pressure gauge.  But his left eye is 20/400 (20/200 is legally blind).  And so May 14th he’ll have his 5th? 6th? eye operation.

After today’s appointment Andy brought Jonah outside and I stayed behind to talk to the doc and do the paperwork.

“Is there anything we can do to treat that eye…to improve the vision?”  I ask doc S.

“Well, if he were a normal boy…”  he starts.

That’s all I hear.  Yeah.  If he were a ‘normal’ boy he could wear glasses that he wouldn’t throw and smash, and he could have the permanent operation to redirect the drainage in his eye, but he can’t…he’d rub his eyes and crush the whole mechanism before it healed. 

Why can’t this doctor just answer the question?

He gives me a brochure about glaucoma.  It’s the brochure I read months (a year?) ago – the one that says glaucoma is an eye disease that gradually steals your vision and glaucoma usually occurs in both eyes, but extra fluid pressure often starts to build up in one eye first.

I tell him I have read the brochure.  I ask him about that first sentence – the steals your vision part.  He smiles at me, answers “if left untreated,” and is already out of the room before I can respond.

If left untreated. 

Well you just told me we can’t treat it, I want to yell after his retreating figure.

I realize I’m painting an unfairly poor picture of Dr. S. here, but what I want is the bedside manner of that rare, wonderful doctor who will sit, listen, and speak to you as though you are an intelligent human being (instead of aiming medical terms over your head then ushering you out the door).  But people rave about this guy.  He has “Best Doctor” awards all over his office.  (Today I noticed he’d re-arranged them). I’m sure he is a fantastic glaucoma specialist who’s great with the demographic of the majority of his patients:  an aging, docile population of ‘normal’ people.   He is kind to Jonah in an off-hand way but never learns that Boo does not converse and is never going to answer his questions about whether or not Santa came or what kind of Easter he had.  It isn’t like Jonah hadn’t been there 10 times or so before.

Grandma?  Jonah answers when the doc asks him one of these questions – and where can the doctor go from there?  I smirk, turn my head.  Way to shut him down, Boo.

And so after the doc appointment Andy brought Jonah to see grandma.  They all drove to the train in grey car and my mom told me later that Boo was good; they saw a very long train which pleased him very much.

Easter was kind of a blur.  Andy drove Jonah up and I met them at grandma’s.

Easter Boo
                        Easter Boo

My mom made delicious food but now it is always pre-packaged up, one for Andy, one for M and me.   There is no pretense of sitting down to eat and there hasn’t been for some time.  It’s better this way.  I love my mom for making the delicious food anyway and for getting Boo a beautiful Easter basket anyway, but I also fight to stay grateful – especially, for some reason, on Easter.  I see little kids all dressed up and going to church after their Easter Egg hunts…I am jealous of that whole piece.

I didn’t even go to church on Easter myself.  My favorite priest is retired and gone, and I wanted his Easter homily only.  I am a one-priest-Catholic, I guess. And now, I love Pope Francis.  His humility and simplicity – his gentle ways, his appeal for peace, for the poor, for the helpless.  It’s not as if I am a good Catholic – or a good anything, for that matter.  But this pope makes me want to identify myself with Catholicism more than any pope before him that I can remember.  I like to keep abreast of what he’s doing and I’m so happy that, whether people are Catholic or not, what he says and does will be a big influence on the world.  We could all use a leader with a little humility, if you ask me.

Anyway.  I don’t really like holidays anymore.  My favorite holiday is sleep.

Posted in autism, doctor, glaucoma, grandma, Uncategorized | Tagged , , , , , , , | 3 Comments »

m-i-l-k spells jonah

March 27, 2013 by The Never Normal

Andy and I are talking, making decisions, struggling to do what is best and right for Boo.  I know everything will be okay.

He drove Jonah up this afternoon to visit my mom and me at her house.  Jonah’s got the week off from school, and they’re coming up to grandma’s house for Easter Sunday too, so I get to see Boo twice this week.

When I first arrived, Jonah and Andy were already there.  At one point Jonah opened the fridge, peered inside, and reached for a bottle of soda.  Root beer? he said, placing the bottle on the counter.  It was indeed a bottle of root beer.  Andy asked how Jonah knew it was root beer.  My mom replied that Jonah knew the look of the bottle.

Then I piped up.  “He can read,” I told them.  (Now I know as well as anyone that he only can read some sight words, but I wanted to see which ones he knew).

I picked up a milk carton and, showing it to Jonah, pointed to the word MILK.  “What does this say, Jonah?”  I asked him.

“Jonah,” he replied with indifference.  Enough people have asked me to look at letters and tell them what I see, I almost hear him say.  Not you, too, mama.  Cut that shit out.

It has been a weird and wonderful day. I was treated to lunch by my lovely cousin-sister D.  She is inspiring and is a genuinely good, positive person, which is rare enough to be precious to me.  She listens as well as talks.  This is a skill, requiring awareness.  She’s better at it than I am.  She’s good at it like few other people I know.  Her spirit is bright and ready for a smart, engaging, adventurous future.  Go D!

Also I was able to talk to a lot of interesting people over the phone at work.  When your job is to be on the phone a lot, you may as well find out about people.  You can brighten their day, maybe, or be the person who listens to their story of how they built a business up from scratch 16 years ago.  You can’t just bullshit your way through caring how somebody’s day is going…that’s transparent, unless you’re genuine.  After all, who can’t see through that pitch when it’s thrown at them?

Now I am home, and comfortable with Jack, Almanzo, M, and Seinfeld.  It’s all I need right now.

Posted in Anderson School, autism, grandma, The Anderson School for Autism, trains, Uncategorized | Tagged , , , | 1 Comment »

a day of grace

March 24, 2013 by The Never Normal

Warning:  this post goes all over the place.  Please keep hands and feet inside the vehicle.

What a wonderful, sweet boy my Boo was yesterday.

Andy had picked him up the night before so when my mom and I arrived, Jonah was already there. Andy told us Jonah asked for both of us about 10,000 times that morning.  When I walked in, Boo immediately sought out the goodies I carried (one bag with natural potato chips and another full of birthday presents from my friend K). After capitulating warmly to hugs and kisses from my mom and me, he tore into the goodies..tune-fish sandwich…bath with new toys….more kiss?

His perch while eating is atop a white garbage container which sits next to Andy’s kitchen counter. It is Jonah’s dry bar  – and the garbage can, his bar stool. He tucks his legs under him, mama-style, and chows down to his content. Good thing Andy is very clean, but then again, no reason to be a germaphobe when your kid takes 5 baths a day.

only my kid

This is so Jonah

Nearly immediately thereafter (and sometimes during) his meal, Jonah decides it is time for bath. On this day, I help (usually Andy does), and we had fun splashing around in the bubbles with his new, courtesy-of-K, colored straws.

Colored straws!

Colored straws!

Here I must pause to reassert I am a lucky parent in several ways; for instance, it’s exceedingly inexpensive to bring him joy in the form of play. He is 11 and other children his age have lots and lots of expensive things. I don’t even know what. A gaming station, for certain. Hell, even I had one of those by age 12 or 13. (Mine was called Telstar Colortron and played pong). Anyway, I get off cheap. My mom used to buy him all kinds of electronic games and learning gadgets but he just didn’t really like anything unless it played music. Now he just bops along like a playah, listening to hip hop in the back of dad’s car.

cool as a cucumber

cool as a cucumber, pimpin’ the Gs

Then we played blowing raspberries (I have been watching All in the Family a lot).  Boo thought this was great – and, as usual, ended this very slobbery game by sucking his thumb.

He’s got a couple of new teeth (molars?) coming in, too, so he decided to use grandma’s hand to try them out:

he thinks grandma's hand is a teether

he thinks grandma’s hand is a teether

Jonah was happy to have grandma along in the backseat, something he has not tolerated lately. Grandma stay here? he usually says, and my mom stays at Andy’s apartment watching Fox News. But this day he was tolerant, even sweet and lovey. I love taking these pictures of Jonah with his adoring grandma.

o smiley boo

o smiley boo

Oh, it was a good day. A day of grace. A gift to all of us.

At that doctor appointment…the one I didn’t want to talk about anymore last post…Jonah was so very very good, I’d said. So good that the retina specialist could see both his Reticert implant and his optic nerve very well. So well that she turned away from Jonah and spoke to me in a low, controlled, serious voice: I’m very concerned. Jonah and J left the room while E and I stayed to talk to the doc.

The pressure in his left eye is at least 30, and she suspects higher. The optic nerve has thinned considerably, drastically more so than when she saw him a few months ago.  With his left eye, he could barely read the giant E on the chart.

little boo is better at the eye doctor than most adults are, including me

little boo is better at the eye doctor than most adults are, including me

From what I could understand, we are out of options but for one: do what Dr. S (the glaucoma doctor) has wanted to do all along – take the Reticert implant out. It isn’t as if Dr. F (the retina doc) has come to agree with him – it’s that she doesn’t know what else to try.  If we opt not to operate to take the damn thing out, his sight will eventually disappear altogether in that eye. If we opt to operate, the Reticert comes out but it might not do any good at all.  It’s a shot, though doc’s confidence is not high.

I keep remembering how much pain he experienced after they put the Reticert in his eye 3 years ago. It was the first time in his life, at age 8, that he verbally expressed pain. Eye hurt? he cried, hanging his head in despair-like desperation, cradling his forehead with one hand, pain pulling the words out of him.

Since the Reticert isn’t supposed to be dispensing meds anymore, it could just be left there, according to Dr. F.  But now she wants to try taking it out. E asked questions. I asked questions. Of course I forgot to ask a lot of questions. I scheduled the operation for May 14th, figuring there was plenty of time to change our minds, to research, to ask other people.  To think.  Absorb.

There is a doctor who comes from Boston to see patients at Dr. F’s office. I want her to get him over here to see Jonah before we do all this. I need a second opinion, a different perspective. It isn’t that I don’t really love and respect Dr. F.  I do think she maybe has difficulty dumbing things down for we lay-folk.  I didn’t understand well, for instance, that the eye pressure would in turn put pressure on the optic nerve, which is why it’s thinning out.

When I left her office with E, I was in a daze. I think E was, too. Poor peanut butter, she said, her loving nature holding all these children’s hearts to her bosom; her sharp mind keeping track of them, protecting them, listening, keeping on top of appointments, trusting her instincts. She and J are amazing. I have said it before and I’ll likely say it again.

When I got to the van, I was almost openly weeping, fearing the worst — total blindness — ready to curse God pre-emptively for a nightmare scenario which hasn’t yet occurred. Keeping it together for a moment, I kissed Boo soundly and turned away. Then E hugged me and J as well, and I got in my car and cried, allowing a fog to descend on everything. I can’t fight the aggression and the blindness and the 6% proposed fucking budget cut to the Office of People with Developmental Disabilities all at once.

And so I called Andy, my dad, my mom. Told M and a few close friends. A few people at work. People with autism are usually visual learners. The irony would be funny if it weren’t so maddening.  I called Dr. F’s office and asked for her e-mail address. I am not an orator and if I speak with her on the phone, I will forget half of what I want to ask her and most of she tells me.  If I can e-mail her, I can take my time to gather my thoughts and formulate my questions.

When my mother arrived yesterday, we hugged one another and I held on to her tighter and longer than usual. She loves Boo more than anything on this planet, I believe, and that is why she can know my feelings perhaps better than anyone except Andy. We only talked about it a little. We both said we would give him an eye if we could, and then we had an “argument” about which of us should hypothetically give him an eye, and she declared it should be her eye – which sees very well, she’ll have me know. Besides, I need my eye for work, she asserted. It was a ridiculous conversation but it kept the focus (pun intended) away from the fear.

And then the beautiful scent-of-spring Rhinebeck cold and a wonderful day of grace.

If you know me at all you will probably be surprised to hear me say this but I would love to take Jonah to see Pope Francis.  How cool if he were even to be blessed by this man who wants us all to be humble, to protect the weak, the environment, the poor.  I love Francis’ humility and his gentle spirit.  I smile when I read about what he says and does.

I would maybe take Jonah to Lourdes, or a faith healer I believe in (is there any such human?)  I am buying him essential oils. I’m becoming more willing to try anything innocuous as long as it is not downright ridiculous. And fewer and fewer things are sounding ridiculous. You can’t understand how desperate you can get until you walk a mile in the moccasins.

This is why I love working with prospective adoptive parents. I understand their emotions, if not their exact situations. I get it. I know what is like to want something so badly, to have all this love and all kinds of questions like when is this going to happen and is this going to happen and my God who can I trust who really cares who has a heart? I understand what it is like to be part of a vulnerable population.  Plus I am adopted and it gives me a special connection to them all.

Divinity is prodding at me. My faith is so weak. A fucking mustard seed. I am the atheist in the foxhole (though I never was an atheist) in the sense that I find it easier to reach out to God when knocked to my knees, even to a God I don’t understand or can wrap my mind around. It makes sense that there would be a Jesus son of God in order for we humans to wrap our minds around it all.  A human you can relate to – even one who tells puzzling stories and heals people left and right. Why do I struggle so with the concept of God and accepting Jesus into my heart?  Is it all the truths I see in other religions?  Can’t I love and pray to Jesus and still believe others will go to heaven too?

Do I have to believe in what I can’t help seeing as a “special club” mentality of I’m going to heaven and you’re not?

I would rather follow Jesus through actions, evangelize through deeds. I would rather listen and act upon the wisdom of Buddha as well. I would rather believe there is a chance for us all to experience an afterlife, a rebirth, something other than nothing.

At any rate now I am praying. And in my old Catholic way. Praying to the Mother, to Mary, to help us, to intercede on our behalf. The Protestants don’t understand why we pray to some saint to intercede when you can just go straight to God, and I’m not sure I’ve got an answer for them, but I know St. Anthony comes through for me when I lose something important, and I feel Mary listening, empathizing as a mother who raised a difficult son of her own. Sometimes when I pray to Jesus it is more like Guster’s song Empire State:

“I’ve been talkin’ to Jesus, but he’s not talkin’ to me…”

It is difficult to “give it to God,” and it is a fine line. Do you throw up your hands? Are you supposed to step completely out of the way?

Please feel free to chime in.  These are not hypothetical questions, and I am seeking…

He conquers who endures. ~Persius

Posted in Anderson School, autism, doctor, glaucoma, grandma, iritis, Uncategorized | Tagged , , , , , , , , , | 2 Comments »

birthdays, rain, what i don’t want to say just yet

March 21, 2013 by The Never Normal

There is a lot to say, and I’m in one of those slumps where writing is effort and, more than effort — an exercise in telling when it is easier to stay silent.  When it is preferrable to play an online scrabble game instead, or watch another episode of All in The Family.  To bury my face in a familiar book and re-read it for the fifth time.  To sleep.

Today is M’s birthday; tomorrow we’re going to see Lewis Black, a comedian we both love.  And on Monday I went to see the Beatles band Rain at the same venue with my awesome friend K, her husband, and his sister.  Had a wonderful time, and ate, appropriately enough, at the Old English Pub first.

K gave me a gift bag when she picked me up for the show.  I had no idea why, until she explained it was a birthday present for Jonah.  Stunned, I looked inside.  She’d gotten him two cool rubbery sensory toys, a tennis-ball sized bouncy-ball that lights up, a big bottle of bubbles, and some sidewalk chalk.  I was hoping she wouldn’t see as I tried hard to keep it together but tears escaped my eyes anyway.  At least I was quiet about it.  Only a scant few times, since Jonah was three, has anyone outside my family given Boo a birthday present – or even acknowledged or mentioned his birthday.

On his third birthday, the last kids’ party I ever had for him, he was so completely disinterested.  Jonah didn’t care about the party at all.  As the kind parent guests arranged games for the little kids, I was upstairs trying to coax Jonah back to the party when all he wanted to do was sit and stare out his window.  After that I only had family parties, and, a few years later, no parties at all.  At least he had a good one this year at his residence, with presents, pizza, and balloons.

I have learned not to care so much whether or not people remember his birthday.  I get it, after all.  People don’t know what to get for a kid with autism.  Or they hear me say “he doesn’t know his birthday from a hole in the ground” and so they figure I don’t think his birthday matters.  I understand, and don’t expect.  Hell, I forget birthdays all the time.  But K’s gift sure was a wonderful surprise.

I took one of her gifts with me today when I met Jonah (driven and accompanied by J & E from school) at his retina doctor’s office.  E told me Jonah had an aggressive incident at school today and had to be held.  But he was a very, very good boy for the appointment, for all the eyedrops and demands to look here and there, the bright lights, the plastic thing to be held over each eye as we request he read letters and numbers over and over, the machine he must put his chin inside.  All of it.

Jonah was a very good patient today.

Jonah was a very good patient today.

Because he was so good, the doctor got a better look inside his eye then she ever had before.

I’m sorry.  That’s all I can write tonight.

I’ll come back tomorrow, or the next day.

I love you, precious Boo.

Posted in Uncategorized | Tagged , , , , , | 3 Comments »

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