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bye bye rainman. bye bye.

Posted in autism, haircut, Uncategorized, tagged , on July 30, 2013| 6 Comments »

Well I got a grip, just as I promised, and continue to face forward, move slow, forge ahead.  Those are lines from the song The Captain by the band Guster, who, incidentally, played at Tanglewood on the 23rd.  I didn’t attend, even though it was Brian-the-drummer’s birthday.  I would have loved to have gone, but it’s not like I haven’t seen them 19 or 20 times;  I can live through one season without seeing a Guster show.  I guess.  

I’m mostly learning how to live my new life.  Working from home is wonderful and surreal all at once.  I never know what day it is until it’s go-see-Boo-Saturday — and I eat, garden, read, clean, go the market, etc. at weird times.  

With Jonah I fight stagnation, against a dull acceptance of what feels like a fight I can’t win.  Andy gets the majority of Jonah’s affections, but also the majority of everything else – embarrassments, messes, attacks.   My mother laments that Jonah “just isn’t interested in anything,” though she doggedly drives down with me every Saturday to face the mysterious nature of Boo.  I did not mean to sadden my parents this way.  They have no other chance at a grandchild — and they were both so excited when I announced my pregnancy on Flag Day 2001.  It is true what they say — the best way to make God laugh is to announce your plans.

But I see glimpses of wonderful things in Jonah which I believe could grow, and be nurtured.  His sense of humor.  The funny vernacular, all his own.  He is interested in things.  I know he is.  I’m grateful his school provides activities and “field trips.”  With us he mostly just wants the car ride, and, as soon as we turn on the car, music…

For those of you who don’t speak Jonah, he is saying “want music on?”

Yes, he still requests “bath” and still he loves the lunches my mother brings down, and he seems to enjoy our presence, mostly, with smiles and whatever sense of comfort the weekly visits can give him, though it’s always a crap shoot, every time.  You gotta like gambling, or at least you gotta get used to it.  This past Saturday Boo was cute:

you can see the smile about to bloom on his face even without seeing his mouth

You can see the smile about to bloom on his face even without seeing his mouth.  his left eye looks a lot different to me than his right eye.  More doc appointments soon…

…but he was also all about daddy.  More hugs, give bath, want kiss — all daddy.  No mama, bye bye mama.   Bye Bye Rainman. 

Like in the movie:

Raymond Babbitt: You were in the window. You waved to me, “Bye bye Rain Man”, “Bye bye.”

(Thanks K, for the reference, the giggles, and the better title for this post)

My mom was there but Jonah wasn’t interested in her much, either.  On days like this I remind myself the pendulum will swing and he will again love and hug and request grandma and me, but I can’t tell you it doesn’t sting when you’ve driven to visit your only child who wants nothing to do with you and actually, mama, if you could get even farther away from me, that would be grrrreat.

He had his ups and downs this week.  I think we were called three times during the week about when Jonah needed managements for aggression.  I know what the people who have to try and hold my Tazmanian devil are facing.  They’re getting physically hurt by my son, and Andy and I used to be them, and I want to thank them for saving me because I was really running on empty there for a while. When I allow myself to ponder it on any level but its surface, I am dizzy with disbelief. 

I disbelieve I have a son who is violent, even while I know he is.   I disbelieve how changed everything is for all of us from 3, 8, 12 years ago. Some of it is so ironic.  I followed the whole attachment parenting thing, for the most part, during Jonah’s babyhood.  Now I could not be much less attached physically, and we’ve only got that on-and-off attachment emotionally.

And then I think of his day school, three years ago, and how they were doing nothing BUT managing him.  All day. Every day.  I think of what living with Jonah’s aggressions did to me, and to his father.  And I realize it takes a long-sighted perspective to see where Boo stands in the grand scheme of things, and how it’s actually not all that bad.  He’s 11, and like any 11-year-old, his hormones are changing. He’s growing up.  Because he has autism and is just a little bit verbal (and not at all conversational), I tend to think of him more in terms of his cognitive ‘age,’ rather than his actual age.  Would you believe me if I told you it is difficult to remind myself he is 11?  It is.

I changed one child’s diapers for nine years.  It kept him a baby in a weird way, in the way I feel he will always be my “baby angel.”

Some days, this blog is more therapy than anything else for me, and this is one of those days.  I write about (and through) problems and perspectives as I consider, question, and allow myself to go numb, in turns.

More fun on Saturday: the rare occasion when Jonah sits nicely at the table to eat.  This is one of photography’s grand illusions:  to conjure a scene about which the perceiver then makes an untrue assumption.  The photograph does not lie, nor the photographer – but the snapshot of the moment can give a false impression, whether intended or not so at all (as in the pic below),

see how is leg is wrapped around his other leg? that's his mama all the way.

See how his leg is wrapped around the other leg?  That’s his mama all the way.

The truth is Jonah is in near-constant movement.  A few seconds in one place.  Maybe a minute.  They say he sits for 15 or 20 minutes in school to do a project or activity).  Jonah prefers to get up, walk around, turn a circle or five, and return to home base. I sometimes turn with him, we twisting and whirling on the carpet like two strange birds.  

I’m looking forward to Saturday.  I will always have hope for my Boo, for the rest of his life, one day following the next beneath the sun and stars.

sweet boo

sweet boo

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doctors to donuts

Posted in autism, doctor, glaucoma, haircut, singing, Uncategorized, uveitis, tagged , , , , , , , , on June 19, 2013| 7 Comments »

This has been an extraordinarily fantastic day.  My blog is usually so filled with frustration, sadness and despair – but not today.

First, it is a warm, slightly-breezy, summer-calm, bright, quiet, Paul-Newman-eyes-sky June day.

Now take a deep breath for this wondrously lengthy run-on sentence:

Since I no longer work in a building dressed in office clothes in a windowless area where I am isolated at a facing-a-corner desk, under pressure must-make-money selling advertising over the phone, BUT, rather, am now employed as a writer – typing tip tap tip in my hippie skirts and comfy t-shirts, from home, on the couch, for a charity I love, with the TV tuned to “light classical” 1270, all windows open, house clean, food & drink for whenever I feel like eating, Almanzo-kitty and Jack-dog at my side or in the yard, breezes and birds calling me outside where I stretch and break from work to water plants, walk barefoot to the park, garden a little…whatever I want so long as the work gets done, I am grateful because this alone makes every day like a fantasy-dream come true.

I can’t really express how I feel the need to pinch myself each day.  I wake when I want and I don’t have to go anywhere at all.  The work I do feels like painting a picture or making nature art by a stream.  Creation.  It’s a joy for me to write.  And I am unbelievably blessed.

What a deliverance. 

As the shock begins to wear off I am finding myself breathing slower, feeling more relaxed, smiling inside and out.  I sit in meditation easily.  My head and heart are clearer.  I’ve befriended new neighbors and gotten closer to old ones, and when I do not have writing work, I love to spread the word about Modest Needs, the foundation for which I am now director of communications.

But that’s just the groundwork for this awesome day.

Jonah’s caregivers, P and N, drove him up to this “second chance eye doc visit” (after the failed appointment-cut-short exactly a week ago today).  I met them at the van and Jonah came bounding out, smiling wide and with a fresh new hair cut.  We walked around outside and in the lobby for a good 20 minutes before they called P’s cell to tell us to come up and into an examining room.  Usually I underscore every last detail of all this, but today I will simply tell you Jonah was an angel.  A “normal” kid could not possibly have been more cooperative or have amused him/herself any better.  After waiting those 20 minutes downstairs, we waited again from 10:30am (when they called us in to a room) until 11:30am (when the doctor finally came in) and I tell you he was the picture of patience.

He walked in tight circles and we played “high five” and sang songs – everything from “I’ve Been Working on the Railroad” to Guster’s “Keep it Together” to “B-I-N-G-O” to “Bye Bye Blackbird.”  I gave him a green octopus and many white tic-tacs.  He asked for hug and more hug and kiss eye and more kiss, over and over, his repetition sweet music.  I held him tight and kissed his eye, the top of his head, his shoulder…we made a game of it — we made a game of everything — he was happy and giggling, asking for donut? even as I made up a song about him asking for donut.  N and P are incredibly cool and we were able to talk and laugh among ourselves and along with Jonah.  

Donut?  Donut? he asked several dozen times, lest we forget.  He knows the drill: Number one: doctor.  Number two: donut.  Donut?  Donut?  “Yes, Boo, of course!”

He never fell apart, and we checked out and walked back downstairs.  I hugged P and N goodbye before kissing Boo soundly and sending him off to get his beloved donut.

I’m not going to ruin this post with details about Boo’s eye.  Later.  For now, just pictures.  I took several – here are some good ones:

First I opened the door of the van and gave him green octopus

First I opened the door of the van and gave him green octopus

happy boy, waiting in the lobby

Happy boy, waiting in the lobby

walking into the eye doc office

Walking into the eye doc office

...and being a really good boy for his ultrasound! ...and being a really good boy for his ultrasound!

…and being a really good boy for his ultrasound!

It was damn near a miracle.

Today I pray one of my two main prayers (the other is please): 

Thank you.  Thank you.  Thank you!!!

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sans octopus

Posted in Anderson School, autism, behavior, doctor, glaucoma, grandma, haircut, singing, singing, Uncategorized, uveitis, tagged , , , , on May 30, 2013| 2 Comments »

“Likely as not, the child you can do the least with will do the most to make you proud.”

Mignon McLaughlin

It was the first thing Boo asked for when I met him at the car; Andy had just driven up to the eye doctor’s office and I was there, yesterday, waiting for them.  “Octopus?”  he said when he saw me, reaching out his hand.  “Hi, Boo.  I’m sorry.  Mama forgot the octopus,” I answered, cursing myself.  I’ve bought him so many octopi and he destroys or loses them all, or they get so grimy and un-washable we have to toss them away.  But next appointment I’ll be sure to have one at hand.

Jonah and his "octopus."

An older picture of Jonah and his “octopus.”

This is a picture of what Jonah calls “octopus.”  Any kind of those squishy rubbery toys with nub or finger-like appendages will fit the bill – even those that look like caterpillars or balls.  To Jonah they are all octopus.

He was a good boy in the car ride up, and a good boy at the eye doc office, even though we had to wait a good while in a small room.

Daddy played 'push and pull' Jonah's legs while we waited.

Daddy played ‘push and pull’ Jonah’s legs while we waited.

After a while, Jonah started turning his circles in the small area, becoming less patient.

You can see where we've cut the hair along the top of his head to keep it away from his eye shield. What he needs is a buzz cut for the summer.

You can see where we’ve cut the hair along the top of his head to keep it away from his eye shield. What he needs is a buzz cut for the summer.

We sang “I’ve been working on the railroad” for a while, trading lines, but then he stopped and said “no,” clearly done with that entertainment.  Finally, I thought the taking of the pictures themselves might occupy him. Sometimes it makes him mad, so usually when I take photos I do so surreptitiously.  But this day he enjoyed it.  I took one of him with his daddy and then daddy took one of him with me:

Coming in for a hug with daddy.

Coming in for a hug with daddy.

Sitting on mama's lap

Sitting on mama’s lap

Eventually Andy went into the hallway to tell someone that Jonah was fixing to have a tantrum (though he really was still being good) — we knew the longer he was left in the room, the harder it would be for the doc to examine him once she arrived.  Soon afterward the doc appeared.  She had me take all the tape off his eye shield and remove it altogether; I hoped against hope we could leave it off for good this time.  But his eye still looked bloody and the pressure was too high (around 32) – both of which things, she told us, were to be expected.

She put two kinds of eye drops in his eye, one of which stings, and did an ultrasound with blue goo all over a wand against his closed eye.  All of these things would bother an adult, let alone a child of 11 with autism.  But my little trooper was so good – he patiently let her examine, shine lights, and more while Andy and I waited anxiously.

She said the ultrasound looked like things were much better, and she wanted him to have two more appointments, a week apart.

Unfortunately, we had to put the eye shield back on.  Jonah seemed resigned to this and happily gave both of us kisses when it was all over.  I needed to return home to work, but Andy brought him to see grandma, and then back to his residence, without much trouble at all.

I was so proud of my Boo.

Thank you to all of you who sent prayers and well wishes through comments, or through my facebook page, or by e-mail, or live and in person, or in your hearts.  Jonah loves you all, unconditionally.  Mama promises.

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djonah unchained

Posted in Anderson School, autism, behavior, doctor, grandma, haircut, The Anderson School for Autism, tagged , , , , , , , on May 6, 2013| 3 Comments »

“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…

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a better heart

Posted in Anderson School, autism, grandma, haircut, music, Uncategorized, tagged , , , , , , , , , , , , , on April 28, 2013| 9 Comments »

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

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from the big island back to boo

Posted in autism, behavior, grandma, haircut, swimming, Uncategorized, tagged , , , , , on February 24, 2013| 5 Comments »

Yesterday’s visit with Jonah was surreal.  I guess I’m still jet-lagged and I felt like a dullard, all in a fog and very tired.  But Jonah was a good boy, calm and smiley.  He got his haircut but it looks like all they cut was the front.

still a ragamuffin boy

still a ragamuffin boy

I gave Jonah lots and lots of mamalove, kissing his hand and his head and his face, giggling with him, hugging him tight.  Andy picked him up for visits 5 days in a row, I think, this past week, because Jonah had no school and he was being a very sweet boy.  Naturally, Jonah will ask for his daddy to help him do a lot of things now – daddy give bath?   Boo is truly a lucky boy to have such a wonderful father.

To come back from paradise to grey skies and this cold Northeast is harder than I’d imagined.  Had I no responsibilities, I would short-sell my home and possessions and move – do not pass go –  to the Kona coast of the Big Island.

Where we stayed

Where we stayed

But I can’t, and I wouldn’t leave my Boo, and I can only hope to visit again.  Hawai’i has a whole different feel – mellow, smiling people and breathtaking beauty everywhere.  I took more than a thousand pictures.  The black lava rock is mineral-rich and yields growth of palm and grasses.  It is not as expensive as people say.  The tourist places are, of course, but we found delightful markets where we could buy snacks and drinks, and even a tiny eatery where you can get a full breakfast for $5.  I met more people than I imagined who now live there but were former tourists who felt Hawai’i’s pull to be irresistable.  I understood.

The island sang to me; it got inside my soul.  Although I’ve traveled a good piece of this world, no other place has felt this way to me.

No road rage, honking, “us vs. them,” anger, rushing, or stress…and what seems to be a healthy mutual respect between visitors and locals.   And my God, the sunsets framed by palm trees.  Sapphire waters.  Pineapple, mango, apple-bananas, macadamia nuts.  Mongoose and dolphins, whales and sea turtles.  White, black, and mixed-sand beaches.  Weather that never varies from its 75-82 degree breezy perfection.  We never saw a drop of rain, though if you travel to other parts of the island there is rain aplenty.  It is not crowded at all – I’ve seen crowds 100 times the size at Cape Cod and Ocean City.  If you can do it, go.  Go!   Boo would have loved it; I wish it was in any way possible to bring him. I am going to get that child to the ocean this summer.

Here are a few pictures, of the 1,273 or so that I took!

Buddha Point at our resort was a great place to watch the sunset

Buddha Point at the Hilton Waikoloa Village was the perfect place to watch the remarkable sunsets

hangin' loose with a lovely hula dancer

hangin’ loose with a lovely hula dancer

even though jonah is an expert swimmer, i can't even go underwater without plugging my nose!!!

Even though jonah is an expert swimmer, I can’t even go under water without plugging my nose!!!

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

Whales...

Whales…

...and sea turtles...

…and sea turtles…

...and dolphins...

…and dolphins…

...oh my!

…oh my!

and the view from our balcony (lanai) at sunset

and the view from our balcony (lanai) one sunset

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whose boy is he?

Posted in autism, grandma, haircut, singing, Uncategorized, tagged , , , on February 2, 2013| 6 Comments »

“There is love, there is peace in this world.
So take it back; say it’s not what you thought

Grab a hold, take these melodies
with your hands, write a song to sing…
Isn’t such a bad, bad world!”

~ Guster, Bad Bad World

What a wonderful visit with Boo today.  Lately he doesn’t want grandma to come with us to transfer station (our weekly recycling destination) so my mom stays at Andy’s apartment and watches Fox News.  But just like last time, just like she said, he knew exactly what was for lunch.  You could have given me a year and I would have never figured out there was a pattern, even one as simple as every other week.  My mom even brought Jonah a surprise – potato chips and dip. 

He was in heaven.

chips n dips

“chips n dips?”

He wanted mama to help him at bath time, and it was fun to watch him splashing around all goofy and happy.  Kiss hand? was again an oft-repeated request, and we sang his new favorite song, which is actually an old favorite song my mom taught him years ago.  We sing it to the tune of “London Bridge:”

Jooooo—na Russ is Grandma’s boy, grandma’s boy, grandma’s boy!
Jooooo—na Russ is Grandma’s boy, yes oh yes he i—is…

The care workers at his house know the song, as Jonah has taught it to them.

shaggy hair kidwith his lovey grandma

shaggy hair kid
with his lovey grandma

My mother really wants them to cut his hair.  It think it’s cute all bushy and long on top, so I don’t push them to cut it. 

Sorry, ma.

Jonah, leaning into grandma

Jonah, leaning into grandma

And so it must be confessed that Jonah is a grandma’s boy.  She’ll get to see him on her birthday, which I imagine will be her favorite present.

I feel a lot of love in my life right now.  Thank you all for every time you express it toward me, or Boo, or Andy, or any of us.  I’m putting it out there, too, consciously, engaging only in emotions which carry me forward along the river running through the world, which isn’t such a bad, bad world after all.  I’m in a card-and-care package-sending-mood, and I’ve been doing things like writing letters to the people (and the bosses of the people) I encounter in the world who are awesome, who have gone above and beyond, whether they have helped me negotiate Jonah’s Medicaid system or just been really kind and friendly to me at the grocery store.  I know I’d like it if someone wrote a letter of praise to my boss about me.  I hope they all get raises.  Perchance to dream…

When the terrible things happen, like the standoff in Alabama with that 5-year-old boy in the bunker with the Vietnam vet, I try to combat the awfulness with goodness, however I can foster it.  If I don’t, I lose faith in humanity too easily, too frequently.  I become hypnotized by all the anger…by the illusion that any of us is an other to be bullied, manipulated, hated, dismissed, captured, or even killed.

Boo restores my faith in humanity.  It happens every Saturday when I walk into his house and he runs into my arms.  It happens every time he re-directs himself without an intervention…every time he asks for hug from daddy and I see the beauty in the way they embrace…every time he laughs with his silly, uninhibited, pure joy.

I got some good video of his laughter today toward the end of this 40 second video – and a lot of his turning in circles:

I love how the video starts out with my mother admonishing him for something:  That’s not funny… and then at the end how he comes right at me: more hug?

“Laughing brains are more absorbent.”
~ Alton Brown

I like to think Jonah’s brain is a laughing brain.

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baby chick head

Posted in autism, behavior, haircut, swimming, Uncategorized, tagged , , , , , , , , , on August 5, 2011| 1 Comment »

Jonah had a relatively good day in school yesterday, which was very cool to read in his log book – he’d gone roller skating and loved it.  He loves yoga too, and his scooter they pull him around on with a weighted-vest.  My sensory-craver boy…

Then D came over and Andy and she and I brought Jonah and the clippers outside, to the outlet halfway down the driveway – and between the three of us, we buzz-cut his hair.  D did the actual buzzing while Andy held Jonah and I sat on the driveway holding Jonah’s legs between Andy’s legs so he couldn’t kick or thrash.  He was hopping mad, of course.  It looked like a circus act, with hair flying everywhere and Jonah twisting around.  Good thing the neighbors weren’t out.  Afterward we had a near-bald boy who immediately ran inside to look at himself in his bedroom door mirror and run his little hand through its baby-chick-head softness.  I went outside to the driveway where all boo’s hair was scattered and picked up a lock.  Maybe it is silly, but I want it to hold when he is gone and I can’t be with him.

Of course he gave D and I plenty of trouble on the way to H’s house and pool.  Safe hands? he’d ask D, wanting her to hold both his hands.  She’d turn and hold his hands, then he’d try to pick his nose or swipe stray hairs from his face, so she’d let go, only to have him beg for safe hands again.  Over and over.  He kicked the back of D’s seat and head-rest, hit the windows HARD, flat-palmed, and screamed his loudest, his someone-is-murdering-me screams, laughing and giggling afterward.

What?  D and I would ask each other, unable to talk above the noise.  No wonder I am going for a hearing test this afternoon.  Between Jonah, my concussion, and all those loud 70s/80s/90s concerts I saw (like KISS, Rush, Def Leppard, Jane’s Addiction, and every other band where I’ve sat too close to the speakers on purpose), my ears are suffering.  I always did like my music loud.

Then Jonah started to beg for hot dog.  Hotdogwithmustard?  he asked repeatedly.  Hotdogwithmustard?  My plan was to stop at Stewart’s on the way to H’s, but then I called H and she said she still had some from the last time I brought some over, so she prepared one in her microwave, God bless her, so it would be ready upon King Jonah’s’ arrival.

Finally Jonah got both his naked swim and his hot dog and all was right with the world for a few moments, though the entirety of our visit was maybe 15 minutes, tops.  ADHD?  D and I were half-jokingly recalling the blessed days (which we used to complain about, believe it or not) when he would perseverate on just one thing at a time.  Let’s ride the escalator 75 times!  Let’s stare into the street sewer for a half an hour!  Let’s go on the merry-go-round 8 times in a row!

Going on the assumption that most folk prefer pictures over poetry, I’ll make sure to come back later and post some.  I might even upgrade my account so I can post video.  I’m taking pictures and video of Jonah with ever-increasing frequency, as if I can capture and visit him whenever I want.

“The candlelight flickers
The falcon calls
A lime-green lizard scuttles down the cabin wall
And all of these spirit voices
Sing rainwater, seawater
River water, holy water
Wrap this child in mercy…”

~ Spirit Voices by Paul Simon

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a bird in the hand

Posted in autism, behavior, haircut, Springbrook, Tradewinds, Uncategorized, Wildwood, tagged , , on April 11, 2011| 7 Comments »

Cheryl DeDecker from Springbrook did call us and she basically told us that Jonah would not be able to enter their current program because of the level of his aggression (the kids share rooms and he could hurt his roommate) but that they think he’d be a perfect match for the new residences they are building, where every child has his/her bedroom.  The problem is, the new buildings are evidently earmarked to get NYS kids attending out-of-state programs back into NYS.

She wants to advocate to place Jonah in one of the new buildings under construction right now, and I told her I would help her do so, but there’s no guarantee we’ll be able to get him in – and if we did it would be October or November at the very earliest.  I don’t know if we can make it until then.

On Thursday, April 7th, this is (in part) the note Wildwood sent home in his log book:  Jonah had a tough day today.  He’s had 5 aggressions – 3 being of very high intensity.  We had difficulty getting him in and out of the safe room because he wouldn’t stop aggressing.  We had to hold him in the safe room until he was calm enough to leave. 

Next day:  Jonah’s had 6 aggressions today – some more intense than others…

Meanwhile he’s already been accepted at Tradewinds and we liked it there too; they will likely have a spot sooner and their kids all have their own rooms. Andy and I don’t know what to do. We don’t want to risk losing the Tradewinds spot by holding out for Springbrook, which may or may not take him at all.  Not that we know when there will be an opening at Tradewinds, because we don’t…but it’s a bird in the hand.

Andy says he’s doing okay emotionally – my cousin D came and helped him this weekend while I was working at our yearly convention in Saratoga.  They shaved his head because it was getting so long, and I came over Sunday to help for a while; Andy was just getting him out of the car and Jonah was limping awful – so pronounced it brought tears to my eyes, and I must have cried for 4 hours over our whole situation and probably exhaustion from the weekend mixed in.  Jonah’s been limping but it’s getting worse, and there are no pediatric rheumatologists in our area.  We have to figure something out though, because it’s obvious something is really wrong with his leg – every morning he limps now, Andy tells me.  Andy is holding everything together while I fall apart, weeping and worrying.  Paarents of these kids are not supposed to be so weak.   It’s simply not allowed.

And yet I’m the weak one in a sea of strength.

That’s going to have to be part one of two, because I’m out of time to type…I’ll leave you today with some new pictures of Jonah Russell:

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3/4 of a haircut

Posted in autism, behavior, escalators, haircut, tagged , , on January 18, 2011| 3 Comments »

So last weekend Andy and I decide to go to the Capital Region’s deadest mall, knowing one of their last remaining open stores is a haircut place and seeing it is obvious Jonah looks kinda sheepdog-ish and definitely needs a cut:

Here he is, pre-haircut, eating egg & toast (one of his new favorite food requests) at grandma’s house. 

So we tell him we’re going to the mall.  When we arrive, the escalator isn’t working and they’ve blocked off the mall entrance to one of the two last remaining magnet stores because the mall proper is kept so cold that the employees of the store can’t stand it, and I’m thinking how much longer before this place goes under?  Is it just a mafia money-laundering machine? 

I certainly can’t envision any way in hell the mall is operating in the black, but our mission is to get our kid a haircut, so I cease my mafia fantasies and we proceed past the freezing cold mall-walkers and into the haircut place, which is the most crowded area in the entire mall.  M and I took Jonah here once before and Jonah remembers everything – he plunks himself right down in the same chair he sat in last time, and straightaway eyes the candy machine where we’d fed quarters into it to procure handfuls of colorful stale skittles with which to distract him. 

That time he was first in line, however, and this time we’re third in line.  It’s not a long wait but any wait starts the time-bomb ticking for Jonah Russ.  So when we’re called in it’s to a different chair, and Andy immediately announces to the stylist that she’s got 5 minutes and only 5 minutes.  I explain Jonah has autism, and she does her best, quickly fastening the bright-red cape over his head and getting down to business.  But soon it’s apparent Jonah’s not having it.  We’ve fed him all the candy I bought from the machine and Andy positions himself in front of Jonah, holding his arms, while I promise a lollipop and we start a 5-mnute countdown.

“Five more minutes, boo,” we tell him, and then we continue to count as the stylist clips and shaves his sideburns and Jonah starts to intone “all done” over and over with increasing urgency.  I can hear the time bomb begin its final loud ticking and sure enough, just as we announce “one minute, almost done,” Jonah launches himself at Andy and out of the chair.  Andy rips the cape off his neck and leads him to the entranceway, where they start to struggle. 

I quickly hand the stylist a twenty dollar bill for the twelve dollar haircut and she disappears, presumably to get me change, and I can feel other clients and stylist’s stares burning holes in my back, but it’s funny how you learn how not to care – so I turn and follow Andy and Jonah out of the store and into the hallway, where the struggle/attack continues and we finally settle Jonah on the bench right outside the glass windows of the haircut place (free show, everyone!) , his head 3/4 cut and 1/4 sheepdog.  Later we snipped at his head in the bathtub and now he looks at least passable. 

So now Andy’s on his 4th day with Jonah – no school Monday because of the holiday and no school today because of the snow/sleet.  I’m talking with all different people at these residential schools, trying to balance my emotion with reason, attempting to gather information and keep my anger/frustration under control as I go up against what my latest commentor has called “a brick wall.” 

I know I am dealing with a system that’s so broken it’s seeing itself in a hundred million smashed mirror pieces, no longer able to glimpse in any whole way how damaged it has become.

But I can see it and I know there are others who can too, and I must at least try to do something.

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