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Archive for the ‘behavior’ Category

very short update on boo

Posted in autism, behavior, doctor, glaucoma, hospital, iritis, Uncategorized, uveitis, tagged , , , on May 17, 2013| 3 Comments »

Hi everyone

Jonah and I and Andy have been living at my mom’s house since Jonah’s operation on Tuesday.  She has no Internet access so I am running home to pick up clothes and hurry back; Jonah needs constant vigilant attention right now.  Although the operation went well and he is okay (thank God), he is uncomfortable, often unbearably demanding (wanna go see train?  want breakfast sandwich?   want cupcake? — over and over, ad infinitum, and sometimes at all hours of the night), and, at times, extremely aggressive.

He has a follow-up appointment on Monday, after which we are going to try to bring him back to his residence.  My mom and Andy and I are scratched, bitten, kicked, and hit on a daily basis, and since Jonah MUST NOT touch his eye it takes all three of us to handle him.

When I return to write more it will be to express far more gratitude than I am feeling right at this moment.  I will say, for now, thank God for my mother – for without her I don’t know where we would be or what we would do.

Thank you to everyone who has reached out with caring support.  It means much more to us than you know.

pre-op, Jonah holding his ScareMeNot, Deep Breath Dudley

Pre-op, Jonah holding his ScareMeNot, Deep Breath Dudley, with daddy

waking up right after the operation

waking up right after the operation

During a calm moment -he got to see his beloved train...

During a calm moment -he got to see his beloved train…

Back as soon as I can be….

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tomorrow: the eye operation

Posted in Anderson School, autism, behavior, doctor, glaucoma, grandma, hospital, Uncategorized, uveitis, tagged , , , , , , , on May 13, 2013| 2 Comments »

Never deprive someone of hope; it might be all they have.
~ H. Jackson Brown, Jr.

Early tomorrow morning Andy is driving Jonah up to Albany for an operation to remove the Retisert implant from his left eye.  (Turns out I’ve been spelling it wrong for a while).  I know that the chance of Jonah’s eyesight improving in that eye is slim, and we hate putting him through yet another eye operation, but still I have hope that it will help him to have the implant gone.  It is at best a foreign object doing nothing, and at worst something which causes his eye pressure to rise – and maybe even causes him pain.

Tomorrow and the next day will be a time of special vigilance over Jonah, to care for him when he (almost always) gets sick after awakening from the anesthesia, to ensure he doesn’t get any of his little fingers under the eye shield, and to keep him pain-free, occupied, and as calm as possible.  Andy and I and Jonah will all stay overnight at my mom’s, so we can take turns watching him and caring for him.  At the very least Jonah’s constant cries for “Grandma’s house?” shall be fulfilled.

On Saturday when my mom and I drove down to visit Boo, our spirits were somewhat lifted because he’d had a good week, for the most part. Again the pendulum swings without reason; after his eye heals, I would like to contact Jonah’s psych doc and titrate him off his meds, then start over with one med at a time.

Saturday Andy was very tired (he struggles with insomnia).  I tried to step up and help out more than usual so he could lie down.  I gave Boo his bath and offered him small sips of his beloved black soda.  I played straws with him on the floor, which basically means I make little house-like structures with colored straws and he gleefully knocks them over…or, in another variation, he dumps them all over the place and we sing “clean up, clean up” while he picks up two or three straws and I pick up the other 22.  Sometimes he’ll help me sort them by color, but he wasn’t having any of that this day.

We went outside to blow bubbles —  I hold it?  — Jonah asked after I blew a stream of bubbles into the air.   I put bubble solution on the mini-wand and handed it to him, and he blew way too hard and spazzed the solution all over himself.  He didn’t seem to mind; he simply handed the wand back to me and watched some more of the rainbow orbs fly past him into the air.

Then I got on Andy’s computer and showed Jonah the video of him swimming in a Cape Cod hotel pool when he was seven.  Interestingly enough, Jonah is at his heaviest in the video (and has moon-face from steroids given to him to combat the the very beginnings of all these problems with his left eye).  At any rate, it had been a while since I showed him this video and he shrieked with delight, watching himself swim.  I asked him if he wanted to watch the video of him singing Guster, but he kept asking for the swimming video, so we watched it 8 or 9 times, each time Jonah screaming in excitement.

Finally, I entered “train” into the search box and, thanks to all the rail fanners, there was a plethora of videos of trains approaching and chugging along.  We found one of a nice, long train….the approach, the gate lowering, the lights flashing, the rhythmic noise growing louder and louder, and the cars passing by, providing Jonah with a visual ecstasy I don’t quite understand but can certainly appreciate.  Instead of shrieking, this time he stood mesmerized, his eyes following each car, never growing bored even though this particular train was at least 100 cars long.  A few of these videos kept Boo occupied for quite some time – all in all, enough for Andy to have a quasi-nap (if all the screaming and shrieking didn’t wake him).

And so Saturday served, also, as an early Mother’s Day for me and my boy.  I was a little disappointed that his teacher at school didn’t have the kids make something for their moms, but at least I got to spend some fun time with him.  And tomorrow and Wednesday I’ll be spending all my time with him, gladly, even though it will likely be exhausting and scary.

I hope the operation goes well.  I hope Jonah doesn’t get too sick.  I hope we can keep him pain-free.  I hope his left eye’s vision is somewhat restored, or at least not damaged further.

I hope.

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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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two handfuls of hair

Posted in Anderson School, autism, behavior, doctor, iritis, placement, Uncategorized, uveitis, tagged , , on April 26, 2013| 2 Comments »

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

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in the middle in the middle in the middle

Posted in autism, behavior, grandma, Uncategorized, tagged , , , , , , , on April 15, 2013| 2 Comments »

“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

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march seventh, two thousand & two

Posted in Anderson School, autism, behavior, music, Uncategorized, tagged , , , , , , , on March 11, 2013| Leave a Comment »

Jonah turned 11 on March 7th.

This weekend I couldn’t see him; I was on a business trip to an adoption conference in NYC, so Andy brought Jonah up Friday evening (the day after his birthday) and I met them at oft-requested grandma’s house.

Evidently Boo was a good boy the night before at the residence, where they threw a little party with pizza and cake.   I guess as soon as Jonah understood it was his birthday party, he began incessantly requesting cake.  All through the party.  Cake?  cake?  cake?   And to be even more specific, what he really meant was frosting?  frosting?  frosting?

Perhaps for his birthday next year I will give him a whole tub of frosting right at the beginning of the party.

Of course I am being facetious and am in fact trying harder to pay careful attention to what he is eating and drinking.  Last post was all about how I want an answer to his aggression, and I figure the first place to look is nutrition & what is going into his body.    The school has a nutritionist and I may request the guidelines or whatever to pay more careful attention to Jonah’s diet.  In all probability it is me who gives him more “junk” food than anyone.  He actually eats his vegetables (and certainly gets no black soda) at school, that’s for sure.  Andy always has salad, vegetables, and healthy things for Jonah to eat.  I’ve ordered a continuous prescription of chewable Omega-3s; I think he’s been on them for a year or so now.

Most of the limited medical research I ‘ve done so far emphasizes the comorbidity of autism (particularly that which is accompanied by aggression) with stomach problems and/or sleeping difficulties.  Jonah goes to sleep early and sleeps well through the night, and he doesn’t have stomach difficulty.  Unless you count that the food gets down there unmasticated, as he is wont to shove great chunks of food into his mouth and needs constant reminders to take small bites.  Maybe that does mean something.  One of the problems with this kind of research is that I find either ‘autism 101’ filler pieces about how behavioral problems are addressed through ABA, sensory toys, social stories, etc. or I find articles and dissertations out of advanced medical journals and can’t even comprehend half of what I’m reading.

So I will dig a little more every day.

On Friday Jonah enjoyed his mini-party at grandma’s house.  She’d bought him two helium Happy Birthday balloons, which of course he loved, and as a treat we got him Burger King.  Of course, this was topped off by two baths and a very auspicious car ride to see train, which arrived at the crossing just as we did.  Jonah rolled down his window and stared at the passing railcars.  It was a very good visit.  Boo gave lots of hugs and kisses, and requested music? if we weren’t playing it loud enough.

Boo tries to share a french fry with his balloon

Boo tries to share a french fry with his birthday balloon

“How old are you now, Boo?”

No answer.

“How old is Jonah now?

I’mtenyearold he replies in a word-slur only someone used to his enunciation can understand.

“Guess what, Boo?  You’re eleven years old now!”

Evvenyearold, he tells me.

“That’s right, Boo, you’re eleven now.  How old is Jonah now?”

I’mtenyearold, he answers, as if to say I just told you.

Gotta love my boy.

a birthday bath - one of two

a birthday bath – one of two

That night Andy kept Jonah overnight for the first time since we admitted Boo to Anderson, a year and a half ago.  And Jonah was good, and it went well, though even when he is good he is an exhausting enigma.

And here I am outside Madison Square Garden,
playing around while waiting for my train
because, underground, Penn Station feels
dizzy with people, everywhere people, blurry-quick,
moving confidently and frenetically in all directions…
and I don’t like it to be down there.

Carmelo Anthony and me

‘Carmelo Anthony’ and me

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not really, nietzsche

Posted in Anderson School, autism, behavior, doctor, grandma, placement, The Anderson School for Autism, Uncategorized, tagged , , , on March 5, 2013| 5 Comments »

“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
~ Albert Einstein

Okay so I promise to not quote any more Nietzsche in rash moments of angst.

I’ve just come to the conclusion that if I want to get to the bottom of my son’s aggressions I’m going to have to do it myself.  Should that have been exceedingly obvious to me a long time ago?  Here I am waiting for the professionals to put all the pieces together.

For years, the schools have tried to chart his behaviors, to associate actions with causes, to figure out why he acts out and when – sometimes, even, he aggresses right after he has just been given a reinforcer (reward) or is in the midst of a preferred activity.  And he’s gotten worse.  And he’s getting older – he’ll be 11 on Thursday.  Now he’s figured out that he has an arsenal of weaponry at hand 24/7: a built-in play-doh factory of crap to sling and smear.  All of this everything that makes no sense HAS to make sense to somebody.  I just have to find this person, these people, the neurologist somewhere who will discover a medical, fix-able reason for all of it.  Or do I?

There has to be a reason. Or does there?  I know autism itself doesn’t really make a lot of sense, but there is usually consistency within its world.  Or is there?  I’m questioning everything I think I know.   I need to figure out where to start, to really start helping my son.  If I can help.

Always I secretly judged the autism parents who flew their kids to doctors all over the country, searching for an answer.  I assumed they wanted to “fix” their child or “cure” them of autism.  Maybe they are just like me.

When Jonah was at a day school for kids with autism, I secretly judged the parents who “shipped their kids off” to residential facilities because they “didn’t feel like” taking care of the child anymore.  Now Jonah is at a residential facility.  And of course before I had a child, I had a million notions of parenting that were better than yours. 

God does hath a sense of humor.

Now I have to do something or go crazy with the merry go round of hope and despair.  I want to help my son.

This past Saturday, Jonah was pretty good:  he only slapped me in the face once with a soapy backhand and, minutes later, got out of the tub and ran dripping to grab at my mother, who was sitting in the kitchen.  No real harm done in either case, and neither incident lasted very long.  Of course, we couldn’t figure out a reason for any of it.  We rarely can.

Here are some pictures from Saturday.  And a video.  I welcome all comments.  Suggestions.  Judgement.  I’m evidently working off some karma.

Jonah and his birthday present Scare-Me-Not, Fearless Fred

Jonah and an early birthday present Scare-Me-Not, Fearless Fred.  Boo will be 11 on March 7th.

I love the top of his hair in this picture!

I love the top of his hair in this picture!

Jonah’s wisdom at the end:  More brownie?

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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!!!

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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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in ten days for ten days

Posted in autism, behavior, swimming, Uncategorized, tagged , , , , , , , on January 29, 2013| 8 Comments »

I don’t know if this is a surprising fact or not, but I’ve never read my blog all the way through.  But sometimes I read old entries, especially when they show up on my “top posts” list – partly, I guess, because I wonder how or why certain entries ended up there.  And partly to see how often I say the same shit, or whether or not I’ve ever given a blog post the same title twice.  And partly to document events & things I will otherwise flush down the memory toilet.  And for a bunch of other reasons.

One thing I realized is I start stories and then don’t finish them.  Like the whole Humira saga, when I had to pay more than two thousand dollars out of pocket for Jonah’s medicine and then fought through miles of red tape for weeks to get reimbursed – and even then only with the help of a few incredibly kind, kick-ass professionals.  I never re-visited that story.  Maybe I just forget to re-visit things…0r even mention them in the first place.  So today for you I have a list of stuff I’m pretty sure I never talked much about.  Some are opinions.  Some are confessions.  Some are boring.  All are true.

1.  I got reimbursed in full for Jonah’s $2k Humira refill.

2.  In ten days, for ten days, I am going on vacation to Waikoloa, Hawaii.   (Yes, my house is being watched).

3. I have been living from Guster show to Guster show for a few years now; this truth became evident when I realized I immediately purchase tickets the moment they are available, each and every time I get a tour announcement e-mail from them.  Just bought tickets for yet another show; they’re playing near Boston with Dispatch.  Someday Jonah will come with us.  I hope so anyway.  (They’ll have a summer tour on top of this and I’ll buy tickets to at least one show on that tour, too, the moment they are made available to me).

Saturday June 8th
Mansfield, MA @ Comcast Center w/ Dispatch
$42 – All Ages – 6PM
Ticket Presale (January 28th @ 12PM, use code “CIRCLES”) | Info & Facebook RSVP

4.  More and more often I find myself wanting to find ways for Jonah to swim.  He is so happy in the water.  There is a hotel near my house that offers an indoor swim club, and there is always the Center for the Disability Services, though their pool is literally 90-something degrees and necessarily full of chlorine.  Maybe Andy can help me find a place down near where they live where we could bring him.

5.  I secretly (well, obviously not so secretly) love that Jonah sucks his thumb.  He does not flap or rock, but he does walk in circles, and he loves to suck his thumb.  I even love the way he sucks his thumb (watch the end of yesterday’s post‘s 19 second video).  Maybe it’s because I was a thumb-sucker too.

6.  Sometimes I feel happy that I have more freedom now that Jonah doesn’t live with me.

7.  Sometimes I feel guilty for feeling happy for feeling free.

So it goes.

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bruce banner & boo

Posted in autism, behavior, doctor, echolalia, glaucoma, language, Uncategorized, tagged , on January 17, 2013| 4 Comments »

Andy called me this morning to remind me about Jonah’s glaucoma appointment with Dr. S.  

I’d totally forgotten about it so it’s a good thing he did call.  E and J brought Jonah up and I met them all at the office.  We always wait in the hallway because the waiting room is full of mostly 60-90 year olds, and Jonah could take every one of them down if we didn’t stop him.  Bruce Banner turned into the Hulk; Jonah turns into the Tasmanian Devil.

Wikipedia describes Taz as a dim-witted omnivore with a notoriously short temper and little patience. He will eat anything and everything, with an appetite that seems to know no bounds. He is best known for his speech consisting mostly of grunts, growls and rasps, and his ability to spin and bite through just about anything.

Yeah, that sounds a little like Boo.

He was all ramped up today when I first got there, and I’d already stashed my new glasses in the car, so I was literally going in blind.  Luckily he was lovey, and though he answered “no” when I asked if he wanted to sing a song, eventually he capitulated and took turns singing lines of Fa Fa and Keep it Together with me.

OLYMPUS DIGITAL CAMERA

He wanted to touch and knock at the pictures hanging on the wall.  Quiet hands, Jonah, we told him.

OLYMPUS DIGITAL CAMERA

He sat patiently, for the most part.  Then he’d get up, walk in a circle, and sit down again,

J is holding both of Jonah’s hands and rocking back and forth with him, telling Jonah silliness that Jonah loves to repeat…we had to wait for a little while and Jonah was getting impatient.

When the nurse tested his vision, he held up the little black plastic thingee that covers one eye and read what he could.  He’s fine when he can use his right eye, but his left seems much harder for him.  He gets frustrated and tries to cheat.  When redirected he becomes angry, maybe throwing the plastic thingee or hitting the nearest person.  But today he just gave a half-hearted swat into the air and allowed the doc to examine him.

“Okay, buddy, sit on your knees,” says the doctor.  Jonah just sits there.  J and E try to help explain it to Jonah, who then rises until he’s standing on the chair.  Finally J and E have to help Jonah into a kneeling sit so Jonah can scootch himself up and into the eye machine, miraculously cooperative of bright pins of light, strange machinery, a doctor telling you to look this-way-then-that-way, eye drops, and a gadget that touches your eyeball and take its pressure.

Amazing.

M & I took tomorrow off work to travel downstate and see another Guster show; we’re staying overnight, then M will drop me off at Andy’s on the way back.  After our visit with Boo I’ll hitch a ride back to Albany with my mom.

Sounds like a sweet plan.  I think the amount of times I’ve seen the Grateful Dead and the amount of times I’ve seen Guster must be about the same now.  Something like 18 each, maybe.  I wonder if I’m the only person who was first a Deadhead and then a Gusterrhoid.

The thing is, every show is different – every show a re-energizing.  I’m excited to see them.  And Boo.

(He’s kind of re-energizing too).

O

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