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Archive for the ‘doctor’ Category

And so it came to pass that for 6 nights and 7 days following his eye operation, Jonah and his mother and father moved into Grandma’s house.

The story is too long to tell and, by now, amalgamated into one long, blurry, mess of exhaustion, irritation, frustration, worry, and a million rational & irrational emotions spanning the gamut of the human condition.   But I can provide some idea of the experience, sans hyperbole.

Each day Jonah attempted to remove his eye shield at least five times and usually 10 or more – and since it was vitally important for him NOT to touch his eye, each attempt required sudden and swift action, whether during day or night, in the car or the bathroom, while he was eating or running about or watching his favorite parts of  Willy Wonka and the Chocolate Factory.

And each swift action provoked Jonah, usually sending him into a rage whereby injury was inevitable and often severe.  These injuries occurred most often to Andy, since he was the only one with the strength to hold Jonah down while I cleaned the eye shield and re-taped it all across his face, attempting to close off any possible entry points for Boo to slide his finger beneath the tape and itch his eye.  Not to mention there were two different eye drops we had to give him, one twice a day and one four times a day.  Andy had borne a hole in the middle of the shield so that we could sometimes manage to insert the drops without having to undo all the tape and re-apply it again.

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We quickly discerned that any of us was unsafe sitting in the backseat of the car with Jonah, after he bit my mother’s arm 3 or 4 times, drawing blood, and, on a separate occasion, attempted (partially successfully) to rip out two handfuls of my hair while somehow simultaneously shoving his foot in my face.  Why not give up the car rides altogether, you ask?  Because the car rides were among the only time-eaters, one of the only ways to give Jonah any semblance of peace.  A thousand times a day, at least, he begged for car ride?  car ride? car ride?  wanna go see train?  train?  car ride?  wanna see train? car ride?  wanna go car ride?  wanna see train?  car ride?

I promised no hyperbole: a thousand times a day.  By Friday I decided to count, and got up to 87 in the first 15 minutes of the day (our days began whenever Jonah awoke, usually around 6:15am) before giving up.  It was maddening, the requests.  At times we temporarily lost the ability to feel any sympathy at all for Jonah in the midst of his incredible ability to spew forth repetitive phrases ad infinitum.  Oompa oompa?  he’d ask if he wanted Willie Wonka, which was our favorite request, for it meant we could sit or lie down with him while he watched.  He has no interest in the movie whatsoever until Augustus Gloop falls into the river of chocolate, but he adores the Oompa Loompas and most especially the end of the movie, where Willie Wonka yells at Grandpa Joe:  “You STOLE fizzy lifting drinks!  You BUMPED into the ceiling, which now has to be WASHED and STERILIZED, so you get NOTHING!  You LOSE!”

Unfortunately it was also his least requested thing.  In a vague order of repetitiveness, I’d say his requests were most often:  car ride?  wanna go see train?  breakfast san-wich?  take band aid off?  black donut?  lemm-a-made?  grandma?  all done?  (when he was being held for aggressing), and a variety of other things, usually uttered in rapid-fire desperation, for what he really wanted, I am sure, is to have that damned eye shield gone and his routine re-established.

On each car ride Andy played FLY 92.3 on the radio, which Jonah loves. Music?  he asked if it was not on, or loud enough.  This meant we were treated to the same 15 songs or so played over and over and over- YAY!  More mindless repetition.  I got a particular kick out of Taylor Swift’s song about the nostalgia of feeling 22.  I mean, isn’t that how old she is now?  Once I slipped Guster’s Easy Wonderful in the CD player – but within 4 songs Jonah was asking for radio.  I’ve lost the ability to guide my child’s taste in music – but then, what parent doesn’t?

We were at the train tracks in Voorheesville so often that we met all manner of railfanners.

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These individuals come from all walks of life and sometimes far away locales to watch (and often tape) the trains passing by.  They explained to us the pattern of the four lights, two on each side of the tracks, and what they meant.  Four reds was bad business and usually meant no train was coming.  We learned quickly not to say “four red lights” or anything even close to it within earshot of Jonah.  He often began begging for green light the moment we got in the car for a ride to the train.

that way?  he would ask, pointing in the direction he thought the train would be coming from

that way? he would ask, pointing in the direction he thought the train would be coming from

One day I snapped a picture of him actually smiling a little after we were lucky enough to see two trains!

note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye

Note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye

God forbid we had to detour from the exact route Jonah was used to while driving to the train.  One time the local convenience store (Handy Andy’s) was in the process of burning down, smoke reaching with fat, grey, angry fingers at the sky.  We had to go the wrong way, and there was hell to pay.  That way!  That way!  Jonah screamed, oblivious to the burning building and emergency vehicles everywhere.  To him it mattered not that flames were literally blocking our path; the only thing of consequence was that his route had been inexplicably disturbed.

One day he “eloped” (ran away), bursting out my mother’s front door, sprinting halfway down the street before Andy could even get out the door after him.  Andy had to drive his car halfway down the street and jump out in order to catch Boo, track-star of the year.  During the initial drive home from the surgery we had to pull over to replace the eye shield for the first time, and some passerby must have called 911 because soon a cop arrived to ask what the situation was.  Hmmmmmm…where to begin?

Sleep was elusive and usually impossible, especially for the first two nights.  My mother, bless her, slept on a blow up mattress downstairs so that Andy and I could sleep in her bed, each of us on either side of Boo, taking turns watching over him – parent-hawks protecting him from hemorrhaging, from the complete loss of the eye itself.  When there was sleep it came in quick REM lucid dream time, frightening images and nonsensical mazes which were difficult to shake off once awoken.

Lest I get any further caught up in the excruciating minutiae of every incident (and believe me I could write on and on), suffice it to say that by Monday (the day of Jonah’s follow up doctor appointment), there were four individuals on the edge of something frighteningly close to insanity and nearly at one another’s throats.

One final, comedic coincidence occurred just before we left to drive Jonah to the doctor; my right eye was bothering me all morning and when I looked into the mirror, its pupil was fully dilated while my left eye’s pupil was dilated normally.  So after Jonah’s check up, the doc took a quick look at my eye as well and, after an appointment with my own eye doc later in the day, it was determined that I’d gotten some of Jonah’s drops into my eye, causing the uneven dilation.  I’ve had quite enough of eye problems, thank you very much.

I’m bleary eyed (no pun intended) and ended up telling far more of the story than I thought I’d even remember.

The best part of the whole week was snuggling in bed next to my sweet sleeping son, watching him breathe deep, stroking his hair, his warmth and innocence — enjoying the mama moments I no longer can have.  That alone was nearly worth all the exasperation of the week.

When next I write it will be to tell a far different tale – a vastly better tale of redemption, miracles, and dreams come true.  For, as Guster promises us, “there’s a twilight, a night-time and a dawn” — and my own dawn has finally come.

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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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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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“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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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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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.

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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

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“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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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.

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

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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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“Before you speak, ask yourself – Is it necessary?  Is it true?  Is it kind?  Will it hurt anyone?  Will it improve on the silence?”
~ Sri Sathya Sai Baba

How hurtful we can be without meaning to be.  You’d think I’d be used to being hurt, both physically and emotionally, but I’m just not.  And ’tis a horrifying thought to know I also have spoken quickly, without thinking, without asking myself these questions.  We all do it, I imagine.  This quote is so wise, whoever Sri Sathya Sai Baba is.  I learn lots by researching the person who uttered a quote I love. 

I saw Jonah on Wednesday at Albany Medical Center for his pediatric rheumatologist appointment.  E and J are back as the team who drives Jonah to and fro, but they do so much more than that, as I’ve mentioned.  I love these people and look forward to seeing them almost as much as I look forward to seeing Boo.  He did well at the appointment, mostly, but part of that was due to the caring doc’s speed and efficiency.  No waiting.  None.  We go straight to a room and as soon as she sees him, Dr. B is on her game and handling everything.  It’s refreshing.  I don’t know how she does it, but I’m more grateful for her than she will ever know.

I should have taken pictures but I keep forgetting my camera, or forgetting to charge my camera, so I’ll end the post with some more random pictures.  I like putting pictures in my blog post.  Tomorrow I’ll remember the camera when I go visit Boo, I promise.  I wish I had it at his doc appointment.  He was parroting in classic echolalia form.  “Jonah, sit on the table.”  Over and over.  He’d had enough at the exact moment she finished gently pulling and prodding his joints.

There are so many things I wonder about my boy.  I know the other kids like to cuddle with the caregivers on the couches and watch TV or play Wii, but Jonah doesn’t like it.  I know that much.  He wants to stay in his room a lot.  They coax him out when they can, it seems.   I hate thinking about him alone in his room.  If that’s what makes him happy, should I be more okay with it? 

I wish I knew more about what he likes to play with, and who he wants to be with, and things he says/does/sings.  They don’t tell you a whole lot beyond basic information but I want anecdotal stories.  I want to hear about it when he does good things, or funny things…not just whether or not he had “behaviors” that day, or how many, or what he had for dinner and whether or not he threw his plate.  I want to know more about my son. 

I know he is sick right now and I want to hold him close and let him lie on me and suck his thumb while we watch Barney or the Wiggles.  Of course I just described a fantasy.  Even if he were here in my home that scenario is highly unlikely, unless he were really, really sick.  He’d hit at me, pull my hair, scratch my face.  Is he angry at the world?  Is he angry at us all because we just don’t get it, whatever it is?

Some weeks it’s easier to have gratitude than others.  Sometimes I don’t sit down to add a blog post until I’m motivated by a hurt, worry, depression, shame, anger, or some other emotion that drives me to write.   I guess it means every blog post is skewed by its catalyst emotion.  I can’t do much about that, but today’s emotion, even though it’s Friday, is soul-tired.

I’m praying for a lot of people.  A lot.  They all have serious needs, problems, grief.  I don’t know what good the prayers do but I like to send them up anyway.  I’m a little unconventional with that, but I do pray from my heart and my heart always answers back you are not alone in your hurtYou are not alone.  And that’s the gift you get back when you pray for others; it’s all mirrored back at you, offering perspective and empathy and, if you dig deep enough, peace.

Blah blah blah.  Some pictures:

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

his mama's bony body and his daddy's tan

Mama’s lean body, daddy’s tan skin

old days, exploring in the forest near home

old days, exploring in the forest near home

the waterboy

Waterboy

daddy holds Jonah's hand and grandma walks beside them - away from his residence and across the campus to the car.

daddy holds Jonah’s hand and grandma walks beside them – away from his residence and across the campus to the car.

Mama will see you tomorrow, Boo.  Sleep tight.

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