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Posts Tagged ‘Retisert’

“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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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 wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.”

~ The Wheel by the Grateful Dead

I’ve probably quoted that before in this blog.  A funny fact is that I’ve never read my blog straight through from beginning to end.  I could be repeating quotes, stories, ideas…hell, all kinds of shit.

Well it appears our 15 minutes of fame are over.  Jonah’s been swept off the top ten stories of HLNtv.com by famous people and real news. And here I’d dreamed of some publisher happening upon our story and offering me an advance of $25,000 to edit the blog into a book…but not a one has materialized, thus far.  Heh.  I did, however, connect with all lots of amazing new people. People just like me. And supportive souls. And adults on the spectrum.  We’re all in a magical, leaky, strangely expanding ship – the S.S. Autism.

The whole experience, though, was a jolt of affirmation I really needed.  (I thrive on affirmation; it’s damn near Pavlovian).

The thing is someone gave me a chance to tell my story, and I’m grateful for that chance. Thank you, KC.

But the wheel turns, and comes a time for things I don’t want to think about.  Jonah’s first visit to a rheumatologist in this area on Friday, and, on Monday, exploratory eye surgery. I pray to God those same two awesome people who drove him up last time, E and J, will be there.  With them everything will be okay.  It will be okay if Jonah kicks and it will be okay if I burst out sobbing and I don’t have to worry about keeping it together because they will help, they will know what to do and what to say and how to navigate the whole mess.  They have compassion and knowledge and heart, these people.  They love.  Thank God, they love.

Because without them I’d fall apart again. I can’t stand the thought of Jonah scared. In pain.

I remember holding him in my arms  for his first eye surgery, when they implanted the Retisert – how he looked at me with this deep, intense fear in his eyes as I placed him on the operating table…how I watched him go limp-that-looks-like-dead as the anesthesia took effect.  I kept it together long enough to look the surgeon in the eye and whisper “please help my son.”  She held my gaze and promised me, silently, nodding.

I remember closing the door and flattening myself out against the coolness of the wall on the other side.  Telling myself to breathe.  To trust.

Throughout these last ten years I have entrusted my child to so many people.  I am so lucky, so grateful.  I trust and I trust.  To do anything else is to deliberately envision (create?) a worse reality. At least with trust there is hope.

“You must trust and believe in people or life becomes impossible.” ~ Anton Chekhov

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