Feeds:
Posts
Comments

Posts Tagged ‘railfanner’

So last week my mom and I are sitting at Andy’s kitchen table watching Jonah put his socks and shoes on (which he can now do pretty much by himself, although the ankle of the sock sometimes ends up on top).

If he needs help, Boo will ask “I need help please?” and you just know those teachers and caregivers at Anderson have been working on teaching him this since God knows when.  I don’t remember exactly when he started doing it but that’s what part of what this blog is for – to account for the history of things.  It’s also a cathartic process, a true-spun story, and an offering to anyone interested, most especially for those on a similar path…most MOST especially for those who need to feel they are not alone right now.

The whole “I need help please” was incredible.  It took so much frustration and anger out of my son.   Suddenly, like a flipped switch, a synapse turned ON.  He made the connection.  I can ask for help and someone will help me.

It’s such a simple thing.  So simple that many I could tell this tale to would think so what?  I suppose that’s because regular kids learn this stuff when they’re, what, one and a half?  I don’t even know.  But the point isn’t when Boo learns things.  It’s that he’s learning things!  No matter how slowly – no matter how long it takes – he is learning and doing so faster and better than before — and, along with it, only has a serious aggression every month and a half or so.

YES, you read that right,  Where three years ago Jonah had a serious aggression requiring a two-person take-down often 12 times in 12 hours, now it is fewer than 12 times in a year.

I owe the teachers and caregivers at Anderson everything.  I can barely talk to them sometimes; I am so grateful I start crying.  I wake every day and tell God thank you.  I can barely talk to God sometimes; I am so thankful there are no other words.

So yeah, last week. I get up from the table to accompany Jonah and Andy on car ride of which grandma traditionally doesn’t partake, for two reasons:

1) Jonah disallows anyone riding in the back seat with him if this is at all a possibility.  The kid likes his space.  And while it does not entail the lion’s claws, kicks, and headbutts that it used to upon daring the feat of entering the backseat with Taz-Boo next to you, it is still something that will frequently have him pushing you away, demanding more and more space, until you are smushed against the window and door.

2)  The car ride usually consists mainly of Jonah demanding whatever music he has chosen to be played louder and louder and still louderAdditionally, that music is typically of a genre my mother despises almost as much as she despises loud music of any kind.  (There are no back speakers in the car, so at least Jonah’s hearing is likely safe.  Plus we don’t take it past 6 out of 10 or so, ever). We just tell Jonah that’s the loudest it will go.

The point of this dissertation and tangential post:  When we left my mom behind at the kitchen table, Jonah turned back and said “bye, grandma.”  No prompting.

I think I was so in shock I went into automatic pilot and put that whole thing on a shelf for a good minute. These mini-leaps are simultaneously marvelously huge — but you can’t very well freak right out in the midst of it all.

And the car ride was fun, Jonah requesting a Public Enemy throwback to the late eighties and bobbing along to it like the thumb-sucking hipster he is…

Then yesterday, all of us are sitting at the table having lunch (and Jonah sits at the table to eat lunch now, wonder of wonders, rising to circle or walk around a bit notwithstanding).  We’re eating our “tune-fish” sandwiches and eating chips when Jonah takes a big sip of Vitamin Water (his new kick) and says, looking at each one of us in turn, “Hi, mama.  Hi, daddy.  Hi, grandma.”

Oh——kay.  Hi Jonah!  Hello!  Keep that synapse on, kid, I want to have a whole big conversation with you and I know it’s all baby steps but oh wouldn’t it be wonderful if it were the start of conversation?  Because there is so much I want to tell you and so much more I want to hear you say and I know I am dreaming but Oh God Jonah you are initiating conversation and that is BIG, Boo, I don’t need a speech therapist to tell me that, but I will definitely seek out your speech therapist and thank her, fall at her feet crying tears of joy, because I would love to know you on another level, Jonah, my son my only child, really know you…trust that mama will meet you halfway.

On our car ride yesterday I even caught one of Boo’s verbal breakthroughs on video — him answering me instead of repeating back to me what I’d said.

The thing about “verbal” children with autism is there as many variations of “verbal” as there are variations in autism itself.

Jonah is verbal, yes, but he didn’t say anything but mo (more) and point or use PECS  till he was, what, 4?  Andy can help me remember, for that was before this blog.  Anyway, verbal for Jonah has meant, at first, words to express wants (cookie?  black soda? car ride?) and then small phrases “want music on” (which he still says whether he wants it ON or LOUDER – maybe that’ll be his next verbal hurdle), then full, albeit very limited, full sentences — “I need help please” — but never before has he answered me.  Before, had I said to him “Hi, Jonah!” he would have parroted back “Hi, Jonah!”

Of course one of the major frustrations is he could never – and still rarely – tells us if something hurts.  I want him to get better at that so we can help when he’s sick or in pain.  One strange footnote and exception is when he was years younger, the day of his first eye operation.  In complete and utter despair, he leaned his head against the window in our kitchen and uttered, clear as day  “eye hurt?!” as if the pain forcibly yanked the language right out of him.  We gave him what pain meds we could and I remember cradling him close helplessly.

I could even get him to say “I love you mama” and he would parrot back to me “I love you mama.”  I still can.  In fact, it will be one hell of a day when my son turns to me without prompting and says “I love you mama.”

That one I’m still waiting for.  But I believe it will come, and the joy of that belief is indescribable!

– – –

There are other things I want to write about.

I’m taking art classes and I have ideas for a forum from which I can spout about my major preoccupations with Laura Ingalls Wilder, Guster, and Elfquest – among other more stuff, like my first attempt to learn the guitar and other musings.  Maybe I could start a new blog.  I want to write more.  I’m all about creation lately.  Bead necklaces and Sculpey clay, sketches and nature art.  It feels really good.

Some pictures for you:

Sketches from art lesson #2, done with a 4H pencil.  Mine is on the bottom left - the darker one.  My teacher wants to put it in a beginners art show!

Sketches from art lesson #2, done with a 4H pencil. Mine is on the bottom left – the darker one. My teacher wants to put it in a beginners art show!

Jonah and his "salad" (spinach leaves and ranch dressing)

Jonah and his “salad” (spinach leaves and ranch dressing)

This one is funny, but it DOES make sense…

My kid had it right all along.  He has always pooped the "right" way.  Glad we never corrected him!  ;-)

Jonah had it right all along. He has always pooped the “right” way. Glad we never corrected him! 😉

I love making collages.  This one I created on the back of an envelope in which I sent a card, necklace, and other goodies to Robin Roberts at Good Morning America.  Her book "Everybody's Got Something" was very good I wanted to write to her.  Never realized before what she'd been through.

I love making collages. This one I created on the back of an envelope in which I sent a card, necklace, and other goodies to Robin Roberts at Good Morning America. Her book “Everybody’s Got Something” was very good & I wanted to write to her. Never realized before what she’d been through.

Jonah's after-bath watching of endless trains coming and going.  Thank God for the railfanners that put these on You Tube,

(Jonah’s after-bath watching of endless trains coming and going. Thank God for the railfanners that put these on You Tube).

LOVE to all this happy Sunday!

Read Full Post »

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.

OLYMPUS DIGITAL CAMERA

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.

OLYMPUS DIGITAL CAMERA

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.

Read Full Post »

<span>%d</span> bloggers like this: