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Archive for the ‘autism’ Category

Where Jonah is concerned, the best place to be — the most dreamed of, sought-after, wondrous, asked-for place — is Grandma’s House.

For a variety of reasons, it has remained thus since he was a baby.  (Of course the best part of Grandma’s House is grandma herself).

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Jonah’s sitting on grandma’s counter in this picture, taken Christmas Day. I was sick and kind of weak; I tried to get a good picture of them standing side by side, but to no avail.  I wanted to show how Boo’s only a few inches shorter than my mom now, which would make him about 5′ or 5’1″ at not-yet-thirteen.  His growth seems to be happening, somehow, more quickly than before, as if I’d looked away for months and finally turned around to see him.

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I’m kind of wan in this pic, but Jonah’s all smiles.

Here are a few great pics we took in December:

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I love the way that last one came out, with all things notJonah softened.  It’s almost as if I knew what I were doing when I took the picture; ’twas luck, alas, and nothing more.  (For kickass-quality photography you can visit my sistercousin DiAnna’s website).

Then a few weeks ago Jonah started in a new classroom.  He was aggressing regularly in the other one, even on days when all seemed fine at his house.  His teachers and therapists thought maybe he was bored or unchallenged.  So far he hasn’t had a major aggression in the new room, so they were probably right.  I know Jonah’s bright, but it’s hard to know how much of that light we’re going to be able to coax from behind the clouds.  So far so good.

He’s been a happy kid, mostly, at any rate.  He adores his daddy and got to spend two overnights in a row at his apartment recently, which is right up there with Grandma’s House on Jonah’s list of preferred places to visit.

Lately Jonah’s developed a keen interest in his wardrobe and, more recently, in others’ as well.  He’s got two pair of sneakers at daddy’s place – one blue, one green – and he’ll tell you in no uncertain terms which he wants.

The other night Andy put him on the phone with me.  Jonah’s definitely not one to dominate a conversation, so I asked him a lot of questions he could answer with “yes” or “no.”

Eventually I said bye bye, Boo; mama loves you.  Jonah answered byebyemama and handed the phone back to Andy.  I heard Jonah ask twice: mama comin’ in? to which Andy automatically replied: 13 hours.

It seems to satisfy Jonah to have a number – any number – I think so he feels like what he wants is comin’…and when.

Then, in the background, I heard Jonah say:  Light green shirt? Andy answered no, buddy, This shirt is good.  I guess Boo’s new thing is to decide upon not only his own clothes but his father’s as well.  Sometimes Andy capitulates, allowing Jonah a glimpse into one possible career path toward fashion or wardrobe design.

I can just see him in Hollywood, pulling at a “wrong-colored” costume donned by Jennifer Lawrence, insisting no! no!

A few weeks ago I traveled to Bloomington to see Tim perform in a holiday concert with the Quarryland Men’s Chorus, which was as awesome as it could be.  Tim had a short solo in one song, and after both performances, audience members sought him out to compliment him.  I stood at his side, grinning proudly as if I were the one responsible for Tim’s mellifluous bass.

Tim's in the middle of the back row, with the long blonde hair & awesomely full beard

Tim’s in the middle of the back row, with the long blonde hair & awesomely full beard

Tim also gifted me with the best Christmas present I’ve likely ever received – but for now it’s just between us (and, due to my uncontainable excitement, two friends whom I swore to secrecy).

* 12-29-14 * NOTE:  Now lots of folk are guessing Tim gave me an engagement ring, and I’ll put that rumor to rest.  We’ve been in a long distance relationship for just 5 months.  And this gift is better, presently, than the prospect of marriage — to anyone!

We are happy.

We are happy.

And so life is good.

I am getting used to being cold, bundling up with resignation and maybe even complacency against my chosen 55 degree home temperature.  The no lights thing is actually more difficult – I go through candles like boxes of Tagalongs at Girl Scout cookie time, and I now have an oil lamp.  Since the days are so short, I want to go to bed at around 6 or 7, like an old lady.

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I get out every day, when I can motivate, and I fight winter blues/being alone/stagnation, reminding myself that every day now, the days are lengthening. There is much to do and plenty to look forward to with the excitement of this new year coming – 2015 rising like a glorious dawn.

I know the journey truly is the destination, and this one feels really right.

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Today Jonah is participating in Giving Tuesday’s coolest concept; our country as neighbors.  Modest Needs is a grassroots, BBB top rated national nonprofit existing to help those who need one-time assistance to jump a lifehurdle. People from around the USA help each other out of rough spots.

At Modest Needs, donors give what they can, and nearly 70% of recipients give back, becoming donors themselves.  This means even one moneycoin piece is exponentially impactful; the cycle of kindness turns unceasingly!

Jonah had limited moneycoin pieces, and wanted to give, and was very sad; I chipped in so he could help.  Today we’re going to join with thousands of others to make the difference in the lives of people who work hard to manage but are in danger of becoming impoverished due to an unexpected or emergency expense.

Will you please give just one moneycoin piece, for cute-even-when-he’s crying Boo’s sake?

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Jonah knows that any moneycoin is more moneycoin than before.

And please check out this awesome video they just released, featuring three families, one with a child who has autism.

Oh, and like it, if you do like it.

Thank you so much.

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Boo loves you and is happy again.

(Best of all, I get to work for the people doing this!)

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I got to see Boo twice this week, which was awesome, and he was a happy kid both times, which was even better.

On Thanksgiving Day my mom had home-made all kinds of traditional dinner dishes and then, as she has been doing for several years now, portioned it out into containers for Andy and for me.  She’s an awesome woman and grandmother and mom, and I sometimes can’t believe what she will do for the people she loves.  Her heart is big, and full, and loving.

She even makes her father’s stuffing (my “poppy,” who died in 1999)  – an amazing and difficult concoction of deliciousness I can’t even begin to describe.

Andy brought Jonah up around 11:30am – Jonah’s always begging for “grandma’s house?” and so this was indeed a grand occasion.  We even had a beautiful day, for it had snowed the day before and there were 8 inches or so on the ground, white still newly-clinging to the branches and bushes against a happy blue sky.

Because we had our dinners packed up to eat later, my mom had also made sandwiches for our lunch.  Jonah, however, likes to search every compartment, cabinet and crevice for different and unusual food choices- especially at grandma’s house.   There was bacon in the freezer, cooked pieces my mom makes a few at a time and then stores away for later.   Once he saw that, Boo knew what he wanted.   If you listen carefully at the very end, he comes over to me and says “and the boobie,” evidently intending to fish down my shirt.  Not happening, kiddo.

He even got to see a train, on a car ride a few minutes after that video was taken.  Sometimes it’s not until I watch videos of Jonah that I realize his level of functioning (both below, above, and beyond others) and can see how very different he is from other children.  I don’t spend a whole lot of time with kids in general, and when I do, they seem like mini-adults or special other creatures who act and look like strange little beings with superskills.

This video from yesterday is an example, too.  Jonah listens to and likes what he likes, without shame or any concept of cool and uncool — none of that “these songs are for toddlers and I’m going on 13.”  I love it.  It’s all very loud; Jonah likes his music cranked.  In the video he says he wants black soda, but quickly decides to try and thieve both mine & my mom’s white sodas.  Having succeeded in making off with mine, the fun begins.

Oh, he is a funny, sweet little boy when he’s happy.  Lately he has been exploring a little more music but definitely has his favorites (his current favorite song is Prince’s Sign of the Times and he asks for it over and over by announcing its track number.

In this video from yesterday he’s jammin’ to Third Base.  He looks like a little gangster, silly Boo.

He hasn’t been great in school lately – more aggressions.  The school called me last week and said they were going to have a meeting about Jonah and whether or not it might be better to transfer him to a different classroom.  The concern is that he’s bright, and bored, and needs more to keep him occupied.  You shine like the sun, my son!  We’ll work together to get you the best schooltime possible.

We have a special relationship, Boo and I, for I am also unconcerned these days with what’s cool, and we rock and sing and love together.

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(I think he knows his mama is a little nuts).

Which brings me to my great winter experiment, by which I use neither heat nor lights.  I think I should start a new blog (or maybe a heading under this one) where I discuss things not Jonah-related.  So if you see a new tab up on my main page, that’s why.  If I had all day to write I would make five or six separate blogs about all kinds of things….

So anyway, for today I’ll just keep it here.  I have turned my heat up to 55, having been warned that it’s the lowest temperature at which I can set the thermostat to keep my pipes from freezing.  To be honest, though it is growing colder, I am used to it somewhat and I think I’ll be able to stick it out through the winter.

And I have added further restrictions to my self-imposed experimental wintertime lifestyle: I unplug nearly everything before going to bed or when going out.  I limit my use of paper towels;  if it can be done with a dishcloth, I use that instead.  I take hot showers less often (2-3 times a week instead of once a day) and set my washer on cold water.  No more using the dishwasher.  I’m selling my movies, books, cds on amazon and e-bay in favor of going to the library. (My precious books are the hardest things with which to part).  I get 10 minutes of space heater time during which I get dressed in front of it.

I’ve even caught some media attention from doing this, while trying to get press for Modest Needs.  Once they find out I’m living like this, that becomes the big story – which is fine with me.  At least I get them to mention Modest Needs as an organization helping people stay self-sufficient.  If my “strange & kooky” lifestyle helps that along — by selling papers or getting people to watch TV, I care not.  It all feels quite normal to me, this austere lifestyle I’ve chosen.  It’s not for nothing that Laura Ingalls Wilder & Dick Proenneke are my heroes.  Anyway I should be in the January issue of 518 magazine and also the Bethlehem Spotlight newspaper, thus far.

Call my crazy.  I don’t mind.  This kind of crazy doesn’t hurt anyone and helps me prioritize, to stay mindful of what really matters.

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My precious boy and me, with grandma watching o’er in the background.  (I’d include more pictures of Andy but he doesn’t like it).

Over and out for now, peeps.  Time to work. And on Friday, courtesy of Tim, I am flying out to Indiana to see him and the Quarryland Men’s Chorus perform an off-book (memorized) intense holiday concert.  My Tim has a solo and one of the best voices in the choir.

How proud am I?

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“They love each other…”

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Holy cold.  The moment I announce my intent to go all winter without light or heat, I’m ready to drag out the space heater; it occurs to me I should ask a plumber just how low I can let my temperature get before I’m in danger of my pipes freezing.  The fact that this is all self-imposed hardly occurs to me.

It’s 50 degrees in my house right now and not even freezing temperatures outside yet.  My thermostat is still at 45 but I’m not sure that’s high enough.  I researched a little on the ‘Net but mostly there’s advice for people leaving their homes for the winter.  The fact that I run hot water to hand wash my dishes and take showers should count for something, right?  (That’s not a rhetorical question.  If you know, please tell me!)

I’m reading Laura Ingalls Wilder’s The Long Winter over and over, reminding myself of what she and her family survived through conditions far worse than my own.  I re-watch Alone in the Wilderness, a documentary about Dick Proenneke living alone for 30+ years in Twin Lakes Alaska, and hear his words echoing in my mind:  “It’s a toasty 40 degrees in the cabin today.”

I think to myself I can do this, I can manage.  I can “come out” of the cold to my car, or a friend’s house, or even the dreaded mall.  But it’s really hard to get out of my toasty bed in the mornings.  Manzo-kitty even has his own comfy blanket and snuggles next to me on the bed.

Yesterday my mom and I drove down to visit Boo.  On the way we listened to her new Barry Manilow “Dream Duets” CD, in which he has inserted himself into various deceased singers’ tunes – everyone from John Denver to Marilyn Monroe.  It’s kind of cool, in a slightly creepy way.  At least it wasn’t Sing Along With Mitch.

Oh, and it turns out they did find a train conductor costume for Boo to wear on Halloween, and he loved it.

Jonah, train conductor extraordinaire

Jonah, train conductor extraordinaire

One more reason to appreciate the folk at the Anderson Center for Autism.

I also found out they think his aggressions have increased in school due to some classroom staff changes; his aggressions at Birch House (where he lives) have stayed steady, which is to say mostly mitigated.

At least there is a reason, an antecedent.  It’s a huge thing for us…to be able to know why Jonah is upset.

At Andy’s apartment Jonah was overwhelmed, I think, by the variety & choices of items to eat.  Both my mother and I brought special items from Halloween with which to spoil Boo.  Usually he enjoys taking items we bring and putting them away – in the cabinet, refrigerator, or wherever else he deems they belong.  This day, though, he began to open up mini potato chip bags and chocolate cookie boxes and the silver-foil wrapped tuna fish sandwich, all before we could interfere and take most of the excess away.

Then he started scrolling through requests for things he didn’t have before him:  pot pie? pepperoni?  strawberry milk?  apple cider?

He was getting “squirrely,” as Andy and I call it, and so when I tried to calm him or help, Andy stopped me.  “Let me handle him,” he said firmly, as he often does.  Tears always spring to my eyes; while I know Andy is trying to protect me from a possible aggression, it is frustrating to have Jonah largely uninterested in me and at the same time be prevented from interacting with him – even if it is for my own safety.

On our car ride to get apple cider, I snapped one picture of him smiling and one of him imitating a strange skill I possess (of touching my tongue to the tip of my nose):

happy boo

happy boo

he's not as skilled as his mama but he tried

He’s not as skilled as his mama, but he tried…

And then a video of Jonah’s requested song:  Live for Love, by Prince…you can see his daddy handing him some lip balm for optimal comfort during Boo’s listening, rocking joy:

He’s got a new method and skill for selecting desired music.  He’ll say to daddy Wan take a picture? which actually means May I please have the case of CDs?

Then he announces the name (actual or self-invented) CD he wants, and selects it from the sleeves within the case.  Once he hands it up to daddy, he announces the number of the track he wishes to hear.  Sometimes it’s one simple request: number seven?  and other times Andy has to start at the CD’s beginning and Jonah will say number one? number two? etc. until he’s found (and will eventually memorize) the track number he really wants.

Although this new skill is impressive, it gets old when he wants one song from each CD, after having zipped up and handed the case back to Andy, requiring Andy to take it out and hand it over again – and eventually, inevitably, Andy simply suggests radio.  Usually this is cool with Jonah but once in a while he’ll confuse us with his rapid-fire requests:  Diamonds and Pearls?  – followed by  No Diamonds and Pearls?

And so once Andy suggests radio Jonah is usually resigned to his pop tunes by whomever-the-hell is cranking them out these days.  I’m a geezer with Top 40 and know barely any of the artists.   My tastes tend toward alternative (ex. The Pixies or The Elizabeth Kill), or classic (ex. The Beatles or Pink Floyd), or classical (ex. Mozart et al).  And of course, Guster, best of them all.

Suddenly I’m in a writing zone again.  Maybe November will be blog-heavy.  Who knows?  It keeps me warm, oddly enough – or at least is a distraction from the cold!

I did not end up going to see Boo today.  I am sneezing and stuffy, and yesterday I took my very first Boniva pill to stave off my osteoporosis.  I think I’m suffering a nasty-ass side effect of it with which I won’t gross you out.  At least I only have to take it once a month!

Hopefully the side effect goes away before the Jethro Tull show tonight my cousin B is treating me to experience.

Time to drink a hot beverage, do some jumping jacks, put in a movie and run in place, hold my hands over a candle, bake some cinnamon rolls (and open that beautiful oven door all the way afterward to release the heat), take a short drive with the heat blasted.  Anything besides sit still and f-f-f-f-freeze.

Hello from the hibernating hippie!

Hello from the hibernating hippie!

 

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If I don’t write something today it will be the first blank month since I’ve started this blog.  I’ve got plenty to say but I don’t want to say it.  It’s that fantasy-land thinking – If I don’t put it down on record, it isn’t happening. 

Which is not to say that I am not incredibly grateful, somehow simultaneously with the strong compulsion to smash something and scream.  I am grateful for every day in this new life since I have decided to live on my own ~ and somehow found the truest love I’ve ever known within that solitude.

I am grateful for everything I have, all my family and friends, my dumb American material possessions, my shelter and my food…grateful for everything for which Jonah has been gifted – an incredible education, a safe place to live, teachers, caregivers, awesome staff, a safe and loving environment.  I am grateful.

In order to guard against complacency, I have made unusual life choices.  At first it was a game, just to see if I could make it to October 1st without turning my heat on.  Then I decided (in honor of Laura Ingalls Wilder and Dick Proenneke) to stop using lights as well.  I bought some soy-based candles and I bundle up, typing with fingerless gloves and pushing the idea of heat into November now.  I stopped using the dishwasher and I turned in my cable box.

Last night I turned on the TV to watch It’s the Great Pumpkin, Charlie Brown (on one of my three channels) ~ I’d forgotten how maddening commercials are.  And so I watch movies instead.  I still do laundry and shower in hot water, which is more than either Dick or Laura had, but I’m trying to eat by going to the store only once a month or so for fruit, vegetables, half and half, coffee, butter, and milk.  I’m eating out of my ridiculously full cabinets.

Now I’m thinking seriously of going all winter this way.  I live alone, so there is no one to hurt or annoy.  I wonder how long I can last; I’m a skinny, cold little thing so I won’t be arrogant enough to say I can do it for certain.  I’ve got my heat set at 45 so my pipes won’t freeze and neither will I.  It will be interesting to see what I’ll owe on my next National Grid bill.

I know I’m a weirdo.  One of my relative’s favorite mantras to me is Why can’t you just be normal?

Because normal is a dryer setting.

It’s the best answer I’ve got.  So why the hollow day?  Sigh…

Jonah has been aggressing more and more often.  Three incidents requiring two people take-downs just this week.  There is hope in that the incidents, which before came with no rhyme or reason, are now reactive to things like fire drills or too-crowded rooms with over-input of sensory activity (lights and sounds and noise and chaos, like last night’s Halloween party).

I don’t even know if I’ll get a photo of him in his costume (which was a aqua-man looking thing I found in WalMart; I hate going there).  I guess he wore it okay.  They told me he’d like to be a train conductor (believe you me he did not ask to be a train conductor, because he can’t make those kind of cognitive leaps).  It makes sense, though, the way my Boo loves trains.  But train conductor costumes top out at size 8-10, and Jonah is a 10-12 now.  Almost everything he’d wear, understand, or want to be comes in toddler sizes only.  I wish I had the know-how to put together a Halloween store for kids with autism and other disabilities.

And now it’s Halloween.  I have always loved Halloween and dressed up in costume (even with nowhere to go) right up until this year, when being alone seems to have taken the wind out of my sails.  I compare it to the first day of school or the school picture-sharing day, when parents show off photos and memories and happy shit about their adorable kid in his or her outfit/ Halloween costume, having more fun maybe than any other day of the year.

I hate it, and I hate that I hate it.

But I am not an angel and I am not a saint and I have these stupid, useless feelings of envy for these everyday joys denied Jonah, Andy, and me.  Andy is waaaaay better than me at not caring.

Yes, there are advantages.  I don’t have to go out in the cold with my Boo and bring him from house to house, trying to explain to people why he won’t wear his costume or say “trick or treat” — though, thanks to the Anderson School for Autism, he does now wear a costume, and they do take him trick or treating, and he does manage a discernible “trick or treat.”  Irony.

Then there are our visits.  When Grandma and Andy and I show up at Jonah’s house on his campus to pick him up, he is always waiting at the front door.

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He flies into his daddy’s arms for a long hug, then tells grandma what he knows she’s brought for lunch, and with nary a glance at me he runs off to the car.  Then he’ll say mama in the backseat? while shoving me as far away from him as possible.

I understand Jonah is daddy’s boy and I am glad of it.  And I do get hugs and kisses, sometimes, once we are at Andy’s apartment (another thing I am grateful for, that Andy and I get along well enough to share Jonah visits).  But he clearly is unattached to mama now, and there isn’t anything I can do but sell my home and move closer to him, to a small apartment, to spend more time with my Boo.  It is something I am considering – but I can’t spend time with him alone and would need to find someone to help me.

My boyfriend Tim could do it.  He is a direct care worker for individuals with autism and can do everything from restraining to administering meds when someone under his care is having a seizure, gently holding them and keeping them safe and as comfortable as possible.  Tim is a gentle, loving, caring soul ~ he has met Jonah once, got along well with Andy, and was unfazed when Jonah had an aggression…standing at the ready to help but at the same time unobtrusive and friendly.

But he lives in Bloomington, Indiana…and has his own three children.  I am here, and have Jonah.  We do our level best to see one another once a month and are so far successful, for we do yearn for the home of being together.  Next weekend we are meeting in Pittsburgh; it is a halfway point for us — and we’ve found a nice B&B and an aviary museum and science museum we’re interested in visiting, as well as nature trails near a lake and a river.   This weekend I will go see Boo both weekend days to make up for the missed visit the following week.

At any rate that’s what happening.  I am overjoyed and frustrated and ecstatic and sad in turns, but will meditate today and throw myself into work with redoubled effort, for after November 1 comes our fundraising push and media-story garnering at Modest Needs, where I work.  I have sought a second, part-time job, wuth no luck so far.

If you are interested in Modest Needs, a BBB top-rated nonprofit, please consider stopping by our website and donating even a dollar or two to help those living on the edge of poverty (but who make barely too much for public assistance) to give them a hand-UP through a hard month, or to provide their kids with holiday gifts when their families meet with unexpected expenses, or to help veterans return home and re-acclimate to society with rent help or assistance to pay a medical bill, etc. while they wait for VA benefits.

I’m so proud and happy to work for these guys.  I was a donor for 8 years or so before I started working for them in May of 2013.

I am blessed.  Writing this all out allows me to feel it strongly, palpably, fully.

Finally,  here are some recent pictures:

mama and her j

Mama and Jonah

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Introspective Boo

Jonah, chugging his "app-oo ci-dah"

Jonah, chugging his “app-oo ci-dah”

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And one of my Tim and me, sharing time during a recent visit when he flew to see me.  I am a lucky woman indeed to have found such a love.

May all of you enjoy a very Happy Halloween and blessed Samhain!

 

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In the present world, this technological, psychotic, politicized, nonsensical world, you have to believe that the good guys are going to win.

~ Rufus Wainwright

The meek shall inherit the earth.

~ Matthew 5:5

Jonah is unashamed of who he is, and he harbors no hatred to anyone.

I read an article today about a stranger in North Carolina who paid for dinner at a restaurant for a family with an epileptic son.  The mother’s name is Ashley England and her son, Riley, is 8 years old.

“I’ll try to do this without crying,” the waitress told the family, according to WBTV.com. “But another customer has paid for your bill tonight and wanted me to give you this note.”

England said Riley, who is nonverbal, gets frustrated because he can’t speak, and he had been especially rowdy during the meal.

“He threw the phone and started screaming,” England told WBTV. “The past few weeks have been very hard and trying for us, especially with public outings. Riley was getting loud and hitting the table, and I know it was aggravating to some people.”

Ashley said the mystery diner’s random act of kindness brought her to tears.

“To have someone do that small act towards us shows that some people absolutely understand what we are going through and how hard it is to face the public sometimes,” she said. “They made me cry, blessed me more than they know. I felt like out of all the rude negative comments we are faced with, these outweigh them. The people who care. Little did he know what struggles we had been facing lately, and this was surely needed at that moment.”

I needed to read that.  And she’s so right: out of all the rude negative comments we are faced with, these outweigh them. The people who care.  I’ve been in such pain – nearly constant physical pain, the worst of my life (though it’s going away now)…and perhaps that’s why I reacted so emotionally to the icky troll comment.  Thanks for all of you who rose to my defense or left a comforting comment.  On a better day I’d have approved it, ignored it, and moved on.

I’ve been told by a few to just delete rude/mean comments from trolls or whomever, but I want them to have their say.  Maybe just so they can hear how idiotic they sound, or to remind myself of exactly how good the “good guys” are in comparison.  It’s like the physical pain I went through….which, incidentally, was worst on my birthday.  Pain reminds us how awesome it is to feel no pain.  Cruelty reminds us of how awesome kindness feels.   Balance and all that.

So not to worry, my goodfolk…I am neither crushed nor angered anymore at the comment.   Ignorance is simply lack of knowledge, and judgement is just an easy way to elevate oneself to a false level of confidence or ego.  The minute we start pointing fingers at one another we have lost the truth — that, really, we all could use a good long walk in a million pair of moccasins, each representing a different path, a different perspective.

I found this commentary about the meek inheriting the earth:

“The meek are those who can bear insult; are silent, or return a soft answer; who, in their patience, keep possession of their own souls, when they can scarcely keep possession of anything else.”

I like that.  I sometimes feel I’m the epitome of meek.  I’m not one for ‘soft answers’ but perhaps it’s something to strive for…and I’m not sure if I have learned patience so much as had it thrust upon me until I had to adapt to a patient mindset or go insane….but I’ve certainly got possession of my own soul, even when I can scarcely keep possession of anything else.

Boo has scarcely been on my radar screen through all this sickness, if the truth be told.  I missed my visit last Saturday.  I invite you to call me a bad mother, because frankly, Ms. Ickerson, I don’t give a damn.  I was in such pain all I could do was cry and pray.  Jonah’s father has picked him up for visits all week and through the fog of pain meds, I hear tell of a boy who is acting his usual self — unabashedly joyful, sad, hungry or angry…but always my sweet, precious Boo.

I’m hoping to move from the bed and the couch soon back to the outside, where my morning glory vines, stubbornly massive in their green reach, have finally bloomed into sky-blue streaked white flowers.  I’m hoping to feel better enough to see my boy on Saturday and hug him tight.  And I’m grateful I have told the un-sugarcoated truth for years now and have heard resounding cries of love and support in return.

Thanks so much.

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Someone left a cutting, cruel comment on my “let there be sight” post.  I approved it for all to see.  You be the judge.

Your son is, what, 12?? And you’re bathing him and giving him “mamalove” kisses everywhere? Inappropriate much??! ? Beyond icky.

Interesting that you claim to love your Boo — yet institutionalized him. You see him once a week for a few hours. This is love, how, exactly?  Boo learns to love and live and peacefully exist in the world by… not living with mommy or daddy??

I used to judge people too, for “institutionalizing” their children.  I used to judge people for all kinds of things.  And now I am judged.  I suppose that is how it works.

I don’t know when I will be able to come back and write here.  This coincides with a serious health issue I’m dealing with; I may go to the ER tomorrow.

Oh, how words can hurt.  Hurt like fire.  Even worse than the health issue, which hurts so bad I have to knock myself out with Tylenol PM every night.  M told me “if you’re going to post all your personal shit out there for everybody to see then that’s what you’re going to get.”

Here are pictures to soften the blow to my body and my heart:

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jonah battles daddy with a purple "noodle"

the pool - his favorite place

the pool – his favorite place

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Goodbye for now.  I can’t handle this.  Maybe I can’t blog anymore if I can’t handle the haters.

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For the first time, mama was the one who got ditched on last Saturday’s ride to transfer station.  “Want grandma?” Jonah asked pleadingly.  I was happy she got the chance to ride along, for once.  I guess during their ride Jonah had a small meltdown, but no injuries were reported.

While I waited for them I took Clan of the Cave Bear off Andy’s bookshelf, and sat on the front steps reading my favorite parts.

the sun caught Jonah's "octopus" and made it glow

On the ride from Anderson to Andy’s house, the sun caught Jonah’s “octopus” and made it glow

My mom brought down a small cake, a candle, two cards with gifts (one from her and one from my aunt T and uncle D, who always loved Andy), and some Happy Birthday balloons to celebrate daddy’s birthday.  Jonah especially loved the cake, and he carried the balloons around while he watched train-on-TV.

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Boo, loving some colorful birthday balloons!

Boo, loving him some colorful birthday balloons!

Jonah has three weeks off from school now until regular school starts in September.  Andy takes him for a visit nearly every day, and I hear tell from him that Boo has been a pretty good boy.

His new favorite food request is green cracker? which are those packages of 6 crackers-n-cheese.  He calls it green cracker because his favorite kind is the one with chives in it.   Boo seems to like a lot of stuff I wouldn’t even think of eating until I was an adult:  cream cheese, sour cream, bleu cheese, salad, you name it.  Also “fie-cheese-zanya” which translates into five cheese lasagna, a frozen meal Andy sometimes prepares for him.  There are times Boo eats one food after another.  Tuna fish sandwich and chips done?  Okay, how about some donuts?  Donuts eaten?  How about some salad?  I sit and think really, kid?  Dessert does not necessarily come last, and requests for all manner of foodstuffs must finally be refused lest Jonah explode or get sick.  Good thing he has his mama’s skinny frame and fast metabolism.

The other night I was trying to sleep and an oft-buried thought came to me unbidden:  What is going to happen to my precious little Boo?  Where Jonah is concerned I live day to day, mostly by necessity.  But he will be 12 in March, and I’m too old to pretend the years do not slip past as if on an ever-speeding conveyor belt.  It has no OFF button (well I suppose it does, when we die) but continues on its relentless journey forward: gears cycling, turning, and spinning just like Boo.  It foretells a formidable future.

I need to call the school and talk to them about this.  I think they start pre-vocational training at age 12, and I know they have a mock apartment to teach independence.  I understand they guide the children from one life phase to the next with expert care.  But the aggression!  What of his behaviors?  Who wants a randomly biting, hitting, kicking, object-throwing janitor or grocery bagger?

Will he be able to live in a group home if he still has those behaviors?  What is the alternative?  Move home to his aged mama to beat her up all day?  What happens to all these people with autism who were in the first phase of the “epidemic” and are now entering adulthood?  Do we have the resources to care for these individuals?  Are we prepared for large wave after bigger wave of young autists entering society?  Do we know how to appreciate the gifts they have and not simply try to make them all just like us?

Can I get Jonah to a peaceful point before he ages out of Anderson?

My mother insists on it.  She wants me to give this gift this to her, to use all resources, do anything I can, pull out all the stops, and make it happen.  She tells me she wants to die in peace.  (She is 70 years old and to the best of my knowledge she is not dying – at least no more than any of us is dying).  Of course I want her to die in peace…but she’s giving me a tall order.

Mama the magician.  Better polish my wand.

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Jonah has a new favorite song – “Topaz” by the B-52s, on the album Cosmic Thing.

“Our hearts are traveling faster,
Faster than the speed of love
Straight through a tear in the clouds
Up to the heavens above…”

I think it sounds like the Tom Tom Club, who used to play with the Talking Heads.

On Saturday I wasn’t feeling well and suddenly, neither was Jonah – as if he could catch something from me immediately.  My mom and I brought lunch as usual, and we’ve also brought water to Andy in jugs each week, since he has hard water (sounds like an oxymoron to me).  Jonah ate well, then requested more food, and more food, and more food.  More, even, than usual; we had to cut him off. 

During both rides he requested “Topaz?”  – a song I didn’t remember.  Andy put the album in and Jonah nodded along to it in the backseat on the ride to the transfer station.

he's starting to feel a little icky here but still has a smile for mama

He’s starting to feel a little icky but still has a small smile

When we returned to the apartment I curled up on the couch.  I watched Andy pull a chair nearby and take Jonah in his arms.  Boo listened, and occasionally watched, “Train on TV.”  He melted into Andy’s arms and sucked his thumb.  We both lay, sickening with every moment, he and I.  It was a weird “E.T. and Elliott” feeling.

For a moment I indulge in the E.T. fantasy.  Like E.T. I languish while Boo rises up, and out, of how sick he felt.  My organs fall sleep as his brain begins awakening, rearranging itself into the neurotypical  — just like any other boy…communication at the cost of utter innocence.  My heart pulses weakly and stops.  A very fair trade.  But like E.T., I come to life again and some UFO peeps take me back to my home planet.

I found so much comfort in the incredible love he has for his daddy – for how inviting and strong daddy’s arms are for our little Boo.

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In truth, though, there was no E.T. outcome.  We both stayed sick, Jonah later throwing up and me returning home, escaping to sleepy bye land.

But we both recovered quickly, and Jonah has had good days since, swinging high on the playground right outside his window, then jumping off and running free – faster, even, than the speed of love.

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This morning I met Jonah, J, and P (his transporter/caregivers) for Boo’s retina doctor appointment.

It was raining out as I walked over to the van to greet them, and people going into the building either had umbrellas or were running to get to a dry place.  But I love being out in warm rain (and even pouring rain, if I’m at my house so I can go inside and change).  Jonah’s like me.  He stepped down from the van to the pavement and we danced around in the rain for a minute before going inside.  I greeted him with kiss and blue octopus and fruit snacks, and he was in a happy mood.  He sat nicely in the waiting room, too.

fruit snacks + blue octopus = happy jonah

fruit snacks + blue octopus = happy jonah

As we waited in the exam room for the doc, he sat on his legs, facing the back of the chair.  Then he lowered his torso and let me scratch his back and give him a little massage.  More here, he’d say, moving my hand to the spot he wanted scratched.  He even stuck his butt in the air.  “You scratch your own butt,” I told him, and he giggled.  He does have a sense of humor, my Boo.  He asked for kisses on his elbow, shoulder, head, and belly.  I tickled him and got more laughs.

He never lets me do this and it is wonderful.  Rare like a jewel.

He lifts his shirt so I can scratch and rub and kiss his back.  Kiss neck? he asks, and I happily oblige, pouring a weeks’ worth of love and affection into every touch and every kiss, whispering to him how much I love him, how he is my angel.

Boo was great for the doctor, too, tipping his head back like a pro for the eye drops.  The pressure in both eyes was 12 (very good) and the doc said she could see the back of the left eye some, finally.  When she tested that eye, he pulled his usual bullshitting: “A…X…J…G” – no matter what the letters really were…as if he thought he could outsmart us by declaring the letters with confident, rapid clarity.  So I’m in the corner laughing with P and then the doc tries holding her fingers up instead, and he could tell her how many fingers correctly from about a foot away.  This is super-encouraging because it means there is still sight in Jonah’s left eye.  And maybe it’ll even improve.   Best news of the day, hands down.

My boy has had a good week behaviorally, following a crappy week.  I’m starting to accept the uncertain cycle of this, for the time being anyway.

I’m writing so much that these newly-August weeks are filled with work; I took on a temporary assignment for standardized test passages in addition to my other job with Modest Needs.  I have two deadlines swiftly approaching.  That’s just fine with me. When you love to do something, they say, it ceases to be work – and I agree.  I love my job(s).  At the tender age of 43, I’ve been set free of the rat cage.  It almost feels like retirement, sans boredom.  I have nothing to complain about.  No matter what happens, I have been blessed.  Nothing can take that away.

Tomorrow my mom and I will drive down to Rhinebeck as usual, hoping Boo will be like he was today – but even if he’s aggressive and impossible to handle, he can see out of both eyes, and that’s what I’ll be most thankful for, no matter which Jonah the world hands us.

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