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Archive for the ‘placement’ Category

It’s been a great summer with Jonah – he was mostly happy, lovey, and good-natured.  Predictable in the best way, and I swear he grew 6 inches since last year — my height (5’7″) at least, when he’s not in his typical slouch.  He went swimming, enjoyed campus walks at school, and his visits with us were awesome –well, at least from my perspective.

Our summer routine:  my mom and I drive down early every Sunday morning, and as always she stays back at Andy’s apartment while Andy and I pick up Jonah at his residence.  About 80% of the time, he’s already at the door, looking through its window for daddy – because it is daddy he looks for.  Andy picks Jonah up for visits a few times a week, and Jonah adores his father.  So as soon as we enter the code and open the door, Jonah walks out immediately.  I don’t take any of this personally.  Whenever I’m not there, he asks for mama, and I know he loves me too.  It’s all just part of how he rolls.

Usually Andy takes Boo to the car while I stay back to sign him out, talk to the caregiver staff, gather his coat or other items, and grab his meds for the day.  When I return to the car Andy’s just putting Jonah in his harness and getting him settled in the back seat behind mama.

Jonah asks for radio and if the song is not what he wants he’ll say other radio – and if it’s not loud enough, he’ll say on which is his way of asking us to turn it up. On! he’ll repeat until it’s either loud enough for his satisfaction or as loud as we’ll let him have it.  Then we drive to either Dunkin’ Donuts or Stewart’s and procure a jelly or chocolate donut, based on Jonah’s caprice.   We head back to the apartment as Jonah eats his treat.  I hand him a wipe and he cleans his own hands and face, then hands the wipe back to me.  Sometimes he asks for kiss hand and gladly I oblige.

At the apartment he confirms Grandma is there and will sometimes acknowledge her, usually accepting a hug or kiss, then heading for the fridge.

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There he pulls out random things he thinks he wants and we help set him up with the burger and fries grandma always brings.  Sometimes he asks for Jungle Book or Oompa Oompa,  his attention span varying in length but always longer than it used to be.  Sometimes he asks for train on computer and wants to choose his own videos, on as loud a volume we’ll allow.  He still, on occasion, enjoys his bathtub brunch.

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Always after these activities and sometimes in lieu of them, he disappears into Andy’s bedroom to get in and under the covers.  I ask “can mama lie with you?” and he always says yes.  So I take off my shoes, make sure his are off, and get in with him.  Usually he giggles: “And the boobie,” he says softly, turning to try to reach down my shirt.  I gently move his arm and he giggles again but stays still.  And after only one redirection, lately, he keeps his hands to himself, turns away from me, and pulls both covers and pillow over his head; I curl into him and rub his shoulders or scratch his back.  Usually we both fall asleep for an hour or so like this.

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I sometimes hear my mother and Andy talking.  They argue politics or talk about Boo.  Andy got rid of TV and my mom can’t have her Fox News anymore, so she reads a newspaper or book.

Like I said, visits this summer were awesome for me.  Andy doesn’t mind if I take a nap with Boo, but poor grandma is left to her own devices.  “Lie down with us,” I tell her, and she could, but she doesn’t want to.  Stretched out on the bed, you can see just how long and lanky he’s gotten.

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Sometimes my mom gets sad about Jonah napping during visits, but I remind her it’s a hell of a lot better than the stretch of time when Jonah refused to get out of the car at all – or, worse, when he was attacking us left and right.  At least he comes in the apartment, even if it’s only to nosh and nap.  It’s more than good enough for me.  My mom is getting older, though, and she tires easily.  It’s a lot for her to drive down.  Lately I’ve been doing the driving, both ways, in her car.  And if I can’t visit for whatever the reason, she hasn’t been going either.

It’s hard on her, and on my dad too, I’m sure.  Jonah’s the only grandchild they’ve got, and they’re surrounded by friends, family –everyone, really, all talking about their grandchildren.  Photos and stories of them at the beach, in a play, on vacation, at graduation.  My parents wanted that too.  They love Jonah very much but I’m sure they grieve the grandchild(ren) they never had.

Because Jonah is 15 now, we’re starting the process of transitioning him to an adult program. He can stay at Anderson until he is 21, but before that we need to identify the best, most appropriate housing for Jonah.  So I went to a required Front Door orientation about a month ago.  Mostly they talked about very basic stuff – what it means to be eligible, how to prove eligibility, how to access services – things we plugged into years ago.  Because it’s an adult service, though, some of the details will change.  Instead of an Individualized Educational Plan (IEP), for example, he’ll have an Individualized Service Plan (ISP).

And so here we go.  So far Andy and I have only decided that we will choose the best place we can, whether it’s near Albany where he once lived with us, near Rhinebeck where he lives now, or somewhere in between.  Aside from that, we’ll cross bridges and make decisions as we come to them.  It’s a 6-year transition for a reason; the system operates slowly, lists are long, and Jonah may change and grow beyond what we anticipate.  If we had to make such a decision today, it might be very different from one we’d make 6 years from now.  I guess we need to decipher the most likely trajectory and go from there.  We really are at the very beginning of the whole process.

To be honest, I don’t like thinking about it.  It would be easy to worry, to waste time imagining scenarios and outcomes, but what good would it do?  Best to educate ourselves about options and forge ahead.

But here comes Halloween time, and for the past two years this has meant Jonah’s behaviors get worse and he becomes very aggressive.  Last year he was so violent, he spent Halloween in the hospital.  And sure enough, it seems we’re in for it again.  Andy says not to worry, that Jonah continues to be good for him and on our visits, and he’s right.  But last week I got the dreaded email, on three different occasions, detailing dates and times during which Jonah needed take-down interventions.

I can’t even muster the hope that it won’t be another season of helplessness in the face of whatever’s making Jonah’s pendulum swing yet again.  I have to wonder if he has Seasonal Affective Disorder (SAD). He does have crying jags now and again that seem to have no cause.  I think I have SAD too, or maybe it’s just a reaction to Boo’s uptick in behaviors, but either way I face depression in the fall and winter.

My solution this year is to schedule more things with friends and force myself out of the house.  Almost always I end up enjoying myself, and getting out is healthier for my head.  It’s way too easy for me to “hermitize,” as I call it, staying inside virtually all the time unless I go to work or visit Boo.  Amazon.com and grocery delivery make it that much easier to stay in.  It’s no good for me to sit and dwell or go numb and listless.

As a result, I’ve spent more time recently with my sister Barbara (it still feels so strange to say my sister) or my friends.  I went to a beautiful mountain Oktoberfest with an old college roommate, drove over to friend KP’s house for food & a fire, that kind of thing.  It isn’t easy, honestly, when home feels so comfortable and the world seems full of obstacles and assholes.  This Saturday night I’m even joining a bunch of friends on an evening Halloween cruise with dinner and dancing (dear God and little baby Jason help me).  I’m going to fight this SAD if it kills me, both on my own behalf and on Jonah’s too.  I’ve been talking with his doctor and behavioral staff and they are raising his dose of Prozac a bit.  We want Boo to be happy.

I’m bracing for the storm that might blast us for a third year, but also embracing the good days, and feeling very grateful for every last one we get.

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There’s more to tell and it would be easier if I’d write here more regularly, so I’ll work on that too.  I just found more siblings – a younger half-brother and sister on my birth father’s side.  They didn’t know I existed, which is a whole lot different from finding my birth mother’s daughter, Barbara, who had been looking for me my whole life.

My new brother and sister both seem interested in at least emailing, which is more than I’d expected.   Given the situation, I won’t mention names or post pics.  I was born just days after our father married their mother, which doesn’t sound very good.  The last thing I want is to cause a rift in their parents’ long and happy marriage, so I’m going to let my new siblings decide how to handle what must be very shocking news.

Who’d have thought this only child would end up with so many sisters and brothers?  I wonder if there could be more even I don’t know.  Life throws curve balls.  I’m as ready for them as I could be, I reckon.

Here’s to a happy Halloween for Boo, and all of you!  I’ll keep you posted on that storm, if it lands…

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And so the child who once wouldn’t wear a hat or a hood or a cap, no matter what the circumstance, is now the teenager who wears his hood up and tied securely around his face.  I have several photos of him, several weeks in a row, sitting in the back on car ride (he hasn’t been coming in to Andy’s apartment for his visits lately).  In each photo he’s got the blue coat on with its hood up.  Last Sunday while parked in Andy’s driveway, Jonah declared blue shirt on?  – so Andy went inside and changed into one of many blue shirts he keeps in a special place for just such a request.  Thus appropriately garbed, he got back in the car and prepared for another ride.

My mother, who stays back at the apartment for these rides, visits Jonah in the car when we come back and park after each loop.  Nearly always she has a cheeseburger and fries, and this week she’d brought him 4 Thin Mint Girl Scout cookies as well.  Jonah has been happy, silly, all smiles and loving his rides, rocking in his seat to hip-hop and Top 40, wanting it as loud as we’ll allow.  On?  On?!  (It means louder, please in Jonahspeak). There is a CD of dance music I made for him more than ten years ago now, and he asks for it by requesting Mama CD?  Week after week, once this particular CD is in, he requests 3 specific numbers of song tracks and then says all done mama CD.

This time, however, we pulled into the driveway during the 3rd song – and, distracted by grandma and cheeseburger, Jonah wasn’t on top of his DJ game so the CD continued to play.  I didn’t know he could even see the track numbers on the dashboard CD display, but when Andy got back in the car for a second loop, Jonah piped up: 13?  

Andy went to track 13, the song Funkytown came on, and Jonah wanted it louder right away:  On?  When it was over he said 13? again.  And again, and then once more, before deciding he’d had enough talkin’ bout moo-ooo-vin’ and wanted some radio.  Last weekend I was fighting off a migraine and had to cut my visit one loop short because I couldn’t take another song.

Hopefully, with the coming of the springtime we’ll get him out of the car and into the apartment or over to the park, even.  For now we’re all just collectively grateful he’s been good.  His move to the new residence seems to have coincided with the good, though I hate to play the cause and effect game, as it proves faulty at least some of the time.

Grateful are we, as always, to the caregivers at his residence and school.  Last week I walked down to the Capitol and joined hundreds of other parents, care workers, and clients for the Be Fair to Direct Care rally.  We are asking Governor Cuomo to include at least 45 million dollars in the budget for an increase in pay for direct care workers throughout New York State.  Anderson parents were asked to bring a photo of our child, so I came with Jonah’s picture and cheered with the others when the Governor himself, in a rare personal appearance, came out to address the crowd and promise he wouldn’t sign the budget without the requested money in it.

Direct care workers deserve fair pay – excellent pay, even – for they protect, feed, clean, play with, and comfort our kids.  They deal with all manner of random issues working with them – things that are frightening, or gross, or just plain exhausting.

I was proud and honored to be a part of this effort on their behalf.

P.S.  Yes, I changed the name of the blog.  It feels right to do it now, and I like it better.  Until next time…

Jonah and I say thank you to all caregivers everywhere – and Happy Spring to you all!

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Jonah’s 15th birthday was Tuesday, March 7th.  He did really well at school – they had a little party for him, he had a big ice cream cake at his residence, and in general he’s been better behaviorally again.  I’ve been depressed, and off-the-charts anxious, and am figuring out new doctors and medications – hence my infrequent blog posts.  I don’t want to complain and rave about myself but I’ve been isolating from people and sleeping too much, struggling to wait for the springtime, hoping it brings me peace with its sunshine and warmth.  I am grateful I have a good job working for an organization that helps empower disabled people, which is kind of perfect for me.

One thing Andy and I have to do now is begin the process of identifying our hopes and goals for Jonah’s future, including adult placement options.  It’s overwhelming to consider – seems every time I get accustomed to one part of this journey, another comes along and sweeps the rug right from under my already unsteady legs.  I have a name and number to call and get us started.  They recommend beginning the process at age 15, even though individuals at the Anderson Center for Autism do not “age out” until they turn 21.  There’s a lot to it – we need to get things in place with social services, disability, ensuring we have guardianship, setting up a special needs trust, and more.  And under this new administration I feel Jonah is less protected, his services jeopardized.

I hope I’m wrong.

I’ll be back as I can with updates, and photos, and to share more than I am able to lately.

Happy Birthday, Boo!

 

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So I came across a news story on Yahoo about a special needs kid getting his high school diploma.  Proud mama is grinning, and the headline reads Child With Severe Autism Beats Odds To Graduate.

Severe autism my ass.  I’ll show ’em severe autism.

I guess we’ll need new terms to describe people like Jonah.  Perhaps we could use adjectives from bags of Doritos:  Extreme autism.  Ultimate autism.

Or natural disasters:  Tragic autism. Catastrophic autism.  Lately it’s felt pretty catastrophic.  Jonah’s gotten worse and worse, with a few glances of happy, like this one on Christmas Day –

Christmas Day 2015

One tick of grandma’s kitchen clock – and even as he smiles, you can see him reaching up to pull my hands off his body, take off running-humming-spinning.  At the next tick of the clock he’ll turn on you snakestrike quick, hands snatching hunks of hair, scratching skin, head butting, legs kicking, all the while strangely quiet as if silenced by a fear of his own violence.  (When I visit him, I’m always half-blind; I don’t dare wear my glasses and I can’t wear contacts).

Thorazine didn’t work, though they tried raising the dosages steadily.  And now the Anderson Center for Autism has reported to the Albany School District that Jonah is not meeting his educational goals (which include behavioral benchmarks).

In other words, you’ve got to find somewhere else for this kid. 

Andy and I knew this might be happening soon.  They’d hinted at it before.  The Anderson Center reassures us, at least, that Jonah will not be sent packing on the next train to nowhere.  They’ll continue to teach, house, and help him until we find a more suitable placement.  In fact, one of his behavioral specialists tells me they’re planning to set up an alternative learning environment for Boo, where he will be the only student.  It’s probably almost necessary, in fact, given Jonah’s recent attacking.

I don’t even want to consider what options there were for someone like Jonah a hundred years ago.  I’m grateful it’s 2016, and I’m grateful for Anderson’s staff, who have worked so hard to help.

It’s just that I always considered the decision to place Jonah in residential care as the edge of the cliff.  You do as much as you know how to do – call on every resource, employ every method you can, persist in every hope – until you face this wall of reality and on the other side your child must eat-sleep-learn-breathe-live away from you.  As in, not in your home at all.

It was the end of a geographical era in our lives.  It was an atom bomb.  A record-breaking earthquake.

But not really.  Turns out it’s just another chapter in a book about a kid so behaviorally affected that even the residential school we found for him couldn’t handle him.

An e-mail from this past Wednesday:  This email is to notify you that Jonah was in a physical intervention on 1/20/16 at 10:30am, 10:53am, 12:30pm and 1:40pm.  They’d called an ambulance to take him to the hospital the day before, because the aggressions were so frequent.  The hospital isn’t the place for Jonah when this happens; Andy and I know it.  But what is the place when this happens?  Where can he go?

If Jonah gets better, he will undoubtedly stay at Anderson, of course.  The cogs in this machine turn slowly, and if we can just get a handle on this, Jonah’s life need not be disrupted.

Urgency + desperation + helplessness = how Andy and I feel.  We talk about it carefully, if at all.  Not a lot needs to be said.   “Where Jonah goes, I will go,” Andy tells me.   I believe him; he moved to the Rhinebeck area when Jonah did, more than four years ago.  He has a life there now – a job and a girlfriend he loves.  But we take things one day at a time.  We try not to put carts before horses.

Now Jonah has been completely weaned off Thorazine. Beginning tomorrow, he’ll start taking Clozaril – what seems to be a “last-resort” drug, usually used to treat very severe schizophrenia.  And nobody even tried to sugarcoat the situation.  This drug is risky.  The information I look up is scary.

From drugs.com:  Clozaril is available only from a certified pharmacy under a special program. You must be registered in the program and agree to undergo frequent blood tests.  Jonah’s nurse explained how everything is well monitored – in fact they can only get 7 days of the medication at a time.  Andy and I signed a form, as we always do with a medication change, but this prescription also had to go before the board of health as well.

I never thought I’d be okay with a drug that has so many warnings.

On second thought, I don’t think “okay with it” is what I am about the drug, or about any of this.  But Jonah’s doctor said she’d used it on 10 patients and 9 of them showed significant, life-altering improvement.  It gives us all hope, somehow, still.

The cycle of Hope and Despair turns stubbornly.  In the midst of despair, you think you’ll never entertain hope again.  Hope has let us down, after all.  It’s let us down every fucking time.  Despair is painful as hell but at least there’s no one holding a football to yank it away at the last second.

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What a deliverance of hope it would be if Clozaril was the answer!  I allow myself to imagine it this day for a tiny piece of time – a Jonah freed from aggression, from anger, from violence.  My happy boy, our sweet Boo, the baby-est angel.

If I indulge in the fantasy, I come running at the football again, trusting Hope to hold it in place.  What does it mean to come running again and again, knowing the football will be yanked every time?  People have philosophized on this.

I don’t know.  I just don’t want Jonah to hurt anymore.

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I took this photo last week during a car ride, when Andy pulled over and we got out to avoid being kicked.  These pull-overs happen frequently; Jonah’s good at scrunching way down in his car harness to get good leg extension and reach us in the front seat.

You can see Andy’s reflection in the window.  Juxtaposed with Jonah’s expression, I think it paints a poignant picture.

Today was better, at least during our visit.  Two direct caregivers walked Jonah out to Andy’s car to avoid the recent attack-mama-or-daddy-as-soon-as-they-walk-in-the-residence pattern.  One of them told me Jonah’d had a severe aggression about an hour prior to our arriving, so we set forth with trepidation…but despite much kicking and multiple pull-overs, Jonah was better for us than he has been.

In the apartment, I even got him to sing a little as he traced a large figure eight in and out of Andy’s bedroom into the living area.  We sang I’ll Be Working on the Railroad, Bye Bye Blackbird, and more than a few Guster songs for good measure.  First I sang a line, then I motioned at Jonah, who easily picked up the melody, lyrics, and rhythm.

I thanked God for it.

Evidently they’re expecting Jonah to respond to Clozaril within two weeks, if he’s going to respond at all.  Tomorrow’s the first dose.

Hell, I may just run at that football one more time.

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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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Note:  This is kind of stream-of-consciousness – I am writing lazily and may or may not proofread or edit…

This morning, P, one of Jonah’s caregiver/bring-to-the-doctor folks, called me at 8:09am on my cell phone.  I was still lying in bed and answered sleepily.  Jonah had an 8am doc appointment today with his glaucoma doc and I’d forgotten to write it on my calendar.  There was no way I’d make it there, so I asked P to please call me after the appointment.

I want to emphasize my continuous daily gratitude at the mere fact that I can still be in bed at 8:09am on a weekday at all.  It’s a distressing mystery how (and how quickly) I furtively and quietly descend from undying gratitude to a place where I am taking everything for granted.  I’m doing pretty well at maintaining the self-awareness necessary to stay in appreciation mode, though.  So I am still here in Thankful Land; even though it may not sound like it, gratitude is still my foundation.

When P called me after the appointment, she told me they weren’t able to do anything there.  Jonah attacked her, J, the nurse, the doc…everyone but mama, the no-show.  My immediate reaction was guilt — he expected mama to be there.  I wasn’t there with octopus and fruit snacks and slinky and a drink.  I started to cry and I said “I’m so sorry” – everyone had gotten at least a good scratch or bite, I’m sure.  And I’m sorry because maybe if I was there he’d have been fine.  Three hours driving for nothing.  P told me it wasn’t my fault — and maybe it wasn’t — but my forgetting the appointment was my fault, and I don’t think I’ve ever done it before.  So they have to reschedule and drive back up tomorrow or the next day if possible, because the doc is going on vacation. 

Maybe it was divine intervention – I couldn’t handle seeing Jonah like that, so I was supposed to miss this appointment so I wouldn’t have to watch (or be injured by) Jonah’s out-of-the-blue attack modes.  It’s just one more thing to add to the list of everything I don’t know.  Good thing I am relatively comfortable with ignorance where it can’t be helped.

Is it normal for me to constantly want to attach Jonah’s behaviors to some shred of meaning?  I am not a ruminator but maybe I should be more of one.  Maybe if I tried harder to attach things, they would finally attach.  For some reason today I need to feel like someone understands, and the blessing is that (partially because of a core group of readers’ comments), I know people understand.

There should be a non-fiction, realistic, autism book out there to help us feel like we are not alone and to educate the world that there are plenty of us who are just making it day by day, as best we can.  I’ve read most of the well-known “autism family” non-fiction books, but they seem to offer not empathy but rather a superior attitude.  And 90% of them (or maybe even 100%) are written about children with very high-functioning autism (or kids who were low-functioning, but thanks to the Superparents’ dogged determination, have climbed their way out of the darkness of autism into the fucking light).  Evidently the rest of us can rest assured we have done everything wrong, made bad choices, and are selfishly lacking in the love-drive necessary to save our children like the people in the books.

Now I’m projecting.

I feel angry today. Can you tell?

Part of the reason I haven’t written in a while is personal, stuff that doesn’t belong here but has nonetheless messed with my head on one level or another…not all in a bad way.  I have found out where I stand in order of importance/significance/priority with a person or two, and that order was lower than I knew, and that hurts. But I do it to myself.  You teach people how to treat you, as Dr. Phil used to say back when he was still good.  I’ve taught a lot of people to treat me however they please.  Unless you have hurt me in an ongoing, vicious, or deliberately harmful way, everybody knows it’s a safe bet Amy will capitulate on the side of letting it go… or letting it be, right K?   It’s the path of least resistance.

The truth is, though, things like this usually dissipate quickly.  They exit my mind…and so they’re only really a problem if I allow them to be.

A joyful Sunday – went with my wonderful friend D and her husband to Tanglewood for the Boston Symphony Orchestra, which was fun and lovely.   The Royal Baby was born (I wanted Kate to have a girl, though).  I watched the last episode of The Sopranos last night (which, perhaps for the same reason I love Schubert’s Unfinished Symphony and Lois Lowry’s The Giver, I found appropriate, clever, and chilling).  Then all the news: George Zimmerman and Helen Thomas, and this star’s marriage and the latest viral video.  And the way I put off writing here when I feel dangerously upset or anxious, because I don’t want to come off like I’m having a pity party.  The phone calls each night between Andy and me.  Something I said to him on Saturday I wish I could take back because it laid me so bare I shivered in the heat. 

Inside me today lives an unrest that may last for a day but has the potential to go on and on unless I get a grip, which I undoubtedly will, given the fact that I’m not sitting at a desk in an office selling advertising and trying not to feel all this.

I will post some picture-stores of what’s been happening since last I wrote.

On Sunday the 15th I went to Delmar for brunch to hear my lovely friend Chrys play with the Jim Sande Ensemble (they were awesome)

On Sunday the 15th I went to Delmar for brunch to hear my lovely friend Chrys play with the Jim Sande Ensemble (they were awesome)

Jonah, last week at the same glaucoma doc he flipped out on today.  Here they are testing his left eye.  He can't see out of the eye and is about to give some bullshit answer.

Jonah, last week at the same glaucoma doc he flipped out on today. Here they are testing his left eye. He can’t see out of the eye and is about to give some bullshit answer.

Boo playing nicely with the slinky I'd brought him...sitting in the waiting room patiently for doctor number two, this time planned.  He was a good boy the whole time.

Boo playing nicely with the slinky I’d brought him…sitting in the waiting room patiently for doctor number two, this time planned that way. He was a very good boy the whole time.

Chillin' while he waits for doctor number two, who told us everything looks great and the cloudy blood cells are beginning to dissipate).

Chillin’ while he waits for doctor number two, who told us everything looks great and the cloudy blood cells are beginning to dissipate.  He got to leave without the eye shield, too!  He’s had it on for two whole months.  Poor kid.

This past Saturday:  Daddy helping Jonah put his shoes on -- and no more eye shield, finally!

This past Saturday: Daddy helping Jonah put his shoes on — and no more eye shield, finally!

Here’s a cute little video of us in the car:  me handing Jonah some lip balm and showing him how to press his lips together afterward.

Me, at Tanglewood Sunday afternoon, about to enjoy Tchaikovsky, Bach, and Tellmann (all contemporaries; Beethoven and Mozart came next)

Me, at Tanglewood Sunday afternoon, about to enjoy Tchaikovsky, Bach, and Tellmann (all contemporaries; Beethoven and Mozart came next)

When the music's over...

When the music’s over…

Lots of writing work today.  I can tune my TV to 1270 and go back to the music…

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I have not wanted to write here.  I am only going to spout lots of depressing crap in this post, so if you don’t feel like reading it, please feel free to skip this one altogether.  It reads too much like a diary and is too personal.  I admit things I don’t want to admit.  I’m this close to deleting the whole damn post.  In fact I want you to skip it.

Sigh.

When my mom and I drove down to visit Jonah last Saturday it was difficult all around.  Andy had taken Jonah the night before for an overnight visit, and Jonah didn’t fall asleep until 5am.  I don’t know if it was the heat that kept Jonah up or what, but as a result Andy was exhausted.  At first the only discernable effect on Jonah was a strangely voracious appetite, asking for one food after another, though later he napped against the window on his car ride.

asleep in the car

asleep in the car

He refuses to have all 3 of us in the car, which almost always means my mom has to stay back at the apartment while Andy and I drive him around.

This time we tried to force the issue, but Jonah wasn’t having it.  My mom got in the back of the car with him and Jonah immediately attacked her, pulling her shirt and scratching up her shoulder.  So as usual she went inside and watched Fox or QVC or whatever the hell on TV.  But she’s sick of it, the whole thing, the making sandwiches for all of us ahead of time and driving an hour and a half every week to bring Jonah gummy bears, chips, special treats, then visiting him for 10 minutes and being left behind.  She’s tired and she doesn’t want to do it anymore, as much as she loves her grandson.  Then, to add to it, Andy and I have been arguing on the car rides recently and sometimes I come back crying, and that pisses her off too.  She yelled at me on our ride back home, demanding why can’t two people get along for 3 hours once a week?

I have no answer.  I don’t know why.  It was never a problem before.

There is so much frustration in everything that has to do with Jonah now.  God help me but sometimes I don’t want to drive down either.  Back home I sit in Jonah’s room sometimes — I’ve got it decorated like a guest room now:

Jonah would destroy all of it with one sweep of his arm

Jonah would destroy all of this with one sweep of his arm

I look at it all and then close my eyes.  I picture the room as we’d prepared it before he was born:  the pale green checkered curtains and light wood crib with matching green checkered bedding.  The toy box, bookshelf full of baby books, closet & dresser full of tiny clothes.  The before.  And the wee baby days when Jonah was sweet, strong, holding his head up early, walking early.  We all thought he was so very healthy, so uniquely intelligent.  I’d nurse him on my lap and balance my own dinner on the edge of the boppy pillow, gazing down at my beautiful son, our eyes meeting with love.

"those were the days"

“those were the days”

“And you know where you were then…”  I sigh too because sweet, innocent, dingbat Edith (Jean Stapleton) of my favorite show has died, “stifled” all too soon, even if she was 90.

Now we don’t know where we are, or what to do to solve anything, and more questions, trouble, worries appear on the horizon of each day.  I have no health insurance for 90 days, and I can’t afford COBRA.  I need to find out what insurance paid for which doctor and what medicine so I can ensure Jonah is still covered for everything he needs through Medicaid disability.  Andy wants to get a divorce now (we are currently legally separated).  He has been saying for some time that he no longer wants me to help him monetarily — not with health insurance, not with car insurance, not with anything — going so far as to tell me (in a moment of hyperbole) that he’d never talk to me again if I paid for any of his expenses.  Maybe the divorce will give him closure; maybe it will make him less angry at me so much of the time.  I don’t know.  But even a no-contest divorce through our mediator is more expensive than I guessed.

And I keep thinking I should make an appointment with Jonah’s psych doctor, talk to her about weaning him off the cocktail of meds which are supposed to mitigate the anxiety and aggression, then put him back on them one at a time to see what works and what doesn’t…but I’m not sure it’s the right thing to do and I’m not sure who can tell me or how damaging it might be for Boo to put him through that.  Plus I want his eye to heal first.  I don’t know what to do.

Andy took him to the eye doctor in Rhinebeck today.  When he called me tonight to give me the daily “Jonah report,” he told me the eye doc checked Boo’s vision in the left eye…and that now Jonah can’t see anything out of that eye at all.  My heart stopped. You mean all this has been for nothing?  The operation…the hell week afterward…the anguish and the aggressions and the all of the everything?

Evidently Jonah can’t see out of his left eye because it has hemorrhaged somewhat and there is still blood in it, blocking the retina, so the doc was not over-alarmed. But Andy says it will take a very long time for the blood to clear.  Does it mean Jonah will have to wear the eye shield for another week?  Another month?  Does it mean that when the blood clears, he will be able to see again?  We don’t know.

We don’t know what is going to happen and we don’t know how to visit with Jonah and we don’t fucking know.  Andy took Jonah for a while today and Jonah attacked him twice when they were having “quiet time” lying on Andy’s bed.  Other than that he was good, Andy told me.  Other than being attacked twice…

On Sunday M and I went to church, a non-denominational Protestant Christian church his co-worker goes to in Schodack.  It was the first time in decades I’d been to anything but a Catholic Church.  I suppose it should be easy for one raised Catholic to go from the seeped-in-ritual Mass to the virtually ritual-less service of this kind of place — at least easier than if it were reversed, and one had to try to unravel all the movements and prayers of the Catholics.  But the pastor spoke about the story of Abraham and how God told him to sacrifice his son.  I started to cry, of course, silently, drawing an immediate parallel to my own life, and I couldn’t stop the tears through the whole service.  I felt like an idiot, though M assured me afterward that it was a perfectly fine place to have tears rolling down your face.  I suppose I should be glad of that.  (Of course, in the Bible passage, as soon as Abraham agreed to sacrifice his son, God changed His mind and let the child live).

My little Boo, the sacrificial lamb.

We gave him up all right, but for what?  He’s been at his residential school for nearly two years, and though he has learned a lot, his aggressions haven’t gone away at all.  If the medicine is mitigating the aggressions, I shudder to think of what he would be like without them.  He is now older, stronger.  Are they simply managing him?  No.  He is learning and he does have good days of joy and peace.  But still he moves lightning-quick to strike and slap and pull hair, to hit, to kick, to hurt whomever is in range, even when he has just been given something he wants – even when he seems perfectly happy just microseconds prior to the aggression.  It’s as if Andy and I have permanent PTSD.  Or just TSD, because there isn’t any Post.  It’s ongoing.  I am ashamed to say it but I am grateful I do not have to take care of my son; I am grateful he is not in my home.

And now I will admit the most shameful thing of all:  sometimes, on the worst days, I become ignorantly envious of parents whose children sicken and die, and for this simple reason: because there is an end to it. 

No, of course I don’t want Jonah to die.  And I am not really envious of parents whose children die.  I know it would be horrible, beyond my imagination or comprehension.  It’s the end to it that I want. 

I just want an end to it. 

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