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Posts Tagged ‘residential placement’

In five days, on August 16, it will be the fifth anniversary of Jonah’s departure from home.

That’s more than a third of his innocent little life, and I sit here and type this through a stormy mess of emotions.

For some reason that one comment from the other day echoes in my head, over and over.   I can’t be bothered to parent.   I can’t be bothered to parent.   I can say “haters gonna hate” and try to brush it off, but the troll’s words have gotten inside me, wringing my heart, making it pound pound pound in my throat.  I kicked my son out.  I can’t be bothered to parent.  The words are not true and I want to stop hearing them but I don’t know how.  I heavily edited my “about” page to more clearly define why we had to send Jonah away, and even as I wrote the new copy I asked myself why I felt the need to justify our actions.

There are many answers to that but the most important answer, I suppose, is to educate.  The idea of residential care for individuals with autism is repellent, and I get that.  It’s important to know the why of it all, lest they judge not only me but all others in my situation, lest they misunderstand the reality of residential care in the 21st century.  Jonah’s school is not an “institution” – it’s a huge, gated, beautiful campus with individual houses and a school building.  The caregivers and teachers are phenomenal; they are Jonah’s best friends and companions, advocates and educators.  These aren’t justifications.  I do not need to justify what was not our choice.  We didn’t choose this.

Parents who place a child in residential care aren’t throwing their kid away, I assure you.  Because guess what?  Even if there were parents who wanted to “throw a child away,” the openings at these places are so valuable there wouldn’t be availability unless the child’s home school district deemed it absolutely necessary.  The school district pays for it (in New York State, anyway) and moneycoin is, of course, a huge determining factor.

I just wish I wasn’t so hypersensitive. Or maybe it’s not that.  Maybe I’ve slowly developed an invisible shield in order to move forward through life and when trolls knock, the shield is shaken, endangered, a hole poked through, the feelings rushing in, too many too much too painful too real.   All the feelings I usually suppress.  Ignore.  Internalize – until I am, as I’ve described before, bow-string tight with bones gone brittle, shoulders hitched up, breath after breath after breath held…suspended…each new breath a hesitant, unwilling step into more future.

For five years I have lived this bizarre life of mother-not-mothering.  For five years I’ve spent most of my energy running away from how it feels never to watch Jonah sleep…how it feels never to be there when he awakens….never to know what it is to raise him.  It’s the most helpless kind of helpless.  I suppose my mind has created its own protective pathway to enable me to live this way.  I imagine my heart’s new primary purpose is to forget all the days we spent together, and what it was to shape his Self, and how I fell in love with his role in my life as my Boo.

I don’t know anyone who is in my situation, with their only child living in a residential school for autism, except Andy.  But we don’t talk about it, and so that most helpless kind of helpless is a lonely kind as well.  From a singular perspective I attempt to tell our tale, and like as not I speak a language so foreign it’s lost, dismissed, or plain old misunderstood by some people.

And just like that I’m off to find the Animals song, link to it, and look up the lyrics.  Is it schizophrenic thinking to feel how those lyrics apply to me?  To type the words out in paragraph form because I identify?

I only know this diversion serves as vacation from all the other crap I’m always on about.

“Sometimes I feel a little mad.  But don’t you know that no one alive can always be an angel?  When things go wrong I seem to be bad, but I’m just a soul whose intentions are good.  Sometimes I’m so carefree, with a joy that’s hard to hide, and sometimes it seems that all I have to do is worry, then you’re bound to see my other side.  But I’m just a soul whose intentions are good; oh Lord, please don’t let me be misunderstood.”

Why care if I’m misunderstood?  Why react so viscerally to the critic or the cruel?

Either way, I’ve been hibernating and closed off.  My mental energy is always working to stave off thinking things I don’t want to think.  I sleep and I sleep.  One day this week I came home from work and took a nap, only waking to eat before going to bed for the night.  I’m making up for those sleepless nights with Boo, back when I was a mothering-mother.

Jonah’s school called me today to join a conference call and approve a proposed increase in his dosage of Clozaril, since the drug is helping lessen the frequency of his aggressions but it’s not taking them away.  We talked about how he’s refusing to go to school (though they always get him there by 10am or so) and then I asked if anyone there had seen Jonah today.  One person had, in the classroom, and she described how he was making a great racket of noise.  He also had a behavior management at his residence this morning.  They didn’t disclose the severity of the behavior and I didn’t ask.

It’s difficult to remember a time when I did not embrace ignorance.

I guess maybe, well, five years ago.

This is another one of those blog entries I nearly almost always type with fingers slamming-hammer-quick on the keys, stream of conscious unthinking – and then delete.  But I think I’ll publish this one.

If I go away for another while, however long, I wanted to tell why.

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How’s it going to be
When there’s no one there to talk to
Between you and me?

~ Third Eye Blind

I haven’t been writing much, except for work.  I am a hermit in my house like a winter bear.  It feels cozy-nice.  Plus I do truly good things for my job, and from home where it is easy to hermitize. However, I realize I need to move my limbs and go out and be somewhat social.  Yesterday I went for a mile walk, which is only 20% of what my pedometer app recommends.  But I figure a mile in my own moccasins is better than no miles on the couch.

I shall emerge groundhog-esque tomorrow for a doctor appointment, to have breakfast with my dad, and to visit my Uncle J in the hospital.  Saturday there is always Boo, which forces me out and away from home to see my sweet son.  Last week I played him Meanwhile, Rick James (Jonah calls it “the clapping song” and can do all that clapping in time) — Boo and I danced all around the living room, of course mostly in circles, singing and laughing…I hadn’t played it for him in years but something clicked in his head, and he remembered and requested it.  He requests teachers and babysitters from years ago, too.

He remembers things, my Boo.

He is also clever, and has a fantastic invented communication system to navigate the maze around which his verbal skills cannot puzzle out just yet.  Let’s say he wants a car ride, but he also wants to make sure that it’s not the car ride back to his residence.  What he will say to communicate this is “Wanna take a bath?” which makes no sense to anyone but Andy, me, and my mother.  What he is really saying is can we go for a car ride now and then come back here again after that so I can take a bath or at least not have to go back to the residence just yet?

Andy decoded all this.  I take no credit.

Not an hour after the happy dancing clapping song,  Jonah is screaming in Andy’s bedroom on the Big Blue Bed because he’d hit Andy and is trying his damnedest to attack him.  Hard.  I stay close, ready to help, watching as Jonah’s kicks hit Andy’s kidneys, his face, his torso, wanting to jump in and help but Andy told me not to, he always tells me not to, my mother in the kitchen nervous nervous nervous all the happy dancing energy lost in this new development.

And then it is over, and Boo is requesting Cranberry Guster? (What he calls their Easy Wonderful CD) because I am trying to re-expand his musical choices beyond Prince (sorry, Andy).  Boo remembers the Guster days of course and loved when we put it on.  My mother would like him to listen to The Sound of Music but I’ll settle for Cake or Guster or even Snoop Dog (or it is Wolf now)?  Less Lady Gaga and more They Might Be Giants.  I just want him to listen to and love lots of different music.

These days I feel so much like half a mother, and it’s too hard to explain to people who try to reassure me I am of course a whole mother and blah blah blah.   Facebook doesn’t help.  Everyone has stories, accomplishments, outings to share.  There’s too much silence in my house.  I turn on TV just to hear the noise (instead of embracing the silence as I should) and I feel bad for those who live alone.  I have two pets with me during the day and a partner at night but I do not have my child and I know now he will likely never live with me again.

For a while I think I assumed his placement would be temporary, that he would get better like in a hospital and then come home.  No.  That’s not right.  I don’t think I assumed anything, actually.  I was in a place of desperation and there was no extra time for anything but panic and aggression, emergency and breakdown.

I spoke with his case worker at school and deteriorated into tears.  I am Queen of the Endless Questions.  My prayers are please and thank you.  And it’s so hard for me to talk about Jonah.  Thank God I write.

Has this post deteriorated into rambling?  Ramble on

I do want to communicate with someone who also has placed an only child in residential care.   I can talk to Andy but we almost never talk about that.  I feel like such a tiny demographic.

“I am an island…..”     ~ Paul Simon

No, that won’t work.  In that song an island never cries.

Here’s a picture or two instead of a stereotypical quote:

nothing beats a little daddy love

nothing beats a little daddy love

Jonah invented a new suck-your-thumb-while-giving-a-gang-signal, supercool move

Jonah invented a new suck-your-thumb-while-giving-a-gang-signal

Love you, sweetheart.

Mama see you soon.

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So I allowed myself a break from telling the story of Jonah and our ups and downs…the roller coaster twisting racing in turns of joy and aggression, stopping at the station for deep breaths of still, of peace, but the safety bar won’t raise – it never lets us out – and then after a day a week a month the announcement to keep hands and feet inside the vehicle, and we’re off again and climbing that hill from which comes the fall the fright the feelings, stop the ride I want to get off please.

It’s the same shit I always spout and am tired of spouting.  How about this year I turn my metaphor around, into a river…not round and round but journeying somewhere, rocks and rapids notwithstanding?  Not so much dizziness but the radical acceptance of a fluid situation.  Change not as an event but as a constancy.  Journeying not with a destination but as the destination.

Yeah, like I’m gonna turn all Zen.  Well I can give it a shot, anyway.

First the third wake:  my friend K’s father passed away from the lung cancer that killed him on Friday the 13th of December.  Her bravery and strength, the way she carries this burden like a strong woman of faith with a will of iron and a heart of truth and beauty…she is the only child, like me.  Now she slams the door shut on 2013 and perhaps is still in shock that her father will not be there in this new year.  How strange is grief, and the different ways it works its necessary, surgical-like job inside each one of us when we mourn.  I have tried to be a good friend but still feel helpless.  Through it all she managed to make batches of Christmas cookies and gift them to me along with a Willie Wonka shirt for Jonah with Oompa Loompas on it.  I am proud to call her one of my closest friends.

My real-life-friends have whittled down to a few, but they are gems who have stuck with me no matter what – without judgement or competitive bullshit or cattiness.  That feels right.   In 2013 I have given and forgiven; I have risen to the occasion and I have fallen apart.  I’ve slipped and stayed lying on the ground for a while.  I’ve crawled and danced and risked everything and lost my shit it felt so good to smash that glass all for a better way to get through this life, for better things to do, for more important goals, more impactful work.   I’ve soared higher than ever on the warmest winds of change and beauty.  I’ve cried my eyes out both in sorrow and laughter.  I’ve lived. 

During the month of December I also allowed myself to feel the angry, awful pull in my heart every time I saw kids waiting for Santa, counting days, getting excited, dressed for photos, new babies joining bigger siblings by the fireside as mom bakes cookies, the whole Christmas scene and winter family fun I envy.

Then I take the time to realize half of what we see is illusion anyway, and the other half probably would envy my ability to give my boy bubbles, tangle toys, and a Willie Wonka & The Chocolate Factory DVD for Christmas while they are faced with kids who want iPads and gaming systems – the right sneakers and the cool outfits, hundreds and maybe thousands of dollars of presents.  Of course this is all conjecture and generalization, but you get the idea.

There are no right outfits for Jonah, unless you count the fact that comfort is king.  In fact, Andy drove Jonah up to my mother and me on Christmas in jammie bottoms and an unmatched shirt, because that’s what Boo wanted to wear.

Jonah Boo, playing on my mom's floor with a flashing turnabout radio-controlled car

Jonah Boo, playing for a few minutes on my mom’s floor with a flashing turnabout radio-controlled car

My mother had cooked a ham & pre-prepared it all into containers for us and, just like Thanksgiving, we spent Christmas on car ride seeking a train that once again refused to come because it was a holiday.

I caught the little bugger for a Christmas pic with mama

I caught the little bugger for a Christmas pic with his mama

My mama and me

And one of MY mama and me

When Jonah loves a particular scene in a movie or show, he'll run up to the TV with a happy screech

When Jonah loves a scene on TV or in a movie he will run to the screen with a happy screech.  Here’s another example, taken a few days later:

Still Willie Wonka on the screen

Still Willie Wonka on the screen

And the coolest pic of all, methinks, because Jonah is watching on one side and a kid IN the movie is watching on another:

I love this pic

Here comes the falling somersault

So I may not have a lot of details to share, some because I chose to forget and some because I am too lazy to type out a month’s worth of details….but there are many moments of Jonah being his repititious-yet-never-boring self.

I have to give a shout-out to Jonah’s dad, Andy, who as usual has come through in his amazing father way.  Since he lives so close to Jonah he sees him more than I do — but that doesn’t mean he has to pick him up for visits as much as he does, or withstand the aggressions, the emotional strain, and the exhaustion which nearly almost follows a visit — he has picked Jonah up for a visit whenever he can, whenever he is not working.  Always he is patient and takes Jonah on all the car rides our boy so loves, playing Prince CDs for Jonah (which is kind of like me playing Guster CDs for him, because Andy loves Prince like I love Guster).

Always he is a wonderful father.  The best parent with the strongest constitution and all the love in the world for his precious son, his only child.

Here is Jonah crying because we forgot to bring his favorite Prince CD on the car ride.  Luckily we were not far away and were able to return to the apartment to retrieve the longed-for CD.

"Diamonds and Pearls?!"

“Diamonds and Pearls?!”

This is not a boy with autism having an aggression.  This is a kid who wants his Prince and ain’t afraid to cry about it.

Oh the humanity

Oh the humanity

Poor Boo.  The aggressions I thought might be gone for good have returned.  I have no idea how many times the pendulum has to swing before I get it through my head:  pendulums swing – it’s what they do.  Perhaps I can incorporate this into my head as well this year. Or, better yet, find a way to blow up the pendulum.  Smash it all to hell.

I’m gonna learn play my new acoustic guitar (thank you Richie, who came to visit from Japan, for teaching me the 1-4-5 progression, which means I can play about 10,000 songs very poorly so far)…and maybe try a song or two for Jonah…

yes I asked for this specific one because I am a DUMMY with an acoustic guitar

Yes I asked for this specific one because I am a DUMMY with an acoustic guitar

So here is a 2013 pictorial to usher in what I pray will be a better year – for everyone!

The Year of The Eye: January 2013

The Year of The Eye:
January 2013

March:  more eye doctor

March: more eye doctor

April:  thumb-sucking contemplative Boo

April: thumb-sucking contemplative Boo

May:  waking up from the eye operation to try & save the sight in his left eye

May: waking up from the eye operation to try & save the sight in his left eye

June: The endless wearing of the eye shield

June: The endless wearing of the eye shield

July:  a smile through the eye shield

July: a smile through the eye shield

More daddy-love in August

More daddy-love in August

No more eye shield.  The operation didn't save his sight.  Thank God for Boo's healthy right eye!

September:  Happy Boo, rocking back and forth to a tune in the car. The operation didn’t save his left eye’s sight, though. Thank God for Boo’s healthy right eye!

October:  visit to the juvenile arthritis doc - everything looks great!

October: visit to the juvenile arthritis doc – everything looks great!

November:  Boo asks if the nonexistent "Thanksgiving train" is coming, and points to where he thinks it'll come from.

November: Boo asks if the nonexistent “Thanksgiving train” is coming & points to where he thinks it’ll come from.  He looks hopeful.  Sorry Boo!

Rockin' his Almanzo Wilder Homestead shirt & eating some chips and dip...

December: Rockin’ his Almanzo Wilder Homestead shirt & eating some chips and dip…

Boo’s ready for 2014.  We’re three days in already and “Snowstorm Hercules” (I guess they’re naming all the snowstorms now) has dropped maybe 7 or 8 inches here in Albany.  Hercules my ass.  They should have named it Deep Freeze — it’s about negative 4 outside and even opening a curtain feels like I’m subjecting myself to snow-blindness from all the white-bright.

P.S.  My biological family does not want anything to do with me.  Surprise surprise.  It was a bee sting, really – for a short while it hurt, burned, stank of rejection and things not right or fair.  I cried.  Then I got up off my ass and put some calamine lotion on the whole mess and flicked the bee off my arm.  That bee died stinging me, just as this biological-relative bullshit is dead to me now.  I am blood-related to Boo, and that’s all I need.  That, and the family I already have and love – including those outside my adoptive family whom I have chosen to adopt as sisters or brothers or cousins, DNA be damned.

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