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Posts Tagged ‘trolls’

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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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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