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Some people I never see on my blog commented on that last entry, which was weird.  Then I talked to my friend K later in the day, and she told me it’s all posted over on Facebook.  I haven’t had an account there since December 31, 2015, so how is that possible?  I went over to check it out and sure enough, my page was re-activated, even though I didn’t do it.  I thought at first it was an auto-post because I’d published a new blog entry, but none of my other blog posts made it over there.

Did the ghost of FB re-open my account?  Was my account hacked?  At any rate, I logged in and DE-activated it again.

It probably looks like I went over there to throw a big bitch-fest and leave.  So be it. Whatever.  If anyone knows what might have happened, please let me know so it won’t happen again.  I don’t see myself coming back.

Thanks to everyone who commented on my last post, and for everyone who cares.   Jonah is moving to a new residence, maybe today.  They have been slowly acclimating him to the new place and I hope he does okay.  One of his favorite peeps at Anderson is the residence manager.

Fingers crossed.

JUST as I typed that, the new CSE Chairperson at the Albany City School District called me to say Kennedy Krieger is not an option because they are no longer approved by the state, even as an emergency inpatient on a short-term basis.  Then she starts rattling off a list of other schools – most of which I haven’t even heard of – to which referrals have been sent, she says, back in August.  She is going to e-mail me the details and other people I can contact, but she’s so new she has no idea why we weren’t notified of these referrals.  It was difficult to stay calm on the phone.  I’m angry that Jonah isn’t even able to be considered for KKI and we definitely don’t want him sent to another school that will be a lateral move, at best.

Can we just pay for KK ourselves?  I have no idea, or how much it would cost, and I’d better get back on the phone to find out as much as I can.

What the hell?!

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For a while I was a mother, the way other mothers are.

For nine and a half years.  I remember it.

I remember watching Jonah sleep, changing his diapers, helping him get ready for school, taking him to the park and home for dinner.  There were birthday parties here with family gatherings in our finished basement.  We played in the baby pool and Andy took us sledding.   I also remember how hard it was, how fucking frightening and relentlessly backbreaking our days became toward the end – and I sit here grateful for the stillness in which to type these words, I do.

But at the same time I feel a vicious, raging kind of helpless. When I get home from visiting my son, I’m angry.  I want to scream and moan and rave.  I slam my vacuum around the house, cleaning things just to feel some control over my environment.

There are things to say but I don’t want to say them, so I stay off the blog.  I don’t have any funny or engaging stories.   And when I read over these blog entries I make myself sick with all the whining and the wretchedness.  I wish I had better news, some anecdote to share.  I only have what I have, and I can only feel how it feels.

Things were looking pretty good on October 1 – they made Jonah Student of the Month, even, and his name and photo were on display in the front of the school.  I took a picture of the display case when I visited on Open House day, but I can’t find it now.  The school sent a certificate and a letter about how well he had been doing.  It was all really encouraging and cool.

They forgot to knock on wood when they said it, though, because it’s been all downhill from there.

Our visits with Jonah are worse.  I used to complain – recently, even – when he’d come running into Andy’s apartment and then just stand in front of the refrigerator, asking for whatever he felt like eating and scarfing it down before next asking for car ride.  Now car ride is all there is, and by that I mean we pick Jonah up at his residence and he says “no apahmen” and “no lunch” – and while my mom waits behind with whatever food she’s brought us for lunch, we drive the same loop over and over.

The best we can do to facilitate some sort of visit with my mother is to stop back at the apartment after every loop and try to bribe Boo to come inside.  Not bath nor Burger King is temptation enough – and forcing him would mean a huge aggression episode the likes of which none of us are willing to cause or endure.  And so we pause in the driveway and my mother comes out.  Sometimes Jonah will put the window down and we will prompt him to wave or say “Hi, Grandma” or parrot back whatever script we want my mother to hear.  Wish she could hear.  Thank you, grandma.  Thank you for ritually packing us all fresh sandwiches, chips and drinks every week.  Thank you for picking up mama to drive an hour and a half each way to sit in an empty apartment, visiting with me through a car window for a minute or two, because you love me so much you’ll do whatever you have to just to see me, hoping I’ll be happy or will want a kiss.

On Thanksgiving, Andy drove Jonah up to my mom’s house, just like he’s done every year for the past 6 Thanksgivings since Jonah’s been at Anderson.  Always Jonah loves grandma’s house.  He jumps out of the car and runs in, bursting through the door to pace around and survey his surroundings.

But not this year.  Even after that long car ride up here, he wouldn’t get out of the car.  My father arrived just as I was getting into Andy’s car to take Jonah for a ride to see train.  We called out the window that we’d be back, and my dad went inside to wait for us.  Jonah smiled, a big smile, when two trains came by, once we got to the Voorheesville tracks – but when we drove back to the house, Jonah still refused to come inside.  No grandma.  More car ride.  Awkwardly we all stood in the driveway, my father, my mother, and me – speaking to Jonah in turns and making sure Andy had all his Thanksgiving food my mother had prepared in Tupperware containers.

Andy and Jonah drove away, and my parents and I went back inside.  My mother and father tried valiantly to keep some conversation and normalcy in the day,  but I just sat there silent and crying, the tears coming against my will, hot and unchecked.  After just a short while I apologized and told them I couldn’t do it, I had to leave.  I drove home to eat my own portion of yummy Thanksgiving food and then, exhausted and sad, crawled into bed.

My mom and I didn’t drive down to see Boo again until today.  Again, Jonah just wanted car ride – only this time he got really sad and started crying as well – huge, gasping sobs.  I turned in my seat, gave him a clean blue t-shirt rag for his face, and held his hand in mine.  He didn’t resist.  He felt along the length of my hand with both of his, grasping my fingers, crying in earnest.

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I asked him to tell me what was wrong.  I asked him several times, in all different ways, hoping he’d offer a clue.  Was he in pain?  He never tells us when he is hurting, but he’d just had yet another laser operation a few days ago, to alleviate the pressure in his left eye.  It shouldn’t be hurting him today.  And he seemed fine when he first came out of his residence on the campus.

And so he wept, and I just held his hand.  Andy played some of his favorite music, and eventually Jonah calmed down enough to gently push my hand away and request Tom Pah-dee (Tom Petty), Public Enemy, and Prince, in that order.

After three trips and visits back to the apartment where grandma came out and said hello, I finally got out of the car, kissed Boo, and waved goodbye.  My mom and I drove home, mostly in silence, feeling how completely surreal can fill a car like heavy smoke.

What more can be taken away? Even as I ask myself the question I hear the answer. What if, one day, Jonah refuses to leave his residence for our visit?  What then?  They don’t allow visiting in the houses.  There’s a visitor’s center on campus with mock apartment set-ups that seem really nice – but Jonah’s never wanted to go there.  We tried it once and it was a disaster.  And anyway, even when he was going to the park or down to the dock, he still wanted his car ride and to get off campus first.  Can we visit him on one of the campus playgrounds?

Tomorrow I talk to the school district about the possibility of Jonah attending the Kennedy Krieger Institute for their short-term impatient program.  And I probably will call Jonah’s caseworker, too, about how home visits have been deteriorating.

Maybe they will have some ideas.  Me, I’m fresh out.  And done writing about it, for now.  If I do not post again before Christmas, I wish you all happy and blessed holidays, filled with joy and hope.

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On Tuesday, Jonah was taken back to the hospital, this time not only because of severe behaviors but also because he seemed to be struggling to poop and he looked pale and acted really lethargic.  When they called me, I decided to drive down.  I left work around 11am and when I got to the hospital in Poughkeepsie, Jonah was asleep under the covers with a pillow over his head.  All I could see of him were his sneakers, still on his feet, at the bottom of the bed.  He has three teachers in his classroom of 5, and one of them was there with him.

They had taken an x-ray of Jonah’s tummy and found impacted poop, so they woke him up and we coaxed him into drinking a seltzer-like laxative.  He was all sweaty from lying in his clothing under the covers and he looked at me in amazement.  “Car ride,” he croaked, more a statement than a question.  His teacher was awesome with him, helping to keep him calm and telling me how loved Jonah was at Anderson.  “I’m not just telling you that because you’re his mother,” he assured me.  Poor Boo was bored and confused, but after another hour or so he finally pooped and they let him go back to the residence.  I drove home in a daze.  Before I reached the house my car started to shake.  I couldn’t get the hood open to look at it, so I dropped it off at the shop.  Turns out they had to break it open to get in the car.  It was some crappy icing on my shitty cake.

Yesterday his main classroom teacher e-mailed me and was so kind.  She asked what she could do to help and if I had any questions, and she said Jonah had a good morning (and included two pictures to show me).  I am appreciative.  I am grateful.  I love that Jonah has teachers, specialists, therapists, direct care providers, and other workers who watch over him with such compassion and caring.  Were it not for all of them I could not do this at all.

Got the car back last night, and this morning Anderson held a meeting about Jonah with his behavioral specialist, his psych doctor, teachers, and nurse.  They called me to join the meeting and told me he was on his way back to the hospital for another psych evaluation after 12+ severe aggression incidents this morning.  And so this is hospital visit #3 since Monday, and it’s beginning to feel an awful lot like this time last year.

This doctor is a new one, and she asked me if I thought Jonah might be bi-polar.  “I tend to think there’s a co-morbidity with something,” I answered, “whether it be mental illness or seizure activity.  Something is going on.  There is never an antecedent.  You’ve charted every possible thing from bowel movements to times he eats and sleeps, for five years straight. There is no discernible pattern. ”

Her answer, as it has been before, is to raise his level of medication (Clozaril) while adding a prn of Klonopin  (as needed).  She suggested the possibility of adding Lithium, but doesn’t want to do that right away.

I have read (and I really appreciate) all your comments and well wishes.  I will try to come back to FB and re-join the Extreme Parents group so I can gather info and exchange ideas with other parents who’ve had experience with Kennedy Krieger and severe autism with aggression.  Andy and I are working through disagreements about what to do here.  Sending Jonah to KK would be a huge thing.  Just the thought of transporting him there is a seemingly insurmountable obstacle.  We want to make sure we are doing what is best for Jonah, both in the short and the long run.

I don’t want to go through what we did last year again. But it looks like that’s what’s fucking happening and once again we find ourselves in the frustrating position of having exhausted all ideas and resources.

When I reach out to the “experts” I find and they start asking me things like “What are the specific behaviors and when do they most likely occur?” I want to bang my head against the wall – not because I do not appreciate the attempt to help us but because people never get how far beyond the beyond we are at this point – how we are breaking new ground with this child and his behavioral (and physical) health.

How we’ve already tried that.  And yes, we’ve already looked at that.  And then there is silence, because nobody can chart us a path through this kind of journey, once they realize we truly are in a territory they have neither seen nor can understand.

We have to do it ourselves, and it’s scaring me to death.

I have been going to work and coming home and going to bed.  It’s like I’m a device on low battery that you’ve got to use as little as possible to preserve its life.  I am angry and I feel helpless.  I’m shaky and sad and frustrated and pissy.  I’ve been depressed lately anyway – I usually am this time of year – and I’ve thought that Jonah’s behavioral crises at the same time last year and this year might be something seasonal.  But mostly I’m staving off panic, a deep and unwavering fear.  There is no afraid of.  There is only the being afraid and the trying not to be afraid.

A waking life of fighting the fear, and a grateful yielding to sleep.

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