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Archive for the ‘The Anderson School for Autism’ 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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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 –

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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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IMPORTANT NOTE TO PEOPLE WHO KNOW MY MOTHER:  PLEASE do not call her.  E-mail or call me instead, if you want more information or are concerned about any of us.  Thank you. 

I found this book after reaching a new level of desperation about Jonah, as he has become steadily more and more aggressive over the past several months.   I suppose that’s why I haven’t written much — there’s not a whole lot of good to share, and I needed time to process what’s going on.  The theories regarding his violent aggressions are few and help us none at all ~ puberty hormones, changes in his classroom at the Anderson Center for Autism, God knows what.  As usual there seems to be no reason for the outbursts; no antecedents to chart, no behaviors to indicate the storm is coming.

When we visit with him, we can sometimes see that he is acting what we call “squirrely” – a certain look in his eye or a ramping up of his OCD before an attack.  And on other occasions, even when he exhibits these things, he’s calm. Fine.  Then, like a lightning strike, he’s bolting, upon one of us – a wild, tameless version of a boy.  No empathy, no holds barred, fighting as if to maim an enemy.

A few weeks ago it was me he went for, from behind, grabbing hair at the crown of my head with one hand and my long ponytail in the other, yanking with all his might.  I pulled his hands down onto the top of my head and cried out for Andy, who was outside and came running.  Then two fingernails raked across one cheek, drawing blood.  I fell to my knees, bending my head back into his grasp, begging him to let go.  A sudden bite felt like he’d torn a chunk out of my back through my shirt, just below my shoulder.  Finally Andy got him face down on the floor and I attempted to hold on Jonah’s legs, my butt on his, my hands trying to hold his ankles to the ground, flailing kicks striking me hard, Andy getting head-butted and scratched, Jonah screaming.

The scratches and bite marks are fading as I type this.  I lost a few hunks of hair.  I am okay.  Jonah’s father gets the worst of it and carries marks and scars, both visibly and invisibly, most of the time.

This scenario is a good example of what he does at the Anderson Center when in this state of fury.  There they are required to let us know when there is a “2-person take-down” version of Jonah’s attacks.  I get an e-mail telling me dates and times. I belong to a Facebook group for parents of kids who are “severely autistic” and a lot of them told me about success with Thorazine – something I’d always thought would make you just one step above comatose – a drug we’d never even considered.  After a little research, I learned its effectiveness at controlling aggressions.  Because its half-life is so short, often it is administered a few times a day.  I suggested we try it, and called the school  to say so.  They’d just had a team meeting about Jonah and wanted our permission to try a slightly higher dose of Prozac first.  Andy and I reluctantly agreed.

On October 29th, the school called and told Andy that they were having a hard time controlling him at all.  Andy then called me, no doubt euphemizing whatever they’d said, and told me their new plan:  During these severe aggression occasions, they will call 911 for an ambulance to take Jonah to the Mid-Hudson Regional Hospital in Poughkeepsie.  I knew they were not being hyperbolic when they stated he was exhibiting severe aggression, and yet my heart sank.  Just minutes after this notification, the plan was implemented for the first time.  They called 911. An ambulance came. They restrained him, brought him to the ER.  After a while they let him out of the restraints only to find him as combative as before.  They gave him additional Risperdol.  Atavan.  Clonodine.  Then Thorazine.  After hours of this, poor Boo finally fell asleep.  Andy had left work early to be with him, and a super kind care worker from Jonah’s residence also stayed at the hospital.  By the time they discharged him, he’d spent nearly 12 hours in the ER.  Too many meds.  Too much too much.  There has to be a better solution.

Andy asked me not to drive down.  I’m here, he said. I’ve got this.  So, feeling both reluctance and relief, I didn’t go.  I was too much of a wreck to drive anyway; I’d fallen apart.  Luckily I was on my way to sit with 90-yer-old G, whom I visit at her daughter’s house several times a week.  The daughter doesn’t want G to be alone; I’m there to give her peace of mind so she can run errands or go out with friends.  An extra benefit for me is that G is like having a grandmother again – she is loving and kind, optimistic and fun.  We’re great friends now – I wept and sobbed that day while she consoled me in the quiet of the house.

I suppose I could be mad at God, but I’m mostly just so tired of having hope and then losing it again, over and over, like a carousel of emotions — inanimate horses cycling up & down ceaselessly.  I’m tired to my bones of despairing, of feeling helpless to save my son from whatever it is that’s making him behave this way.  If there were a person to blame, I’d hunt him down and kill him.  There are no answers, and the questions & medications keep piling up.

The very next day, October 30 and with our permission, they started Jonah on a 25mg dose/day of Thorazine.  At the same time I sprung into frantic action, reaching out to my fellow autism parents, calling our local chapter of the Autism Society of America, researching doctors and therapies and anything I could get my hands on to help my son.  On Halloween afternoon, while countless other parents dressed up their children and snapped happy photos, I sat at my computer and bookmarked anything I could find.

I found the book pictured at the beginning of this post and immediately downloaded it to my phone to read.

Hope for the Violently Aggressive Child by Dr. Ralph Ankenman

This blogger’s post has such a good summary that I will not repeat my own, only to say Dr. Ankenman’s theory seems sound and well researched.  His theory that violently aggressive children suffer from sudden adrenaline spikes usually encountered only in life-threatening situations would explain Jonah’s super-human strength as well as his sudden departure from himSelf to something wild, uncontrollable, and attacking.   It would seem that, of the two categories Dr. Ankenman talks about (Alpha and Beta), Jonah would be an Alpha:

Alpha Type [fight/no remorse]

Alpha adrenaline is tied to the “fight” response — the predator rage of, say, a lion attacking its prey. Children whose wild-eyed violence is triggered by alpha adrenaline seldom show any remorse.  Sometimes, too, the rush of alpha adrenaline erases any memory of their blinding rage.

Then I vetted him online, finding that he is no quack, he’s 81 years old, has been a doctor for 50+ years, and is indeed recommended highly by those who have seen him.  So I called his office in Ohio, (937-766-5683) hoping the receptionist would perhaps take down my information and maybe he’d call me back, even though Jonah wasn’t a patient.

He answered the phone himself (a huge shock to me) and we talked for about 20 minutes.  He wanted to speak to the social worker or doctor at Anderson to determine whether Jonah would be a good candidate for off-label adrenaline blocking therapy.  He said that sometimes simply lowering a child’s blood pressure and/or heart rate could mitigate the aggressions.  And he patiently listened to my story.  He was careful to caution that if Jonah did not have a high heart rate or blood pressure, it could be dangerous to lower it – hence the importance of researching both his resting heart rate/blood pressure and that taken during an aggression.  I thanked him for his kindness and felt hope again for the first time since researching.

Though I have signed a release for the folks at Anderson to speak to Dr. Ankenman, they haven’t met yet to do so, and it doesn’t seem Jonah’s got high blood pressure, nor is his heart rate tachycardic.  I’m not sure what this means in terms of whether or not Jonah’s aggressions could be treated with adrenaline therapy — perhaps his heart rate and blood pressure have been changed by his other medications, thus masking symptoms which would indicate an adrenaline rush.  I don’t know, but I’m still going to investigate.

I’m also finding a lot out there about natural remedies and possible causes, which of course I am on board with — the more innocuous the better.  I hate doing the dance of drugs with Jonah, trying one thing and then the next.  Andy and I never medicated Jonah at all until he was 8 and we absolutely had to – but I have learned never to hold judgement on others for whatever they have done to help their children.  But during my research I found, for example, this article and this video, both of which gave me some hope.

We did have a good visit on November 1st, on day 4 of the very low dose of Thorazine; he was gentle and calm but alert as well. He said two new phrases (“turn music down please” & “mama and daddy”) plus he made many different choices which broke from his routine.  Here he is following daddy’s instructions for what numbers to press on the microwave.

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Since then, though, Jonah has continued to aggress and has been back to the hospital.  His dosage of Thorazine has been raised to 25mg 3 times a day.  My instinct is to wean him off Prozac and Tenex and increase the Thorazine (from what I understand, most patients take 250mg/day). But I need to do more research, talk to other doctors.  Fellow parents.  More people.  Informed pharmacists.

If you are reading this and have any information that could help us, please let me know; I am grateful for any helpful input.  And if you hear your own child in Jonah’s story, please reach out to me so we can share ideas.

I know I am not alone – and neither are you.

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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.

3 of us

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?

happy couple locks of love

“They love each other…”

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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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On Tuesday morning, I set out with something like hope to meet Jonah and the two caregivers who’d driven him up for his glaucoma doctor appointment.  Jonah hadn’t seen one of the caregivers, J, in a long time.  J and Jonah have a special bond, and I’m sure Jonah was thrilled when he first saw him.  I love watching them together: a big brother and his little pal.

Jonah was so good while we waited in the hall.  He amused himself, turning circles, humming, making random noises, occasionally approaching J or P or me to touch us lightly or lean in for a hug.   Of course I’d come prepared with bubbles, octopus, peanut butter crackers, strawberry seltzer, and peppermint tic-tacs.  He was as quiet as an NT kid.  Probably quieter, for a few minutes anyway.

He even sat down nicely in the waiting room chair (for a few minutes)   :-)

He even sat down nicely in the waiting room chair for a while

…shortly thereafter deciding to chillax into “punk ass” pose:

I love the punk-ass pose...almost always accompanied by the thumb-suck, making it even funnier

I love the punk-ass pose…almost always accompanied by the thumb-suck, making it even funnier

Jonah was great for the eye test too, but the glaucoma doctor seemed to underestimate and overestimate my son’s cognitive abilities.  What I mean by that is:

Doc wants to assess Jonah’s left eye only so he covers the right eye and puts the Big-Ass-E up on the screen.  Boo probably can’t see a thing but he’s also no dummy.  He’s been to dozens of eye appointments, and he knows damn well the first letter they ask him to read is always E.  Sure enough, when the doc puts that giant E on the screen and asks Jonah what letter he sees, “E,” Jonah announces confidently.  I tell the doc that Jonah knows the first letter is always E.  So the doc shows him the second line:  A  L  O.

Not missing a beat, Jonah tells him “E F G.”  He has no idea, but has E F G is the standard answer he uses at such times.

The doc sighs and shuffles through some drawers; he finds a card with the letter E on it, and I wonder how this will help since we’ve already determined Jonah will answer “E” to just about anything asked of him.  Jonah watches as the doc holds the card up and then turns it to the right, so now it looks like a boxy M.

boxy m

“Jonah, which way is the E pointing?”   Jonah says nothing, so the doc’s next idea is to ask the same question using more difficult terminology.

“Jonah, which way are the E’s tines pointing – up, down, right, or left?’

E F G,” says Jonah.

“The tines,” the doc tries again.  He may ask well ask Jonah for the square root of 3,481*.

“I wish I had my alphabet cards,” I say.  This is a good glaucoma doctor, awards all over his wall, but he never seems to remember (or doesn’t understand) Boo — and by now he’s seen him in the office probably a dozen times.  Maybe it’s just that I’m too close to it all, and to Jonah — whose language, largely unspoken, I understand.

Finally, the doc holds up five fingers and asks Jonah how many.  When Jonah answers “two,” I think we all know there isn’t much sight in the left eye. 

The good news, though, is that the doc told us Jonah could have some of his sight restored after the blood cell clouding dissipates.  It just remains to be seen (no pun intended).  He was concerned, though, about a surprisingly low pressure read in the left eye.   He wanted Jonah to get an ultrasound at the other (retina) doc next door, right away.  He called to tell them we were coming — and we braced ourselves for the dire possibilities inherent in this plan.

But Jonah surprised us, happily amenable to “doctor number two.”

He actually sat patiently through two eye exams with two different doctors within 40 minutes of one another:

doctor number one

doctor number one
doctor number two

doctor number two

After the ultrasound, doctor number two said he liked what he saw of Jonah’s eye, and that his right eye looks just fine.

It was a wonderful day.  I suppose it’s a little strange that some of my best and happiest interactions with my son are at doctor appointments, but then both the good and bad can happen anywhere – so perhaps it isn’t strange at all.

Yesterday (in the ongoing heat and humidity that will surely mark this summer of 2013) my mom and I drove down to another wonderful day with Boo.

Good day, sir!

Good day, sir!

While Jonah took his beloved bath, we (meaning mostly me) recited his favorite scene near the tail-end of the 1971 film “Willy Wonka and the Chocolate Factory,” eliciting great smiles and giggling  from Boo.  GOOD DAY, SIR!   I love to hear him laugh.

There was only one incident during car ride to transfer station and I managed to capture it in photos from beginning to end.  No one was harmed during this incident, which was mighty nice.

Still relatively happy

Still relatively happy

We think he didn't like the volume of the song (probably not loud enough for his taste) or the commercial break, or his dislike of the song itself, though it remained a mystery why it made him so desperately upset and sad.

We think he didn’t like the volume of the song (probably not loud enough for his taste) or the commercial break, or his dislike of the song itself, though it remained a mystery why it made him so desperately upset and sad.

Andy's pulling over now.  Jonah is almost on the floor, kicking his legs up the front and beginning to cry.

Andy’s pulling over now. Jonah is almost on the floor, kicking his legs up into the front seat and beginning to cry.

After being bear-hugged and comforted by daddy, Jonah resumes his punk-ass pose.

After being bear-hugged and comforted by daddy, Jonah resumes a punk-ass pose.

This time when mom and I drove back to Albany it was with a light heart, and to my lovely musical selection: Guster Live Acoustic.

He has had a good many days in a row, sweet Boo.  And he gifted me with many hugs and kisses on Saturday, to last me ’til I see him next, on Wednesday, at the same two doctors in a row (this time planned that way).

I am grateful indeed.  Thanks especially to J and P, who as always were a huge help and support.

How I do love my amazing little boy.

* 59

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Andy told me Jonah has a new aversion – to strands of hair.  If a stray hair is on his shirt, he will pluck it off carefully, drop it (or hand it to you) and say “bye bye hair.”  I love these little utterances, how he weaves what language he possesses, making bridges to the concepts he wants to express.

It usually becomes quickly apparent to us what he’s trying to get across.  Sometimes I wonder if his whole aggression is frustration-based.  He’s probably much smarter than his limited language might lead one to believe.  So does this mean there is a short in one of the language-learning wires in his brain?  That he’d like to tell us that what he loves and what he would like to do is something which has never even been offered to him?  I have no idea, of course.

If Andy hadn’t informed me of this new Jonah tidbit, I have to admit I’d have been very confused when, on Saturday, Jonah handed me the drink I’d just poured him, announcing “bye bye hair.”   Even with the knowledge I now own regarding Jonah’s newfound antipathy, the scene left me confused.  Juice.  Hair.  No connection.

Helpless, I turned to Andy.  “There’s probably a hair on the cup,” he said, and sure enough there was.  Andy managed to slide the hair off where condensation had glued it to the side, and he handed the drink back to Boo.

I guess Jonah has been happy enough, swimming on the campus with surprising tolerance at having to wear a life vest (which prevents him from diving or swimming underwater – two of his favorite pool activities).  He starts a 6-week summer school program on Tuesday, and then he’ll have a few weeks more of summer vacation before school starts again.

My mom chose to stay behind as Andy and Jonah and I drove to the “transfer station.”  It is tiring to drive around more after you’ve just driven an hour and a half and you know you’ve got another hour and a half to travel home.  Plus she wanted me to sign her into my Facebook account so she could see baby pictures of the newest member of our extended family.  The computer is a foreign concept to her, and admittedly I have less patience with her than I should.  “Just scroll down!  Point and click on the name, ma.  The name.”  Of course she doesn’t know what scroll down means, let alone point and click, nor can she execute these pre-school level Internet commands.  I left her after a very basic tutorial.

And what a God-awful hot day.  Neither heat nor cold seems to bother Andy all that much (and bothers Jonah, seemingly, not at all).  Andy didn’t even have his air conditioning window unit installed in the apartment; I have no idea how he sleeps in the humid, cicada-ridden, sticky air.  And so the three of us got in the car and drove away with Andy’s boxes of recyclables, Jonah happy and calm, requesting “music on?” and rocking his body back and forth to the likes of Jay Z and Rhianna.

he likes the big pillow I got for the back of the car

He likes the big pillow I got for the back of the car.

And yes, he still has to wear the eye shield.  By now he may be almost resigned to its presence.  He’s got an appointment with the glaucoma doctor on Tuesday, so hopefully we’ll know more then about how much sight, if any, he’s got remaining in his left eye.

Seeming happy kid...

Seemingly happy kid…

…but deceptively so, because on our return ride back to the apartment, we are just riding along when I am suddenly in pain, slammed against the back of the seat like some Mafia move where the backseat passenger quickly throws a cord over his victim’s head and pulls back hard: execution by strangulation.  But I’m not being strangled; Jonah has grabbed a chunk of my hair and is yanking it hard.  “Ah!  Ah!” I yell.  Andy always tells me to say “pull over” if something like this happens but I almost never do/can.  It’s all spontaneous and uncontrollable, whether I shout “Ow!” or simply “Andy!!!!!”

I press into the back of the seat, my head firmly against the rest (he’s gotten me from the space between the headrest and the seat). I manage to work my arm above my head to press the hair against my scalp, since there are a few inches between his grasp on the hair and my head.  It takes the usual 2-3 minutes (though it feels much longer) for Andy to disengage Jonah’s tightly grasped fists from the chunk of my hair, and I immediately get out of the car, my hand still pressed against my head and half expecting it to come away with a whole long lock of my hair.  Instead I got a bunch of tangled strands, and more strands were all over the car (and likely all over Jonah).

Bye-bye hair indeed.

When I got back in the car I pulled the seat as far forward as possible, leaning right on the dash.  We made it to the apartment without further incident, though shortly thereafter mom and I decided to leave because he came after me again.  This time I recoiled back quickly, told my son “bye, sweetheart,” and walked out the door.

My mother played one of her favorite CDs on the way back:  John Williams conducts the Boston Pops with rousing renditions of such patriotic gems as “America the Beautiful” and  “The Battle Hymn of the Republic,” made surreal by the events of the scant time we’d just spent in Rhinebeck.

“I have seen Him in the watch-fires of a hundred circling camps,
They have builded Him an altar in the evening dews and damps;
I can read His righteous sentence by the dim and flaring lamps:
His day is marching on.”
~ Julia Ward Howe

Last night I called to see how Jonah’s day had been after Andy had brought him back to his residence.  Usually Andy calls, but I took a turn.  One of his caregivers told me he was calm and happy for the remainder of the day, having requested (and eaten) a grilled cheese sandwich and then showered and gone to sleep earlier than usual.

For some reason, after I hung up the phone I went deep into my head, calling forth these realities as though they were fresh and razor-sharp instead of the dulled, standard emotions they have come to elicit.  For a few minutes, I was in anxiety-attack mode, feeling as though I’d just dropped him off at the school to live, unreal realizations hitting me in waves of panic and nausea.  Someone else is telling me how my child was today.  Someone else has prepared his food, guided his daily activities, put him to bed.  Someone else.  Other people, far away.

How did this come to be?  How did I come to be okay with it?  Is it just that I had no choice, lest I go mad?

I am glad the floodgates of my angst were dammed again soon, that my mind-storm did not last.  I breathed my way slowly back to the commonplace lethargy of acceptance of our reality, and then I slipped further away – into the cushion of sleep.

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