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Archive for the ‘doctor’ Category

On Friday Jonah’s new teacher e-mailed me to tell me about his week at school:

This week in class we learned more about pumpkins and and their life cycles.  We also read lots of books about Halloween and October.  We had garden a few times this week too!  I attached a few pictures that I caught of Jonah picking tomatoes.  He loved to pick them not sure he like the way they tasted though!  We are super excited for Monday for Halloween!  Our class is going to be lumber jacks!!! I’ll be sure to send more photos!

Halloween was never a happy holiday for Jonah before he came to Anderson.

From babyhood he cried if we tried to dress him in a costume, and he had neither the patience nor cognitive skills to go Trick or Treating, even with guidance. And so I learned not to be jealous of other parents and kids with their cute costumes posted to social media and their happy stories of Halloween parties and fun — the same way I learned not to be jealous on the first day of school, Christmas, and every other holiday or event shared by people all around us.

Eventually I learned to find a certain satisfaction & solace in the fact that I didn’t have to deal with whatever negatives come along with all those “normal family” things – like having to shop for a Halloween costume Jonah liked, or hoping to afford the Christmas presents he wanted, or dealing with whatever bullshit comes with the soccer mom territory.

Still, I was looking forward to seeing Boo dressed up as a lumberjack for Halloween, taking part in the activities and fun at his school.

The first year he was there (2011), they sent me a photo of him dressed as Spiderman and I actually cried from the joy/shock of it all — he had fun!  He trick or treated (in whatever capacity they manage with kids like him)!  He enjoyed a special day in a way that could never happen at home.  He was doing better there.

But this morning, a nurse called from the school to tell me that Jonah had been taken to Mid-Hudson Regional Hospital after having repeated uncontrollable violent aggressions.  They are going to keep me posted as to his status but now I am distractedly anxious and upset, and angry too.  It’s the usual anger – nothing I haven’t talked about before – the anger that springs from the limitation of what they know about autism.  Jonah’s kind of autism.  The kind where he can’t stay home and even the renowned school we sent him to can’t handle him.

The kind where his Halloween costume is literally that of a mental patient in a hospital.

The kind where, when I research “autism and extreme aggression,” the articles all suggest “consider out-of-home care” as a last possible resort.  After that there’s nothing.  We’ve taken that last possible resort.

I’m tired of this holding pattern bullshit life for my boy, where even the most extreme drug regimen they can come up with isn’t doing the job.  I want to research Kennedy Krieger again and bring their intensive program in Baltimore back to the table.

From the website:

Established in the 1980s, the Neurobehavioral Unit (NBU) is a unique, 16-bed inpatient unit dedicated to the assessment and treatment of children and young adults with developmental disabilities and intellectual disabilities who have severe behavioral problems. Throughout its history the NBU has served patients from across the country and around the world. The NBU is recognized as one of the leading programs in the nation for providing intensive behavioral treatment to individuals with severe and highly treatment-resistant behavioral disorders and developmental disabilities. We offer unique integrated and targeted applications of behavioral and pharmacological intervention using a data-based approach. 

Our patients are cared for by professionals specializing in the fields of behavioral psychology, psychiatry, pediatrics, neurology, nursing, social work, and speech and language pathology. And because a child’s progress depends on caregiver involvement and participation in the program, the family is also considered a vital member of the team.

I don’t want Jonah to be away from everything that is a routine or comfort to him, but I think at this point we need to be a lot more forward thinking.  Jonah is going on 15 years old and time is running out to manage the behaviors that preclude him from any chance of a life of inclusion and independence.

I am willing to look into taking a leave of absence from work and going down to be near him, maybe stay at a Ronald McDonald House or something.  How can we not at least research it as a possible solution when it might be the key to his future?  How can I not grasp at this straw when there are no others left in the haystack?

And so I sit and wait to hear from the hospital.  I try not to think about him strapped down or given drugs to make him too dopey to attack.  Try not to sit and cry and resent all the Happy Halloween going on around me.  Try not to hold too big a pity party when I am helpless here and everything feels so out of control.

Try not to lose it altogether.

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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 want to start a whole new blog, but life gets in the way.  Then again that’s not true either – we have time for what we prioritize, whether we admit it or not.

To be sure, my life has gotten busier.  I’m working a couple different PT gigs now and I just accepted a big writing project from Pearson, which will throw the rest of August into deadline mode.  But that doesn’t excuse me from disappearing; one does hate a dead blog.

So I’ll be writing more here, with all the other work going on, even if the new blog(s) of mine must wait.  Boo does take top priority, after all.

Sigh.  It’s been a summer of disinterest for Jonah.  Against all reason, he seems to have lost his love for the pool, although I’d bet money he’d jump in the new swimming hole/waterfall area I found.

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I mourn the loss of my little boo-fish and hope he’s not gone for good.  I wish I could take Jonah to the ocean again.  He was in his element there, and at places like the waterfall at Hyuck Preserve.  Maybe he just wants a natural water source.

Nowadays, when my mom and I drive down to visit with him at Andy’s apartment, he mostly asks for car ride.  Even wanna take a bath has fallen to the dominant desire for car ride.  I understand; he doesn’t get a lot of car ride at his residential school, unless they’re taking the kids bowling or something – and then he has to share the backseat.  Hell, he won’t even share the backseat of the car with grandma unless we’re on the short ride from his residence to the apartment.  He wants mama in the front and no one in back.  Sometimes when he wants car ride he’ll simply say mama in the front?

We’ve learned his language well.  We know what he wants.

Car ride is a specific loop Andy invented which passes through and around some of Rhinebeck’s historical sites.  Usually at some point during the ride we stop at a gas station where we let Jonah out of the car, walk with him to the mini-mart inside, and allow him to choose a treat (like a bear claw or a donut).  The lady in there knows us now – she’s friendly, and nice to Boo.  He nearly always agonizes between two or more treats before deciding on something.  Then, once in a while, he’ll ask to go back to the apartment.  Most of the time he just wants another loop.

Andy gets Boo out to go for a walk, at least.  We like to take him to the park where daddy pushes him on his favorite swing for a while.  After that we walk down the path to a school’s athletic track, where I try in vain to get him to race me.  He walks and cavorts at his own pace.  Yet all of it is dependent on Boo’s caprice, which he makes perfectly clear each time.  No park!  No park!  he’ll say, and then we don’t even try.  It wouldn’t be worth it to force the issue.

My mom always brings delicious sandwiches on croissants.  Jonah will eat one, after a fashion, by pulling it apart, re-arranging the pieces, and putting it all back together Frankensandwich-style.  Yesterday he wanted a frozen dinner as well – chicken parm.  We indulged him.  He doesn’t eat anywhere near the whole thing, and his choice of “dipping sauce” might gross you out, but I did catch the experience on video.

The story of this day has a really shitty ending, so maybe I’ll just skip right to that part now and make it the middle.

When my mom and I left to go home, Andy and Jonah were having quiet time on the big blue bed.  It was a great image with which to leave them:  Jonah and his daddy lying together… Boo snuggling in for a hug.  Mama leans over for soft kisses, inhaling the top of his head.  Goodbye, precious boy.

Off my mom and I go to our innocent oblivion, arriving back in Albany, continuing on with our days, a warm feeling nestled inside us because Boo was so very happy and good.

Later Andy called me and filled me in on the rest of the afternoon.  When it was time to bring Jonah back to his residence, Andy promised him 2 car ride loops.  Evidently Jonah wasn’t counting because when Andy announced loop 2 was done, Boo insisted this was not the case.  And the manner in which he insisted involved a quick Houdini-esque harness escape followed by climbing toward the front of the car, grabbing Andy’s hair, and yanking it — hard.  I didn’t ask whether Andy at least had time to pull over first.

And I didn’t have to ask what happened next — I’ve seen it go down so many times I can watch it like a film inside my head.  Jonah pulls hair with Herculean strength.  A wrestling bout inevitably ensues – Andy trying to keep Jonah managed and safe while protecting himself.  Andy is still the undefeated champion in these matches, but he comes away bruised, sore, and likely disheartened.  We know Jonah doesn’t always love going back to his residence, and sometimes he cries, but there also have been times when he asks to go back.  It’s a crap shoot what you’re going to get on any given day.

When Andy tells me the story on the phone it’s with a calm voice, relating the facts in a tone that seems almost rehearsed.  Not fake or phony.  Just repeated too often, maybe.  Perhaps a little hardened by the time of it.  Frequency x the passing days/weeks/months = A dull and radical acceptance of a fact.

Like at the airport:  The moving sidewalk is coming to an end. 

On August 16th, Jonah will have been at the Anderson Center for Autism 4 years.  It’s still the best place for him to learn and grow and become as independent as possible.  We still know we did the right thing.

It’s just….well, not speaking for anyone but me, I discern a cognitive plateau in Boo.  I find it hard to stay encouraged that he’s gaining any ground.  His learning happens at a snail’s pace.  But maybe I’m off the mark.  I can write or call his teachers and behavioral management specialists, but I know the answer they’ll provide:  a gently euphemized, politically correct assessment of his progress and its intended path, however slowly, toward gaining skills and learning things sans aggression.  I should contact them anyway, and I will.  But not now.  Not today.

So here’s the middle of my story, now the end.  As you can tell I’m always photojournalizing our visits, with a lot of snapping pictures of Boo from the front seat of the car.  In this 3-photo sequence you get to see:

A.  The light bulb of a “naughty idea” come upon his face, igniting a smile

B.  His delight at this idea and the beginning of its execution:  snatch camera from mama

C.  The resulting photo he took of himself shortly thereafter

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I adore his laughter, his happy, the moments during which he is bright and eager and fun – hatching ideas, trying to pull one over on us.

We’ve learned to accept whatever comes because we love him.  Do I wish there were a “cure” tomorrow, a magic pill we could give Jonah to make him neurotypical?  I don’t know.  Should I wish that?

I’d prefer an à la carte menu.  Leave out the aggressions & add more interests (in anything besides car ride).  A steady, if slow, improvement in skills and cognitive abilities.  Some Calm.  If I want to get greedy (and since this is an imaginary scenario, what the hell), I also want him to be verbal. Conversational verbal.

I hear Iris Holland screaming in the movie Mr. Holland’s Opus, stamping her feet and slamming the table for emphasis:  I want to talk to my son!

But it’s a dumb game, even in pretend land.  I cannot pick and choose my child’s traits, and to do so would be morally questionable at best.  I just want him to be happy.  How many times have I repeated that sentence throughout this blog, I wonder?  How many times have I repeated myself about other things as well?

If I have, I suppose I should apologize — but it fits in well with the whole repetition theme, after all.

Here are extra pics of Boo to make up for lost time.

I’ll be back soon.

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^^^ With Grandma in the waiting room of the JRA doc.  She brings him a breakfast sandwich and a lem-a-made.

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^^^ Daddy helping him out of his harness.  Buzz cut!

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^^^ He loves grandma.  Grandma adores him!

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^^^

“Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows.”

~ John Betjeman

Perhaps Jonah shall never know the dark hour of reason. I think that might be okay.

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Mama in the front.

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This morning I met Jonah, J, and P (his transporter/caregivers) for Boo’s retina doctor appointment.

It was raining out as I walked over to the van to greet them, and people going into the building either had umbrellas or were running to get to a dry place.  But I love being out in warm rain (and even pouring rain, if I’m at my house so I can go inside and change).  Jonah’s like me.  He stepped down from the van to the pavement and we danced around in the rain for a minute before going inside.  I greeted him with kiss and blue octopus and fruit snacks, and he was in a happy mood.  He sat nicely in the waiting room, too.

fruit snacks + blue octopus = happy jonah

fruit snacks + blue octopus = happy jonah

As we waited in the exam room for the doc, he sat on his legs, facing the back of the chair.  Then he lowered his torso and let me scratch his back and give him a little massage.  More here, he’d say, moving my hand to the spot he wanted scratched.  He even stuck his butt in the air.  “You scratch your own butt,” I told him, and he giggled.  He does have a sense of humor, my Boo.  He asked for kisses on his elbow, shoulder, head, and belly.  I tickled him and got more laughs.

He never lets me do this and it is wonderful.  Rare like a jewel.

He lifts his shirt so I can scratch and rub and kiss his back.  Kiss neck? he asks, and I happily oblige, pouring a weeks’ worth of love and affection into every touch and every kiss, whispering to him how much I love him, how he is my angel.

Boo was great for the doctor, too, tipping his head back like a pro for the eye drops.  The pressure in both eyes was 12 (very good) and the doc said she could see the back of the left eye some, finally.  When she tested that eye, he pulled his usual bullshitting: “A…X…J…G” – no matter what the letters really were…as if he thought he could outsmart us by declaring the letters with confident, rapid clarity.  So I’m in the corner laughing with P and then the doc tries holding her fingers up instead, and he could tell her how many fingers correctly from about a foot away.  This is super-encouraging because it means there is still sight in Jonah’s left eye.  And maybe it’ll even improve.   Best news of the day, hands down.

My boy has had a good week behaviorally, following a crappy week.  I’m starting to accept the uncertain cycle of this, for the time being anyway.

I’m writing so much that these newly-August weeks are filled with work; I took on a temporary assignment for standardized test passages in addition to my other job with Modest Needs.  I have two deadlines swiftly approaching.  That’s just fine with me. When you love to do something, they say, it ceases to be work – and I agree.  I love my job(s).  At the tender age of 43, I’ve been set free of the rat cage.  It almost feels like retirement, sans boredom.  I have nothing to complain about.  No matter what happens, I have been blessed.  Nothing can take that away.

Tomorrow my mom and I will drive down to Rhinebeck as usual, hoping Boo will be like he was today – but even if he’s aggressive and impossible to handle, he can see out of both eyes, and that’s what I’ll be most thankful for, no matter which Jonah the world hands us.

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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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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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Whenever I stop blogging for a week or longer, there is too much to say.  Then another day goes by and more happens, and I start to dread attempting to sift through it all to highlight all the events, which then usually get amalgamated.  So be it.

Sometimes I’m lazy and turn everything into a pictorial.  This will be kind of like that, I suppose.

Last week Jonah had a doc appointment with the pediatric rheumatologist at Albany Med.  I love her and her staff.  They get Jonah right into a room and usually see him quickly.  I’d made sure to buy a whole pile of octopi, so I was prepared with both that and a bag of fruit snacks for Boo.  I called my dad to see if he wanted to come, because Jonah is rarely aggressive at this particular doctor, and I thought Jonah would like to see his “pa.”  So my dad met us there.  But Murphy’s Law being what it is, Jonah came at me at his usual light-speed and grabbed the front of my shirt, nearly ripping it in half down the middle.  Luckily both N and P were there from the school, so they intervened quickly and that was that.  It was enough to send my dad off into the waiting room for the rest of the appointment.  Though I tried twice to convince him to come back in the room, he refused.  His theory is Jonah aggressed because he was there, which may or may not be true…but he was a good boy for the rest of the appointment.

Jonah with his octopus and fruit snacks (and still, the eye shield)

Jonah with his octopus and fruit snacks (and still, the eye shield)
Boo, acting all punk-ass, slouched in the big chair

Boo, acting all punk-ass, slouched in the big chair

It’s a shame my dad did not get to see him for a longer period of time. I think he carries a deep sadness inside him, a kind of trepidation in his gut that simply will not abate.  I understand this, though it’s distressing for me to witness.  Sometimes I wish my parents had adopted another kid or two, so they’d have more grandchildren.

This was the second doc appointment that week, the first being the amazing one I’d talked about last post, so I got to see Jonah 4 times in one week, most of which were affectionate and joyful visits.

Though his retina doc still wants Boo to wear the eye shield, we got permission for him to go swimming with a life vest on (so he wouldn’t go too much underwater), and evidently Jonah was okay with that, even though he has never in his life needed a life vest.  I thought he’d pitch a fit, wanting to go deep under and swim along the bottom as is his preference…but I suppose he was in no mood to look this gift horse in the mouth (even one which forced him to compromise).

I missed him so much after that — maybe because I’d gotten to see him so many times the week before.  So I was really looking forward to yesterday.  When my mom and I were driving down I was in an awesome mood.

But the visit was tough.  Jonah was on the playground when we arrived to pick him up, and though I held my arms out wide for a big hug, he ran straight into daddy’s embrace.  This I can handle and understand; he is with his dad more than he is with me, but still I can’t help wishing he’d run to mama once in a while.

We arrived at the apartment and all seemed okay.  I was proud of myself because once he tried to lash out at me and I deflected his swing “Karate Kid” style, wax on-wax off, just like Daniel-son.  But then he got me good a few minutes later, coming at me with two fists and tightening each on a wad of my hair.  I called out and Andy came running, lowering Jonah to the floor and telling me to come with them (as if I had a choice).  I grabbed each of Jonah’s fists and pushed them into my head so as to lower the pain level and ensure he didn’t dig his fingernails too deep into my scalp.   While Andy was trying to disengage Jonah’s fingers and my mom tried to reason with him (Now Jonah, don’t hurt mommy), I writhed on the floor and cried like a wimp.

Then Jonah scratched up my eyelid (my eyes were closed tight) and bit my left arm, twice, hard, leaving painful welts I can feel today.  His shoes were still on, so I got a few nice hard kicks to the stomach as well.  Finally Andy disengaged him and I ran into the bathroom and closed the door.  If I’d had a sense of humor about it at the time, I’d have taken my camera into the bathroom and shot pics of myself.  My hair looked Halloween-crazy, teased into a mountain of snarls and tangles.  I carefully combed it out and removed a huge handful of hair from the comb,  washed my face with cool water, took a few deep breaths, and came back out to the kitchen.

After that he was mostly okay.  I’d bought him a train video (a double DVD of real trains) and he liked that.  We took Jonah for a car ride (my mom stayed back after I helped her log into Facebook so she could look up some relatives) and Andy gave him an eye drop, and for a while it was peaceful enough.  Later we had to pull over twice because Boo started crying and asking for one of his favorite caretakers at his residence.  Each time Andy got out of the car and hugged him tight, letting him cry.  I breathed deep.

We'd taken the eye shield of to give him his drop but you can see how it looked all gooky

We’d taken the eye shield off to give him his drop, but you can see how it looked all gooky

We have two more eye doc appointments next week – one at the glaucoma doc and another back at the retina doc.  I hope and pray the blood in his eye has abated, and that he will have some sight left in the eye, and that he can swim as he likes for as long as he likes.  My poor Boo.

Someone at his school called me last week to see if I had any questions about Jonah’s progress or anything I was concerned with, and I mentioned the medications and the aggressions-sans-antecedents, and she assured me that it was a fine idea to speak with Boo’s med doc, though I still want to wait until his eye situation is under control.  Also, the pediatric rheumatologist saw no problems with his joints, so if he does not need it for the eye, we may be taking him off the Humira and possibly also the Methotrexate.  So I don’t want to monkey with his psych meds at the same time.

It is hot today and I am smiling just picturing him able to go in that pool – not being left behind as all the other kids get to swim.  I hope he is having a happy day.  I’m still doing well and shrugging off the incidents where he hurts me.  I know he does not mean to hurt his mama.  I know he loves me and I love him and we are all doing everything we can to ensure his happiness, safety, and well-being.

I know we are lucky – especially when I broaden my perspective and think of the rest of this planet.

Every morning I wake up and the first thing I think is thank you.  My new job has an overwhelmingly positive effect on every single piece of what I think, what I do, and what has become most important to me.

Andy may bring Jonah up this week to swim in my mom’s neighbor’s pool.   We just have to borrow a life vest from someone.  I will get in the pool with him and we’ll have a blast.  At least this is what I hope.

“We must accept finite disappointment, but never lose infinite hope.”

~ Martin Luther King, Jr.

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