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Archive for the ‘behavior’ Category

My son is being transformed by time from boy to man, all while remaining uniquely innocent.  And, these days, happy.  He’s swimming a lot this summer and has just been moved to a “high school” class with older kids.  This is only his third classroom since starting school at Anderson in September of 2011.  I like that they transition the kids slowly, as is appropriate for each individual.

His first two teachers were wonderful, and this new teacher has worked as a teacher’s aide with Jonah in the past.  I’m grateful Jonah seems to be coming into his own.  He can stay at Anderson until he is 21, at which point he will graduate; as we move forward, we can all figure out what’s the next best step for his housing and happiness.

I feel more optimistic about my son’s future than I have since he went away.  His charts show only minor behaviors like noncompliance and swatting his hand, and their frequency is lower than ever.

One day earlier this summer, the kids in his class made tye-dye shirts.  Jonah had a blast and was not shy about showing off his creation.

He even has the shadow of a hipster beard and mustache, when his daddy or caregivers don’t shave him.  He doesn’t seem to care about facial hair one way or the other, though he had to have some small bumpy skin tags removed from his cheek and chin.

That’s the other thing — Jonah now has the ability to stay still long enough for the

laser procedure.  Before this, we’d have to put him under general anesthesia for everything – even a dental cleaning.

And at his glaucoma appointments, now they can do a special scanning eye exam because Jonah can keep his head in the machine for a minute or two at a time.

Last time we were at the glaucoma doc and the technician guy was asking Jonah to keep still, I wanted to say “dude, you have no idea you are witnessing a freaking miracle right here.”  This is the kid who has been banned from doc offices because of his out-of-control aggression.

Now he is redirectable.  He waits pretty damn patiently for the doctor, and follows instructions with our prompting.  The doc sometimes forgets Jonah does not know left and right, so I point or use something in the room as a reference.  Boo still tries to cheat when they bother to test his left eye.  He rocks and hums and asks for two hamburgers.  He cooperates with patience he never had before.  He laughs as he waits til he’s set free to walk back to the van.

Life is good for Jonah Russell.  Andy is not as optimistic as I am.  Yes, we’ve been fooled before into the lull of complacency when Boo is good – but he’s never been this good for this long, and I say he is growing and learning and better at processing his emotions.  I say this is a miracle, if only a highly personal one.

People all around me with kids Jonah’s age are dealing with so many parenting problems that I feel a whole new gratitude for what and who my child is – and is becoming.

More than meets the eye.

 

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Jonah April 2019

From Wikipedia: A legal guardian is a person who has the legal authority to care for the personal and property interests of another person, called a ward. Guardians are typically used in three situations: guardianship for an incapacitated senior, guardianship for a minor, and guardianship for developmentally disabled adults.

<– Here is Jonah’s most recent photo  He turned 17 on March 7th
(I can’t believe it either!), and so Andy and I started the process of obtaining legal guardianship of our Boo.  If we don’t do this, we lose the right to make decisions on his behalf once he turns 18.  As an adult in New York State, no other person is allowed to make a personal, medical or financial decision for you. 

You’d think it would be easy for parents to become guardians of their significantly developmentally disabled son.  It’s not like Jonah is on the borderline of normal intelligence or cognitive ability, and it’s not like we are distant relatives.  And yet they require all this paperwork, some notarized – addresses going back 28 freaking years for Andy, me, and anyone over 18 living with us.  No way I remember all the places I’ve lived since 1991, the year I graduated from college.  I had to guesstimate.  Hell, I lived in Thornwood, NY for a year and don’t even remember the name of my street.  

Then the lawyer tells me someone will most likely want to interview Jonah about it.  I felt equal parts surprised and amused.  “I highly encourage you to interview my son,” I told him.  I wish I could be there for that one.

Interviewer:  Jonah, do you think your parents should be able to make decisions for you?

Jonah:  Car ride?

Interviewer:  Now, Jonah, can you tell me what you would like to do when you leave the Anderson School for Autism?

Jonah: CAR RIDE!?

Maybe Jonah will kick his ass for good measure.

Just kidding.

Kinda.

The truth is Jonah still hasn’t even tried to kick anyone’s ass since I don’t know when.  Months.  Almost half a year, probably.  No hitting, no kicking, no head butts, no scratching, no hair pulling, no glasses snatching, no biting.

I didn’t know if I’d ever type those words.  I remember when we first brought Jonah to Anderson, a senior staff member told me sometimes these kids grow out of the aggression.  At the time I thought she was just being kind.  Now I think Jonah’s got a chance at more independence – or at least a less restrictive environment.

They even lowered Jonah’s dosage of Clozaril a little.

Of course he’s got a boatload of issues still.  He’s half blind, sluggish, and has warts & skin tags they’re in the process of removing.  He has some anxious days with crying jags punctuated by painful-sounding sobs.  Left to his own devices, he will sleep more often than not.  We can rarely decipher his words, and so we’ve memorized sounds he uses to indicate desires.  If he wants the radio station changed, for example, he used to say “other radio.”  This phrase has degenerated into “uhh-ay-oh.”  And so on.

Sometimes when we pick him up on Sunday he’ll have already gotten up to eat breakfast and gone back to bed again.  On these days, when we arrive we knock on his bedroom door.  Jonah sits up groggily and Andy or one of the house peeps helps him get dressed.   We pack him into the car, our sleepy-eyed Boo – complete with bedhead, all smelling like pancake syrup and body wash.  My heart swells with love for him.  I want to scoop him into my arms and rock him, but he’s no baby.  At 5’8″ he’s officially taller than me – bigger than me – and I don’t think he’s done growing.  I even wear his old sneakers.

I emailed his speech therapist about how we can’t understand him very well anymore.  She answered:

I have noticed that when Jonah is tired or unmotivated, his enunciation/intelligibility does go down. This does make it harder to understand what he is saying. Often times, I will ask him to either repeat what he said, ask him to speak louder, or to show me what he wants/needs. I will also tell him that I cannot understand him and that if he wants something, he needs to speak more clearly. This will often encourage him to speak up a bit. These are just different things that I have tried and that I have seen work with him. However, there are times when he’s not as motivated and does not care to communicate better- perhaps it’s the teenager in him.

Otherwise, Jonah is doing well and again I truly enjoy working with him. I am proud to see how far along he has come these past few years!

“It’s the teenager in him”  I loved that.  

And we’ll try her suggestions.  I know we are guilty of not asking enough of Boo.  We’re working on that.

It was a good Easter.  Andy drove Boo up to grandma’s house, where he sat at the table for a while (eating pizza, a chocolate bunny, and a piece of ham) – I couldn’t watch – and then we drove to the train tracks and saw a train – all successfully and without incident.

Jonah’s hair is the longest it’s ever been in his life.  He’s got thick, wavy brown locks I’d love to have on my own head.  My mom thinks it’s too long (when actually it isn’t much longer than the Beatles in 1964) and says he won’t comb it.  She’s probably right, but I think he looks handsome.

I show people this picture I took of him on Easter and they say I’m a great photographer.  What they don’t know, but I think should be obvious, is that I took 80 million photos of him to get a good one.

Doesn’t everyone do this?

Today when my mom and I drove down for our visit, Jonah was happy and hungry.  He asked for donut so we got him his favorite, sugared jelly, from the Dunkin’ Donuts drive thru.   All the while Andy’s scrolling through Sirius radio station by station and Jonah’s telling us uhh-ay-oh or on (if he wants it louder).  He has a fickle taste in music these days; just when you think you’ve got his preferences nailed, he’ll surprise you.

Today he disdained Public Enemy, his usual favorite, in favor of a funky disco tune.  Andy claims he even was digging some polka one day.  I wish I could find that hard to believe, but I know my son has picked some seriously weird songs for favorites.  I’m happy he likes music without the slightest care whether his choices are in any way cool, socially acceptable, or based on anything but caprice.  He just likes what he likes.

He wanted to nap at Andy’s apartment but when I asked if I could lie down with him the answer was no.  He did bestow a kiss and hug on both grandma and me, which was enough to make my day.

For those of you waiting for a boot update:

I found it.

Divinity made my missing boot re-appear, praise little baby Jason!

Actually, by then I’d already bought another pair I liked more, so the whole thing was a little anticlimactic.  The other boot was on my back porch, in the verrrrry bottom of a verrrrry big, tall box stuffed with Styrofoam and packaging paper.  I was breaking boxes down for recycling when I found it.

“Well I’ll be damned,” I said aloud, more to the boot than about it.

The Universe is Puck, playing games with us all.

Happy Sunday.

Spring is here!

 

 

<—  Me, Easter 1973.  Age 3 1/2

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On Thursday the 7th, I took time off work for Jonah’s quarterly glaucoma doc appointment.  Two Med Run Peeps drive him the 90 minutes up to Albany every time in the Anderson van; Jonah rides in the way way back, transported like His Majesty the Prince of Rhinebeck.  I was very much looking forward to seeing him.  It has been a long, long stretch of time since Boo has had an aggression.  Since maybe October.  I was hopeful he’d be glad to see me.

The stars were aligned this day.  It was Laura Ingalls Wilder’s 152nd birthday, the Med Run Peeps were being their awesome, caring, kind selves, and Jonah was cooperative and happy.  Silly and funny.  Amazingly good.

Even more so when you consider that, unlike most visits to this doc, we had to wait a while; they wanted to take a scan of Jonah’s eyes before he saw his regular doctor.  So we moved to an empty area of the waiting room, where geriatrics henceforth feared to tread – though those with vision watched us curiously and not unkindly.  Jonah laughed his brash, loud laugh, pacing up and down the row of empty chairs.  He hugged me and asked for more kiss? again and again.

My son is nearly a man.  In a photo, he sometimes looks like a regular kid who is 16-going-on-17.

In person, though, there is no mistaking him for a “normal” teenager.  His disability is as visible as if he were in a wheelchair, and to be honest I don’t mind that.  In general, people are more compassionate now.  When Jonah was very young – until he was 10 or 12, really, this was rarely the case.

Back then, to some, Andy and I were bad parents of an out-of-control kid.  Once, an autism-denier went so far as to comment that I should give him Jonah for a week and he’d “straighten him out.”  (I think his comment is still on that long-ago post).  I remember how tempting it was to let him try… just to sit back and watch Boo kick his ass.   If there is anything from those darkest days I miss, it’s the secret evil pleasure of watching Jonah attack a smug doctor who’d ignored my earnest warnings of severe aggression.

I talk about the pendulum swinging: aggressions and respite, hope and despair – our cyclic existence with no real patterns upon which to prepare for the next “season.”

Dare I pretend
to hope
to believe
Jonah’s aggressions have disappeared altogether?

Since autumn of 2010, I don’t think he’s ever gone this long without aggressing in some way against someone.  He still gets squirrely, and he’ll swat or “flinch,” as the school calls it, motioning his hand in a warning.  It’s the rattle of the snake, and yet nothing comes of it anymore.  Now it is an end unto itself.

His awesome teacher Sophia wrote me yesterday that he had zero flinches this week.  Not just zero aggressions. Zero flinches.  My hero zero.

I’m proud of my son.  I think he’s worked hard with the wonderful teachers & caregivers to learn how to manage his feelings.  Fred (Mr.) Rogers said he wanted to teach children that feelings are mention-able and manageable.  It may well be one of the most important lessons a person can learn.

The rest of Sophia’s email to me reads:  “This week we learned more about coins and bills, we celebrated the Chinese New Year, the Phases of the Moon, we did an experiment with Oreos to show the phases.  Jonah enjoyed the part where he got to eat the cookies!  We made a banana sushi roll today during Group OT and we also enjoyed a nice walk outside!”

I was so happy to hear about his week and know he spends time learning in ways that are fun and comfortable for him.  When he first arrives at the classroom, he gets under a beanbag chair and blanket for a while.  They recognize he needs to start his day this way and I appreciate that.

And so Jonah is well, and happy.

The rest of this post involves another disappearance – so if you’re here just for Jonah news, all done. 

Every day when I get home and don’t have to go out again, it is my custom to take off my winter ‘office work boots’ I wear nearly every day and place them next to the radiator in my bedroom.  So on that same day – Thursday, February 7, I came home from Jonah’s appointment and put the boots where I always put them.

That night I woke up at 1am mid-migraine, head pounding hard.  I immediately got out of bed and took the med that stops my migraines about 50% of the time.  Then I stumbled into the bathroom and, without turning on the terrible light which has become my nemesis, found a washcloth and ran very cold water over it.  I returned to bed and nearly started crying in despair for what I knew was likely coming:  the 24-36 hour marathon of puking, even the tiniest sip of water rejected; dehydration and retching causing my head pounding to worsen and the head pounding causing nausea, on and on in a nightmarish underworld where there is only pain and the desperate desire not to be in pain.  In those first minutes lying down with the cool cloth, I prayed.  I prayed the fervent, frantic prayer of one willing and ready to strike a deal with Divinity.  Please, please, let this migraine subside and I’ll do anything.  You can take anything from me. Just make it stop.

And lo, on this day in the year of our Lord twenty nineteen, the migraine stopped, blessedly subsiding into nothing – the pain retreating as if ordered to cease and desist.  I eased into unconsciousness before I could pray or even think my thanks.

The next day I awoke…

…and, as part of my every day morning routine, got dressed, reached for my boots…

And this is what I saw:

One boot.

I looked under the bed.  No boot.  In the closet.  No boot.  After a while I didn’t have time to look anymore so I found my old pair from last year and wore them instead, telling myself I’ll find the other one later.  After all, how hard can it be to find a knee-high boot?  Yes, I lost 3 books of holiday stamps after New Year’s, but those are stamps.  This is a freaking boot.

Only later that day did I realize I’d promised in my prayer the night before to give anything for the migraine to go away.

The only conclusion I can come to is God took my boot.

It is now the next day, Saturday, and my mother’s birthday (Happy Birthday Grandma, says Boo).  I have conducted a thorough search for the missing boot.  I have looked in ridiculous areas and places where no boot could ever hide.   As of this writing I have no explanation, and I’m trying not to think about it all too much, lest it freak me out completely.

If after my death I am deemed so wonderful as to be considered for sainthood, could this missing boot count as my required miracle?

The world may never know…but I’ll keep you posted if I find it.

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I see Jonah in bits and pieces.  He is behind me on a car ride, he is requesting The Jungle Book, I’m starting the movie, I’m pouring him cranberry juice.  Sometimes I’m trying to get a photo.  In most of the photos he’s in the backseat of the car or sitting at the table or on the floor, eating something.  He almost always wants to nap but only wants mama about half the time.

     

Today when I asked if he wanted me to lie down with him for a nap, his answer was unambiguously no.  And when his answer is no, my visit is short.  Every other week my mom is with me.  I used to have people join me on my mom’s Sundays off, but not so often anymore.  Andy always manages to visit with Jonah several times a week, no matter how tired he is or how much he has worked that day.

The beginning of November was sunny and warmish, but lately the days are short, cold. Dreary.  Seemingly always raining, dark, drizzly…we even had snow already, which I prefer, if it’s going to be cold anyway – and most days I am tired, often depressed.  It’s hard to write about Jonah when there isn’t much going on where he’s concerned.  I guess Jonah’s ambivalence or indifference toward me is better than an attack – a thousand times better.  I should be grateful for it.  How quickly I forget how bad it can be.

Props to his teachers and caregivers.  Sophia, his head classroom teacher, sent me a great photo of she and Jonah in the classroom during their “Charlie Brown Thanksgiving” celebration.  Just like in the TV special, they feasted on toast, pretzels, jelly beans, and popcorn (which I’m sure the kids loved) and I guess Jonah had a blast.  Could we ask for a better, more energetic, patient, creative, and loving teacher?  Not in a million years.

I love seeing Boo happy. I wish I could stand behind a two-way mirror and watch him in class, or at the rec center, or hanging out at his residence.  Videos and photos are the next best thing.  One of his caregivers at the residence even texted me two little videos one day, of Jonah jumping around on a giant beanbag and laughing his head off.  I don’t know how to move the video from my phone to the computer, though.  Maybe I’ll ask the youngster at work.

I’m tired.  Maybe I’m not getting enough iron, or potassium, or protein.

Sometimes the days seem lengthy and meaningless, and there are days I go to sleep old-lady-early.  I forgot to take my meds a few different days recently, and paid for it dearly.

Thanksgiving was as successful as Thanksgiving gets, though, and believe me I’m grateful for it.  Jonah and Andy made it up to my mom’s house safely and without incident, and when we took our car ride, we saw a long train within minutes.  My mom made delicious dinner and packed it up for all of us just like she’s been doing for 5 years or so now.  Next year I want to try making Poppy’s dressing.  (My grandfather, who died in 1999).  His dressing was legendary and time-consuming to make…my mom doesn’t attempt it anymore and I miss it.  Funny, the things you remember, the details of life you long for once they’re gone.

Then, the Saturday after Thanksgiving, my awesome sister Barbara was taken to the ER and abruptly moved to ICU with bleeding ulcers, breathing problems, and ridiculous leg pain and bruising.  While they were figuring her situation out, my sweet Uncle Donny had a heart attack.  He had a stint put in and was somehow “fixed” and home two days before Barbara.  I spent as much time as I could with my sister, trying to advocate for her when it seemed they weren’t managing her care very well.  There was one day when I felt like screaming Shirley MacLaine-in-Terms-of-Endearment style:

My mental illness has been showing.

I’m having full-blown panic attacks out of nowhere.  It’s always a déjà vu feeling, usually triggered by something – a certain word or phrase sets everything into motion.  Sometimes it’s a snippet of a song or a line in a movie.  Then I’m caught on a memory-train tunnel; a piece of my brain unlocks and floods with terrifying thoughts – things I don’t want to see or hear, the confusion of not understanding what’s thundering through my head while at the same time remembering, recognizing, the recognition terrifying, and I am forgetting or unable to breathe, a burst of fire in my center, my heart thumping odd strong rhythms, and then I’m falling from my chair to the floor, falling away from my consciousness, saved at the last minute by breaking out in sweat, knowing how to breathe again.  Moments later I always try, almost unwittingly, to recall what I was thinking, what was so overwhelmingly scary – and even as I seek it I am frightened to find it.  I never do find what it was that started the tornado, nor what was swirling through my head.  It leaves me feeling insane, or at least like I am facing going insane.  I call it a panic attack because I don’t know what else to call it.  What does it matter what you call it?  I’d do anything not to have another.  They are the most horrifying moments of my life.

Two workdays last week I cried on and off all day, for no reason and for every reason.

Still I worked my jobs and ate food and went to sleep and kept moving forward.  I have friends and a cousin in various degrees of distress and depression, and I want to help them.  More often than not, though, I’m right there with them and can only empathize with their dismal forecasts and downtrodden spirits.  Some of my extended family are feuding, and people are hurting.  It seems we’re all slogging through the holidays; I’ll be glad when the year turns and there is the promise, at least, of the renewal of spring.

I am not like this every day.  I’m not.  I sing and I smile and I do my best to combat the hate in the world by trying to be a good person.  It’s just a struggle right now.  I chose to write this in the midst of it, but I am not trapped under it.  I promise. I’m a Weeble.

And, as all Gen Xers know…Weebles wobble, but they don’t fall down.

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I’ve got good news and bad news.   To decide which to write about first, I’ll flip a moneycoin piece.  Heads = good news first, tails = bad news first.

Bad news it is.

Jonah’s recent behavioral team review from Anderson tells the story well enough:


9/11/2018 
Reason for Appointment: BTR (Behavioral Team Review)
Chief Complaint: Aggression, Non-Compliance

There has been a significant increase in the intensity of Jonah’s aggression.  Recently dislocated teacher’s arm during restrictive management. He has also bitten people. He seems more on edge.  Episodes of aggression are not frequent but when he is aggressive it has been extremely intense.

Currently the team is trying to get approval for 4-person supine restrictive control.

Will increase clozapine dose by 25 mg/day.


As far as I know, Jonah’s teacher is still out on medical leave.  I hate that it happened and I hate that it was Jonah who hurt her.  I emailed her and sent an “I’m sorry” card;  Andy and I are worried about her and upset in a sickened kind of way, having gotten so used to the mostly smooth ride of spring and early summer.

A 4-person takedown is a big takedown.  If you’ve been reading my blog you might remember me talking about 2-person takedowns.  Somewhere in there they increased it to 3, and now 4.  The drug increase has made him sleepy;  it’s strong medication, the clozapine (or Clozaril, its brand name) and has a sedative effect.  It’s also the only thing that’s worked, really, at all.

And so this wet, hot summer has been peppered with these spikes in Jonah’s aggression.  One time it was just Jonah and Andy, in Andy’s apartment, and it got pretty hairy.  I remember speaking to Andy on the phone the night after it happened.  “I’ve still got him,” he told me.  I knew what he meant — he still has the edge on Jonah, strength wise, if only by a hair.  Andy does not have 3 other people to get both Jonah and he through the incidents safely, as they’ve deemed appropriate and necessary on the school campus.  So a cabinet in Andy’s apartment was destroyed, and both he and Jonah got more than a little scratched and bruised.  There were also a few hair-pulling incidents with varying levels of hurt and pain – although Officer Scattergood was our last run-in with the five oh.

There is good news, though.

Between incidents of extreme aggression, Jonah’s progress report (from 4/1-6/30/18) tells us “Jonah shows continued improvement in Transition Development programming, participating in daily living and pre-vocational skill activities as well as the on-campus work program and garden.  He’s learning to clean surfaces, wash dishes, sorting/folding/stacking laundry, making the bed, using the washer and dryer, loading & unloading the dishwasher, and setting the table — but he needs visual, verbal, and sometimes gestural prompting for these things.”

“He also works on meal prepping and clean up, including cutting, measuring ingredients, and using kitchen appliances. Jonah does especially well at the task of passing out plates, cups, and utensils to classmates.”

I even have photographic evidence of his cake-making skills, kindly provided to me by one of his residence caregivers, Tonya, just last week.

I don’t know if I’d believe these things if I didn’t have the pictures.  He’s much more independent and capable at Anderson than he is with us…partly, I think, because more is demanded and expected of him.

“He has been doing well with engaging more during group OT (occupational therapy).  He has been much more open to trying all the meals that he helps make!”

Wonders never cease.

 

 

 

 

 

“Jonah also completed pre-vocational tasks that developed his ability to sort, package, sequence, match, and assemble.  He can almost independently retrieve a task, perform that task and return the task.  However, Jonah needs encouragement to complete the task in a timely manner.  He can stay focused through the task and when finished he is able to put the task back with verbal prompting.  Jonah enjoys the color sorting.  This quarter there were new Vocation Specific tasks that included filling envelopes, folding paper, and labeling mail.  Jonah did well with these new tasks.”

“Jonah participates in several on-campus jobs including working in the garden and janitorial/recycling tasks.  While Jonah needs support learning new skills in the garden, he needs minimal assistance in completing his janitorial tasks.  During garden Jonah completes tasks such as watering plants, digging soil, weeding, and planting seeds.  Jonah enjoys watering the plants and sometimes himself and staff too!  Jonah continues to make deliveries around the school with the daily newspaper; he is doing very well.  He can almost complete this task independently.  Jonah continues to help assemble, package, and count items for the med-kits for surrounding classrooms around the school.  He continues to do well with these tasks.”

“Overall, Jonah has been an active participant in all areas of the Transition Program.  We will continue to work on accomplishing tasks more independently.”

This written by his teacher, about 6 weeks before he injured her.

Here he is in the pool with her, earlier in the summer.  She’s young, vibrant, and happy – full of energy and empathy.  She has often told us how much she enjoys having Jonah in the classroom.  I wonder how she feels about him now.  I wonder how she feels now about teaching these kids who attack and stim and struggle.

I hope she knows how important she is and how much we appreciate her.  No matter how many times we thank her and Jonah’s other teachers and residence caregivers, it will never be enough.

There is a lot more to say – more news of a different sort – but that’s a different entry.  Let me get this one out there first.

We must free ourselves of the hope that the sea will ever rest. We must learn to sail in high winds.  ~ Aristotle Onassis

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So I was editing the last post, and “similar posts” came up along the bottom.  Among them I found:

my 100th post mother’s day mystery

in which I bore you all with the same exact story about Sara Crewe and A Little Princess.  Oops.

I rarely read my old blog posts and I’ve never read the whole blog through start to finish.  I wonder how many times I’ve gone on about Laura Ingalls Wilder, Guster, Elfquest, A Little Princess, etc. in the same way, over & over? Am I getting forgetful in my middle age, repeating myself without realizing it?  Or am I autistic and fixated on telling the same stories and references ad infinitum?

At least now I know the first year the magician started coming, which makes this year 7. That’s new information for sure.

I COULD just go back and edit that last post, but that would be a lie of sorts.  This memory thing is part of who I am.  I do often forget that I’ve already told someone something, or I forget to whom I told what.  

Sometimes I forget because I need to forget.  In the process, other things get tossed out in the wash.

I suppose there are worse things that could happen to my mind.

Tomorrow I drive down alone to visit Boo with Andy.  Jonah has had a rough week; yesterday he even bit a caregiver on the stomach and fought with another.  And here I thought I just might start to maaayyybe hope that his aggressions were gone for good.  At least mostly.

But no.  No, again.  No.  Again.

I have to be careful tomorrow.  Follow all the old rules.  No glasses, be vigilant, tuck the sheets under him and not me when we take a nap.  If we take a nap.  I’m nervous about it, and sad, and it makes my PTSD kick in, my heart pounding pounding pounding, teeth clenched, muscles tight, jaw like stone.

Plus it’s been raining and dreary all day, and there was another school shooting yesterday. 10 people dead in Texas.  I read the comments on the articles about it, all the solutions, all the suggestions, the angry finger-pointing name-calling righteous people who blame and lash out, mock and ridicule, troll and flame, everyone saying it has to stop, it has to stop, it has to stop.  We have forgotten how to be kind to one another, even in the wake of a tragedy.  It’s more important that someone else is wrong and you are right.  It’s more important to be heard than to listen.  Ours is a broken country.

I’m exhausted from caring about too many broken things.  I’m exhausted from crying about it and about Boo earlier, and exhausted from rage cleaning – scrubbing and sweeping, vacuuming and doing wash, whirlwind style, vigorous and hard.  I always clean like this when I’m feeling angry and helpless.  It’s a giant metaphor.  I can’t scrub the world of its hate and I can’t wash the aggression from my son, but I can at least do the dishes and make the fucking sink shine.  I can clean my own little corner of the world.

Wish us luck tomorrow, Andy and me.  That last time he hurt me pretty bad.

If he does it again, though, at least I’ll probably forget it.

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For the past several years, someone has left flowers on my front porch steps on Mother’s Day.  Not bouquets in vases but flowers in pots, ready to be planted.  Different kinds each year, but always flowers.  I think it started the first Mother’s Day after Jonah went away.

This year on Mother’s Day I returned from visiting Jonah with my mom and saw the flowers there again, as always – a pot of bleeding hearts this time with a card from Boo, the handwriting unrecognizable (deliberately, I presume).

Always the flowers make my day.  A magician has come, I think to myself.  Someone who knows I drive to visit Jonah every Sunday.  Someone who wishes to remain anonymous…who knows my Mother’s Days are never all that happy since Jonah left, no matter what the day is like.

I used to think of all the possible magicians, trying to identify who in my life could possibly be that dedicated to this.  To me.  Since the flowers started coming, they have never stopped.  Year after year – for 6 or 7 years now without fail, I am visited by a magician who places flowers on my steps and slips away.  This simple, loving, ever-faithful gesture touches my heart more than I can say.

Of course I plant the flowers every year, usually a week or so after I get them.  I like to keep them inside for a while first, so I can look at them, smile, and think about whomever gave them to me – enjoying the mystery of the magician’s annual appearance.

This year, it finally occurred to me: the magician probably reads my blog.  How else would they be certain I’m not home when they arrive every Mother’s Day?  How else would they know I call Jonah Boo? After all, I rarely do so outside this blog.  The already small field of possible magicians narrows.  But I respect their desire to remain anonymous, and I do not intend to ferret them out.

Every year, though, I find myself wishing I could thank the magician.  And now that I am pretty sure they read this blog, I can.

In a “cosmic coincidence” kind of way, this is remarkably similar to a fictional scenario I love and have read many, many times:  the story of Sara Crewe, my all-time favorite heroine in my all-time favorite book, A Little Princess by Frances Hodgson Burnett.

At one point in our heroine’s story, she is poor, hungry and living in the dingy attic of a fancy girls’ boarding school.  One day she wakes up to find the attic suddenly and inexplicably transformed with little folding chairs, blankets and pillows, books, steaming tea and little sandwiches set up on a little table, a fire in the long-unused fireplace, and beautiful tapestries on the walls.  Sara is astounded.

Every day the magician, for that is what she calls him, brings more and more little pleasant things to make her happy.  She loves the magic of it and abandons herself happily to the mystery as well, enjoying all that is brought to make her sorrow-filled servant life happier.  But one thing nags at her, and she relates this to Becky, her fellow scullery maid:

“I can’t help thinking about my friend,” Sara explained. “If he wants to keep himself a secret, it would be rude to try and find out who he is. But I do so want him to know how thankful I am to him—and how happy he has made me. Anyone who is kind wants to know when people have been made happy. They care for that more than for being thanked. I wish—I do wish—”

She stopped short because her eyes at that instant fell upon something standing on a table in a corner. It was something she had found in the room when she came up to it only two days before. It was a little writing-case fitted with paper and envelopes and pens and ink.

“Oh,” she exclaimed, “why did I not think of that before?”

She rose and went to the corner and brought the case back to the fire.

“I can write to him,” she said joyfully, “and leave it on the table. Then perhaps the person who takes the things away will take it, too. I won’t ask him anything. He won’t mind my thanking him, I feel sure.”

So she wrote a note. This is what she said:

I hope you will not think it is impolite that I should write this note to you when you wish to keep yourself a secret. Please believe I do not mean to be impolite or try to find out anything at all; only I want to thank you for being so kind to me—so heavenly kind—and making everything like a fairy story. I am so grateful to you, and I am so happy—I used to be so lonely and cold and hungry, and now—oh, just think what you have done for me! Please let me say just these words. It seems as if I OUGHT to say them. THANK you—THANK you—THANK you!

THE LITTLE GIRL IN THE ATTIC.

The next morning she left this on the little table, and in the evening it had been taken away with the other things; so she knew the Magician had received it, and she was happier for the thought.

And so, just like Sara, I get to say:

Thank you for being so kind to me—so heavenly kind—and making everything like a fairy story.  THANK you—THANK you—THANK you!

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