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Note:  In this blog post, when I reference my parents – my mom or my dad, I am referring to the ones who adopted and raised me; they are my “real” parents.  When I write about my biological mother and father, I say birth mother or birth father.  And since all my found siblings are half-siblings, I describe them simply as my sisters and brothers.


I’ve written about finding my birth family, then meeting (and loving!) my sister, Barbara, who lives close by.  This summer I got to meet three more siblings.

First, my younger brother and sister on my birth father’s side: Kathleen and Scott came up from Arizona with their spouses & kids to nearby Saratoga to see relatives.  I visited them at a camp they’d rented and spent some time with all of them for a BBQ outside.  It was fun; they’re good people with happy families.   For my birthday, Kathleen and her husband & only daughter mailed me presents (including a huge home-made card her daughter colored) and a framed photo of Scott, me, and Kathleen from the day I visited them:

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I’m less than a year older than Scott, and 6 years older than Kathleen.   It’s weird to be oldest because I’m the youngest on my birth mother’s side – and after all, I was an only child for the great majority of my life.

Now I’m one of seven.  The mind reels.

Of course I’ll always be an only child where my parents are concerned.  That’s cool too.  Hell, I’m probably the only person for miles who is simultaneously the only, oldest, and youngest child.  Best of all worlds.

So Barbara and I flew down to see our big brother Philip for the first week in September.  I had the idea to turn it into an ocean vacation because he lives in Alabama and some of the Florida beaches are less than 2 hours from him.

As it turned out, he drove to us on the morning of September 2 – my 49th birthday.  When I opened the door, he grabbed me up in a huge hug that felt like he’d never let me go.  It was a reunion for Barbara too, for she hadn’t seen him in person for a few years.

The three of us had a ball.  We had beautiful, sunny days and fun-but-not-dangerous storms, too.  The place was right on the beach and we cavorted like kids, swimming and laughing and playing.  Philip and I hit it off right away; I marveled at how much we looked and acted alike.  The three of us sit the same way and have so many of the same mannerisms.  Plus we have other things in common – bits of geeky weirdness – that I never thought could be genetic.  Barbara even gave me a shirt that said “Majestically Awkward” with two flamingos on it; she’d bought one for herself as well.  It’s perfect!

Here are some photos from our time together:

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Philip has stayed in touch with both of us since we came home.  He worries about me and loves me and checks in on me just like he’s always been a big brother, something I’m not used to at all.

He makes me feel valued and safe, and I’m grateful for him.

“I like having you for a brother…
I like having you for my big brother.”

~Rainman

his wonderful teacher

From: Sophia
Sent: Tuesday, September 25, 2018 7:55 AM
Subject: Jonah!

“Good Morning Amy and Andy!

I’m back!  I just wanted to say thank you so very much for the kind words and well wishes.  Meant the world to me.  Also thank you for the card, you didn’t have to do that.  I know the whole situation was an accident.  I love Jonah very, very much!  I am happy to be back and excited for this school year!

Jonah did an awesome job with all the other staff that were here while I was away.  I will let you know how the rest of his week goes!  Have a great week!”  🙂

Sophia

Special Education Teacher

Classroom 312

sailing in high winds

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

I’m glad I had the wisdom to visit Boo by myself the day after that last post.  Since my mom has been driving down with me every other week, I’ve had a host of other companions join me on her off-weeks.  My sister, two different cousins, and a good friend.  But I knew better this time, and I was right.

Andy and I had just picked Jonah up for his visit, and after a few minutes he asked for donut.  Andy told him yes, but about 10 seconds later he suddenly grabbed a hunk of hair on the right side of my head.  Andy immediately responded by pulling the car over, but before he could get out I felt Jonah’s other hand take a second hunk of my hair, and I was pinned against the seat, my head yanked back.

Andy ran around to get in Jonah’s side and there was a brief struggle before first one chunk of my hair, then the other, was released.  I scrambled out of the car like a hijacking victim trying to escape, my hair in every direction, tears streaming down my face.   Before I could wipe the hair and tears away I nearly stumbled into a car parked nose-to-nose with us.  A police car.  Evidently the cop was driving in the other lane and crossed lanes to pull over and check out the scene.  He opened his door and starting walking toward me.  I must have looked a wreck.

While Andy calmed Jonah down, I tried to get my shit together so I could explain what was happening.  By this time other cars were slowing down to rubberneck.  I started to ask the officer his name and simultaneously saw his name badge:  SCATTERGOOD.  “Your name is Officer Scattergood?” I asked, trying to seem like a normal person, hoping this was an auspicious sign.  “Ye-es,” he said haltingly, evidently hesitant to scatter the good until he assessed the situation.

First he attempted to talk through the open car window to Jonah himself, who by this time was calm and ready for more car ride.  “What happened here?” he asked Boo, who deigned to glance over for a few seconds before turning away.   Andy and I began to explain, each of us supplying bits of information.

Officer Scattergood asked me if I needed EMS and, when I declined, he took down our info.  I asked if he had been trained in responding to people with disabilities, and he said he actually just recently completed a 2-hour autism training course.  Still, we must have been his first autism rodeo; he seemed unsure quite what to do.  Finally he wished us well and we continued on our way.  I pulled my seat all the way forward and out of Boo’s reach.

It wasn’t until I got home and in the shower that I felt scratches all along my neck and right shoulder, and two small bald spots on my head.  I saw all the hair that had rinsed away in the tub and caught in my brush afterward.  (Good thing I have plenty.).   My scalp ached some, but it could have been worse.

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<– Boo was okay for the rest of our visit.  I tucked him in tight for our nap and then lay next to him (on top of the tucked-in sheets so as to give myself a quick escape route, should he attack again) but he only giggled, piled pillows on top of himself, and fell asleep.

I’ve been wondering how the whole scenario with the cop might have played out differently had we been a black family.  I like to think we would have been all right either way, but I also know the world is a volatile place right now where race and police are concerned.

I was very impressed by Childish Gambino’s This is America video and have felt compelled to watch it again and again.  One of my coworkers, S,  is young enough to be my son; he’s the one who showed it to me.  S grew up poor and his family all chipped in to get him through college – not just mom and dad but aunts and uncles and cousins, all lifting him up.  He’s also Hispanic and so we sometimes talk about race, racism, and everything that goes with and exists around it – perceived and real entitlement, privilege…socialism and sexism and capitalism.

I just totally pasted that into my blog post by accident.  Well, I meant to paste the link but there the whole thing is, right?  Ferris Bueller, talking about “isms?”  I could have done that with This is America, too, then.  I guess.  I figure things out as I go along, and technology is whizzing past me.  I end up learning things completely by accident.

The youngster at work is also good at helping me out in this regard.

So off to Boo I go again tomorrow, this time with my mom, our fingers crossed again. Lately he’s had both good days and squirrely ones.

His cool teacher sent me this picture of him, saying he showed up to school with the goofy hat on.  His shirt is courtesy of mama, who is growing tired of grandma’s ultra-conservative taste.  Jonah is not a golfer, nor a Rhodes scholar.  His clothes should reflect his silly, bright, whirlwind of a personality.

See you tomorrow, Boo!

 

 

 

 

 

forgetting

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.

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!

in his shoes

My mom seeks out comfortable, high-quality shoes for Jonah in an old-school, determined way.  I think it’s her generation (the one that came after the Greatest Generation and before the Baby Boomers).  When I was little, she always took me to Stride Rite and had my feet measured carefully.

Her parents were big on shoes, too.  We did without some things but we never did without good shoes, she tells me.

And so Jonah has always had the finest footwear.  Until he got aggressive, we brought him to the Stride Rite in Stuyvesant Plaza, always planning the time of day so as to be the only ones in the store, if possible.  He paced in circles and we got him to stop briefly in that silver measuring thingee with the slider so they could get his size right.  The salespeople were always kind, and my spoiled Boo had a never-ending supply of fine footwear due to my mother’s diligence and my father’s financial backing.

None of that has changed. Once we couldn’t take him to stores anymore, grandma got creative, tracing his feet on paper, then purchasing her very own silver measuring thingee.  I’ve got to give props to these slip-on sneaker/shoes she found, because he loves them.  They’re easy, and comfortable, and so we keep buying them.

She just ordered him two new pair and instructed me to donate his old ones.  When I collected them at his residence, though, they looked a little too ratty to donate – and yet not destroyed enough to throw away.  Out of curiosity I tried them on, and they fit me perfectly.  So now they’re my house shoes.   I am literally walking in my son’s shoes.  I like it.  But damn. You know you’re getting old when you start telling people these are my house shoes.

When I was pregnant I remember thinking I’ll be 50 when my child is 18, and how perfect it seemed.  My fledgling trying his wings as an adult, me trying my wings as an empty nester.  Now 50 is less than two years away.  18 is too.  And none of what I expected has come to pass.  He’d be a junior in high school now, but he’s trying his wings in a far different way, and my empty nester time came 9 years too early.

Because 18 is coming it means we need to apply for guardianship so we can make medical, educational, housing, and other decisions for Boo.  We have all this paperwork they gave us about what we need to do.  I also had a free consultation with a lawyer about a special needs trust, but it’s a few thousand dollars just to set up.  We might be able to use some of his SSI money to save toward it; I need to look into that.

Jonah’s been doing great.  His teacher sends me notes and the residence tells us stories, and I think he’s down to one takedown a month or so .  Let me type that again.  I want to type it again.  ONE takedown a MONTH.  This from a child who was up to 12 take-downs a DAY (and, really, after that, so many that they were like one continuous aggression with brief interludes of Jonah catching his breath).  I’m very grateful, even though we’ve had to trade away some abilities to mitigate his aggressions.  He definitely is not enunciating like he did when he was much younger, for instance, and I think he’s lost some of the interests he used to have.

Then there’s a voice in my head that says well, he is a teenager, after all.  Don’t all 16-year-olds mumble and nap and listen to rap?  I’ve stopped trying to guess what’s what and why and how.  There’s no map for this path.  We’re bushwhacking through, just as always.

It’s becoming increasingly apparent Jonah won’t be able to live independently as an adult.  At all.  It’s not so much a surprise as a sigh.  It will be another new normal.

Oh, and I have photos to share.  Jonah’s now as tall as Andy and me (we’re all 5’7″ for this short while).  He slouches, though, so I think he might be even taller now.

20180325_101115Wearing his Public Enemy shirt my friend Kristin got him.  His favorite album is  It Takes A Nation of Millions to Hold us Back, particularly the track Bring the Noise.

I’m too black.  Too strong, he says.

Fight the power, white boy.

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Here’s Jonah with my dad on Easter Sunday…and two more from

the same day…

 

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He’s been learning some simple piano chords.  Nothing amazing or even melodic, mind you, but chords nonetheless.

This is grandma’s living room, and yes – that’s a genuine signed and numbered Thomas Kinkade in the background on the wall.  (I’m not what you’d call a fan).  She got #666, and I tease her about that.

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Next to Grandma, Jonah looks like a basketball star.

Easter was good.  As good as it could be, considering our family lost my beloved Aunt Sue to a sudden stroke in late February.  Our family still sits stunned and disbelieving.  In shock.  She may well have been the best of us, and the first of her generation to pass away on my mom’s side of the family.

I hadn’t planned to ask if I could speak at her funeral but I did end up writing something and sharing it – a letter to her, thanking her for being my sweet Aunt Sue.  I’m grateful I got the chance to pay her tribute.   Now my Uncle John breathes in and out and gets through day by day and minute by minute, the long exhausting slog through grief that comes first like flooding water drowning you, then in waves crashing steadily at intervals, then like random jolts.  Sparks.  Sharp pricks of pins. Time softens the blows but never quickly enough.  The pain pulls your very heartbeat out of rhythm – thumping, jumping, scared.  It can rip through your stomach like flu and squeeze your lungs so you’re gasping, fish out of water flopping on the floor.  Everything upside down.  No answer, no solution, no matter what.  The panic and the desperation.

This life is messy.  Joyful, and sometimes agonizing.  Tiring and boring and too fast and very funny.  Recently another younger cousin happily announced she is pregnant, and so the wheel turns.

I have hope now with consistency, for the pendulum I’ve blogged about so often has slowed to a very slow swing.  I’m resting on it as on a hammock, still and settled, for as long as I can.  I have hope, and it feels just like the spring we’re finally beginning to see here in Upstate NY.

Boo says hello.  And Onward ho…

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