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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…

The last big Bad Thing I could have written about happened back on October 29th, 2017.

I’ve said I liIMG_20171203_102224ke to put distance between the bad stuff and the writing about it, and 3 months of distance before writing is a little much, maybe.

But also good.  Good because there hasn’t been any more bad stuff to write about.  Not really.  Not where Jonah’s concerned, anyway.

I could have written a thousand little details about our visits and his schoolwork and the music he loves now, but I’ve been lazy and, at times, hibernating in a wintry depressive state.

It doesn’t help that for a year and a half, my co-worker Erin became my best friend and then, last month, quit to take a higher paying position in a different place.

We connected on a wavelength of shared loves & zany antics – two off-balanced, slightly-evil clowns.  We were Laverne and Shirley, throwing ourselves down the street, clutching one another in the wind.  Hauling ourselves up the stairs all the way to the 7th floor for exercise when it got cold, IMG_20171215_123419098every time checking to see if the door to the roof was unlocked.  Always laughing, always singing.  We worked out harmonies to the National Anthem in the hallways and sang of butter on the side with our deli orders. We said the same thing at the same time so often it got eerie.  Without her I am just plain Shirley, which hurts something awful and isn’t a whole lot of fun to watch.  Now my days are long and empty.  I’m grateful for my job and I reckon I’ll get used to this new normal eventually, but I miss my friend.  Soon we’re going away to Boston to see a comedian and stay overnight, so that’s something.  She’s not entirely gone from me…and I’m glad she’ll still be in my life.

Maybe 2018 will be different and I’ll write all the time instead of rarely.  I don’t really do resolutions, but if I did I’d resolve to write a novel about Jonah – perhaps about a specific time in his life.  I’d focus on that terrible, tale-able time which started, conveniently for the telling, right when I began writing this blog.  Not sure where it would end, but sometime before this writing for sure.  Leave everyone hungry for a sequel.  I’ll win a Pulitzer prize, and they’ll make a movie about us.  All of that.

I suppose I should at least tell about October 29th.  I’m not sure why I remember the date…maybe because it was the day after this Halloween party I went to

as a butterfly pexels-photo-462118.jpeg

luxury-yacht-boat-speed-water-163236.jpeg on a boat

with a buffet food-salad-dinner-eating.jpg

pexels-photo-210887.jpegand a band.

Which was unusual for me what with my social avoidance/anxiety lately.  Hell, I don’t know the last time I walked into a store that wasn’t CVS, and that for prescription refills.

Anyway, the next day was October 29th.  I was tired and more than happy to join Jonah in the big blue bed for a nap, which is what he’s been requesting every week (and still does of this writing).  First he wants food, and then The Jungle Book and a nap.  So we go in to lie down.  Tickle? he said, which means he wants me to scratch and rub his back.  He often falls asleep this way, both pillows and covers over his head.  But this day I turned so I was facing away from him, and I fell asleep.  I woke to him pulling my hair, hard, hunks in both fists.  Andy came in to help, and I’m kind of following Jonah’s thrashing movements so as to keep the hair in my head, when BAM he back-kicks me, horse strong, right in the ribs.  It knocked the breath out of me and I crouch-walked into the living room to collapse on the couch, crying like I do when he attacks me, thinking at least he didn’t have his shoes on. 

He calmed down quickly after that, if I’m remembering right.  My pain waxed and then waned within a day or two.  But then, after about 9 or 10 days, it got much worse.  I’ve had pneumonia before and that’s what it felt like, heavy in my lungs and hard to breathe, but worse.  I had to roll myself out of bed in the mornings because I couldn’t sit up.  Finally I caved and went to urgent care to get x-rays, which in retrospect seems dumb because there isn’t anything they can do for broken ribs anyway.  And mine weren’t broken, just bruised.  Mother of shit it hurt, though, and for a good month.

I remember the thought coming into my head that one of these days he’s going to put me in the hospital, and then the acceptance of that thought, and finally the dismissal of it.  It’s not something that does anyone any good to think about, even if it’s true.

Now when I nap with Jonah, I get him under the sheet and blankets and then I climb in under the blankets only, so I’m lying on (and essentially trapping him in) the sheet.  I put my hands in front of my face in mock fighter-protecting-her-mug pose and I always face him.  But he’s not been aggressive to me since that day.

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If you had told me 8 years ago that someday Jonah would go months at a time without hurting me, I wouldn’t have believed you.  Or at least I would have been afraid to believe you, the same way I have sometimes been afraid to hope.  The fall from hope to despair is long and painful, every time, no matter how many times the wheel turns.  Again and again I return to hope, however – for it speaks of possibility, always looks bright, and feels a whole lot better than the alternative.

Thanksgiving was good – we saw a train on car ride.  Jonah got to see grandma and take home delicious turkey dinner she’d made.  Pa was there to give him a hug and kiss.  Christmas was fine too, but different.  Jonah never even requested train – an unheard of situation.  When grandma asked if he wanted to go upstairs and lie down with mama, he actually said yes – so I got to have a lovely Christmas nap with my son.

Funny how one of the things I used to lament once he went to Anderson was missing the everyday normalcy of watching him sleep.  Now I get that, every week –  as if in answer to a prayer piece.  No, the blindness in his left eye isn’t suddenly cured and no, his aggression didn’t disappear altogether, but this I can have.  I can nap with my Boo.

All I can say is I’m grateful for it.

bracing, embracing

It’s been a great summer with Jonah – he was mostly happy, lovey, and good-natured.  Predictable in the best way, and I swear he grew 6 inches since last year — my height (5’7″) at least, when he’s not in his typical slouch.  He went swimming, enjoyed campus walks at school, and his visits with us were awesome –well, at least from my perspective.

Our summer routine:  my mom and I drive down early every Sunday morning, and as always she stays back at Andy’s apartment while Andy and I pick up Jonah at his residence.  About 80% of the time, he’s already at the door, looking through its window for daddy – because it is daddy he looks for.  Andy picks Jonah up for visits a few times a week, and Jonah adores his father.  So as soon as we enter the code and open the door, Jonah walks out immediately.  I don’t take any of this personally.  Whenever I’m not there, he asks for mama, and I know he loves me too.  It’s all just part of how he rolls.

Usually Andy takes Boo to the car while I stay back to sign him out, talk to the caregiver staff, gather his coat or other items, and grab his meds for the day.  When I return to the car Andy’s just putting Jonah in his harness and getting him settled in the back seat behind mama.

Jonah asks for radio and if the song is not what he wants he’ll say other radio – and if it’s not loud enough, he’ll say on which is his way of asking us to turn it up. On! he’ll repeat until it’s either loud enough for his satisfaction or as loud as we’ll let him have it.  Then we drive to either Dunkin’ Donuts or Stewart’s and procure a jelly or chocolate donut, based on Jonah’s caprice.   We head back to the apartment as Jonah eats his treat.  I hand him a wipe and he cleans his own hands and face, then hands the wipe back to me.  Sometimes he asks for kiss hand and gladly I oblige.

At the apartment he confirms Grandma is there and will sometimes acknowledge her, usually accepting a hug or kiss, then heading for the fridge.

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There he pulls out random things he thinks he wants and we help set him up with the burger and fries grandma always brings.  Sometimes he asks for Jungle Book or Oompa Oompa,  his attention span varying in length but always longer than it used to be.  Sometimes he asks for train on computer and wants to choose his own videos, on as loud a volume we’ll allow.  He still, on occasion, enjoys his bathtub brunch.

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Always after these activities and sometimes in lieu of them, he disappears into Andy’s bedroom to get in and under the covers.  I ask “can mama lie with you?” and he always says yes.  So I take off my shoes, make sure his are off, and get in with him.  Usually he giggles: “And the boobie,” he says softly, turning to try to reach down my shirt.  I gently move his arm and he giggles again but stays still.  And after only one redirection, lately, he keeps his hands to himself, turns away from me, and pulls both covers and pillow over his head; I curl into him and rub his shoulders or scratch his back.  Usually we both fall asleep for an hour or so like this.

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I sometimes hear my mother and Andy talking.  They argue politics or talk about Boo.  Andy got rid of TV and my mom can’t have her Fox News anymore, so she reads a newspaper or book.

Like I said, visits this summer were awesome for me.  Andy doesn’t mind if I take a nap with Boo, but poor grandma is left to her own devices.  “Lie down with us,” I tell her, and she could, but she doesn’t want to.  Stretched out on the bed, you can see just how long and lanky he’s gotten.

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Sometimes my mom gets sad about Jonah napping during visits, but I remind her it’s a hell of a lot better than the stretch of time when Jonah refused to get out of the car at all – or, worse, when he was attacking us left and right.  At least he comes in the apartment, even if it’s only to nosh and nap.  It’s more than good enough for me.  My mom is getting older, though, and she tires easily.  It’s a lot for her to drive down.  Lately I’ve been doing the driving, both ways, in her car.  And if I can’t visit for whatever the reason, she hasn’t been going either.

It’s hard on her, and on my dad too, I’m sure.  Jonah’s the only grandchild they’ve got, and they’re surrounded by friends, family –everyone, really, all talking about their grandchildren.  Photos and stories of them at the beach, in a play, on vacation, at graduation.  My parents wanted that too.  They love Jonah very much but I’m sure they grieve the grandchild(ren) they never had.

Because Jonah is 15 now, we’re starting the process of transitioning him to an adult program. He can stay at Anderson until he is 21, but before that we need to identify the best, most appropriate housing for Jonah.  So I went to a required Front Door orientation about a month ago.  Mostly they talked about very basic stuff – what it means to be eligible, how to prove eligibility, how to access services – things we plugged into years ago.  Because it’s an adult service, though, some of the details will change.  Instead of an Individualized Educational Plan (IEP), for example, he’ll have an Individualized Service Plan (ISP).

And so here we go.  So far Andy and I have only decided that we will choose the best place we can, whether it’s near Albany where he once lived with us, near Rhinebeck where he lives now, or somewhere in between.  Aside from that, we’ll cross bridges and make decisions as we come to them.  It’s a 6-year transition for a reason; the system operates slowly, lists are long, and Jonah may change and grow beyond what we anticipate.  If we had to make such a decision today, it might be very different from one we’d make 6 years from now.  I guess we need to decipher the most likely trajectory and go from there.  We really are at the very beginning of the whole process.

To be honest, I don’t like thinking about it.  It would be easy to worry, to waste time imagining scenarios and outcomes, but what good would it do?  Best to educate ourselves about options and forge ahead.

But here comes Halloween time, and for the past two years this has meant Jonah’s behaviors get worse and he becomes very aggressive.  Last year he was so violent, he spent Halloween in the hospital.  And sure enough, it seems we’re in for it again.  Andy says not to worry, that Jonah continues to be good for him and on our visits, and he’s right.  But last week I got the dreaded email, on three different occasions, detailing dates and times during which Jonah needed take-down interventions.

I can’t even muster the hope that it won’t be another season of helplessness in the face of whatever’s making Jonah’s pendulum swing yet again.  I have to wonder if he has Seasonal Affective Disorder (SAD). He does have crying jags now and again that seem to have no cause.  I think I have SAD too, or maybe it’s just a reaction to Boo’s uptick in behaviors, but either way I face depression in the fall and winter.

My solution this year is to schedule more things with friends and force myself out of the house.  Almost always I end up enjoying myself, and getting out is healthier for my head.  It’s way too easy for me to “hermitize,” as I call it, staying inside virtually all the time unless I go to work or visit Boo.  Amazon.com and grocery delivery make it that much easier to stay in.  It’s no good for me to sit and dwell or go numb and listless.

As a result, I’ve spent more time recently with my sister Barbara (it still feels so strange to say my sister) or my friends.  I went to a beautiful mountain Oktoberfest with an old college roommate, drove over to friend KP’s house for food & a fire, that kind of thing.  It isn’t easy, honestly, when home feels so comfortable and the world seems full of obstacles and assholes.  This Saturday night I’m even joining a bunch of friends on an evening Halloween cruise with dinner and dancing (dear God and little baby Jason help me).  I’m going to fight this SAD if it kills me, both on my own behalf and on Jonah’s too.  I’ve been talking with his doctor and behavioral staff and they are raising his dose of Prozac a bit.  We want Boo to be happy.

I’m bracing for the storm that might blast us for a third year, but also embracing the good days, and feeling very grateful for every last one we get.

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There’s more to tell and it would be easier if I’d write here more regularly, so I’ll work on that too.  I just found more siblings – a younger half-brother and sister on my birth father’s side.  They didn’t know I existed, which is a whole lot different from finding my birth mother’s daughter, Barbara, who had been looking for me my whole life.

My new brother and sister both seem interested in at least emailing, which is more than I’d expected.   Given the situation, I won’t mention names or post pics.  I was born just days after our father married their mother, which doesn’t sound very good.  The last thing I want is to cause a rift in their parents’ long and happy marriage, so I’m going to let my new siblings decide how to handle what must be very shocking news.

Who’d have thought this only child would end up with so many sisters and brothers?  I wonder if there could be more even I don’t know.  Life throws curve balls.  I’m as ready for them as I could be, I reckon.

Here’s to a happy Halloween for Boo, and all of you!  I’ll keep you posted on that storm, if it lands…

ascension

I’m not sure why this video is so huge and I’m not able to shrink it without researching more, but for now I want to share an update about Jonah, and this video is the best way to show so many things…

…like coming inside Andy’s apartment again on our visits, often straight from Anderson with not even one loop first – to rummage through the cabinets and refrigerator for food, asking for one thing after the next…

…and sitting down on the floor in the living room with his fidget cube to watch Disney’s original Jungle Book, his current favorite movie.  With an attention span, quiet hands, calm body, and a happy face.  It’s been a great few months for him.

And afterwards, to take my hand and ask “tickle?” – which means he wants mama to lie down with him on Andy’s big blue bed.  And so we do, he bounding onto the bed, scrambling under the covers.  “Blanket?” he asks as I settle next to him.  And so I stretch both blanket and sheet up to his neck, and he pulls a pillow to cover his head, and he turns to face me so I can just barely see him smiling beneath the pillow.  Then he says “scratch?” and I massage and scratch his shoulders and back.  He sometimes giggles, but usually calms quickly and often even falls asleep.

This is my new favorite time with Boo, for I haven’t been able to lie next to him like this in nearly 6 years, and it is precious to me.  I feel comfortable and safe in his presence again; he hasn’t aggressed toward me in what seems like a year.  I’m not here to declare he’ll never do it again, for he’s still got his bad days and the occasional take-down and school or in his residence.  For the most part, though, it’s an ascension – from him demanding car ride after car ride, refusing to go into Andy’s apartment, attacking us in the car, all of it.

The months have stretched out quickly and I haven’t meant to let the blog go like this.  No news here is usually good news, but I’ll always come back with an update.  I’ve got more to say about my birth family, particularly my new big sister, who is 9 years older than me and just like me in so many weird ways.  We even dress alike.  I’m so grateful I found her!

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And of course, new pics of Boo:

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Happy Summertime, my peeps!  We’ll be back…

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