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Quick post today which is really a request for my work, the New York State Independent Living Council (NYSILC).

We’re conducting a post-election poll to analyze voting experiences of New Yorkers with and without disabilities, and ultimately identify areas of improvement to ensure voting is an accessible experience for everyone.

If you live in NYS and voted in the presidential election, you are eligible. All results are anonymous, and the survey is quick and easy. Please take it, and share with as many people as possible.

https://www.surveymonkey.com/r/KRZ5CTJ

Thanks guys!

I’ll be back soon with news of Boo.

Repeat

We were enjoying our off-campus visits with Jonah.

Until we weren’t.

One weekday visit, Jonah attacked Andy in his apartment. Andy called for help, and luckily his landlord was outside and came running. It was a violent attack, and it scared the hell out of Andy. He may not have been able to subdue Jonah on his own. Then Jonah attacked Briana at the residence, and the other staff member at the house couldn’t get him off her. She called on the walkie-talkie for additional staff. She was bitten several times, and I don’t know what else – but she was out of work for several days. The last straw came in the car, on another weekday visit. Jonah wears a safety harness, but his legs and arms are so long that he was able to kick and grab at Andy. Andy almost got in an accident pulling over, then nearly got hit getting out of the car.

It’s just not safe to take Jonah off the campus anymore. We had a behavioral team meeting and we urged them to place Jonah back on a 4-person takedown protocol. We gave permission for Anderson staff to record Jonah’s aggressions (though how they’re going to do this is beyond me). And we made our case for the necessity of this move, though in my eyes it’s clearly evident.

And so we’re repeating the “slow on the driveway” visits we had earlier in the summer. For the past two weeks, I’ve met Andy on campus to get Jonah. We bring him a breakfast sandwich and he eats it on the picnic table outside the residence. Then we drive him around and around and around the campus while he chooses the music. This past Saturday he tried to grab me from the backseat of the car. If I had my long hair, he would’ve gotten me…but I pulled away quickly and escaped injury. Andy pulled over, I got out, and we gave Jonah a “time out” from music and car ride.

Andy says, “Jonah, I want you to have safe –“

Jonah: Hands.

Andy: And?

Jonah: Feet.

Minutes later, my son and I are singing along to “Watermelon Sugar” and smiling. Andy guides the car along the campus roads, pulling over and getting out every so often to take on a hygiene task, breaking them up so as not to overwhelm Jonah. One stop is for teeth brushing. Another is for cleaning his ears. Another to clip his nails. Clean his hands and face. Pop a pimple. After an hour or so, we tell Jonah “two more songs and then campus walk.” One more loop. Time for walk.

We knock on the residence door to tell them we’re going on the walk. The first time, Briana came with us, bringing her walkie-talkie. This past Saturday, we walked him around the campus on our own, making sure to bring our cell phones to call her if Jonah flipped out. He didn’t.

Once again, we are navigating new waters. If the weather doesn’t cooperate, there are mock-apartments at the campus center for us to use. We’ll have to do the best we can.

During all of this eating, car-riding, and walking, Jonah wants reassurance we are coming back. “Repeat?” he asks. This means he wants us to tell him when.

Andy: Daddy’s coming in 3 days. Daddy’s coming on Wednesday.

Jonah: Repeat?

Andy: Daddy’s coming in 3 days. Daddy’s coming on Wednesday.

Jonah: Repeat?

Andy: Daddy’s coming in 3 days. Daddy’s coming on Wednesday.

Jonah: Repeat?

Andy: Daddy’s coming in 3 days. Wednesday.

Jonah: Repeat?

Andy: Jonah, listen to me. Daddy’s coming in three days. Daddy is coming on Wednesday. Now be quiet and listen to the music.

This might buy us a while. Half a song or so. Sometimes I provide the answers Jonah seeks. Daddy’s coming in 3 days, Boo! Daddy’s coming on Wednesday. Momma’s coming in 6 days. Momma’s coming on Saturday. I vary the pitch and tone of the answer, sometimes singing it.

“Repeat?” he asks again and again. The repetition of repeat is too perfect.

Andy and I adapt and settle into whatever new reality comes along with Jonah, to the best of our ability, changing it up as many times as is necessary, which in 2020 has been a lot.

Our son is tall and handsome in the autumn sun.

Whatever we have to do to keep him (and everyone else) safe and happy, we will do, of course.

I stopped pondering why he was able to go 18 months without aggressions and now they’re back – with a vengeance, as they say. I guess because of Covid. Plenty of breaks in routine and strange people. Months without seeing mama or daddy. Changing visits – first we can’t go off campus, then we can, now we can’t again. I suppose we were due for this.

First, there is a mountain. Then there is no mountain. Then there is.

Since the rise of Covid, I’ve gone from walking 2 miles a day on the treadmill to painting 2 rocks a day to meditating 2 times a day. I guess I’m still walking and painting, just not as much.

On my 51st birthday I started using this app I found called Serenity, which has 10-minute guided meditations. The first 7 are free; after that I was hooked, so I bought a 6-month subscription for 20 bucks. I don’t think I’m alone in saying meditation has always been difficult, the few times I actually tried it. My monkey mind provides a near-constant self-narrative comprised of visiting the past, predicting the future, critiquing myself and others, recalling song lyrics, movie scenes, and conversations, etc. But what I am learning allows for all of this. The goal is not to yank your mind away from the chatter but rather let it flow, gently guiding your mind back to the breath, back to the breath. I am breathing in. I am breathing out. I am breathing in. I am breathing out.

Repeat.

But there is so much more. Serenity teaches different ways to explore your mind – visualizing thoughts as words or pictures on a screen, recognizing types of thinking patterns as they occur to prevent fusing with them, practicing gratitude, fostering compassion, allowing both body and mind to rest. Stretch your arms, wiggle your fingers and toes, she says in her (Australian?) accent at the end of each meditation. I’m on my way to enlightenment, guys, 10 minutes at a time and enjoying the journey. I never thought I’d look forward to meditation but I definitely do, and find myself carving out more and more time for it.

Then I read Lovingkindness: The Revolutionary Art of Happiness by Sharon Salzberg, and learned how to send metta to myself and others. Then I read it again, and bought copies for 3 friends. I encouraged my peeps to try the Serenity app – I think there are 5 or 6 of us doing it now. It feels so good. What’s not to like?

I’m learning ways to sit in meditation on my own, unguided, each time creating larger and larger pockets of “silent mind.” It has been transformative. I think the greatest benefit is the cultivation of mindfulness. I practice noticing emotions as they rise and placing distance between them and my action/reaction or speech. I practice doing what I’m doing and being where I am – two things with which I’ve always had difficulty.

For example, when I am doing the dishes, I need to just do the damn dishes – not thinking about what I’m going to do after I do the dishes.

Now I am breaking it down even further… to just pick up a dish, then just pick up the sponge. Then just reach for the dishwashing soap, then just apply the sponge to the dish, and so on. Each task – and each piece of that task – met mindfully. What I used to write off as clumsiness really was me just throwing myself from task to activity without really ever thinking about what the hell I was doing.

In addition, I was rushing through Monday to get to Friday. Rushing through dinner to get to dessert. Rushing through things I thought of as “bad” to arrive at others I have labeled “good” – when all the while there is only the present moment. There is only now.

Ahhh, Daniel-san. If do right, no can defend.

I crack myself up with these eureka moments when I think I’ve got it all figured out. Go ahead, laugh. I’m laughing too.

When things ring true, though, I can’t deny the truths. I feel as though I am approaching life from a place of greater piece. And I can’t deny the results, even though I only have the faintest comprehension of the process. It feels good the way the walking and the painting feels good –and then some.

I come back to the breath, back to hope, back to love.

Repeat.

We can finally take Jonah off-campus, so I’ve been driving down on Saturdays to visit. Andy and I pick him up and take him to the apartment, just like before, only now we get our temperatures taken and answer a series of health questions at Jonah’s house before they bring him out. No visitors are allowed inside, ever. Anderson’s done a great job of keeping its employees and residents safe.

For a while, before they allowed us to take him off campus, we talked them into letting us put Boo in the car and drive him very slowly around Anderson, winding in and out of large empty parking lots and campus roads, passing the same people over and over, a placated Jonah directing the radio and CD player. It reminded me of that scene in Rainman where Raymond drives around the circle in front of the casino.

Maybe someday we can let Jonah drive slow on the driveway. Here’s to hoping.

We’ve been grateful Briana is such a caring, responsible, hardworking manager and caregiver. I know Jonah’s house isn’t an easy one, and there have been a lot of staff changes. That’s never easy for Boo; his 18-month long ‘pendulum swing’ of no aggressions is over. A few times now he has become very upset and attacked staff.

One pair of broken glasses. Two people bitten. Three takedowns.

We expected this – or Andy did, at least. I had imagined Jonah crossing a red-ribbon threshold to a future devoid of aggressions and attacks. But we’ve been through all this before. I know now the only thing we can count on is change.

It’s been hard for everyone, this brave new world, much harder for others than me. I see my privilege – white, wealth, and every other way. I work both my jobs from home, driving in to the office just one day a week – and even then, I’m alone. The office building is a wasteland of social distancing and no people, of mask signage and no one to cough. The cafe is closed. Construction workers are tearing the old empty bank space apart to make smaller office spaces – for whom, I have no idea. They crash and bang and grind and saw while I sit there by myself. It becomes surreal.

Everything is surreal now. For an old hermit like me, it’s not too difficult, really. I don’t have to leave the house, and nobody bothers me. My animals stay close by, and I put musicals on TV as backdrop for my workday. I’ve discovered Hamilton and re-discovered Rent. Today it’s The Sound of Music. I’ve started reading again, which usually means listening to audiobooks; my eyes are tired and strained. Right now I’m tackling Les Miserables, which might not work because the French names are so hard to distinguish. Who am I hearing about now? Wait, wasn’t that the other guy? It would be easier if I could read the words on paper. Maybe I’ll try something shorter and less, well, miserables.

Also I’ve been painting rocks with acrylic pens. A lot of rocks. Many many rocks. They piled up, naturally, and so I started hiding them all over the neighborhood. I place them in trees, on playground equipment, at the bus stop. I send them to friends, leave them for the mail carrier, gift them to people who may or may not want a rock painted by the neighborhood crazy lady.

It has kept me busy during all the Groundhog Days, especially those early first weeks of working from home. Now I’m on to painting alphabet and chess sets. I’m even tossing around the idea of opening an etsy shop. I’m no artist, but I’ve gotten better since late March and I reckon I do about as well as anyone else selling decorated stones.

Plus there is a meditation in it. When there is day after day after day of the same, I need the creative outlet. I can’t imagine a life where I am not painting and writing, dancing and collaging, arranging stones in streams and acorns on paths. They say the writing saves the writer; that feels about right with all the things I love to do.. I play my little drum and I grow a small garden (sage, cilantro, and parsely) and I bake banana bread. I paint my rocks and gift them to the universe, usually with little messages on the back: YOU ROCK or ROCK ON; SHINE or RISE or JUST KEEP SWIMMING. I hope I am adding some good to this world. I aim to, anyway. Plus be a good mama to Boo. That’s enough for now.

Everything’s untouched but forever changed.” ~ OK GO

Hang in there, my peeps. We’re all in this together.

These I did for Jonah’s house…one for each kid, placed in the little garden out front.
Jonah’s is the whale, of course!

surfacing

Funny how last time I wrote, I was already complaining about not seeing Jonah, about feeling shut in, about the brave new world.  It had been 20 long days since Andy and I were with him, celebrating his 18th birthday.

It would be 92 more days before we’d see him again.  

Last Sunday, Father’s Day, I finally drove down to Andy’s apartment and together we visited Boo on the Anderson campus for a scheduled hour.   We brought masks, hand sanitizer, 2 new pair of swim trunks, bubble & balloon toys, 2 McDonald’s chicken sandwiches (no lettuce extra mayo), and a sugar jelly donut from Dunkin’ Donuts, nutirition be damned.  It was Thanksgiving and Christmas and the 4th of July and everyone’s birthday and Mother’s and Father’s Day all rolled into one.  We were there with him in person.  This called for celebration!

Jonah’s house manager and primary caregiver, Briana, set up a picnic table in the shade – she’d thoughtfully brought me a pretty potted verbena flower and hooked Jonah up with a big tub of gummy worms.  She’d waited until just a few minutes prior to tell him we were coming.  Confused, he headed for the office where he always sat for video visits.  No, she told him.  They’re coming here to see you!  He didn’t comprehend this, and we were wary, not sure what to expect.  

Near the front door of the house, she followed Anderson’s careful Covid screening protocol, taking our temps and asking us questions about symptoms and exposure.  Then she went inside to get Boo.  When he first came out, he looked at Andy, then me, then Briana, then me again.  Mama, he said flatly, eyes narrowing, walking over to us.  Briana walked with us to the picnic table to make sure everything was cool.  Thankfully, it was.  He loved the food and sat happily eating while I showed him one of the balloon toys.

He did ask for car ride repeatedly, but we kind of expected that.  They haven’t approved off-campus visits yet, so we tried to make do by bringing the car near and letting him sit in it, music on.  We figured he’d want to stay sitting in the car for the whole rest of the visit, but then Andy suggested a walk and Boo was all about that.  He jumped out of the car and started off happily.  I jogged to catch up, and the three of us walked through the campus, passing picnic tables where other families visited with their kids.   

It was God-awful hot – a choking, shimmering kind of heat that reflects on pavement and feels like a heavy weight.  Seemingly impervious to it, Jonah led the way, the 3 of us circling past the pool area and back to our shady spot.  Every so often we’d hear a screaming screech or see a kid running, not sure if they were happy or freaking out.  I reckon there were some residents who got really upset when their families didn’t take them off campus.  We’re grateful Jonah seemed to understand we would be back again soon, though he did require constant assurances.  Daddy’s coming in 6 days, Andy told him.  Ree-pee (repeat), Jonah said.  Daddy’s coming in 6 days, Andy told him.  Ree-pee, Jonah said.  And so on.  Yes, Boo.  We’ll be back.  Of course we’ll be back!

Before our visit ended, Andy and Jonah took a second walk and I packed up our stuff.  I watched them stroll away, happy to see Boo looking up smiling at his dad.  He did well, really well.  And when we said goodbye, he walked back in his house without fanfare. 

Whew.  

Andy’s visiting him again today, and tomorrow I’ll drive down and we’ll both visit.  We’d love to take him on a home visit but we’ll take what we can get, knowing Anderson is putting safety first at every turn.   I can’t say enough about Anderson’s staff, from the president on up to the direct caregivers themselves.   But that’s another post, which I’ll make soon.  With photos and news of what I’ve been doing to stay sane since Mid-March. 

But here are a few pics of Jonah from the months when he couldn’t be with him:

The swimming one was taken just two days ago, when they finally got approval to open up the pool.  Briana texted me the photo right away and told me he was very excited to be back in his element!  Still a fish, my son.  I’d love to get him back to the ocean eventually.  But, you know, one step at a time.  

We’re surfacing here in New York State, a little.  Cautiously and masked. 

Onward ho!

20200626_075429

by the numbers

“Most human beings have an almost infinite capacity for taking things for granted.”
― Aldous Huxley, Brave New World

As of this moment:

Coronavirus cases
World- 642,238
US – 113,677
NYS – 52,318
Dutchess County (where Jonah lives) – 225
Albany County (where I live) – 176

Days since I have seen Jonah:  20

The numbers of it – ever-changing, sometimes doubling, stretched over time.  Time that’s begun to lose its meaning for me, told to stay put, working from home, staying almost entirely in the house.  Even my doctor appointment this week was a video call.

20200327_154817 - Copy

Jonah turned 18 on March 7th.  I’m grateful I got to see him on the 8th and sing happy birthday with cupcakes and candles.  Of course I didn’t know it would be the last time I’d see him – for how long?  I don’t like to think about how long.

Anderson is on lock down.  The school building is closed.  If you take your child off campus, you must keep them off campus.

Who knows anything about this new normal and how to move forward?  The only way out is through.  The uncertainty is unsettling.

For some people, it’s just boring.  They are mildly inconvenienced.  For others it’s a nightmare.  Maybe even hell.  If we were trapped with Jonah back when he was attacking all the time, I’m not sure we’d all survive it.  I feel for those whose pain, risk, or danger are manufactured or magnified by this Covid-19 culture and reality.

I think about domestic violence victims and waitstaff and nursing home residents.  Parents whose kids are out of school, scrambling to plug in help.  All the small business owners (and everyone) out of work. Out of sorts. Out of toilet paper.

Everyone who lives alone…people with mental illness who feel trapped, or frighteningly disconnected, or uncontrollably anxious – and those with other disabilities, like people who rely on ventilators who must anticipate being de-prioritized if the shit hits the fan.

That there are discussions at all regarding which individuals would get ventilators or medical treatment is frightening in a personal way, of course.  Of what value to society is my son?  Would I ask an average young adult to give up his ventilator so Jonah can live?  What about someone in prison?  In prison for what?  You can go right down the rabbit hole with this, but I won’t.

One thing at a time.

Forgive me my rambling ruminations.  I’m one of the mentally ill folk, neither panicked nor complacent…but very much longing to see my son and my mind all over the place.

I haven’t been away from Jonah for 20 days since never.

So far I’ve had two scheduled video calls from him, with the help of his head caregiver, Briana.  Hi, Bunny! I say, glad to see him wearing the cool blue shirt I got him, the whole front a wolf’s face.  We look at Amazon wish lists together so he can pick what toys and things I send.   I don my happy mama smiles and tell him I miss him – but in a bright tone that implies that everything is FINE.  He is mildly interested, I suppose.  I wonder how much of this he understands and I feel grateful anew for the void of aggression and violent behaviors.

When we hang up, I sit in stillness and close my eyes.  The last image of him fades.  He looks good, my Boo.  Handsome and older.  Briana and the others take very good care of him.  God knows he isn’t easy.  He shadows his favorite care givers for hours, relentlessly present.   No longer a danger, though.  No longer a ticktockticktock time bomb.  The pendulum is smashed.  I’m sure of it now because it is necessary for me to be sure of it now.  I trust completely those caring for my only Boo.  What else is there for Andy and me to do?

Sometimes I deliberately call to mind the scent of the top of Jonah’s head.  The way his hand feels in mine.  His voice, half request and half demand: more kiss?   I hold tight to the joyful memories in which he is laughing and silly or loving and cuddly.

After both calls I allowed myself to cry a little and feel the feelings of missing him, but I do not allow myself to wallow in it, nor become irreversibly afraid.   When the future is a question mark, I flow with the ellipsis of today.  It works, most days.  The danger of the ellipsis, though, is its very nature.  An ellipsis implies more to come, – a more we don’t know yet.  An omission.  There’s no certainty, no finality, no beginning and no end.

Those three dots, like feeling the drag and simultaneously the speed of time in a Groundhog Day kind of way.   Good morning campers, rise and shine!  What day is it?  I ask groggily.  What time is it?  Are my parents okay?  Are there enough masks?  Is there breaking news?  What are the numbers now?  How about now?  What’s Jonah doing?  Did I take a walk this morning, or was that yesterday?  Can I go to bed yet?  Too early for flapjacks?

I’m working two nonprofit jobs from home like a champ in PJs, one cat (usually Gracie) to my right and another (usually Laura) above me, a big old dog (Jack) to my left with his head in my lap.  All pets white, by accident and yet as if by design to fill my home and couch and clothing with white hair of various lengths and thickness – including my own hair, growing in spiky, salt and more salt and a little pepper (it looks darker in the photo).

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The most wonderfully good news is that my best friend Erin is all done with chemo – and it looks like she’ll need just a small surgery, thank God.  It was difficult to witness her attempts to prepare herself for the worst, inasmuch as her soul was willing to do so. The hospital stopped allowing visitors at chemo because of Covid-19, but I only missed the last one.  I think our twisted humor and maniacal laughter, right in death’s face, gave her strength – and me, courage – in a way nothing else could.  Fuck off, cancer.

As for Jonah’s school, they are conducting classes as well as they can in each residence. They structure the days carefully, complete with fun activities and as much time outdoors as possible.  Lots of campus walks for Jonah.   When he seems agitated, the walks work it out.  Anderson’s campus is very large and gated all around it, almost as if constructed for just this scenario.

There are weekly Monday conference calls for the families, with updates.  They are being proactive and careful, and Andy and I are so grateful.  Grateful for a lot of things.  Of course grateful for the amazing direct care personnel who did not ask to be heroes but have had the role thrust upon them, like it or don’t.  We send them snacks and popcorn, cookies and chocolate.  Thank you, we say, in a way that wishes there were better words for what we feel.

A month ago today I was in San Diego at a work conference, basking in the sun on an outdoor porch with two dozen others, shaking hands and sharing spaces.   Eating from the same buffet.  Laughing on the plane.  In just one month, everything changed.  Our very lexicon has changed.  We practice social distancing.  We shelter in place.  We are essential or non essential.

And none of us can comprehend how much a 2.5 trillion dollar stimulus package is.   To help us understand a trillion, which is a million million:

1 million seconds = 11.5 days (a vacation)
1 billion seconds = 32 years (a career)
1 trillion seconds = 32,000 years (longer than human civilization)

Boggles my mind.  Magic money!

I wonder if there is a President Cuomo in our future, ushered in by The Godfather Theme instead of Hail to the Chief.  Or Trump using Coronavirus as a way to justify delaying the election for the safety of America.  Nothing he does surprises me – unless he were to magically become a man of integrity and intelligence.  I guess then my mind really would be blown.

If you’re reading this, I wish you well.  Be safe and stay healthy – you know the drill.  I’ll be back with news of Boo! xoxo

it’s official

I’m officially Jonah’s guardian now, just in time for him to turn 18 on March 7th.  It was expensive, and stressful, and I’m glad it’s over.  Having guardianship of Jonah means I can make legal, financial, and health-related decisions for Jonah for the rest of his life.  Or mine –  though the Clozaril he’s on isn’t exactly a life-extender.

It was the lesser of two evils, the Clozaril.  Still an evil, though, in that it cost our boy some of his personality and vibrancy.  I don’t know how much, really.  Correlation does not necessarily imply causation, but when the aggressions disappeared, so did some of his abilities.  Some of his spark.  That same spark fueled a raging fire, and we had to put it out.

We rose from the ashes, Andy, and Jonah, and me.  Changed and bruised for sure, but all intact.

Jonah and Mr David 2020 Jan

That’s Jonah a few weeks ago with his teacher,  “Mr. David,” who makes Jonah look very small here, though he’s 5’9″ and still growing.  We love Mr. David and are thrilled Jonah’s in his classroom.

As always, on our Sunday visits Jonah wants a car ride, then to raid dad’s fridge while The Jungle Book plays on TV, and afterward take a nap with mama.

And the boobie? He asks, more of a statement, as he tries to stick a hand down my shirt.  No, I gently tell him, guiding his arm away.  Boobie’s closed.

I hesitate to share anecdotes like this but they are realities and so I risk the critics’ judgement: napping next to my teenage hormonal disabled son might seem icky or weird.

To me it isn’t weird at all.  It’s nearly all I’ve got of him.  Once I redirect him from the boobie, he curls into a loose fetal position, pillows piled over and under his head, content to rest.

This time is precious.  It belongs just to Jonah and me.  I can listen to him breathe,  I put my hand on his back, feel its gentle rise and fall…send love and happy energies to my sweet son, the almost-man and never-man and ever-child all in one.   He sleeps.  Sometimes I do too.  On the drive home I smile and feel grateful.

I am not over-religious but it has been 15 months since Jonah’s last real physical aggression and it’s as much a miracle as any.  Deliverance and grace.

Oh – and yeah, so my hair is gone.

In the fall my best friend Erin was diagnosed with stage 3 breast cancer, so we cut  our hair off together and are fighting tag-team style.  I’ve shaved my head twice and am due for a 3rd time – we’re going to grow it back together, but she’s got 7 more weekly chemo sessions before that’s gonna happen.  Tomorrow I’ll meet her at the hospital with cupcakes and party hats, and we’ll sing happy birthday to Laura Ingalls Wilder while the poison that kills the cancer drips into her arm.

Our laughter is loud, our gallows humor inappropriate.  Two weeks ago we were shushed when Erin started Singing Martha Wainwright’s gem, You Bloody Motherfucking Asshole.  Guess who turned Erin on to that one?

It is a kickass song.  We sing it to the cancer, and to some other people who shall remain nameless.

Losing another best friend is not an option.  Not to make it about me, but sometimes I think I’m just as scared as she is.  I steel myself and go in laughing every Friday for her chemo – last week I spilled a full coffee all over the place; it splashed on her ass and she told every person we encountered for the rest of the day.  We banter and bitch and laugh and rage.  Often we say the same word at the same time…so precisely at the same time that it sounds like one voice, and any witnesses are a little taken aback.  It happens so much you’d think we were twins.

I love having a best friend.  That easy, unmistakable connection of kindred spirits is a rare find.  She is the one who researched for months until she discovered my bio family, when I had hit a dead end.  I have 4 sweet sisters and brothers because of her, and in March I’m flying to Phoenix to meet my bio dad and his wife for the first time.

Gifts from Erin, all of them.

So far, being 50 feels like freedom.  The pressure is off.  I finally left some consistently negative people and things behind.

Now I go where the love is, surround myself with friends and family who affirm and accentuate the positives.  It becomes a matter of survival, walking away from those who offer only criticism or cruelty.  My mental health teeters and wobbles.  Can’t afford to drift into old patterns.  Won’t give up, though.  Won’t fall down.

Groundhog says an early spring.  Bring it on.

40 is the old age of youth, and 50 is the youth of old age.   ~ Unknown

I’ve always said that raising Jonah through all the violent aggressions broke Andy and me; it was impossible to come out the other end of it whole.  This autumn and winter marks 9 years since the worst of it, when first Andy, then I, went to Four Winds Mental Health Hospital.  Nearly a decade later I stared down the barrel of 50, feeling like I was breaking all over again.

There’s something definitively downhill about 50.  More than likely, I have felt as good as I’m going to feel and I’ve looked as good as I’m going to look.  The days and seasons come at me quickly, cycling faster with each passing year.  They leave me tired, despondent, and coping with fun new things like joint pain and hearing loss (I was a child of the 70s and 80s, and we liked our music LOUD).

But none of that is what broke me again.  Not really.  No single event or circumstance brought on the breakdown.  The truth is always more complicated.  And sometimes the thing that finally breaks you is the one you don’t want to admit…something you suspect wouldn’t have broken a stronger person.

Jonah is a source of joy, as if by magic.   It’s been a full year since he hit anyone.  There have been days of agitation and distress, but no aggression.  None.  The teacher in his new “high school” class sent me this beautiful picture of him just yesterday, loving on his caramel apple and beaming.

Every Friday there is good news from his teacher – these go backward in time…

This week Jonah was his happy, fun, lovable self. Today we made caramel apples and Jonah loved it.  I have this great picture of him. This week we did coin counting, handwriting, pumpkin decoration for a contest, recipe, grocery shopping, and made Halloween slime. 

Jonah was terrific this week. We read an interactive book today called An Old Lady Who Wasn’t Afraid of Anything and Jonah loved it. He was doing all the moves along with the book – I wish I got it on video. This week we did handwriting, recipe, learned about how to conduct a experiments, and read aloud with reading comprehension.

Jonah had another terrific week. This week there was a lot going on for Jonah, including appointments and changes in the schedule. Jonah took them extremely well.  He was a real trooper. This week in class we learned about fire safety, Halloween, did addition and counting, handwriting, and grocery shopping with recipe. 

Jonah had a tremendous week overall.  He was very attentive during the activities and lessons throughout the week, which I love to see. He has also been accepting many of the changes that are happening in the classroom. Words can’t describe how proud I am of him. He also has been listening to new songs at the end of the day like Maroon 5 memories and maps.  This week in school we learned about Halloween safety, handwriting, counting and addition, spiders and insects, and made guacamole for recipe.

And so you see our boy is bright and happy, learning things and having fun.  It’s all either of us ever really wanted.

But this summer I felt depression like a heavy stone I carried every day.  I hadn’t used social media in a few years, but remembered how fun the hashtag games were.  So I logged back into Twitter and stumbled across a group of people, led by a multi-millionaire, all working together to donate to Go Fund Me campaigns.  All trying to spread kindness.  I told the leader of the group I had been feeling suicidal before I found them – that they had done nothing less than restore my faith in humanity.  He even tweeted about it, though he didn’t identify me.  Many, many people came forward to support me on that thread, though no one knew who I was.  Concerned strangers tweeted their concern, love, and kind thoughts.  What an amazing feeling to be a part of this online family!

Every day, more and more people pleaded for help out of desperate situations.  I’m not wealthy, but I have enough – and some of these people clearly didn’t.  I gave what I could. Everyone seemed to want to help; soon we called ourselves a team.  It was fun and exciting for me to participate.  My heart was full of shared selflessness and genuine compassion.

I started to feel a little better.  Finally, I’d found a place were everyone pitched in to help others, no matter what anyone’s politics, religion, or any other label.  The team filled my days with purpose and a way to move forward, bolstered by a new support system of strangers from all over.

Then the group leader started giving away money randomly to everyone who re-tweeted his messages.  I noticed I rarely saw the winners commenting.  Wouldn’t they publicly (and loudly) thank him and the team?   And when the rare person did say that they won, it always seemed they were someone in dire need.  These “random giveaways” started to feel carefully chosen.  While searching his name one day, I noticed a post criticizing him.  I commented that I had been wondering myself if his “random” giveaways were really random.

When I logged on to twitter the next day, I was blocked from the leader’s page.  At first I was confused.  I contacted some other “team members” to ask what was going on.  One told me to be patient, that he was busy with other requests.  No, I responded.  I wasn’t there to ask.  I’d never asked for anything.

My protests fell on deaf ears.  In fact, most people didn’t answer me at all.  One told me I sure didn’t “win any points” with my comment asking him if contests were random.   I remember angrily responding that I wasn’t there to win points but to be philanthropic.  I was completely humiliated.   Being blocked felt like a massive betrayal, especially since all I had done was give to his campaigns.  The team that had been holding me afloat was suddenly gone.   I felt stupid and useless. I began to drown again.

I’m embarrassed and ashamed by how profoundly I felt the indifference and how distraught I became at the abandonment.  One day we’re all in the twitter feed professing our love for humanity and each other.  The next day, no one will talk to me and in fact I’m banned from participating in the collective philanthropic efforts and “random” giveaways.  All these people who cared so much when they first heard someone was suicidal…where were they now?

I found some small consolation in learning I wasn’t the only one.  A growing number of others are wondering what the hell is happening.  Many are telling their stories.  As it turns out, this rich guy seems to have a narcissistic personality, cult-leader mentality, and master plan for moneymaking which involves ingratiating behavior designed to gain followers and funnel people through a specific payment service.  And that’s really just the tip of the proverbial iceberg.

The part that really bothers me is all the team members struggling, hoping against hope he will help, worried they’ve been forgotten or that nobody cares.  Many actually deify him, say they would die for him – and now even contribute to an ambiguous legal defense fund, ostensibly against those who seek to “destroy” him.  Some of his followers have vowed to protect him against we “haters” who even, according to a recent post, are trying to attack Christmas itself.

He’s also using several simple, effective psychological techniques to weed out those who question anything.  This is going to sound very familiar to anyone involved in the team.

From online Psychology Degree info: 

Cults are attractive because they promote an illusion of comfort.

Those with low self-esteem are more likely to be persuaded by a cult environment.  New recruits are “love bombed.”

Cults maintain their power by promoting an “us vs. them” mentality.

Cult members often have no idea they’re in a cult.

I could go on and on with this.  There are other issues.  For example, anyone he blocks is ineligible to enter his giveaways (we don’t even see them happening) – and that’s illegal.  I filed a report with my state attorney general about this.  

Please make no mistake – I’m not out for revenge.  Other than psychologically, I wasn’t really hurt.  I don’t need money and can practice philanthropy on my own.  I am telling this story in the hopes that others will read it and come to understand what’s really happening.   There are charity review sites like Charity Navigator with details about vetted and registered 501c3 charities, where your donations are far better spent. 

If you’re on the team and seeking help, understand your chances of getting the help you need are very slim.  I invite you to DM me, or contact me here, and I will do the best I can to research genuine resources to help you. Whether you are trying to help or are looking for assistance, I  recommend Modest Needs, a 4-star registered non-profit where requests for emergency financial help are carefully vetted and then crowdfunded.  

Whatever the reason for his blocking me, some broken thing inside me broke more that day because of it.  My 50th birthday came and went with little fanfare.  I felt just as hopeless as before, only now I also felt deserted.

More sadness.  More disappointment,  More feeling worthless and self-pitying.  I was crying uncontrollably at random times during the day – crying at my desk at work and in my car while driving.  Crying myself to sleep – or, more accurately, laying awake crying at night.  I know this is pathetic.  And I hate that I know how pathetic it is.

I had a yearly physical on September 5th.  When I arrived, I couldn’t even make it through the check-in process without breaking down in tears.  In the exam room I sobbed to the doc and explained how awful I was feeling and why.  Gently, he suggested I go back to the hospital.  A revulsion of feeling washed over me, though I didn’t recognize it as relief until much later.  It’s as if I had been searching for permission to go back to the hospital, and he gave me that permission.  So I spent from September 5-13 in Four Winds Hospital.  Again.  And, just like the first time, it was the best thing I could have done.

People think of the mental hospital as somewhere you end up – a collection container for the insane.  While it is true that the stigma of mental health treatment is less awful than it was 9 years ago, the idea that hospitalization equals the bottom of the barrel is still alive and well.  There’s also still a stigma.  If you go to the loony bin, you must be crazy.  Crazy Amy.

Truth be told, just about everyone I know could use a week at Four Winds.  When you arrive you turn your phone in, bond with others there who are also suffering, and get therapy both one on one and in groups.  You just work on you.  That’s it.  It’s not easy, and God knows I could have better spent the $750 co-pay and precious days I had to take off from work, but I came out the other side with a better sense of how to move forward and a better understanding of myself.  I learned things like assertiveness skills, how to deal with intrusive thoughts, and how to recognize the tools co-dependent people use to control you:  Guilt. Anger. Gaslighting.  I emerged better equipped to live in this crazy-ass world that gets crazier by the day.

Good thing, too, for life was about to throw another couple curve balls.  But this post is already long, and I’m tired of bitching.  I’ll tell the tale later.  Mostly everything is better, I am feeling stronger, and my mind and heart are healthier.

I have more to be grateful for than upset about.  And being 50 isn’t so bad.  I feel younger looking than people who are 50 used to look, and I’m still healthy enough.  No more migraines, no aggressions from Boo, nobody trying to guide my giving.  Sometimes the lack of something is as valuable as the presence of something else.

We wish and hope and pray for this or that, but rarely do we glimpse the good in what isn’t happening.

Now I see it.  I see it all the time.

The comeback is always stronger than the setback.

“We circle chairs until the music stops
Until it ends you got to open up your heart…
Everybody’s got it hard
We’re built and then fall apart;
We’re all terrified.”  ~ Guster 

 

transformer

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.

 

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

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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