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distances

 “Heavy as the setting sun; yeah I’m counting all the numbers between zero and one.”
~ & Run, Sir Sly

I have managed one video call and two in-person visits with Jonah since Christmas – once, like before, at the Visitor’s Center on the Anderson campus, with similar success. Last time, I asked him every so often if he wanted more video or to go back to his house. More video, he kept saying, until our time was up. This time, he wanted to leave about 30 minutes in.

20210115_121025 He smiled when I asked him to, but his real resting face is far more disinterested…

20210115_121024

He was very half-hearted about his McDonalds, too.  Meh.  Then he said “go poop,” and proceeded through the swinging door into the bathroom.  I hesitated, unsure how much he could accomplish in there by himself, post-poop.  At Andy’s apartment it was standard procedure for Jonah to go directly from the toilet into the bath tub.   I gave him maybe 30 seconds, then called “boo?” and walked in.  He had all his clothes off from the waist down – shoes, socks, sweatpants, underwear  – all in a pile on the floor.  “Help wipe?” he asked, offering me his backside.  I was pleasantly surprised that he’d done this to the best of his ability already, so my efforts were more symbolic than necessary.  He washed his hands and dressed quickly, resuming his position on the chair with Jungle Book playing on the TV.  I’ve since ordered him a few train documentaries to try; I’m not sure if he’s as into trains as he used to be.  He can hear the train’s whistle from the school, though he hasn’t been on a car ride to see one in ages.

When Boo decided he wanted to leave, he meant right now, though he waited with something like patience for me to gather up our things and follow him out the door.

The second time I got to see him was at his regular glaucoma appointment up here in Albany.  As usual, two Anderson team members accompanied him; I had gotten special permission for two of us to go with him into the office, given his history of violent episodes there.  He did wonderfully, though, and sat willingly through various exams and machines, used to this routine.  He even wore his mask while the doc was in the room.  She said his pressure was high in his left eye, but that’s his blind eye and not of as much concern as the “good” right eye.

20210107_085258 It wasn’t until I took this photo that I noticed he had two different shoes on.  I know the staff at his house are helping him get dressed very early in the morning for these morning appointments.  It takes 90 minutes to get there, so they’re helping him put on his clothes in the dark.  I was a little annoyed by his 2 very different shoes, but no big deal.  Then I looked at the shoes more closely, though, and saw that one of the shoes wasn’t even on the correct foot.  Try walking around like that.  I was disappointed, to say the least. I could tell that the team members there were embarrassed, but they’re not the ones who ensure he puts his clothing and shoes on correctly.  Thank God my mother doesn’t come to these appointments anymore; there would have been hell to pay.  I took it in stride, however, pun intended, and simply told Jonah’s house manager about it; she assured me it wouldn’t happen again.  She’s awesome, and I’m sure it won’t.

But at the heart of this is a reality I don’t like to think about.  His violently aggressive behavior, often out of nowhere, is at the core.  For example, it’s not that I think the staff person who put his shoes on is incompetent, or even lazy.  It’s that they probably didn’t put on his shoes at all.  Likely he was left to dress himself, lest he attack them.  For female staff especially I envision they’re giving my son a wide berth at all times.  Sometimes I imagine him largely left alone, distanced and unengaged out of fear, and it brings a sad desperation to my thoughts.  He’s still doing well in school, I offer myself in an attempt to self-soothe.  It won’t always be this way.  I know several people there who love him.  Briana loves him, is amazing with him and for him.

Then a nurse called me one day last week to tell me his clozapine levels are very high – 869, to be exact.  A quick Google search tells me a range of 350 to 450 ng/mL is considered high, which was alarming.  High levels are associated with greater risk of seizures along with a host of other possible effects.  So the immediate plan is to lower his 11:30am dose.  It isn’t an easy decision because clozapine (aka Clozaril) is the only thing that’s worked to mitigate his aggressions, which are infrequent lately but very severe.  Pre-Covid, he had 18 months with no aggressions, I remind myself.  I thought they were gone altogether.

As an aside, it took me far too long to figure out how to post this using the “classic” editor.  I think the new one is awful and clunky.  I’ve lost my patience and most of the energy to write.

I’ll probably try to see Boo again near his 19th birthday on March 7th.  I haven’t heard from Andy, though I know he talks to my mother on the phone once in a while.  This sometimes feels like betrayal in a couple different ways.  But their relationship isn’t my business, and if I resent it, that’s my problem.  I’ve been depressed in the way we all have since the pandemic dropped its curtain on the play.  And in that tired-of-winter way, where everything is ice and slop and slog.  Now, also, like some archetypal Helpless Mother, unable to intervene on her child’s behalf or orchestrate a future where his health and everyone’s safety coexist and neither need be compromised.

20210214_151519Getting outside keeps me sane.  Three times so far this winter I’ve donned snow pants and boots, hiking poles, and sometimes crampons, to tackle a few different Catskill and Adirondack trails.  Most recently it was a long loop trail at aptly named Amy’s Park near Bolton Landing, which was a steep hike up in the beginning and a test of endurance after that.  The trail is rated moderate but that’s without 20 inches of snow and ice to tromp through.  Granted, there were footsteps to follow and a well-marked path, but by the end of it I was damn near using my poles as crutches.  Took 5 hours to go up and around that lake.  I bitch in jest, though, for it’s saving my soul and spirit to be in the wonderful woods, all silent and piled with snow.  At first I feared I’d shiver in the cold, but so long as there’s no wind, I’ve yet to be chilled despite temps sometimes in the teens.  Hiking is a workout, and you stay quite warm just moving along.

20210214_091453

See how the snow has crafted a feather from this conifer?  All over the forest, Winter makes subtle shapes and images with an artist’s hand.  In places, I see boughs and branches pressed down where deer have made a recent bed.  Sometimes trees have scattered holes drilled deep by woodpeckers, and along the marshy lake, young saplings lay victim to beaver teeth axes.  The poetry of nature humbles me and brings calm.  I need to remember how much it helps, lest I stay hermit in my house.  So easy to stay hermit, working almost entirely from home.  So easy to live one Groundhog Day after another.  So easy to lose hope.

If you feel this way and are reading this, please know you’re not alone.  This too shall pass.  Spring is coming, albeit slowly.  It’s science.

Hang on and forge ahead.

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merry christmas

From our family to yours, with humble thanks for your support and encouragement throughout this and every year. It means more to me than you’ll ever know.

A special thank you to Briana for the wonderful photo of Boo!

Love,

Amy & Jonah

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the newest normal, part 2

The story has a better ending than beginning, fear not.

After talking to Briana, I scheduled both a zoom call for Wednesday the 16th and a campus visit on Friday the 18th at the visitor center. When the time for our zoom call rolled around, however, Jonah didn’t want to talk and of course we didn’t want to force him. I began to question the wisdom of the in-person visit and was further distracted by a huge snowstorm that dumped more than 2 feet of snow Wednesday night into Thursday.

But then I decided to try it. Nothing ventured, nothing gained. I knew I’d need someone with me – someone relatively strong, reasonably brave, willing to be attacked, and ready to sacrifice half their day to this endeavor. The list of people fitting this description included two obvious choices; when the first couldn’t do it, the second stepped up. And so it came to pass that on Friday, December 18th at 2pm, I arrived at Jonah’s house armed with my companion and a 2-cheeseburger meal from McDonald’s. Briana brought Jonah out and escorted us to one of the village center’s second floor “apartment” doors. As she unlocked the door and let us in, Jonah immediately threw his coat on the floor, but she wasn’t having it. After her admonishment, he picked up his coat and put it on the couch. Briana gave a thumbs-up and left us to our visit.

The mock apartment included a spacious living room area, complete with a large TV and DVD player, a couch, loveseat, and some single chairs. At one end was a window, and by the window a small table and chairs. Behind that was a kitchen, complete with microwave and dishwasher, garbage can, sink, and cleaning supplies. Across the room from the kitchen was a large bathroom with a swinging door.

When I tell you it was the best visit I’ve had with Jonah in recent memory, I don’t mean to paint an extravagant picture. Jonah ate his McDonald’s and watched Jungle Book. I did not give off the please don’t flip out vibe. I brought a large deck of cards, part of a game he wouldn’t care about. He grasped and tapped them throughout our visit.

Every so often I asked him if he wanted to go back to the house or if he wanted more video.

“Video,” he answered each time, calmly. When he wanted more drink, he asked “black soda?” and at one point he said “bathroom” and walked past me through the swinging door to pee. We hung out in the same room. I understood his words. It was beautifully mundane.

He moved once from the big couch to the love seat, content to hunker down and hang out. We’d reserved the room from 2-3pm, but as 3pm approached, it became apparent Jonah was settled in. I texted Briana to ask if we needed to vacate at 3, and when she said yes, I started a 5 minute countdown for Boo.

(He’s holding the cards I gave him)

He did great. I cleaned, packed everything up, and we trooped down the stairs. “Walk,” he said, so I took a side path to extend our time a bit. Back at the house, Briana came out to get him; I managed a quick hug before he went inside.

When the door shut behind my boy, I felt a rush of relief. We’d done it, somehow, incident-free. Maybe Jonah had been in a particularly good mood. Maybe all the stars were aligned, or Divinity intervened. Maybe we just got lucky. Whatever the case, I’m amazed and happy. I reckon I’ll try another zoom call soon, and aim to visit in person again sometime in January.

One note about Andy: He called today and apologized to me, offering a clarification: When he said Jonah didn’t care if I visited him, he meant we. As in, Jonah doesn’t care if we visit. Fair enough. I wish Andy happiness and only the best of everything. I hope we can visit Jonah together someday.

I’ve been crafting with the rocks again, making some into magnets for Christmas gifts. I painted a bunch more to hide in the park.

One day before the snow, I was walking Jack through the park right when the school kids were on recess. Most of them came over to say hello and pet him, and I asked if any of them had seen painted rocks around. They got all excited and started talking at once. Yes! I got an alien! I found a fish!

One girl asked if I was the one who leaves them. I smiled behind my mask and answered yes – and I tell you those kids went freaking nuts. Jumping up and down, running to tell their teacher. One serious lad looked at me in earnest. “I’ve been trying to figure out who it was for weeks,” he said, like he’d just discovered Santa mid-chimney. I was so happy. I’ve been thinking about opening a shop on Etsy, but honestly I don’t need the money and I enjoy the idea of making random people’s days a little brighter.

Before I left the kids that day, I asked them if I should keep putting rocks around the park. YES! YAY! they all shouted in affirmative chorus. So I managed to leave 5 or 6 more before the storm buried everything. I figure if I make more magnets, I can put them on the basketball court fence or street sign poles, high enough to stay out of the snow but low enough for kids to see.

For now I’m just resting in the knowledge that I can see my son successfully. It’s possible for us to forge a path ahead. And really, that’s about all I can ask for from the remainder of this crappy-ass year.

Happy holidays, my peeps. Bring on 2021!

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the newest normal, part 1

Somehow it all fell apart.

We were visiting Jonah and driving “slow on the driveway” and managing okay. Then he started attacking in the car, so we stopped driving him around. Instead, we brought him lunch and did a campus walk together.

Then he started attacking on the walks.

As the situation deteriorated, so did Andy’s attitude toward me. Visits were merely awkward at first. He was quiet, even for him – only speaking to answer my questions, a sharp yes or no. Just before Thanksgiving, I told him I’d be bringing food down for he and Jonah.

“Just bring it for him,” he said.

“You don’t like it?” I asked.

“I. Don’t. Want. It.” he answered icily.

I figured he was in a bad mood, so I let him be. But the next Saturday was worse. My father fell the day before Thanksgiving and was hospitalized, and I’d had a tiring week. Now Andy seemed to be in a bad mood again. On our campus walk he admonished me as an angry parent would a small child, emphasizing the words in a cruel, mocking tone. “Stay AWAY from him. You’re going to get HURT, and then you’ll CRRRYYY.”

Wow. What? Tears sprang to my eyes from his words alone, no attack from Jonah necessary. I’ve never heard Andy use that tone since the day I met him. Never. If this hadn’t happened to me, I wouldn’t have believed it. Andy doesn’t have a mean bone in his body; everyone knows that. And yet here we were.

The next Saturday I arrived in town a little early and called Andy to tell him so, because it was raining and I didn’t know what kind of visit we could manage. Anderson has a visitor center with mock apartments and you can reserve a room, but I wasn’t sure whether or not it had been reserved for us this day.

When Andy answered, I apologized for calling him so early and asked if Briana had reserved a room at the visitor center. He said “I don’t know, you’ll have to call Briana.” I asked if he could please call, because I was still driving. When I arrived at Anderson I parked where Andy usually does, waiting for him to call me back. When he didn’t, I called him again. He was in the drive-thru line at McDonald’s, getting Boo some breakfast. “Did you get hold of Briana?” I asked.

“I left her a message,” he answered, clearly annoyed. Then suddenly he kind of exploded.

“Jonah doesn’t care if you visit,” he told me coldly, almost yelling the words. Then even louder, each word a punch: “He. Doesn’t. Care. The words stung, even as they rang true. I tried to stay calm. The meditation I’ve been learning came in handy just then. I’ve been working on creating a PAUSE between what is happening to me and my reaction to it.

“Okay, well, be that as it may, I’m here now,” I said. “I’m parked over by the dumpster behind the house.” He hung up.

I sat in the rain in my car and watched for him, trying to keep it together. After another 15 minutes, I got out of my car as Briana was pulling in. She was returning from a meeting and had just hung up from talking to Andy. “We don’t have the visitor center room,” she said, “but we’ll make something work. Andy is already here.”

For some reason, Andy had parked up by the visitor center and walked straight to the front of the house while I was parked in the back. Was he even going to tell me he’d arrived? Clearly his intention was to not find me.

By now I was frustrated, cold, and annoyed. Briana told me she’d get Jonah ready and would meet me out front, so I walked up to where Andy was standing on the porch. He said nothing to me. I said nothing to him. We stood waiting as a full five minutes stretched out torturously. The wind blew cold and the silence, colder.

When they finally brought Jonah outside, there wasn’t much for us to do but let him eat his food on the ledge by the porch, under shelter from the weather. We hadn’t planned this out very well, obviously; both Andy and I share the blame for that. Briana tried to help, offering to bring out some chairs. Before any of us could consider this, though, Jonah said “walk” and turned to go. The rain was only spitting by then, so Andy and I followed him.

I tried to talk and engage Boo as best I could, but he was walking so fast I could barely keep up. We’d only walked about 100 feet when he turned to hit me and I dodged away.

Andy looked over at me and screamed GO HOME!

No PAUSE this time. I yelled back. “I don’t like this any more than you do, but you don’t have to treat me like shit.”

And I left. And yes I cried and no he’s not going to mock or shame me for it – or anything else – anymore, because this time it’s mama who is all done. Later that awful day I texted him.

I’m going to schedule zoom meeting visits with Jonah once in a while, instead of driving down. I will call the house each night myself to see how he did each day. When I do visit Jonah in person, I’ll set up the appropriate accommodations with Briana. I’m done speaking to you and being around you. Don’t contact me until you can treat me with respect.

He hasn’t contacted me since, so I guess he can’t.

And just like that, POOF he is gone. Before December 5, we had spoken at least once a day since always. As recently ago as this summer he was joking and laughing with me, reading me the (excellent) mythology he has been writing, gifting best friend Erin and me with hand-crafted mugs for Mother’s Day.

It was not necessary for us to speak once a day, but it was nice to touch base – because he is my son’s father but also because he is my friend. I’m over being angry and hurt; clearly it’s Andy who is hurting. For now, I can hope my absence from his life is a source of peace.

Later that day, Briana and I spoke on the phone about what happened. I tried to keep our discussion about Jonah, not Andy and me. Briana was professional and kind. She reminded me that Jonah hadn’t had a single aggression for the whole 3 months+ when we couldn’t visit because of the Covid lockdown this past spring. That’s true, I admitted. He did do well.

She said maybe we could try Zoom visits and less frequent in-person visits. That worked out nicely before. That’s true, I said. It did.

Later, I thought about what Andy had said: he doesn’t care if you visit. That’s true, I thought. Andy might have told me so in a nicer way, and maybe it’s not entirely true, but yeah. He probably doesn’t.

And then I remembered what it was like to go away to college, almost exactly the same distance away from home. I sure as hell didn’t want my parents up my ass every weekend.

My son is 18 – but because of his disabilities, it’s been easy to treat him like a perpetual child. Maybe I’ve been doing him a disservice this whole time, both in the way I regard him and in the way I inflict myself upon him. I’ve been so doggedly determined to drive to Rhinebeck and visit for the smallest amount of time under the crappiest circumstances – and for what? For him or for me?

Or for others – relatives and friends and the imaginary judgmental society watching to see what kind of parent I am. If I am a mother who visits her child regularly.

Do I care so much what others think that I’d adjust my own logic to fit their expectations? Do others expect anything of me at all? Does Jonah?

My mind goes in circles. I am reminded I am mentally ill.

I tell myself I’m thinking and

attempt to

rest again in the breath.

And then came a solution.

To be continued…

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asking for your help

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.

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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 peace. 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.

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slow on the driveway

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!

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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

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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.

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Jonah April 2019

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

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

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

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

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

Jonah:  Car ride?

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

Jonah: CAR RIDE!?

Maybe Jonah will kick his ass for good measure.

Just kidding.

Kinda.

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

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

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

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

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

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

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

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

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

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

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

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

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

Doesn’t everyone do this?

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

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

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

For those of you waiting for a boot update:

I found it.

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

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

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

The Universe is Puck, playing games with us all.

Happy Sunday.

Spring is here!

 

 

<—  Me, Easter 1973.  Age 3 1/2

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