So many people I know are hurting — facing anger and trauma, fear and sickness and pain. In so many ways it feels like we’re all in freefall. I tell myself to face forward…move slow…forge ahead (actually, Guster tells me that – but I am listening). The springtime is coming. The sunshine and warmth. It’s got to help some. I’d like to build a foundation of peace, honesty, and self-love from which to face suffering and elevate my life — and to influence all the people around me positively. I know it takes real work to feel peace, and lately I haven’t been holding up my end of the bargain. I’ve just been feeling crushed beneath the wheel.
Yet here is Boo, having fun, listening to his tunes and laughing and doing his belly-slaps. It makes me happy to watch him happy.
He will be 20 on March 7th, somehow. Somehow two decades went by.
I’m going to make this next part short, because it’s hard to talk about. The day after Christmas, when Briana was on vacation, a staff person allegedly abused Jonah. I say allegedly because there evidently was no witness, and yet Boo was found with a black eye, marks on his face, and bruising on his sternum. Another staff person noticed this and brought it to the attention of supervisors. The Justice Center for the Protection of People with Special Needs, the state police, and the school launched an investigation. Police officers came to Jonah’s house and interviewed staff, and then they interviewed Jonah (though Jonah could not really help – he is not verbal enough, nor does he have the ability to understand the questions or identify his attacker). Jonah does not self-harm. Someone was identified as a suspect. This person was placed on off-site probation pending results of the investigation, and the investigation recently came back unsubstantiated. When I inquired about the status of the suspect, I was told they are no longer employed by Anderson. That’s all I want to say about it, and all I know.
We are moving forward.
Jonah needs an operation to remove some growths on his face and neck, and it’s been postponed twice, both times because of weather. Now it’s rescheduled for April 1st — not a joke. He’ll have to have general anesthesia. Andy is going to be with him. We’ve both been visiting him, though separately. I’d like to visit together but Andy doesn’t really want that. I wish we could be friends again. I miss him.
All I can do is try to be the best friend and relative to the people I do have in my life. And I have so many. I’m so blessed with people who truly care about me. It’s a wonderful thing to know, and to remember.
I weave pot holders on kiddie looms. I practice my guitar. I do paint-by-numbers and make collages and write poems. It’s all creation, and it saves me.
Things are messy. There is a lot I can’t say until it’s all over. I know that might not even make sense, but it’s been so long since I’ve written that I feel the need to give an update, if only to say happy new year…and to tell you my last visit with Boo was a wonderful one. I made food this time – cooked taco meat and brought down all the fixings, and watched my son devour 3 tacos consisting mostly of sour cream. The 2 staff members who were with us ate too, and afterward we took a campus walk (gratefully it was the warmest night of that week, which was otherwise frigid).
As usual, the 2 staff members walked a bit behind Jonah and me. Jonah almost always wants my phone to play music, but this day we held hands and sang 3 Guster songs together instead. In the middle of the 3rd song, he suddenly shrieked with laughter and yanked his coat & shirt up to do his “happy belly slap.” I was thrilled, and comforted, and drove home smiling.
Still I wake every day scared, anxious, and unsettled, as though I’d done wrong or was facing something dark and foreboding. A good friend hurt me terribly and now I feel sick inside, afraid to make myself vulnerable again. I joined bumble and am dating a good guy who plays the guitar and loves music. I own a guitar I’ve never learned to play, so now I’m doing that too. We’ve been hanging out a lot, and we have fun, but I can’t shake feeling uncertain, so I just allow myself to feel that way until I don’t feel that way anymore. I meditate semi-regularly, I walk the treadmill, I do intermittent fasting, I practice the guitar, I try to stay forward-facing. I willfully compartmentalize & ignore the thing I can’t talk about yet.
My parents are getting weaker, older, and more vulnerable, each currently living on their own, and an uncertain future of caring for them as their only child stretches out before me like a looming threat. I don’t know if I have it in me but I’ve got to have it in me, like it or not, for as long as it takes, despite my own shaky mental and physical health.
My heart skips and jumps and races and stops, so I went to the cardiologist and wore a heart monitor for the week after Christmas. My resting heartbeat is more than 100 BPM – and the highest heartrate of that week was 155, just after midnight on January 1st, when I am pretty sure I was asleep, which makes no sense at all. At any rate, now I’m on heart meds too.
Add to all of this a frigid winter and 2 jobs full of work, and it’s enough to send me to bed most days by 8pm, escaping into blissful sleep until the early morning brings its anxiety to drown me anew.
I’m hoping springtime and sunshine will help. It sure can’t hurt.
So I wrote a poem a day for National Poetry Month (April) – and it was a good re-exploration of creative writing for me. It’s been a while (probably 15 years) since I wrote poetry with any regularity. They say the writing saves the writer, so though people will never be knocking down doors to read my amateur poems, they have value for me – as outlets, if nothing else. Or reminders of who I am, what I enjoy. I love writing.com, where I have a portfolio of stuff (as winklett, of course).
Last week I attended part one of the 3-part National Council on Severe Autism (NCSA)’s free webinar series: Severe Behaviors, medical support. It was a unique experience in one particular aspect; for the first time, I was not the one with the most severe autism scenario. I’m used to people who are shocked and/or outraged that we put our son in a residential school. I’m usually the “horror story” of the bunch.
Not this time.
Most of the webinar was conducted by doctors discussing medical interventions, and they presented different scenarios they’d seen in the autism world. The severity of some of these situations was unimaginable, even to me. There are children who smash their faces into the ground and the walls until they are bloodied and broken. One child gouged his eyes and detached both retinas. The mind boggles. It broke my heart and I’m haunted by their stories. I don’t think I can ever again come here to bitch and complain – at least not the way I used to, ending every post with some stupid sad statement when all the while my son is safe and (relatively) healthy and happy.
Some of the individuals the doctors mentioned have been helped with electroconvulsive therapy (ECT) treatments (what they used to call electric shock therapy). I don’t know a whole lot about it yet, but I just bought the book Each Day I Like it Better, written by Amy Lutz (NCSA’s vice president). Amy’s son had aggressive and self-injurious behaviors which were successfully mitigated using ECT. (Yes, there is another Amy with another Jonah – and her husband, believe it or not, is Andy. You can’t make this stuff up).
I’m looking forward to reading her story, and I’m looking forward to the next two parts of the Severe Behaviors series. NCSA’s got all this information that simply didn’t exist before, and I’m all ears.
This past Saturday I got to visit Boo again. Halfway there, I realized I forgot to bring his assortment of DVDs. He’s never chosen anything but Jungle Book on these visits, but I like to offer him some choices. I decided to avoid a potential problem altogether and try the visit outside, since the day was warm-ish and the forecasted rain never arrived. Of course I brought McDonald’s and a strong companion to help me. We ate on the picnic table just outside his residence while he played music on my phone.
After lunch, I asked Jonah if he wanted to do a campus walk. He jumped up in answer, immediately ready to go. I took the risk and let him keep my phone. He was surprisingly okay with handing it back to me when he needed help, but he also could navigate a lot of it himself. We listened to Twenty-One Pilots and Harry Styles and Sir Sly, and he didn’t walk too fast for me like he sometimes does. At one point, after un-pausing a song for him, I handed the phone back — and he said thank you! For the first time: unprompted, unprovoked, and entirely of his own volition. I know Briana’s been working hard to help teach him but still I was amazed.
Hell, the sun even came out for us.
When we got back to the house, he allowed me a big hug and a kiss before he went inside. I couldn’t have asked for a better visit. The only thing I would have liked was more time with him.
Jonah does well in school these days, too, now that the kids are back in the classroom. Hs teacher says “He willingly does academic work and tasks given to him, with a little reinforcer at the end. Jonah also expresses very well if he does not want to do something but I can usually tell him, you can have x amount of time then we will do work. This seems to work well right now.”
Briana sent me his goals at the residence:
· Jonah will use a broom and dustpan to sweep piles of debris.
· Jonah will put clothes in the dryer, add a dryer sheet, clean the lint trap, and follow directions to push buttons/turn dial for correct settings.
· Jonah will put away cups and dishes
She thinks he’s capable of meeting the goals with some environmental cues and staff support. I think so too!
I’ve been trying to talk to him on the phone a few times a week. When the staff person answers, I always ask them to please find out if Jonah wants to talk on the phone. God knows I hate talking the phone, to anyone but him anyway. Most times Boo comes right over to talk.
Last night he sounded happy. Our conversation is of course limited, but Jonah does say “good” if I ask him how his day went, and he’ll tell me miss you, love you, and bye, if I say it first. He hangs up abruptly, all done.
Since I last wrote I’ve been on 2 or 3 more hikes. But I hurt my Achilles heel on my left foot and gave myself a break for a bit. Then I went out again this past Saturday. I’m so used to winter hiking that 50 degrees felt like summertime. It seems my limit is about 3 1/2 miles. Anything past that and my left knee hurts something awful, especially going downhill. Either that or the whole leg goes kind of dead – not sure how else to explain it. The trekking poles become crutches. I ain’t no spring chicken, but the woods sure do feel like home. I’d love to live in the middle of the forest someday. Maybe when I retire.
Of course it all depends on where Boo ends up, and we won’t know that for another year or so, I think. I want to be closer to him eventually. In my hoped-for future he is aggression free and I can visit often.
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.
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.
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.
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.
“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.
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).
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
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.
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
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.
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.
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.
I see Jonah in bits and pieces. He is behind me on a car ride, he is requesting The Jungle Book, I’m starting the movie, I’m pouring him cranberry juice. Sometimes I’m trying to get a photo. In most of the photos he’s in the backseat of the car or sitting at the table or on the floor, eating something. He almost always wants to nap but only wants mama about half the time.
Today when I asked if he wanted me to lie down with him for a nap, his answer was unambiguously no. And when his answer is no, my visit is short. Every other week my mom is with me. I used to have people join me on my mom’s Sundays off, but not so often anymore. Andy always manages to visit with Jonah several times a week, no matter how tired he is or how much he has worked that day.
The beginning of November was sunny and warmish, but lately the days are short, cold. Dreary. Seemingly always raining, dark, drizzly…we even had snow already, which I prefer, if it’s going to be cold anyway – and most days I am tired, often depressed. It’s hard to write about Jonah when there isn’t much going on where he’s concerned. I guess Jonah’s ambivalence or indifference toward me is better than an attack – a thousand times better. I should be grateful for it. How quickly I forget how bad it can be.
Props to his teachers and caregivers. Sophia, his head classroom teacher, sent me a great photo of she and Jonah in the classroom during their “Charlie Brown Thanksgiving” celebration. Just like in the TV special, they feasted on toast, pretzels, jelly beans, and popcorn (which I’m sure the kids loved) and I guess Jonah had a blast. Could we ask for a better, more energetic, patient, creative, and loving teacher? Not in a million years.
I love seeing Boo happy. I wish I could stand behind a two-way mirror and watch him in class, or at the rec center, or hanging out at his residence. Videos and photos are the next best thing. One of his caregivers at the residence even texted me two little videos one day, of Jonah jumping around on a giant beanbag and laughing his head off. I don’t know how to move the video from my phone to the computer, though. Maybe I’ll ask the youngster at work.
I’m tired. Maybe I’m not getting enough iron, or potassium, or protein.
Sometimes the days seem lengthy and meaningless, and there are days I go to sleep old-lady-early. I forgot to take my meds a few different days recently, and paid for it dearly.
Thanksgiving was as successful as Thanksgiving gets, though, and believe me I’m grateful for it. Jonah and Andy made it up to my mom’s house safely and without incident, and when we took our car ride, we saw a long train within minutes. My mom made delicious dinner and packed it up for all of us just like she’s been doing for 5 years or so now. Next year I want to try making Poppy’s dressing. (My grandfather, who died in 1999). His dressing was legendary and time-consuming to make…my mom doesn’t attempt it anymore and I miss it. Funny, the things you remember, the details of life you long for once they’re gone.
Then, the Saturday after Thanksgiving, my awesome sister Barbara was taken to the ER and abruptly moved to ICU with bleeding ulcers, breathing problems, and ridiculous leg pain and bruising. While they were figuring her situation out, my sweet Uncle Donny had a heart attack. He had a stint put in and was somehow “fixed” and home two days before Barbara. I spent as much time as I could with my sister, trying to advocate for her when it seemed they weren’t managing her care very well. There was one day when I felt like screaming Shirley MacLaine-in-Terms-of-Endearment style:
My mental illness has been showing.
I’m having full-blown panic attacks out of nowhere. It’s always a déjà vu feeling, usually triggered by something – a certain word or phrase sets everything into motion. Sometimes it’s a snippet of a song or a line in a movie. Then I’m caught on a memory-train tunnel; a piece of my brain unlocks and floods with terrifying thoughts – things I don’t want to see or hear, the confusion of not understanding what’s thundering through my head while at the same time remembering, recognizing, the recognition terrifying, and I am forgetting or unable to breathe, a burst of fire in my center, my heart thumping odd strong rhythms, and then I’m falling from my chair to the floor, falling away from my consciousness, saved at the last minute by breaking out in sweat, knowing how to breathe again. Moments later I always try, almost unwittingly, to recall what I was thinking, what was so overwhelmingly scary – and even as I seek it I am frightened to find it. I never do find what it was that started the tornado, nor what was swirling through my head. It leaves me feeling insane, or at least like I am facing going insane. I call it a panic attack because I don’t know what else to call it. What does it matter what you call it? I’d do anything not to have another. They are the most horrifying moments of my life.
Two workdays last week I cried on and off all day, for no reason and for every reason.
Still I worked my jobs and ate food and went to sleep and kept moving forward. I have friends and a cousin in various degrees of distress and depression, and I want to help them. More often than not, though, I’m right there with them and can only empathize with their dismal forecasts and downtrodden spirits. Some of my extended family are feuding, and people are hurting. It seems we’re all slogging through the holidays; I’ll be glad when the year turns and there is the promise, at least, of the renewal of spring.
I am not like this every day. I’m not. I sing and I smile and I do my best to combat the hate in the world by trying to be a good person. It’s just a struggle right now. I chose to write this in the midst of it, but I am not trapped under it. I promise. I’m a Weeble.
And, as all Gen Xers know…Weebles wobble, but they don’t fall down.
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The Never Normal 