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.
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.
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.
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.
I’ve got good news and bad news. To decide which to write about first, I’ll flip a moneycoin piece. Heads = good news first, tails = bad news first.
Bad news it is.
Jonah’s recent behavioral team review from Anderson tells the story well enough:
9/11/2018 Reason for Appointment: BTR (Behavioral Team Review) Chief Complaint: Aggression, Non-Compliance
There has been a significant increase in the intensity of Jonah’s aggression. Recently dislocated teacher’s arm during restrictive management. He has also bitten people. He seems more on edge. Episodes of aggression are not frequent but when he is aggressive it has been extremely intense.
Currently the team is trying to get approval for 4-person supine restrictive control.
Will increase clozapine dose by 25 mg/day.
As far as I know, Jonah’s teacher is still out on medical leave. I hate that it happened and I hate that it was Jonah who hurt her. I emailed her and sent an “I’m sorry” card; Andy and I are worried about her and upset in a sickened kind of way, having gotten so used to the mostly smooth ride of spring and early summer.
A 4-person takedown is a big takedown. If you’ve been reading my blog you might remember me talking about 2-person takedowns. Somewhere in there they increased it to 3, and now 4. The drug increase has made him sleepy; it’s strong medication, the clozapine (or Clozaril, its brand name) and has a sedative effect. It’s also the only thing that’s worked, really, at all.
And so this wet, hot summer has been peppered with these spikes in Jonah’s aggression. One time it was just Jonah and Andy, in Andy’s apartment, and it got pretty hairy. I remember speaking to Andy on the phone the night after it happened. “I’ve still got him,” he told me. I knew what he meant — he still has the edge on Jonah, strength wise, if only by a hair. Andy does not have 3 other people to get both Jonah and he through the incidents safely, as they’ve deemed appropriate and necessary on the school campus. So a cabinet in Andy’s apartment was destroyed, and both he and Jonah got more than a little scratched and bruised. There were also a few hair-pulling incidents with varying levels of hurt and pain – although Officer Scattergood was our last run-in with the five oh.
There is good news, though.
Between incidents of extreme aggression, Jonah’s progress report (from 4/1-6/30/18) tells us “Jonah shows continued improvement in Transition Development programming, participating in daily living and pre-vocational skill activities as well as the on-campus work program and garden. He’s learning to clean surfaces, wash dishes, sorting/folding/stacking laundry, making the bed, using the washer and dryer, loading & unloading the dishwasher, and setting the table — but he needs visual, verbal, and sometimes gestural prompting for these things.”
“He also works on meal prepping and clean up, including cutting, measuring ingredients, and using kitchen appliances. Jonah does especially well at the task of passing out plates, cups, and utensils to classmates.”
I even have photographic evidence of his cake-making skills, kindly provided to me by one of his residence caregivers, Tonya, just last week.
I don’t know if I’d believe these things if I didn’t have the pictures. He’s much more independent and capable at Anderson than he is with us…partly, I think, because more is demanded and expected of him.
“He has been doing well with engaging more during group OT (occupational therapy). He has been much more open to trying all the meals that he helps make!”
Wonders never cease.
“Jonah also completed pre-vocational tasks that developed his ability to sort, package, sequence, match, and assemble. He can almost independently retrieve a task, perform that task and return the task. However, Jonah needs encouragement to complete the task in a timely manner. He can stay focused through the task and when finished he is able to put the task back with verbal prompting. Jonah enjoys the color sorting. This quarter there were new Vocation Specific tasks that included filling envelopes, folding paper, and labeling mail. Jonah did well with these new tasks.”
“Jonah participates in several on-campus jobs including working in the garden and janitorial/recycling tasks. While Jonah needs support learning new skills in the garden, he needs minimal assistance in completing his janitorial tasks. During garden Jonah completes tasks such as watering plants, digging soil, weeding, and planting seeds. Jonah enjoys watering the plants and sometimes himself and staff too! Jonah continues to make deliveries around the school with the daily newspaper; he is doing very well. He can almost complete this task independently. Jonah continues to help assemble, package, and count items for the med-kits for surrounding classrooms around the school. He continues to do well with these tasks.”
“Overall, Jonah has been an active participant in all areas of the Transition Program. We will continue to work on accomplishing tasks more independently.”
This written by his teacher, about 6 weeks before he injured her.
Here he is in the pool with her, earlier in the summer. She’s young, vibrant, and happy – full of energy and empathy. She has often told us how much she enjoys having Jonah in the classroom. I wonder how she feels about him now. I wonder how she feels now about teaching these kids who attack and stim and struggle.
I hope she knows how important she is and how much we appreciate her. No matter how many times we thank her and Jonah’s other teachers and residence caregivers, it will never be enough.
There is a lot more to say – more news of a different sort – but that’s a different entry. Let me get this one out there first.
We must free ourselves of the hope that the sea will ever rest. We must learn to sail in high winds. ~ Aristotle Onassis
in which I bore you all with the same exact story about Sara Crewe and A Little Princess. Oops.
I rarely read my old blog posts and I’ve never read the whole blog through start to finish. I wonder how many times I’ve gone on about Laura Ingalls Wilder, Guster, Elfquest, A Little Princess, etc. in the same way, over & over? Am I getting forgetful in my middle age, repeating myself without realizing it? Or am I autistic and fixated on telling the same stories and references ad infinitum?
At least now I know the first year the magician started coming, which makes this year 7. That’s new information for sure.
I COULD just go back and edit that last post, but that would be a lie of sorts. This memory thing is part of who I am. I do often forget that I’ve already told someone something, or I forget to whom I told what.
Sometimes I forget because I need to forget. In the process, other things get tossed out in the wash.
I suppose there are worse things that could happen to my mind.
Tomorrow I drive down alone to visit Boo with Andy. Jonah has had a rough week; yesterday he even bit a caregiver on the stomach and fought with another. And here I thought I just might start to maaayyybe hope that his aggressions were gone for good. At least mostly.
But no. No, again. No. Again.
I have to be careful tomorrow. Follow all the old rules. No glasses, be vigilant, tuck the sheets under him and not me when we take a nap. If we take a nap. I’m nervous about it, and sad, and it makes my PTSD kick in, my heart pounding pounding pounding, teeth clenched, muscles tight, jaw like stone.
Plus it’s been raining and dreary all day, and there was another school shooting yesterday. 10 people dead in Texas. I read the comments on the articles about it, all the solutions, all the suggestions, the angry finger-pointing name-calling righteous people who blame and lash out, mock and ridicule, troll and flame, everyone saying it has to stop, it has to stop, it has to stop. We have forgotten how to be kind to one another, even in the wake of a tragedy. It’s more important that someone else is wrong and you are right. It’s more important to be heard than to listen. Ours is a broken country.
I’m exhausted from caring about too many broken things. I’m exhausted from crying about it and about Boo earlier, and exhausted from rage cleaning – scrubbing and sweeping, vacuuming and doing wash, whirlwind style, vigorous and hard. I always clean like this when I’m feeling angry and helpless. It’s a giant metaphor. I can’t scrub the world of its hate and I can’t wash the aggression from my son, but I can at least do the dishes and make the fucking sink shine. I can clean my own little corner of the world.
The last big Bad Thing I could have written about happened back on October 29th, 2017.
I’ve said I like to put distance between the bad stuff and the writing about it, and 3 months of distance before writing is a little much, maybe.
But also good. Good because there hasn’t been any more bad stuff to write about. Not really. Not where Jonah’s concerned, anyway.
I could have written a thousand little details about our visits and his schoolwork and the music he loves now, but I’ve been lazy and, at times, hibernating in a wintry depressive state.
It doesn’t help that for a year and a half, my co-worker Erin became my best friend and then, last month, quit to take a higher paying position in a different place.
We connected on a wavelength of shared loves & zany antics – two off-balanced, slightly-evil clowns. We were Laverne and Shirley, throwing ourselves down the street, clutching one another in the wind. Hauling ourselves up the stairs all the way to the 7th floor for exercise when it got cold, every time checking to see if the door to the roof was unlocked. Always laughing, always singing. We worked out harmonies to the National Anthem in the hallways and sang of butter on the side with our deli orders. We said the same thing at the same time so often it got eerie. Without her I am just plain Shirley, which hurts something awful and isn’t a whole lot of fun to watch. Now my days are long and empty. I’m grateful for my job and I reckon I’ll get used to this new normal eventually, but I miss my friend. Soon we’re going away to Boston to see a comedian and stay overnight, so that’s something. She’s not entirely gone from me…and I’m glad she’ll still be in my life.
Maybe 2018 will be different and I’ll write all the time instead of rarely. I don’t really do resolutions, but if I did I’d resolve to write a novel about Jonah – perhaps about a specific time in his life. I’d focus on that terrible, tale-able time which started, conveniently for the telling, right when I began writing this blog. Not sure where it would end, but sometime before this writing for sure. Leave everyone hungry for a sequel. I’ll win a Pulitzer prize, and they’ll make a movie about us. All of that.
I suppose I should at least tell about October 29th. I’m not sure why I remember the date…maybe because it was the day after this Halloween party I went to
as a butterfly
on a boat
with a buffet
and a band.
Which was unusual for me what with my social avoidance/anxiety lately. Hell, I don’t know the last time I walked into a store that wasn’t CVS, and that for prescription refills.
Anyway, the next day was October 29th. I was tired and more than happy to join Jonah in the big blue bed for a nap, which is what he’s been requesting every week (and still does of this writing). First he wants food, and then The Jungle Book and a nap. So we go in to lie down. Tickle? he said, which means he wants me to scratch and rub his back. He often falls asleep this way, both pillows and covers over his head. But this day I turned so I was facing away from him, and I fell asleep. I woke to him pulling my hair, hard, hunks in both fists. Andy came in to help, and I’m kind of following Jonah’s thrashing movements so as to keep the hair in my head, when BAM he back-kicks me, horse strong, right in the ribs. It knocked the breath out of me and I crouch-walked into the living room to collapse on the couch, crying like I do when he attacks me, thinking at least he didn’t have his shoes on.
He calmed down quickly after that, if I’m remembering right. My pain waxed and then waned within a day or two. But then, after about 9 or 10 days, it got much worse. I’ve had pneumonia before and that’s what it felt like, heavy in my lungs and hard to breathe, but worse. I had to roll myself out of bed in the mornings because I couldn’t sit up. Finally I caved and went to urgent care to get x-rays, which in retrospect seems dumb because there isn’t anything they can do for broken ribs anyway. And mine weren’t broken, just bruised. Mother of shit it hurt, though, and for a good month.
I remember the thought coming into my head that one of these days he’s going to put me in the hospital, and then the acceptance of that thought, and finally the dismissal of it. It’s not something that does anyone any good to think about, even if it’s true.
Now when I nap with Jonah, I get him under the sheet and blankets and then I climb in under the blankets only, so I’m lying on (and essentially trapping him in) the sheet. I put my hands in front of my face in mock fighter-protecting-her-mug pose and I always face him. But he’s not been aggressive to me since that day.
If you had told me 8 years ago that someday Jonah would go months at a time without hurting me, I wouldn’t have believed you. Or at least I would have been afraid to believe you, the same way I have sometimes been afraid to hope. The fall from hope to despair is long and painful, every time, no matter how many times the wheel turns. Again and again I return to hope, however – for it speaks of possibility, always looks bright, and feels a whole lot better than the alternative.
Thanksgiving was good – we saw a train on car ride. Jonah got to see grandma and take home delicious turkey dinner she’d made. Pa was there to give him a hug and kiss. Christmas was fine too, but different. Jonah never even requested train – an unheard of situation. When grandma asked if he wanted to go upstairs and lie down with mama, he actually said yes – so I got to have a lovely Christmas nap with my son.
Funny how one of the things I used to lament once he went to Anderson was missing the everyday normalcy of watching him sleep. Now I get that, every week – as if in answer to a prayer piece. No, the blindness in his left eye isn’t suddenly cured and no, his aggression didn’t disappear altogether, but this I can have. I can nap with my Boo.
It’s been a great summer with Jonah – he was mostly happy, lovey, and good-natured. Predictable in the best way, and I swear he grew 6 inches since last year — my height (5’7″) at least, when he’s not in his typical slouch. He went swimming, enjoyed campus walks at school, and his visits with us were awesome –well, at least from my perspective.
Our summer routine: my mom and I drive down early every Sunday morning, and as always she stays back at Andy’s apartment while Andy and I pick up Jonah at his residence. About 80% of the time, he’s already at the door, looking through its window for daddy – because it is daddy he looks for. Andy picks Jonah up for visits a few times a week, and Jonah adores his father. So as soon as we enter the code and open the door, Jonah walks out immediately. I don’t take any of this personally. Whenever I’m not there, he asks for mama, and I know he loves me too. It’s all just part of how he rolls.
Usually Andy takes Boo to the car while I stay back to sign him out, talk to the caregiver staff, gather his coat or other items, and grab his meds for the day. When I return to the car Andy’s just putting Jonah in his harness and getting him settled in the back seat behind mama.
Jonah asks for radio andif the song is not what he wants he’ll say other radio – and if it’s not loud enough, he’ll say on which is his way of asking us to turn it up. On! he’ll repeat until it’s either loud enough for his satisfaction or as loud as we’ll let him have it. Then we drive to either Dunkin’ Donuts or Stewart’s and procure a jelly or chocolate donut, based on Jonah’s caprice. We head back to the apartment as Jonah eats his treat. I hand him a wipe and he cleans his own hands and face, then hands the wipe back to me. Sometimes he asks for kiss hand and gladly I oblige.
At the apartment he confirms Grandma is there and will sometimes acknowledge her, usually accepting a hug or kiss, then heading for the fridge.
There he pulls out random things he thinks he wants and we help set him up with the burger and fries grandma always brings. Sometimes he asks for Jungle Book or Oompa Oompa, his attention span varying in length but always longer than it used to be. Sometimes he asks for train on computer and wants to choose his own videos, on as loud a volume we’ll allow. He still, on occasion, enjoys his bathtub brunch.
Always after these activities and sometimes in lieu of them, he disappears into Andy’s bedroom to get in and under the covers. I ask “can mama lie with you?” and he always says yes. So I take off my shoes, make sure his are off, and get in with him. Usually he giggles: “And the boobie,” he says softly, turning to try to reach down my shirt. I gently move his arm and he giggles again but stays still. And after only one redirection, lately, he keeps his hands to himself, turns away from me, and pulls both covers and pillow over his head; I curl into him and rub his shoulders or scratch his back. Usually we both fall asleep for an hour or so like this.
I sometimes hear my mother and Andy talking. They argue politics or talk about Boo. Andy got rid of TV and my mom can’t have her Fox News anymore, so she reads a newspaper or book.
Like I said, visits this summer were awesome for me. Andy doesn’t mind if I take a nap with Boo, but poor grandma is left to her own devices. “Lie down with us,” I tell her, and she could, but she doesn’t want to. Stretched out on the bed, you can see just how long and lanky he’s gotten.
Sometimes my mom gets sad about Jonah napping during visits, but I remind her it’s a hell of a lot better than the stretch of time when Jonah refused to get out of the car at all – or, worse, when he was attacking us left and right. At least he comes in the apartment, even if it’s only to nosh and nap. It’s more than good enough for me. My mom is getting older, though, and she tires easily. It’s a lot for her to drive down. Lately I’ve been doing the driving, both ways, in her car. And if I can’t visit for whatever the reason, she hasn’t been going either.
It’s hard on her, and on my dad too, I’m sure. Jonah’s the only grandchild they’ve got, and they’re surrounded by friends, family –everyone, really, all talking about their grandchildren. Photos and stories of them at the beach, in a play, on vacation, at graduation. My parents wanted that too. They love Jonah very much but I’m sure they grieve the grandchild(ren) they never had.
Because Jonah is 15 now, we’re starting the process of transitioning him to an adult program. He can stay at Anderson until he is 21, but before that we need to identify the best, most appropriate housing for Jonah. So I went to a required Front Door orientation about a month ago. Mostly they talked about very basic stuff – what it means to be eligible, how to prove eligibility, how to access services – things we plugged into years ago. Because it’s an adult service, though, some of the details will change. Instead of an Individualized Educational Plan (IEP), for example, he’ll have an Individualized Service Plan (ISP).
And so here we go. So far Andy and I have only decided that we will choose the best place we can, whether it’s near Albany where he once lived with us, near Rhinebeck where he lives now, or somewhere in between. Aside from that, we’ll cross bridges and make decisions as we come to them. It’s a 6-year transition for a reason; the system operates slowly, lists are long, and Jonah may change and grow beyond what we anticipate. If we had to make such a decision today, it might be very different from one we’d make 6 years from now. I guess we need to decipher the most likely trajectory and go from there. We really are at the very beginning of the whole process.
To be honest, I don’t like thinking about it. It would be easy to worry, to waste time imagining scenarios and outcomes, but what good would it do? Best to educate ourselves about options and forge ahead.
But here comes Halloween time, and for the past two years this has meant Jonah’s behaviors get worse and he becomes very aggressive. Last year he was so violent, he spent Halloween in the hospital. And sure enough, it seems we’re in for it again. Andy says not to worry, that Jonah continues to be good for him and on our visits, and he’s right. But last week I got the dreaded email, on three different occasions, detailing dates and times during which Jonah needed take-down interventions.
I can’t even muster the hope that it won’t be another season of helplessness in the face of whatever’s making Jonah’s pendulum swing yet again. I have to wonder if he has Seasonal Affective Disorder (SAD). He does have crying jags now and again that seem to have no cause. I think I have SAD too, or maybe it’s just a reaction to Boo’s uptick in behaviors, but either way I face depression in the fall and winter.
My solution this year is to schedule more things with friends and force myself out of the house. Almost always I end up enjoying myself, and getting out is healthier for my head. It’s way too easy for me to “hermitize,” as I call it, staying inside virtually all the time unless I go to work or visit Boo. Amazon.com and grocery delivery make it that much easier to stay in. It’s no good for me to sit and dwell or go numb and listless.
As a result, I’ve spent more time recently with my sister Barbara (it still feels so strange to say my sister) or my friends. I went to a beautiful mountain Oktoberfest with an old college roommate, drove over to friend KP’s house for food & a fire, that kind of thing. It isn’t easy, honestly, when home feels so comfortable and the world seems full of obstacles and assholes. This Saturday night I’m even joining a bunch of friends on an evening Halloween cruise with dinner and dancing (dear God and little baby Jason help me). I’m going to fight this SAD if it kills me, both on my own behalf and on Jonah’s too. I’ve been talking with his doctor and behavioral staff and they are raising his dose of Prozac a bit. We want Boo to be happy.
I’m bracing for the storm that might blast us for a third year, but also embracing the good days, and feeling very grateful for every last one we get.
There’s more to tell and it would be easier if I’d write here more regularly, so I’ll work on that too. I just found more siblings – a younger half-brother and sister on my birth father’s side. They didn’t know I existed, which is a whole lot different from finding my birth mother’s daughter, Barbara, who had been looking for me my whole life.
My new brother and sister both seem interested in at least emailing, which is more than I’d expected. Given the situation, I won’t mention names or post pics. I was born just days after our father married their mother, which doesn’t sound very good. The last thing I want is to cause a rift in their parents’ long and happy marriage, so I’m going to let my new siblings decide how to handle what must be very shocking news.
Who’d have thought this only child would end up with so many sisters and brothers? I wonder if there could be more even I don’t know. Life throws curve balls. I’m as ready for them as I could be, I reckon.
Here’s to a happy Halloween for Boo, and all of you! I’ll keep you posted on that storm, if it lands…
So I came across a news story on Yahoo about a special needs kid getting his high school diploma. Proud mama is grinning, and the headline reads Child With Severe Autism Beats Odds To Graduate.
Severe autism my ass. I’ll show ’em severe autism.
I guess we’ll need new terms to describe people like Jonah. Perhaps we could use adjectives from bags of Doritos: Extreme autism. Ultimate autism.
Or natural disasters: Tragic autism. Catastrophic autism. Lately it’s felt pretty catastrophic. Jonah’s gotten worse and worse, with a few glances of happy, like this one on Christmas Day –
One tick of grandma’s kitchen clock – and even as he smiles, you can see him reaching up to pull my hands off his body, ready to take off running-humming-spinning. At the next tick of the clock he’ll turn on you snakestrike quick, hands snatching hunks of hair, scratching skin, head butting, legs kicking, all the while strangely quiet as if silenced by a fear of his own violence. (When I visit him, I’m always half-blind; I don’t dare wear my glasses and I can’t wear contacts).
Thorazine didn’t work, though they tried raising the dosages steadily. And now the Anderson Center for Autism has reported to the Albany School District that Jonah is not meeting his educational goals (which include behavioral benchmarks).
In other words, you’ve got to find somewhere else for this kid.
Andy and I knew this might be happening soon. They’d hinted at it before. The Anderson Center reassures us, at least, that Jonah will not be sent packing on the next train to nowhere. They’ll continue to teach, house, and help him until we find a more suitable placement. In fact, one of his behavioral specialists tells me they’re planning to set up an alternative learning environment for Boo, where he will be the only student. It’s probably almost necessary, in fact, given Jonah’s recent attacking.
I don’t even want to consider what options there were for someone like Jonah a hundred years ago. I’m grateful it’s 2016, and I’m grateful for Anderson’s staff, who have worked so hard to help.
It’s just that I always considered the decision to place Jonah in residential care as the edge of the cliff. You do as much as you know how to do – call on every resource, employ every method you can, persist in every hope – until you face this wall of reality and on the other side your child must eat-sleep-learn-breathe-live away from you. As in, not in your home at all.
It was the end of a geographical era in our lives. It was an atom bomb. A record-breaking earthquake.
But not really. Turns out it’s just another chapter in a book about a kid so behaviorally affected that even the residential school we found for him couldn’t handle him.
An e-mail from this past Wednesday: This email is to notify you that Jonah was in a physical intervention on 1/20/16 at 10:30am, 10:53am, 12:30pm and 1:40pm. They’d called an ambulance to take him to the hospital the day before, because the aggressions were so frequent. The hospital isn’t the place for Jonah when this happens; Andy and I know it. But what is the place when this happens? Where can he go?
If Jonah gets better, he will undoubtedly stay at Anderson, of course. The cogs in this machine turn slowly, and if we canjust get a handle on this, Jonah’s life need not be disrupted.
Urgency + desperation + helplessness = how Andy and I feel. We talk about it carefully, if at all. Not a lot needs to be said. “Where Jonah goes, I will go,” Andy tells me. I believe him; he moved to the Rhinebeck area when Jonah did, more than four years ago. He has a life there now – a job and a girlfriend he loves. But we take things one day at a time. We try not to put carts before horses.
Now Jonah has been completely weaned off Thorazine. Beginning tomorrow, he’ll start taking Clozaril – what seems to be a “last-resort” drug, usually used to treat very severe schizophrenia. And nobody even tried to sugarcoat the situation. This drug is risky. The information I look up is scary.
From drugs.com: Clozaril is available only from a certified pharmacy under a special program. You must be registered in the program and agree to undergo frequent blood tests. Jonah’s nurse explained how everything is well monitored – in fact they can only get 7 days of the medication at a time. Andy and I signed a form, as we always do with a medication change, but this prescription also had to go before the board of health as well.
I never thought I’d be okay with a drug that has so many warnings.
On second thought, I don’t think “okay with it” is what I am about the drug, or about any of this. But Jonah’s doctor said she’d used it on 10 patients and 9 of them showed significant, life-altering improvement. It gives us all hope, somehow, still.
The cycle of Hope and Despair turns stubbornly. In the midst of despair, you think you’ll never entertain hope again. Hope has let us down, after all. It’s let us down every fucking time. Despair is painful as hell but at least there’s no one holding a football to yank it away at the last second.
What a deliverance of hope it would be if Clozaril was the answer! I allow myself to imagine it this day for a tiny piece of time – a Jonah freed from aggression, from anger, from violence. My happy boy, our sweet Boo, the baby-est angel.
I don’t know. I just don’t want Jonah to hurt anymore.
I took this photo last week during a car ride, when Andy pulled over and we got out to avoid being kicked. These pull-overs happen frequently; Jonah’s good at scrunching way down in his car harness to get good leg extension and reach us in the front seat.
You can see Andy’s reflection in the window. Juxtaposed with Jonah’s expression, I think it paints a poignant picture.
Today was better, at least during our visit. Two direct caregivers walked Jonah out to Andy’s car to avoid the recent attack-mama-or-daddy-as-soon-as-they-walk-in-the-residence pattern. One of them told me Jonah’d had a severe aggression about an hour prior to our arriving, so we set forth with trepidation…but despite much kicking and multiple pull-overs, Jonah was better for us than he has been.
In the apartment, I even got him to sing a little as he traced a large figure eight in and out of Andy’s bedroom into the living area. We sang I’ll Be Working on the Railroad, Bye Bye Blackbird, and more than a few Guster songs for good measure. First I sang a line, then I motioned at Jonah, who easily picked up the melody, lyrics, and rhythm.
I thanked God for it.
Evidently they’re expecting Jonah to respond to Clozaril within two weeks, if he’s going to respond at all. Tomorrow’s the first dose.
ke to put distance between the bad stuff and the writing about it, and 3 months of distance before writing is a little much, maybe.
every time checking to see if the door to the roof was unlocked. Always laughing, always singing. We worked out harmonies to the National Anthem in the hallways and sang of butter on the side with our deli orders. We said the same thing at the same time so often it got eerie. Without her I am just plain Shirley, which hurts something awful and isn’t a whole lot of fun to watch. Now my days are long and empty. I’m grateful for my job and I reckon I’ll get used to this new normal eventually, but I miss my friend. Soon we’re going away to Boston to see a comedian and stay overnight, so that’s something. She’s not entirely gone from me…and I’m glad she’ll still be in my life.
on a boat
and a band.
The Never Normal 