Feeds:
Posts
Comments

Archive for the ‘Anderson School’ Category

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

From online Psychology Degree info: 

Cults are attractive because they promote an illusion of comfort.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now I see it.  I see it all the time.

The comeback is always stronger than the setback.

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

 

Read Full Post »

My son is being transformed by time from boy to man, all while remaining uniquely innocent.  And, these days, happy.  He’s swimming a lot this summer and has just been moved to a “high school” class with older kids.  This is only his third classroom since starting school at Anderson in September of 2011.  I like that they transition the kids slowly, as is appropriate for each individual.

His first two teachers were wonderful, and this new teacher has worked as a teacher’s aide with Jonah in the past.  I’m grateful Jonah seems to be coming into his own.  He can stay at Anderson until he is 21, at which point he will graduate; as we move forward, we can all figure out what’s the next best step for his housing and happiness.

I feel more optimistic about my son’s future than I have since he went away.  His charts show only minor behaviors like noncompliance and swatting his hand, and their frequency is lower than ever.

One day earlier this summer, the kids in his class made tye-dye shirts.  Jonah had a blast and was not shy about showing off his creation.

He even has the shadow of a hipster beard and mustache, when his daddy or caregivers don’t shave him.  He doesn’t seem to care about facial hair one way or the other, though he had to have some small bumpy skin tags removed from his cheek and chin.

That’s the other thing — Jonah now has the ability to stay still long enough for the

laser procedure.  Before this, we’d have to put him under general anesthesia for everything – even a dental cleaning.

And at his glaucoma appointments, now they can do a special scanning eye exam because Jonah can keep his head in the machine for a minute or two at a time.

Last time we were at the glaucoma doc and the technician guy was asking Jonah to keep still, I wanted to say “dude, you have no idea you are witnessing a freaking miracle right here.”  This is the kid who has been banned from doc offices because of his out-of-control aggression.

Now he is redirectable.  He waits pretty damn patiently for the doctor, and follows instructions with our prompting.  The doc sometimes forgets Jonah does not know left and right, so I point or use something in the room as a reference.  Boo still tries to cheat when they bother to test his left eye.  He rocks and hums and asks for two hamburgers.  He cooperates with patience he never had before.  He laughs as he waits til he’s set free to walk back to the van.

Life is good for Jonah Russell.  Andy is not as optimistic as I am.  Yes, we’ve been fooled before into the lull of complacency when Boo is good – but he’s never been this good for this long, and I say he is growing and learning and better at processing his emotions.  I say this is a miracle, if only a highly personal one.

People all around me with kids Jonah’s age are dealing with so many parenting problems that I feel a whole new gratitude for what and who my child is – and is becoming.

More than meets the eye.

 

Read Full Post »

Jonah April 2019

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

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

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

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

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

Jonah:  Car ride?

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

Jonah: CAR RIDE!?

Maybe Jonah will kick his ass for good measure.

Just kidding.

Kinda.

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

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

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

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

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

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

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

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

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

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

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

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

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

Doesn’t everyone do this?

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

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

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

For those of you waiting for a boot update:

I found it.

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

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

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

The Universe is Puck, playing games with us all.

Happy Sunday.

Spring is here!

 

 

<—  Me, Easter 1973.  Age 3 1/2

Read Full Post »

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.

Read Full Post »

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

Read Full Post »

My mom seeks out comfortable, high-quality shoes for Jonah in an old-school, determined way.  I think it’s her generation (the one that came after the Greatest Generation and before the Baby Boomers).  When I was little, she always took me to Stride Rite and had my feet measured carefully.

Her parents were big on shoes, too.  We did without some things but we never did without good shoes, she tells me.

And so Jonah has always had the finest footwear.  Until he got aggressive, we brought him to the Stride Rite in Stuyvesant Plaza, always planning the time of day so as to be the only ones in the store, if possible.  He paced in circles and we got him to stop briefly in that silver measuring thingee with the slider so they could get his size right.  The salespeople were always kind, and my spoiled Boo had a never-ending supply of fine footwear due to my mother’s diligence and my father’s financial backing.

None of that has changed. Once we couldn’t take him to stores anymore, grandma got creative, tracing his feet on paper, then purchasing her very own silver measuring thingee.  I’ve got to give props to these slip-on sneaker/shoes she found, because he loves them.  They’re easy, and comfortable, and so we keep buying them.

She just ordered him two new pair and instructed me to donate his old ones.  When I collected them at his residence, though, they looked a little too ratty to donate – and yet not destroyed enough to throw away.  Out of curiosity I tried them on, and they fit me perfectly.  So now they’re my house shoes.   I am literally walking in my son’s shoes.  I like it.  But damn. You know you’re getting old when you start telling people these are my house shoes.

When I was pregnant I remember thinking I’ll be 50 when my child is 18, and how perfect it seemed.  My fledgling trying his wings as an adult, me trying my wings as an empty nester.  Now 50 is less than two years away.  18 is too.  And none of what I expected has come to pass.  He’d be a junior in high school now, but he’s trying his wings in a far different way, and my empty nester time came 9 years too early.

Because 18 is coming it means we need to apply for guardianship so we can make medical, educational, housing, and other decisions for Boo.  We have all this paperwork they gave us about what we need to do.  I also had a free consultation with a lawyer about a special needs trust, but it’s a few thousand dollars just to set up.  We might be able to use some of his SSI money to save toward it; I need to look into that.

Jonah’s been doing great.  His teacher sends me notes and the residence tells us stories, and I think he’s down to one takedown a month or so .  Let me type that again.  I want to type it again.  ONE takedown a MONTH.  This from a child who was up to 12 take-downs a DAY (and, really, after that, so many that they were like one continuous aggression with brief interludes of Jonah catching his breath).  I’m very grateful, even though we’ve had to trade away some abilities to mitigate his aggressions.  He definitely is not enunciating like he did when he was much younger, for instance, and I think he’s lost some of the interests he used to have.

Then there’s a voice in my head that says well, he is a teenager, after all.  Don’t all 16-year-olds mumble and nap and listen to rap?  I’ve stopped trying to guess what’s what and why and how.  There’s no map for this path.  We’re bushwhacking through, just as always.

It’s becoming increasingly apparent Jonah won’t be able to live independently as an adult.  At all.  It’s not so much a surprise as a sigh.  It will be another new normal.

Oh, and I have photos to share.  Jonah’s now as tall as Andy and me (we’re all 5’7″ for this short while).  He slouches, though, so I think he might be even taller now.

20180325_101115Wearing his Public Enemy shirt my friend Kristin got him.  His favorite album is  It Takes A Nation of Millions to Hold us Back, particularly the track Bring the Noise.

I’m too black.  Too strong, he says.

Fight the power, white boy.

20180401_132022

 

Here’s Jonah with my dad on Easter Sunday…and two more from

the same day…

 

20180401_111631

 

 

 

 

He’s been learning some simple piano chords.  Nothing amazing or even melodic, mind you, but chords nonetheless.

This is grandma’s living room, and yes – that’s a genuine signed and numbered Thomas Kinkade in the background on the wall.  (I’m not what you’d call a fan).  She got #666, and I tease her about that.

20180401_125406.jpg

 

 

 

 

Next to Grandma, Jonah looks like a basketball star.

Easter was good.  As good as it could be, considering our family lost my beloved Aunt Sue to a sudden stroke in late February.  Our family still sits stunned and disbelieving.  In shock.  She may well have been the best of us, and the first of her generation to pass away on my mom’s side of the family.

I hadn’t planned to ask if I could speak at her funeral but I did end up writing something and sharing it – a letter to her, thanking her for being my sweet Aunt Sue.  I’m grateful I got the chance to pay her tribute.   Now my Uncle John breathes in and out and gets through day by day and minute by minute, the long exhausting slog through grief that comes first like flooding water drowning you, then in waves crashing steadily at intervals, then like random jolts.  Sparks.  Sharp pricks of pins. Time softens the blows but never quickly enough.  The pain pulls your very heartbeat out of rhythm – thumping, jumping, scared.  It can rip through your stomach like flu and squeeze your lungs so you’re gasping, fish out of water flopping on the floor.  Everything upside down.  No answer, no solution, no matter what.  The panic and the desperation.

This life is messy.  Joyful, and sometimes agonizing.  Tiring and boring and too fast and very funny.  Recently another younger cousin happily announced she is pregnant, and so the wheel turns.

I have hope now with consistency, for the pendulum I’ve blogged about so often has slowed to a very slow swing.  I’m resting on it as on a hammock, still and settled, for as long as I can.  I have hope, and it feels just like the spring we’re finally beginning to see here in Upstate NY.

Boo says hello.  And Onward ho…

Read Full Post »

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

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

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

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

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

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

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

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

as a butterfly pexels-photo-462118.jpeg

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

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

pexels-photo-210887.jpegand a band.

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

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

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

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

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

IMG_20171210_101141664

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

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

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

All I can say is I’m grateful for it.

Read Full Post »

Older Posts »

%d bloggers like this: