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Archive for the ‘autism’ 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 

 

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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.

 

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Jonah April 2019

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

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

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

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

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

Jonah:  Car ride?

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

Jonah: CAR RIDE!?

Maybe Jonah will kick his ass for good measure.

Just kidding.

Kinda.

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

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

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

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

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

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

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

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

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

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

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

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

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

Doesn’t everyone do this?

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

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

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

For those of you waiting for a boot update:

I found it.

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

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

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

The Universe is Puck, playing games with us all.

Happy Sunday.

Spring is here!

 

 

<—  Me, Easter 1973.  Age 3 1/2

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On Thursday the 7th, I took time off work for Jonah’s quarterly glaucoma doc appointment.  Two Med Run Peeps drive him the 90 minutes up to Albany every time in the Anderson van; Jonah rides in the way way back, transported like His Majesty the Prince of Rhinebeck.  I was very much looking forward to seeing him.  It has been a long, long stretch of time since Boo has had an aggression.  Since maybe October.  I was hopeful he’d be glad to see me.

The stars were aligned this day.  It was Laura Ingalls Wilder’s 152nd birthday, the Med Run Peeps were being their awesome, caring, kind selves, and Jonah was cooperative and happy.  Silly and funny.  Amazingly good.

Even more so when you consider that, unlike most visits to this doc, we had to wait a while; they wanted to take a scan of Jonah’s eyes before he saw his regular doctor.  So we moved to an empty area of the waiting room, where geriatrics henceforth feared to tread – though those with vision watched us curiously and not unkindly.  Jonah laughed his brash, loud laugh, pacing up and down the row of empty chairs.  He hugged me and asked for more kiss? again and again.

My son is nearly a man.  In a photo, he sometimes looks like a regular kid who is 16-going-on-17.

In person, though, there is no mistaking him for a “normal” teenager.  His disability is as visible as if he were in a wheelchair, and to be honest I don’t mind that.  In general, people are more compassionate now.  When Jonah was very young – until he was 10 or 12, really, this was rarely the case.

Back then, to some, Andy and I were bad parents of an out-of-control kid.  Once, an autism-denier went so far as to comment that I should give him Jonah for a week and he’d “straighten him out.”  (I think his comment is still on that long-ago post).  I remember how tempting it was to let him try… just to sit back and watch Boo kick his ass.   If there is anything from those darkest days I miss, it’s the secret evil pleasure of watching Jonah attack a smug doctor who’d ignored my earnest warnings of severe aggression.

I talk about the pendulum swinging: aggressions and respite, hope and despair – our cyclic existence with no real patterns upon which to prepare for the next “season.”

Dare I pretend
to hope
to believe
Jonah’s aggressions have disappeared altogether?

Since autumn of 2010, I don’t think he’s ever gone this long without aggressing in some way against someone.  He still gets squirrely, and he’ll swat or “flinch,” as the school calls it, motioning his hand in a warning.  It’s the rattle of the snake, and yet nothing comes of it anymore.  Now it is an end unto itself.

His awesome teacher Sophia wrote me yesterday that he had zero flinches this week.  Not just zero aggressions. Zero flinches.  My hero zero.

I’m proud of my son.  I think he’s worked hard with the wonderful teachers & caregivers to learn how to manage his feelings.  Fred (Mr.) Rogers said he wanted to teach children that feelings are mention-able and manageable.  It may well be one of the most important lessons a person can learn.

The rest of Sophia’s email to me reads:  “This week we learned more about coins and bills, we celebrated the Chinese New Year, the Phases of the Moon, we did an experiment with Oreos to show the phases.  Jonah enjoyed the part where he got to eat the cookies!  We made a banana sushi roll today during Group OT and we also enjoyed a nice walk outside!”

I was so happy to hear about his week and know he spends time learning in ways that are fun and comfortable for him.  When he first arrives at the classroom, he gets under a beanbag chair and blanket for a while.  They recognize he needs to start his day this way and I appreciate that.

And so Jonah is well, and happy.

The rest of this post involves another disappearance – so if you’re here just for Jonah news, all done. 

Every day when I get home and don’t have to go out again, it is my custom to take off my winter ‘office work boots’ I wear nearly every day and place them next to the radiator in my bedroom.  So on that same day – Thursday, February 7, I came home from Jonah’s appointment and put the boots where I always put them.

That night I woke up at 1am mid-migraine, head pounding hard.  I immediately got out of bed and took the med that stops my migraines about 50% of the time.  Then I stumbled into the bathroom and, without turning on the terrible light which has become my nemesis, found a washcloth and ran very cold water over it.  I returned to bed and nearly started crying in despair for what I knew was likely coming:  the 24-36 hour marathon of puking, even the tiniest sip of water rejected; dehydration and retching causing my head pounding to worsen and the head pounding causing nausea, on and on in a nightmarish underworld where there is only pain and the desperate desire not to be in pain.  In those first minutes lying down with the cool cloth, I prayed.  I prayed the fervent, frantic prayer of one willing and ready to strike a deal with Divinity.  Please, please, let this migraine subside and I’ll do anything.  You can take anything from me. Just make it stop.

And lo, on this day in the year of our Lord twenty nineteen, the migraine stopped, blessedly subsiding into nothing – the pain retreating as if ordered to cease and desist.  I eased into unconsciousness before I could pray or even think my thanks.

The next day I awoke…

…and, as part of my every day morning routine, got dressed, reached for my boots…

And this is what I saw:

One boot.

I looked under the bed.  No boot.  In the closet.  No boot.  After a while I didn’t have time to look anymore so I found my old pair from last year and wore them instead, telling myself I’ll find the other one later.  After all, how hard can it be to find a knee-high boot?  Yes, I lost 3 books of holiday stamps after New Year’s, but those are stamps.  This is a freaking boot.

Only later that day did I realize I’d promised in my prayer the night before to give anything for the migraine to go away.

The only conclusion I can come to is God took my boot.

It is now the next day, Saturday, and my mother’s birthday (Happy Birthday Grandma, says Boo).  I have conducted a thorough search for the missing boot.  I have looked in ridiculous areas and places where no boot could ever hide.   As of this writing I have no explanation, and I’m trying not to think about it all too much, lest it freak me out completely.

If after my death I am deemed so wonderful as to be considered for sainthood, could this missing boot count as my required miracle?

The world may never know…but I’ll keep you posted if I find it.

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I see Jonah in bits and pieces.  He is behind me on a car ride, he is requesting The Jungle Book, I’m starting the movie, I’m pouring him cranberry juice.  Sometimes I’m trying to get a photo.  In most of the photos he’s in the backseat of the car or sitting at the table or on the floor, eating something.  He almost always wants to nap but only wants mama about half the time.

     

Today when I asked if he wanted me to lie down with him for a nap, his answer was unambiguously no.  And when his answer is no, my visit is short.  Every other week my mom is with me.  I used to have people join me on my mom’s Sundays off, but not so often anymore.  Andy always manages to visit with Jonah several times a week, no matter how tired he is or how much he has worked that day.

The beginning of November was sunny and warmish, but lately the days are short, cold. Dreary.  Seemingly always raining, dark, drizzly…we even had snow already, which I prefer, if it’s going to be cold anyway – and most days I am tired, often depressed.  It’s hard to write about Jonah when there isn’t much going on where he’s concerned.  I guess Jonah’s ambivalence or indifference toward me is better than an attack – a thousand times better.  I should be grateful for it.  How quickly I forget how bad it can be.

Props to his teachers and caregivers.  Sophia, his head classroom teacher, sent me a great photo of she and Jonah in the classroom during their “Charlie Brown Thanksgiving” celebration.  Just like in the TV special, they feasted on toast, pretzels, jelly beans, and popcorn (which I’m sure the kids loved) and I guess Jonah had a blast.  Could we ask for a better, more energetic, patient, creative, and loving teacher?  Not in a million years.

I love seeing Boo happy. I wish I could stand behind a two-way mirror and watch him in class, or at the rec center, or hanging out at his residence.  Videos and photos are the next best thing.  One of his caregivers at the residence even texted me two little videos one day, of Jonah jumping around on a giant beanbag and laughing his head off.  I don’t know how to move the video from my phone to the computer, though.  Maybe I’ll ask the youngster at work.

I’m tired.  Maybe I’m not getting enough iron, or potassium, or protein.

Sometimes the days seem lengthy and meaningless, and there are days I go to sleep old-lady-early.  I forgot to take my meds a few different days recently, and paid for it dearly.

Thanksgiving was as successful as Thanksgiving gets, though, and believe me I’m grateful for it.  Jonah and Andy made it up to my mom’s house safely and without incident, and when we took our car ride, we saw a long train within minutes.  My mom made delicious dinner and packed it up for all of us just like she’s been doing for 5 years or so now.  Next year I want to try making Poppy’s dressing.  (My grandfather, who died in 1999).  His dressing was legendary and time-consuming to make…my mom doesn’t attempt it anymore and I miss it.  Funny, the things you remember, the details of life you long for once they’re gone.

Then, the Saturday after Thanksgiving, my awesome sister Barbara was taken to the ER and abruptly moved to ICU with bleeding ulcers, breathing problems, and ridiculous leg pain and bruising.  While they were figuring her situation out, my sweet Uncle Donny had a heart attack.  He had a stint put in and was somehow “fixed” and home two days before Barbara.  I spent as much time as I could with my sister, trying to advocate for her when it seemed they weren’t managing her care very well.  There was one day when I felt like screaming Shirley MacLaine-in-Terms-of-Endearment style:

My mental illness has been showing.

I’m having full-blown panic attacks out of nowhere.  It’s always a déjà vu feeling, usually triggered by something – a certain word or phrase sets everything into motion.  Sometimes it’s a snippet of a song or a line in a movie.  Then I’m caught on a memory-train tunnel; a piece of my brain unlocks and floods with terrifying thoughts – things I don’t want to see or hear, the confusion of not understanding what’s thundering through my head while at the same time remembering, recognizing, the recognition terrifying, and I am forgetting or unable to breathe, a burst of fire in my center, my heart thumping odd strong rhythms, and then I’m falling from my chair to the floor, falling away from my consciousness, saved at the last minute by breaking out in sweat, knowing how to breathe again.  Moments later I always try, almost unwittingly, to recall what I was thinking, what was so overwhelmingly scary – and even as I seek it I am frightened to find it.  I never do find what it was that started the tornado, nor what was swirling through my head.  It leaves me feeling insane, or at least like I am facing going insane.  I call it a panic attack because I don’t know what else to call it.  What does it matter what you call it?  I’d do anything not to have another.  They are the most horrifying moments of my life.

Two workdays last week I cried on and off all day, for no reason and for every reason.

Still I worked my jobs and ate food and went to sleep and kept moving forward.  I have friends and a cousin in various degrees of distress and depression, and I want to help them.  More often than not, though, I’m right there with them and can only empathize with their dismal forecasts and downtrodden spirits.  Some of my extended family are feuding, and people are hurting.  It seems we’re all slogging through the holidays; I’ll be glad when the year turns and there is the promise, at least, of the renewal of spring.

I am not like this every day.  I’m not.  I sing and I smile and I do my best to combat the hate in the world by trying to be a good person.  It’s just a struggle right now.  I chose to write this in the midst of it, but I am not trapped under it.  I promise. I’m a Weeble.

And, as all Gen Xers know…Weebles wobble, but they don’t fall down.

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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

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I’m glad I had the wisdom to visit Boo by myself the day after that last post.  Since my mom has been driving down with me every other week, I’ve had a host of other companions join me on her off-weeks.  My sister, two different cousins, and a good friend.  But I knew better this time, and I was right.

Andy and I had just picked Jonah up for his visit, and after a few minutes he asked for donut.  Andy told him yes, but about 10 seconds later he suddenly grabbed a hunk of hair on the right side of my head.  Andy immediately responded by pulling the car over, but before he could get out I felt Jonah’s other hand take a second hunk of my hair, and I was pinned against the seat, my head yanked back.

Andy ran around to get in Jonah’s side and there was a brief struggle before first one chunk of my hair, then the other, was released.  I scrambled out of the car like a hijacking victim trying to escape, my hair in every direction, tears streaming down my face.   Before I could wipe the hair and tears away I nearly stumbled into a car parked nose-to-nose with us.  A police car.  Evidently the cop was driving in the other lane and crossed lanes to pull over and check out the scene.  He opened his door and starting walking toward me.  I must have looked a wreck.

While Andy calmed Jonah down, I tried to get my shit together so I could explain what was happening.  By this time other cars were slowing down to rubberneck.  I started to ask the officer his name and simultaneously saw his name badge:  SCATTERGOOD.  “Your name is Officer Scattergood?” I asked, trying to seem like a normal person, hoping this was an auspicious sign.  “Ye-es,” he said haltingly, evidently hesitant to scatter the good until he assessed the situation.

First he attempted to talk through the open car window to Jonah himself, who by this time was calm and ready for more car ride.  “What happened here?” he asked Boo, who deigned to glance over for a few seconds before turning away.   Andy and I began to explain, each of us supplying bits of information.

Officer Scattergood asked me if I needed EMS and, when I declined, he took down our info.  I asked if he had been trained in responding to people with disabilities, and he said he actually just recently completed a 2-hour autism training course.  Still, we must have been his first autism rodeo; he seemed unsure quite what to do.  Finally he wished us well and we continued on our way.  I pulled my seat all the way forward and out of Boo’s reach.

It wasn’t until I got home and in the shower that I felt scratches all along my neck and right shoulder, and two small bald spots on my head.  I saw all the hair that had rinsed away in the tub and caught in my brush afterward.  (Good thing I have plenty.).   My scalp ached some, but it could have been worse.

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<– Boo was okay for the rest of our visit.  I tucked him in tight for our nap and then lay next to him (on top of the tucked-in sheets so as to give myself a quick escape route, should he attack again) but he only giggled, piled pillows on top of himself, and fell asleep.

I’ve been wondering how the whole scenario with the cop might have played out differently had we been a black family.  I like to think we would have been all right either way, but I also know the world is a volatile place right now where race and police are concerned.

I was very impressed by Childish Gambino’s This is America video and have felt compelled to watch it again and again.  One of my coworkers, S,  is young enough to be my son; he’s the one who showed it to me.  S grew up poor and his family all chipped in to get him through college – not just mom and dad but aunts and uncles and cousins, all lifting him up.  He’s also Hispanic and so we sometimes talk about race, racism, and everything that goes with and exists around it – perceived and real entitlement, privilege…socialism and sexism and capitalism.

I just totally pasted that into my blog post by accident.  Well, I meant to paste the link but there the whole thing is, right?  Ferris Bueller, talking about “isms?”  I could have done that with This is America, too, then.  I guess.  I figure things out as I go along, and technology is whizzing past me.  I end up learning things completely by accident.

The youngster at work is also good at helping me out in this regard.

So off to Boo I go again tomorrow, this time with my mom, our fingers crossed again. Lately he’s had both good days and squirrely ones.

His cool teacher sent me this picture of him, saying he showed up to school with the goofy hat on.  His shirt is courtesy of mama, who is growing tired of grandma’s ultra-conservative taste.  Jonah is not a golfer, nor a Rhodes scholar.  His clothes should reflect his silly, bright, whirlwind of a personality.

See you tomorrow, Boo!

 

 

 

 

 

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