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Archive for the ‘Anderson School’ Category

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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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.

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

the same day…

 

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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.

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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…

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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.

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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.

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It’s been a great summer with Jonah – he was mostly happy, lovey, and good-natured.  Predictable in the best way, and I swear he grew 6 inches since last year — my height (5’7″) at least, when he’s not in his typical slouch.  He went swimming, enjoyed campus walks at school, and his visits with us were awesome –well, at least from my perspective.

Our summer routine:  my mom and I drive down early every Sunday morning, and as always she stays back at Andy’s apartment while Andy and I pick up Jonah at his residence.  About 80% of the time, he’s already at the door, looking through its window for daddy – because it is daddy he looks for.  Andy picks Jonah up for visits a few times a week, and Jonah adores his father.  So as soon as we enter the code and open the door, Jonah walks out immediately.  I don’t take any of this personally.  Whenever I’m not there, he asks for mama, and I know he loves me too.  It’s all just part of how he rolls.

Usually Andy takes Boo to the car while I stay back to sign him out, talk to the caregiver staff, gather his coat or other items, and grab his meds for the day.  When I return to the car Andy’s just putting Jonah in his harness and getting him settled in the back seat behind mama.

Jonah asks for radio and if the song is not what he wants he’ll say other radio – and if it’s not loud enough, he’ll say on which is his way of asking us to turn it up. On! he’ll repeat until it’s either loud enough for his satisfaction or as loud as we’ll let him have it.  Then we drive to either Dunkin’ Donuts or Stewart’s and procure a jelly or chocolate donut, based on Jonah’s caprice.   We head back to the apartment as Jonah eats his treat.  I hand him a wipe and he cleans his own hands and face, then hands the wipe back to me.  Sometimes he asks for kiss hand and gladly I oblige.

At the apartment he confirms Grandma is there and will sometimes acknowledge her, usually accepting a hug or kiss, then heading for the fridge.

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There he pulls out random things he thinks he wants and we help set him up with the burger and fries grandma always brings.  Sometimes he asks for Jungle Book or Oompa Oompa,  his attention span varying in length but always longer than it used to be.  Sometimes he asks for train on computer and wants to choose his own videos, on as loud a volume we’ll allow.  He still, on occasion, enjoys his bathtub brunch.

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Always after these activities and sometimes in lieu of them, he disappears into Andy’s bedroom to get in and under the covers.  I ask “can mama lie with you?” and he always says yes.  So I take off my shoes, make sure his are off, and get in with him.  Usually he giggles: “And the boobie,” he says softly, turning to try to reach down my shirt.  I gently move his arm and he giggles again but stays still.  And after only one redirection, lately, he keeps his hands to himself, turns away from me, and pulls both covers and pillow over his head; I curl into him and rub his shoulders or scratch his back.  Usually we both fall asleep for an hour or so like this.

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I sometimes hear my mother and Andy talking.  They argue politics or talk about Boo.  Andy got rid of TV and my mom can’t have her Fox News anymore, so she reads a newspaper or book.

Like I said, visits this summer were awesome for me.  Andy doesn’t mind if I take a nap with Boo, but poor grandma is left to her own devices.  “Lie down with us,” I tell her, and she could, but she doesn’t want to.  Stretched out on the bed, you can see just how long and lanky he’s gotten.

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Sometimes my mom gets sad about Jonah napping during visits, but I remind her it’s a hell of a lot better than the stretch of time when Jonah refused to get out of the car at all – or, worse, when he was attacking us left and right.  At least he comes in the apartment, even if it’s only to nosh and nap.  It’s more than good enough for me.  My mom is getting older, though, and she tires easily.  It’s a lot for her to drive down.  Lately I’ve been doing the driving, both ways, in her car.  And if I can’t visit for whatever the reason, she hasn’t been going either.

It’s hard on her, and on my dad too, I’m sure.  Jonah’s the only grandchild they’ve got, and they’re surrounded by friends, family –everyone, really, all talking about their grandchildren.  Photos and stories of them at the beach, in a play, on vacation, at graduation.  My parents wanted that too.  They love Jonah very much but I’m sure they grieve the grandchild(ren) they never had.

Because Jonah is 15 now, we’re starting the process of transitioning him to an adult program. He can stay at Anderson until he is 21, but before that we need to identify the best, most appropriate housing for Jonah.  So I went to a required Front Door orientation about a month ago.  Mostly they talked about very basic stuff – what it means to be eligible, how to prove eligibility, how to access services – things we plugged into years ago.  Because it’s an adult service, though, some of the details will change.  Instead of an Individualized Educational Plan (IEP), for example, he’ll have an Individualized Service Plan (ISP).

And so here we go.  So far Andy and I have only decided that we will choose the best place we can, whether it’s near Albany where he once lived with us, near Rhinebeck where he lives now, or somewhere in between.  Aside from that, we’ll cross bridges and make decisions as we come to them.  It’s a 6-year transition for a reason; the system operates slowly, lists are long, and Jonah may change and grow beyond what we anticipate.  If we had to make such a decision today, it might be very different from one we’d make 6 years from now.  I guess we need to decipher the most likely trajectory and go from there.  We really are at the very beginning of the whole process.

To be honest, I don’t like thinking about it.  It would be easy to worry, to waste time imagining scenarios and outcomes, but what good would it do?  Best to educate ourselves about options and forge ahead.

But here comes Halloween time, and for the past two years this has meant Jonah’s behaviors get worse and he becomes very aggressive.  Last year he was so violent, he spent Halloween in the hospital.  And sure enough, it seems we’re in for it again.  Andy says not to worry, that Jonah continues to be good for him and on our visits, and he’s right.  But last week I got the dreaded email, on three different occasions, detailing dates and times during which Jonah needed take-down interventions.

I can’t even muster the hope that it won’t be another season of helplessness in the face of whatever’s making Jonah’s pendulum swing yet again.  I have to wonder if he has Seasonal Affective Disorder (SAD). He does have crying jags now and again that seem to have no cause.  I think I have SAD too, or maybe it’s just a reaction to Boo’s uptick in behaviors, but either way I face depression in the fall and winter.

My solution this year is to schedule more things with friends and force myself out of the house.  Almost always I end up enjoying myself, and getting out is healthier for my head.  It’s way too easy for me to “hermitize,” as I call it, staying inside virtually all the time unless I go to work or visit Boo.  Amazon.com and grocery delivery make it that much easier to stay in.  It’s no good for me to sit and dwell or go numb and listless.

As a result, I’ve spent more time recently with my sister Barbara (it still feels so strange to say my sister) or my friends.  I went to a beautiful mountain Oktoberfest with an old college roommate, drove over to friend KP’s house for food & a fire, that kind of thing.  It isn’t easy, honestly, when home feels so comfortable and the world seems full of obstacles and assholes.  This Saturday night I’m even joining a bunch of friends on an evening Halloween cruise with dinner and dancing (dear God and little baby Jason help me).  I’m going to fight this SAD if it kills me, both on my own behalf and on Jonah’s too.  I’ve been talking with his doctor and behavioral staff and they are raising his dose of Prozac a bit.  We want Boo to be happy.

I’m bracing for the storm that might blast us for a third year, but also embracing the good days, and feeling very grateful for every last one we get.

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There’s more to tell and it would be easier if I’d write here more regularly, so I’ll work on that too.  I just found more siblings – a younger half-brother and sister on my birth father’s side.  They didn’t know I existed, which is a whole lot different from finding my birth mother’s daughter, Barbara, who had been looking for me my whole life.

My new brother and sister both seem interested in at least emailing, which is more than I’d expected.   Given the situation, I won’t mention names or post pics.  I was born just days after our father married their mother, which doesn’t sound very good.  The last thing I want is to cause a rift in their parents’ long and happy marriage, so I’m going to let my new siblings decide how to handle what must be very shocking news.

Who’d have thought this only child would end up with so many sisters and brothers?  I wonder if there could be more even I don’t know.  Life throws curve balls.  I’m as ready for them as I could be, I reckon.

Here’s to a happy Halloween for Boo, and all of you!  I’ll keep you posted on that storm, if it lands…

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And so the child who once wouldn’t wear a hat or a hood or a cap, no matter what the circumstance, is now the teenager who wears his hood up and tied securely around his face.  I have several photos of him, several weeks in a row, sitting in the back on car ride (he hasn’t been coming in to Andy’s apartment for his visits lately).  In each photo he’s got the blue coat on with its hood up.  Last Sunday while parked in Andy’s driveway, Jonah declared blue shirt on?  – so Andy went inside and changed into one of many blue shirts he keeps in a special place for just such a request.  Thus appropriately garbed, he got back in the car and prepared for another ride.

My mother, who stays back at the apartment for these rides, visits Jonah in the car when we come back and park after each loop.  Nearly always she has a cheeseburger and fries, and this week she’d brought him 4 Thin Mint Girl Scout cookies as well.  Jonah has been happy, silly, all smiles and loving his rides, rocking in his seat to hip-hop and Top 40, wanting it as loud as we’ll allow.  On?  On?!  (It means louder, please in Jonahspeak). There is a CD of dance music I made for him more than ten years ago now, and he asks for it by requesting Mama CD?  Week after week, once this particular CD is in, he requests 3 specific numbers of song tracks and then says all done mama CD.

This time, however, we pulled into the driveway during the 3rd song – and, distracted by grandma and cheeseburger, Jonah wasn’t on top of his DJ game so the CD continued to play.  I didn’t know he could even see the track numbers on the dashboard CD display, but when Andy got back in the car for a second loop, Jonah piped up: 13?  

Andy went to track 13, the song Funkytown came on, and Jonah wanted it louder right away:  On?  When it was over he said 13? again.  And again, and then once more, before deciding he’d had enough talkin’ bout moo-ooo-vin’ and wanted some radio.  Last weekend I was fighting off a migraine and had to cut my visit one loop short because I couldn’t take another song.

Hopefully, with the coming of the springtime we’ll get him out of the car and into the apartment or over to the park, even.  For now we’re all just collectively grateful he’s been good.  His move to the new residence seems to have coincided with the good, though I hate to play the cause and effect game, as it proves faulty at least some of the time.

Grateful are we, as always, to the caregivers at his residence and school.  Last week I walked down to the Capitol and joined hundreds of other parents, care workers, and clients for the Be Fair to Direct Care rally.  We are asking Governor Cuomo to include at least 45 million dollars in the budget for an increase in pay for direct care workers throughout New York State.  Anderson parents were asked to bring a photo of our child, so I came with Jonah’s picture and cheered with the others when the Governor himself, in a rare personal appearance, came out to address the crowd and promise he wouldn’t sign the budget without the requested money in it.

Direct care workers deserve fair pay – excellent pay, even – for they protect, feed, clean, play with, and comfort our kids.  They deal with all manner of random issues working with them – things that are frightening, or gross, or just plain exhausting.

I was proud and honored to be a part of this effort on their behalf.

P.S.  Yes, I changed the name of the blog.  It feels right to do it now, and I like it better.  Until next time…

Jonah and I say thank you to all caregivers everywhere – and Happy Spring to you all!

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Jonah’s 15th birthday was Tuesday, March 7th.  He did really well at school – they had a little party for him, he had a big ice cream cake at his residence, and in general he’s been better behaviorally again.  I’ve been depressed, and off-the-charts anxious, and am figuring out new doctors and medications – hence my infrequent blog posts.  I don’t want to complain and rave about myself but I’ve been isolating from people and sleeping too much, struggling to wait for the springtime, hoping it brings me peace with its sunshine and warmth.  I am grateful I have a good job working for an organization that helps empower disabled people, which is kind of perfect for me.

One thing Andy and I have to do now is begin the process of identifying our hopes and goals for Jonah’s future, including adult placement options.  It’s overwhelming to consider – seems every time I get accustomed to one part of this journey, another comes along and sweeps the rug right from under my already unsteady legs.  I have a name and number to call and get us started.  They recommend beginning the process at age 15, even though individuals at the Anderson Center for Autism do not “age out” until they turn 21.  There’s a lot to it – we need to get things in place with social services, disability, ensuring we have guardianship, setting up a special needs trust, and more.  And under this new administration I feel Jonah is less protected, his services jeopardized.

I hope I’m wrong.

I’ll be back as I can with updates, and photos, and to share more than I am able to lately.

Happy Birthday, Boo!

 

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