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Posts Tagged ‘guardianship’

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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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…

 

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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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