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Posts Tagged ‘Cake’

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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How’s it going to be
When there’s no one there to talk to
Between you and me?

~ Third Eye Blind

I haven’t been writing much, except for work.  I am a hermit in my house like a winter bear.  It feels cozy-nice.  Plus I do truly good things for my job, and from home where it is easy to hermitize. However, I realize I need to move my limbs and go out and be somewhat social.  Yesterday I went for a mile walk, which is only 20% of what my pedometer app recommends.  But I figure a mile in my own moccasins is better than no miles on the couch.

I shall emerge groundhog-esque tomorrow for a doctor appointment, to have breakfast with my dad, and to visit my Uncle J in the hospital.  Saturday there is always Boo, which forces me out and away from home to see my sweet son.  Last week I played him Meanwhile, Rick James (Jonah calls it “the clapping song” and can do all that clapping in time) — Boo and I danced all around the living room, of course mostly in circles, singing and laughing…I hadn’t played it for him in years but something clicked in his head, and he remembered and requested it.  He requests teachers and babysitters from years ago, too.

He remembers things, my Boo.

He is also clever, and has a fantastic invented communication system to navigate the maze around which his verbal skills cannot puzzle out just yet.  Let’s say he wants a car ride, but he also wants to make sure that it’s not the car ride back to his residence.  What he will say to communicate this is “Wanna take a bath?” which makes no sense to anyone but Andy, me, and my mother.  What he is really saying is can we go for a car ride now and then come back here again after that so I can take a bath or at least not have to go back to the residence just yet?

Andy decoded all this.  I take no credit.

Not an hour after the happy dancing clapping song,  Jonah is screaming in Andy’s bedroom on the Big Blue Bed because he’d hit Andy and is trying his damnedest to attack him.  Hard.  I stay close, ready to help, watching as Jonah’s kicks hit Andy’s kidneys, his face, his torso, wanting to jump in and help but Andy told me not to, he always tells me not to, my mother in the kitchen nervous nervous nervous all the happy dancing energy lost in this new development.

And then it is over, and Boo is requesting Cranberry Guster? (What he calls their Easy Wonderful CD) because I am trying to re-expand his musical choices beyond Prince (sorry, Andy).  Boo remembers the Guster days of course and loved when we put it on.  My mother would like him to listen to The Sound of Music but I’ll settle for Cake or Guster or even Snoop Dog (or it is Wolf now)?  Less Lady Gaga and more They Might Be Giants.  I just want him to listen to and love lots of different music.

These days I feel so much like half a mother, and it’s too hard to explain to people who try to reassure me I am of course a whole mother and blah blah blah.   Facebook doesn’t help.  Everyone has stories, accomplishments, outings to share.  There’s too much silence in my house.  I turn on TV just to hear the noise (instead of embracing the silence as I should) and I feel bad for those who live alone.  I have two pets with me during the day and a partner at night but I do not have my child and I know now he will likely never live with me again.

For a while I think I assumed his placement would be temporary, that he would get better like in a hospital and then come home.  No.  That’s not right.  I don’t think I assumed anything, actually.  I was in a place of desperation and there was no extra time for anything but panic and aggression, emergency and breakdown.

I spoke with his case worker at school and deteriorated into tears.  I am Queen of the Endless Questions.  My prayers are please and thank you.  And it’s so hard for me to talk about Jonah.  Thank God I write.

Has this post deteriorated into rambling?  Ramble on

I do want to communicate with someone who also has placed an only child in residential care.   I can talk to Andy but we almost never talk about that.  I feel like such a tiny demographic.

“I am an island…..”     ~ Paul Simon

No, that won’t work.  In that song an island never cries.

Here’s a picture or two instead of a stereotypical quote:

nothing beats a little daddy love

nothing beats a little daddy love

Jonah invented a new suck-your-thumb-while-giving-a-gang-signal, supercool move

Jonah invented a new suck-your-thumb-while-giving-a-gang-signal

Love you, sweetheart.

Mama see you soon.

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Jonah turned 11 on March 7th.

This weekend I couldn’t see him; I was on a business trip to an adoption conference in NYC, so Andy brought Jonah up Friday evening (the day after his birthday) and I met them at oft-requested grandma’s house.

Evidently Boo was a good boy the night before at the residence, where they threw a little party with pizza and cake.   I guess as soon as Jonah understood it was his birthday party, he began incessantly requesting cake.  All through the party.  Cake?  cake?  cake?   And to be even more specific, what he really meant was frosting?  frosting?  frosting?

Perhaps for his birthday next year I will give him a whole tub of frosting right at the beginning of the party.

Of course I am being facetious and am in fact trying harder to pay careful attention to what he is eating and drinking.  Last post was all about how I want an answer to his aggression, and I figure the first place to look is nutrition & what is going into his body.    The school has a nutritionist and I may request the guidelines or whatever to pay more careful attention to Jonah’s diet.  In all probability it is me who gives him more “junk” food than anyone.  He actually eats his vegetables (and certainly gets no black soda) at school, that’s for sure.  Andy always has salad, vegetables, and healthy things for Jonah to eat.  I’ve ordered a continuous prescription of chewable Omega-3s; I think he’s been on them for a year or so now.

Most of the limited medical research I ‘ve done so far emphasizes the comorbidity of autism (particularly that which is accompanied by aggression) with stomach problems and/or sleeping difficulties.  Jonah goes to sleep early and sleeps well through the night, and he doesn’t have stomach difficulty.  Unless you count that the food gets down there unmasticated, as he is wont to shove great chunks of food into his mouth and needs constant reminders to take small bites.  Maybe that does mean something.  One of the problems with this kind of research is that I find either ‘autism 101’ filler pieces about how behavioral problems are addressed through ABA, sensory toys, social stories, etc. or I find articles and dissertations out of advanced medical journals and can’t even comprehend half of what I’m reading.

So I will dig a little more every day.

On Friday Jonah enjoyed his mini-party at grandma’s house.  She’d bought him two helium Happy Birthday balloons, which of course he loved, and as a treat we got him Burger King.  Of course, this was topped off by two baths and a very auspicious car ride to see train, which arrived at the crossing just as we did.  Jonah rolled down his window and stared at the passing railcars.  It was a very good visit.  Boo gave lots of hugs and kisses, and requested music? if we weren’t playing it loud enough.

Boo tries to share a french fry with his balloon

Boo tries to share a french fry with his birthday balloon

“How old are you now, Boo?”

No answer.

“How old is Jonah now?

I’mtenyearold he replies in a word-slur only someone used to his enunciation can understand.

“Guess what, Boo?  You’re eleven years old now!”

Evvenyearold, he tells me.

“That’s right, Boo, you’re eleven now.  How old is Jonah now?”

I’mtenyearold, he answers, as if to say I just told you.

Gotta love my boy.

a birthday bath - one of two

a birthday bath – one of two

That night Andy kept Jonah overnight for the first time since we admitted Boo to Anderson, a year and a half ago.  And Jonah was good, and it went well, though even when he is good he is an exhausting enigma.

And here I am outside Madison Square Garden,
playing around while waiting for my train
because, underground, Penn Station feels
dizzy with people, everywhere people, blurry-quick,
moving confidently and frenetically in all directions…
and I don’t like it to be down there.

Carmelo Anthony and me

‘Carmelo Anthony’ and me

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Jonah calls my father “Pa.”  My dad called his grandfather pa, so it’s a tradition passed on.

For Father’s Day, my dad and I went to 9am Mass at the church I used to work for, then out to breakfast and to place silk flowers on his dad’s, his grandfather’s, my grandfather’s, and some other family member’s graves.  My dad wants to tell me their stories, share the history of the Wink family.  I’d like to compile it all into a book with pictures and anecdotes and all the tales he’d love to tell – if only to have it all in writing, to pass down to the younger generations.

I know it freaks him out to see his name and birth date next to his mother’s, but he said he didn’t want her to be alone, and his dad is buried in a different place:

I put small red flowers on my other grandfather’s grave, because they reminded me of how I always called him “poppy:”

I’m not a big ‘cemetery frequenter’ but they are good for reminding me to remember, to keep people alive in my memory.

The next day my dad e-mailed me to tell me what a good Father’s Day he’d had, and how much it meant to him.  It meant a lot to me, too – but my day wasn’t over yet.  M did not get to have his children with him for Father’s Day, so he helped me watch Jonah to give Andy a few hours’ break.  We mostly drove him around.  He was pretty good for us, we saw a train or two, let him direct our path – and request different music:  clapping song?  he asks, meaning Cake’s album, Comfort Eagle, 

  • although he’ll listen to the whole CD, what he really means by clapping song is song #2, a song called Meanwhile Rick James which, without printing up the lyrics, appears to be a song about chicks doing lines of coke in the bathroom at a party while Rick James “takes her nude, and there’s nothing I can do.”   It’s not Sesame Street we’re jamming out to, but all Jonah knows is it has lots of these clapping sounds throughout, and he loves that.

Then we go to see red barn in Guilderland, go up up up to Berne, all around Thatcher Park and Warner Lake, and finally go home, back to daddy and take bath.

It has been another difficult few days since then, mentally, for me.  The fact that in less than a week I will know if and when he will be accepted into the Anderson Center for Autism, the fact that if they can take him it will likely be very soon, and the question marks of how the direct care staff, at any facility, will treat him.  I fully intend to somehow augment their undoubtedly meager salaries, because they do the really hard stuff – they get kicked, beat, hit, scratched, puked on.  They clean shit off the walls.  There isn’t much of a break from it.  I am so grateful for dedicated people who work in this capacity with these disabled individuals.  If I were rich I would donate a few million dollars and demand that it be allocated to staff salaries.

I lost it so ridiculously this morning about the impending surrender of our son, and a whole lot more I don’t want to write about – intense anger directed at me by more than one person, a surreal feeling of floating above this whole situation, the terror of the very real possibility of my inability to come out the other side…that it was very hard to “keep it together” at work.

I bounce back every time, though.  Seeing the graves reminded me to embrace the good, even if I have to draw it from my past for a while – my sweet, cuddle-boo…

…for soon enough it will all be gone — for all of us — all the fear, the worry, the joy and pain, all of it gone.

Unlike Trix, death is for everyone!

– – –

“Live in the now!’  ~Garth, Wayne’s World

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