Feeds:
Posts
Comments

Posts Tagged ‘Cake’

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.

Read Full Post »

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

Read Full Post »

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

Read Full Post »

%d bloggers like this: