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Posts Tagged ‘birthday’

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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I started working on a new blog.  Here’s a first glimpse.  I’ll be adding actual content, soonish, and I’ll continue to blog here as well.

My mom and I have been switching the days we drive down to visit Boo from Saturday to Sunday, based on Andy’s work schedule, which is fine except it sure doesn’t help me remember what day it is.

This past Saturday we’d planned to celebrate Jonah’s 13th birthday.  I bought him a few little things (flash cards and small fidget toys) and my mom got him big helium balloons and a chocolate cupcake-cake with a singing candle.  We left the cupcakes in the car so Boo wouldn’t go straight for them without eating his lunch.

I was tummysick but pushed through (bad choice of words, Amy) and we arrived unscathed.  We opened the door to see Jonah coming in the room on daddy’s shoulders, piggyback, all smiles in his pajamas.  He’d slept at Andy’s the night before.  I don’t know how Andy accomplishes overnights with Jonah, but he does – and I have to give him a whole ton of credit for it.

Pretty early on in our visit Jonah attacked me, snatching and mangling my glasses, yanking a fistful of hair, clawing at my face — with no warning, for no reason.   It’s been a while since he came at me like that.  Andy managed him in the bedroom while I wrangled my pliable glasses and tangled hair back into shape.

I’m remembering it in shards.  Hard to articulate how it felt, what with me being sick on top of it, and Andy so tired, and my mom trying her best to thread us all together – to patch the pieces.

I remember helping Jonah with his bath, playing our kiss eye? & kiss lips? game gently, even though he had attacked me less than an hour ago.  He’d eaten a cupcake on the side of the tub and there were crumbs in the bath.  He allowed me to hang out while he splashed around in the almost-too-hot-but-that’s-the-way-he-loves-it water.

And when he was all done, I remember he wanted a piggy back ride out of the bathroom, wrapped in a towel.  Sorry, kiddo.  Mama’s not Wonder Woman.

I remember Jonah wanted my mother on his car ride, no mama, which was okay with me because then I could lie down.  And when they returned my mom went back out to the car to get Boo’s cupcake-cake and candle, and she brought it in to fix it for him, but Andy was keeping him quiet in his room after more aggressions.

Mom stood ready to light the candle, uncertain.  I watched, sick and disappointed — almost disinterested — from the couch.

All done?  All done?  Jonah cried, craning his neck around daddy to see his treats.

After a few minutes Andy let him leave his room, and my mother lit the candle, but she was the only one with heart enough to sing Happy Birthday to 13-year-old Jonah Russell Krebs.  Andy and I just kind of mumbled it.

But my mother always has heart enough to sing for Jonah.

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Sometimes blogging feels like tightrope-walking.  What to say, how to say it, what details to include.  There’s so much history here now.  Do I just tell a story, or maybe fill an entry with pictures?  What’s appropriate to put out there?  I usually just say what I’ve got to say, but sometimes it’s tricky.

If I’ve got an 8-second video of an 11-year-old Jonah with his wide, adorable smile, looking right at me and speaking clear-as-day:  fuck!  followed by my immediate response of laughter, is it cool for me to post that without seeming like I’m proud of it?  Hell, I laughed.  Sometimes you just gotta laugh.

The thing is I know (some of) who reads this blog, and I know if I say such-and-such it’ll get back to so-and-so, and then I have to decide how to tell my story or, sometimes, whether or not to tell it at all.

Andy and I have some unspoken tales of sadness and ennui that will likely never be told.  Macht nichts, I suppose.  Discretion, diplomacy.  I never was good with filters, so I err on the “sin of omission” side when necessary.  If I decide to tell a story I’m gonna tell the whole damn mess of it; I ain’t gonna sugarcoat it, so I better decide what I say with care.

Anyway.

On Saturday, somehow, Jonah managed to open (and set next to him) no fewer than three cans of white soda.  All this with three adults present.  Never underestimate Jonah’s quiet little conniving magic mind & abilities.

he's a quick little bugger

he’s a quick little bugger

It was Andy’s birthday, and my mom brought cupcakes.  Boo wasted no time in descending upon them.

OLYMPUS DIGITAL CAMERA

Skittles and Chuckles too.  Somewhere in there is some actual food – a tune-fish sandwich – which he ate with near-equal fervor.

I was happy to get a few cool pictures with Jonah, which has become kind of rare:

Me & Boo

Me & Boo

Me & Boo, Number Two

Me & Boo, Number Two

When he is calm and affectionate, our son is a beacon of the purest lovejoy.

In one short video, though, you can actually see Jonah’s agitation ramping up…he shows it using his hands and then finally with a swatting motion.  You’ll hear his dad reassure him:  It’s all right, buddy. 

The triumph is that he did not swat at anything but the air, just that one time.  We were all talking, and he was being told no, and he had so many foods from which to choose.  The videos sometimes make it easier to discern what’s happening and why.  Hell, the videos could very well be part of the problem, even.  That’s why I take them without him seeing me, if I can help it.  Sometimes I take the time to watch them carefully, try to learn from them.

This one’s just fun – lighting the candles on the cupcakes and Jonah gets to blow them out after we all sing to Andy (shaky harmony compliments of mama).

It was a good visit.  I hope Andy had a wonderful birthday; he deserves it.  Jonah’s had this whole week off from school and I think Andy’s picked him up for a visit every other day.  I always knew he’d be a wonderful father, before his child was even a notion.  He and Jonah share such a special bond.

Also, endeavoring to remain self-aware and true to myself, I have broken off my new relationship with Jim.  The reasons are many but none of them call into question his goodness, strength of character, or warm heart.  Some part of me wishes he could have met Jonah, for I think Jonah would have loved him – and I know Jim loves children.

I also am examining what I say in general – and how, and to whom.   These things can have a lifelong impact for good or ill.  I’d like to encounter everyone I see with a smile, to behave in a positive manner, to think before I speak – and when I do speak of others, to always find the good to say.  It’s so easy to say you believe in something and then never bring it into reality.  What you think doesn’t mean anything at all unless your actions match your intentions.

“If wisdom’s ways you wisely seek, five things observe with care…to whom you speak, of whom you speak, and  how, and why, and where.”  ~ Caroline Ingalls

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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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My little Jonah Russell turned nine years old today.  Here he is as a baby:

Here he is at two; happy boy:

And at three, on his birthday:

I can’t believe how fast he has grown; I can’t wrap my mind around everything that has changed in his lifetime.

Last night I asked M to pray for me; he’s more traditionally religious than I, so I figured he might be a little closer to “The Source,” if you will.   I asked him to please pray that Jonah is good at school today, for his birthday, his little party with cupcakes and goodie bags Andy sent in with his backpack.

Nine years ago this minute I was in a hospital bed after having requested pillow after pillow because I couldn’t get comfortable and I wanted to create a soft nest for my new sweet little peanut and me.

I remember I wouldn’t let them take him away from me, not to the nursery, not anywhere.  When they told me they had to  bring him to the nursery to weigh him or whatever, I walked along next to the little rolling bin they used and stood there over the people until they handed him back to me.

I am not saying I was right or wrong to do this, or that all the mothers who let their newborns sleep in the nursery are right or wrong – it’s just what I did.  I didn’t want to be away from him.  Not for the night; not for a minute.  I just wanted to hold him and nurse him and watch  him and marvel at him.

And so I did.

Almost all the schools in the Capital District were closed today, but not Wildwood, Jonah’s school.  Kids are bussed in from so many different school districts that sometimes the school stays open and just takes whatever kids make it in.  The Albany City School District was closed, so the busses didn’t come, but Andy drove him in, cupcakes, goodie bags, and all.  I think my son was literally one of a handful of students in the whole place today.

And just like M prayed for me, Jonah had a very good day at school.  I’m sure there wasn’t much of a party, and he was tough to handle both before and after school, but what I asked for was that he have a good day at school, and that’s exactly what I got.  He had zero aggressions.  Thanks, M, for praying it into reality.

Now that we are placing Jonah in a residential educational school, I think maybe there was a reason I clung to him like a burr when he was first born.  I think maybe it was because something deep inside my heart was telling me I wouldn’t be able to hold on to him for long – that we would lose him, in a sense…that he would have to go away.

Jonah doesn’t know it’s his birthday,  but for the first time ever there was no family birthday party, like every other year in our finished basement, Aunt T’s unfailingly delicious homemade chocolate cake the centerpiece of each celebration, its recipe passed down from her grandmother, always iced in chocolate too — a hand-decorated Happy Birthday Jonah squeezed in sweet blue icing next to a questionably identifiable drawing of a whale (Jonah’s home for three days in the Bible).


This site is one of many that tells the Story of Jonah.

“As Jonah is sinking into the sea, a big fish (whale) swallows him. (Jonah 1:17) Here we see God’s great mercy. He could have let Jonah suffer the consequences of his actions and drown. Yet, God intervenes and spares Jonah’s life. We often complain to God about the consequences of our sins but do we ever wonder how often He has spared us from consequences? I rarely ever think about that.”

I know I have been spared from many, many consequences.  But for the first time ever there isn’t a celebration around this day.  There’s too much behind it.  Around it.

And, just like the day he was born, I don’t want to let go of my little baby boy.


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