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Archive for the ‘echolalia’ Category

Last Saturday I brought the big-ass pillow with us (the kind that you use as a backrest, with two “arms” on either side) and we successfully got all 4 of us in the car for a ride.  The pillow served to protect the backseat occupant with its bulk and punching-bag-like sturdiness.

The way we accomplished it was to put the pillow in the backseat right from the time we picked Boo up at the residence, and then after his lunch, we told him “we’re all going to the grocery store and grandma’s coming too.”  When he started to protest we reminded him that we’re going to buy chocolate donuts but only if grandma can come.  And by gosh, it worked.  He was even good in the car — he liked the pillow and rubbed it as we drove along.

Boo with his new grey pillow

Boo with his new grey pillow

a soft barrier

a soft barrier

I taped a small conversation we had along the way, though he’s parroting through most of it:

Overall it was a good visit.  At the store Boo successfully navigated the cart politely around other shoppers to the exact location where the beloved chocolate donuts awaited his arrival.  This Saturday we switched our visit to Sunday, so I will see him tomorrow, on Father’s Day, then come home in time to take my own dad out for dinner.

Instead M and I indulged in other plans, afterward ending up driving near Thatcher Park.  What a gorgeous day.

gorgeous day for it

beautiful

the bluest sky

the bluest sky

When we got home M wanted a nap so I took a walk alone to Buckingham Park and took some more pictures, then made some “nature art.”

Always there are ducks and geese, fish and turtles.

Always there are ducks and geese, fish and turtles.

I liked this little boy and took his picture as he watched a goose

I liked this little boy and took his picture at the park

I sat in the grass and I materials that were within reach

I sat in the grass and used materials that were within reach

On Wednesday Jonah had another follow-up appointment with the eye doc/surgeon.  It wasn’t a good visit.  I’m grateful that sometimes it is easier to handle Jonah’s outbursts/aggressions/whatever-you-wanna-call-them.  Sometimes they roll off me like rain washing river-paths along my body, navigating around my heart.  I don’t know why – I wish I could tap into those “sometimes” all the time.  Maybe it had something to do with the rain falling on us all week…

…but, at first, he was good.  Two care-givers from the school brought him up, so I felt more secure knowing they were there.  Still, I came armed with fruit snacks and a yellow octopus I’d bought ahead of time.  He liked both of these gifts.

all, at first, was fine

all, at first, was fine

He even smiled as she guided his head into the eye machine

He even smiled as she guided his head into the eye machine

She told us the pressure in his eye was 18 – nice and low.  She doubted herself and took the measurement again, and got 17.  She looked in his eye and said there was a lot less blood present.  We asked if he could go without the eye shield now but she said no.  This means he’s been wearing the thing for more than a month and has to keep wearing it for we-don’t-know-how-long.  Then she asked Jonah to sit back in the chair and he suddenly freaked, arching his back and standing up, his face melting into anger and sadness.

You can see one caregiver behind him and one in front.

You can see one caregiver behind him and one in front.

And yes, in case you’re wondering, it is awkward for me to whip out a camera at these moments to take a picture (all in the name of photo-journalism).  One more pic, and then I was required to enter the fray.

??????????????????????

Moments after this picture he bit N’s wrist, hard, drawing blood.  (The dude is about to retire; I bet he feels it’s none too soon).

After this we got Jonah down on the floor, where he thrashed, kicked, hit, head-butted…the usual whole 9 yards.  In the interest of protecting the two of us at his feet, I leaned in to take off his left shoe and BAM he thrust forward at the same time and kicked the shit out of my right shoulder and, afterward, scratched me up right between the eyes. (I never wear glasses around Boo anymore).  Eventually it took me, the two caregivers, and even the doc herself to get Jonah under control.

My tears were brief, and all for Jonah this time, whose face crumpled, desperately upset — innocent even in the midst of the aggressions.  The doc hadn’t yet done the ultrasound, which is an important part of the whole exam, but she made the wise choice to put this off, scheduling another appointment for a week away, making this coming Wednesday another anticipated & exciting attempt at examining his eye properly.

Then we somehow convinced Jonah that it was all over, that there would be no more doctor, that we were all done.  N was able to stand him up and guide him out of the office, holding both his arms.  I stayed behind to check out and make the next appointment.  Of course I could feel all  eyes on me, all the seated, (mostly) senior citizens who’d heard the screaming and carrying on, but I’m used to that.  What I’m not used to is what happened next with the elderly lady in line behind me.  I glanced at her and smiled, but she narrowed her eyes at me, the corners of her mouth turning sour-down in disapproval, shaking her head as if to say “what a shame you can’t raise a child who isn’t such a brat.”  Instead of shoving her over like I wanted to, I turned back to the receptionist, got our paperwork and appointment card, and quickly walked away.

Andy just called and said Jonah was good today, both with him and at the residence.  May tomorrow be a happy day too.

Happy Father’s Day to all the fathers out there, all the step-fathers, foster fathers, grandfathers, and people who act as fathers to others….to all the fathers no longer with us, to all the brand new fathers, and to fathers who are sick or alone, and to all the men who decided not to be fathers because they were mature enough to know they didn’t want to do it.

When it is Mother’s Day I usually also give a shout-out to all birth mothers who selflessly made adoption plans for their babies, but I don’t feel the same way about birth fathers.  Perhaps I should, but I just don’t.  At least not about the ones who don’t stick around long enough to see the whole thing through, and I haven’t heard about too many of those.   I couldn’t give a crap about my birth father…who he is, or where he is, or why.  At least my birth mother carried me in her womb and then had whatever it takes to watch as they took me away.

I miss my mom’s dad, who I called “Poppy.”  Jonah’s middle name is Poppy’s first name — Russell.   He died just after I’d gotten engaged to Andy.  I wish I could have known my other grandfather, my dad’s dad, but he died when I was a year old or so.  He was a deputy fire chief in Albany, and was just 57 when he passed away.

I honor Andy as our son’s father, and I’m looking forward to honoring my own father too, by spending some time with him and taking him out to dinner later in the day.

It has been good.  I feel like I can handle things.  And I’m grateful for that.

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Andy called me this morning to remind me about Jonah’s glaucoma appointment with Dr. S.  

I’d totally forgotten about it so it’s a good thing he did call.  E and J brought Jonah up and I met them all at the office.  We always wait in the hallway because the waiting room is full of mostly 60-90 year olds, and Jonah could take every one of them down if we didn’t stop him.  Bruce Banner turned into the Hulk; Jonah turns into the Tasmanian Devil.

Wikipedia describes Taz as a dim-witted omnivore with a notoriously short temper and little patience. He will eat anything and everything, with an appetite that seems to know no bounds. He is best known for his speech consisting mostly of grunts, growls and rasps, and his ability to spin and bite through just about anything.

Yeah, that sounds a little like Boo.

He was all ramped up today when I first got there, and I’d already stashed my new glasses in the car, so I was literally going in blind.  Luckily he was lovey, and though he answered “no” when I asked if he wanted to sing a song, eventually he capitulated and took turns singing lines of Fa Fa and Keep it Together with me.

OLYMPUS DIGITAL CAMERA

He wanted to touch and knock at the pictures hanging on the wall.  Quiet hands, Jonah, we told him.

OLYMPUS DIGITAL CAMERA

He sat patiently, for the most part.  Then he’d get up, walk in a circle, and sit down again,

J is holding both of Jonah’s hands and rocking back and forth with him, telling Jonah silliness that Jonah loves to repeat…we had to wait for a little while and Jonah was getting impatient.

When the nurse tested his vision, he held up the little black plastic thingee that covers one eye and read what he could.  He’s fine when he can use his right eye, but his left seems much harder for him.  He gets frustrated and tries to cheat.  When redirected he becomes angry, maybe throwing the plastic thingee or hitting the nearest person.  But today he just gave a half-hearted swat into the air and allowed the doc to examine him.

“Okay, buddy, sit on your knees,” says the doctor.  Jonah just sits there.  J and E try to help explain it to Jonah, who then rises until he’s standing on the chair.  Finally J and E have to help Jonah into a kneeling sit so Jonah can scootch himself up and into the eye machine, miraculously cooperative of bright pins of light, strange machinery, a doctor telling you to look this-way-then-that-way, eye drops, and a gadget that touches your eyeball and take its pressure.

Amazing.

M & I took tomorrow off work to travel downstate and see another Guster show; we’re staying overnight, then M will drop me off at Andy’s on the way back.  After our visit with Boo I’ll hitch a ride back to Albany with my mom.

Sounds like a sweet plan.  I think the amount of times I’ve seen the Grateful Dead and the amount of times I’ve seen Guster must be about the same now.  Something like 18 each, maybe.  I wonder if I’m the only person who was first a Deadhead and then a Gusterrhoid.

The thing is, every show is different – every show a re-energizing.  I’m excited to see them.  And Boo.

(He’s kind of re-energizing too).

O

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Raymond:  97X. Bam!  The future of rock ‘n’ roll.   
97X. Bam!  The future of rock ‘n’ roll.  
97X, Bam!  The future of rock ‘n’ roll.

~ Raymond Babbitt in Rainman

Oh, my sweet, precious little boy.  What a wonder you are!

This is the third Thanksgiving I’ve described in this blog.  Hard to believe..  The first was awful – so awful, in fact, that just days later I would check myself into a mental health facility, the second was fun (and was paired with two Guster shows, so how could one go wrong?), and yesterday, Thanksgiving 2012, which was easy-wonderful.

Andy was nice enough to drive Jonah up to Grandma’s house, and I met them there.  My boo came crashing through the front door, shrieking with happiness.  We ate turkey sandwiches; Jonah ate one and a hot dog as well, and chips, and bacon, and “white ice cream.”  He asked for train and we drove him there even though we knew Thanksgiving trains are few and far between.  All the way there my mom sat in the backseat with Jonah, but he kept asking mama in the backseat?  And my mother told him, “yes, sweetheart, as soon as we stop for the train.”  It made me feel good; usually he wants grandma in the backseat.

He also wanted music, and daddy turned up this station that he and Jonah enjoy: 92.3 FLY.  After one of the songs they announced the call station with snazzy-jingle-music and the deep voice and all.  Jonah immediately parroted it, really well, too, if I don’t say so myself.  92.3 – WFLY!  92.3 – WFLY!  92.3 – WFLY!  None of us could help laughing, which only encouraged him.  Giggling, he kept at it for a while, just like Rainman.

So there was no train, but I got to sit in the backseat with my Boo – and instead of telling me move (which means get as far away from me as possible and do not even look at me), he asked for hugs.  Over and over again he wanted hugs.  Bear hugs, he even said.  And so I reveled in this, moved close to him, wrapped my arms around him, and hugged tight, raining kisses on his Beatle-length hair.  More bear hug?  he pleaded, looking up at me sweetly.  Yes, Boo, I replied, hugging him closer, tighter, until it felt like we were one.  Oh thank you, I said silently.  Thank you.

And this week I get to see him again – tomorrow, which I hope will be as beautiful as today – and Jonah as lovey.

daddy-hugs

Before Andy and Jonah left, they came inside to get their share of a Thanksgiving dinner my mom had made just for the few of us.  So she had a bag with all their food in it, and Jonah and Andy were saying goodbye, when Jonah opened the freezer, snagged the rest of the bacon, put it into the bag of food, then looked up at us all as if to say “k, let’s go.”  Of course grandma let him take the bacon.

Mom and I had coffee afterwards and laughed at Boo’s adorable little ways.  We both had tears behind our laughter, but they were mostly good, happy, thankful tears.

We’ve plenty to give thanks for, that’s for sure.

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It’s pi day (3/14)

So here are 3.14159265etc. awesome things about Jonah…

1.  He eats salad greens, quite happily, too, thanks to his dad…even if it is as finger-food.

2.  Some days, like today, he has only one or two aggressions at school.

3.  He still offers up these awesomely huge smiles, even on the bad days –

.14159265   He loves to roller skate (and has brand new skates that he got for his birthday from Grandma).

I only saw Jonah for a few minutes today.  I stopped at the house, and Jonah requested “peanut butter roll,” which translates into “car ride to Stewart’s next to the Voorheesville train tracks to buy me a hard roll with peanut butter on it.”

He’s gone from:

  • waiting (relatively) patiently for 20 minutes in the earnest hope that a train might possibly come by, then laughing and clapping at the train’s approach and passage…

to:

  • complaining “all done train” whenever we have the unfortunate timing of arriving at the tracks just as a train is passing (all while remaining single-mindedly fixed on the notion of attaining peanut butter roll).

…but we didn’t make it to peanut butter roll because Jonah hit the window of the car door, so we turned around and went home.  We’re going with the ‘consistency punishment method’.  But are we trying to teach him something he can’t learn, or does it sink into his head?  Based on results, we’re not sure; it takes 4 or 5 trips lately to get to peanut butter roll (or even grandma).

Andy even sits him down and explains the deal.  “If you hit the window, we’re going home,”  he’ll tell him.  “No hitting the window.”  And sometimes Jonah’ll say “no hit window.”  Is this echolalia or does he get it?  If he gets it, does he forget it right away?

Next time we go the child psychiatrist we might ask about base-lining him by stopping the meds altogether for a while.  Jonah doesn’t want to play much anymore and he’s lost some of his personality, and the behaviors aren’t really mitigated enough to justify continuing the meds.  Then, if we have to, we can try a new med…a new behavioral method…a new path.  Something else!

So no peanut butter roll, and I doubt there’s any pi in the house.

Sorry, boo.

P.S.  I never understood pi.  Not even a little bit.

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Most mornings, Jonah wakes up and loiters near his bedroom doorway, making little noises until Andy or I extend an invitation for him to come in our room.  We didn’t teach him this; it’s not like with the potty, where we dangle the ‘black soda carrot’ to elicit a desired behavior.  I have no idea what makes him wait at the threshold of his room when he clearly wants to jump in bed with us (and when this kind of self-regulation appears to be lacking entirely in every other instance of his life).  But wait he does.  This morning:

“Where’s my bunny?” I call out to him.  It’s 7:15am, kind of late for Jonah to be first waking and uttering his jabberwocky.  He comes running in and around to my side of the bed, where I pull back the sheet so he can get under the covers.  It’s awfully early but I’m an early bird by nature, and the truth is I love this time with Jonah, when I get to hug him close and kiss the top of his little almost-blonde head, when I get to squeeze him tight and sing “he’s the best little boy in the –”

–and hear Jonah’s little voice finishing the phrase: “– whole wide world!”

Today, though, I am particularly tired when he comes bounding in.  “Let’s go back to sleepy bye,” I whisper in a not-so-convincing excited voice.  For a while he cuddles but then gets restless and begins his daily litany of requests, repetitions, rituals…

Sighing, I mutter a phrase we say jokingly at work all the time: “Dear God and little baby Jesus help me.”

Reliably, Jonah repeats what he thinks he has heard.  “Help me, baby Jason!”

Laughing, I sit up.  “Wanna go see train?” I ask, figuring he’s going to ask me anyway so I’ll beat him to the punch.

Moneycoin?” he asks.  So it’s going to be a moneycoin kind of day. I get him a Tupperware container with maybe an inch or two of moneycoin inside; he is delighted.  “Moneycoin!” he shouts in gleeful agreement.  Then:  “train?” he asks.  “Yes, boo, we can go see the train too,” I generously concede.

On the way, we turn Guster up loud – and Jonah’s Tupperware container of moneycoin is a fine percussion instrument.  “So go… on!  If it’ll make you happier!” he sing-shouts, shaking his moneycoin around to the beat.  During the next song, a quieter tune, he gently swishes the moneycoin inside the container with his hand. Never let it be said my boy can’t break it down.

We even see two trainssomething spectacularly fortuitous. Later, we go with Grandma Jane to the park and Jonah brings his moneycoin along; for a while he just sits on a picnic bench and lets it run through his fingers in a miserly fashion.


Then he carries it to the top of the slide and dumps it down, a great rain of moneycoin falling into a shiny scattered pile at the bottom. A couple of two-or-three-year-old kids try to talk to Jonah at one point.

“Hi!” the little girl says brightly.  I prompt Jonah, who is so engrossed in the world of moneycoin, he probably doesn’t even hear the kid.

“Say hi, boo,” I tell him.

“Hi,” he says without looking up.  The precocious girl is indignant. “I”m over here,” she insists.

“He’s not much of a talker,” I explain.  My mother-in-law has already told the parents that Jonah has autism.  The little kids quickly lose interest and run off, laughing at some shared tidbit.  They’re awfully cute, those kids.

My boy, on the other hand, is completely grimy, dirt coating his hands, his grubby clothes, most of his face, and of course, his bare feet.  Jonah hears a train horn and goes tearing off toward the car.  We spring into action and actually catch the damn thing at the tracks.  Sweet.

After the park and the bonus-train, we visit Grandma Jane and Grandpa Jim’s house, where Jonah dumps the remaining moneycoin, this time in their driveway.

We got home a little while ago.  Now he’s in the bath, washing off round one of what will likely be two or three rounds-worth of dirt he’ll acquire today.

Dear God and little baby Jason help us.

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Bad day for the J-Dog at Wildwood’s Altamont summer camp.   He hit, he whined, he needed to be restrained, and he incurred “several” time outs, according to his log book in which the staff communicates these things to us.

I have a secret:  I hate opening his log book. I hate the hope I feel that they will tell me he was so very well behaved and did or said or accomplished something really cool…and I hate knowing those kind of log book entries are exceedingly rare.

Every morning, I kiss Jonah goodbye and say “you be a good boy today, okay?” and he usually parrots “good boy?” like it’s a question he’s asking me: who and what, exactly, is a good boy?

I know there’s a better than even chance he won’t be a “good boy,” and I feel helpless to change it.  When he’s home, Andy and I can banish him to his room for “quiet time” for as long as necessary.  We feel more in control because we can offer immediate consequences and positive reinforcements too.  Without being right at camp (or school) with him, it’s hard to really get to the bottom of what’s going on when he has a “bad day.”

I often worry he might be hurting or sick and unable to articulate that, so he acts out as a result.  (I’ve never heard him verbalize a physical ailment, whether it be a tummy ache, a head ache, or anything else, aside from him whimpering “eye hurt” after his eye surgery in the spring).

Then I worry that I am making excuses for him.  Then I worry that he’ll just get bigger, and stronger, and more aggressive, and we’ll be bruised and broken by the time he’s a teenager.  I don’t like to think about it, so then I worry that I’ve just got the ostrich-mom-with-her-head-in-the-sand syndrome.  I just really don’t know, and then I worry that I’m too uninvolved in changing that, in figuring something out, in knowing something about what is going on and what to do about it.

After this week, Jonah has 3 weeks of break between summer camp and school.  It is without a doubt the most difficult 3 weeks of the calendar year for us, especially for Andy, who will take the time off from his part-time construction work to care for Jonah during the days while I work.  I used to be the stay at home mom, but Andy and I switched roles in the fall of 2007, so now I earn most of the moneycoin, and Andy is Jonah’s primary caregiver.  I admit Andy is better at it than me.   He’s more patient and a stronger disciplinarian too, hands down.  They won’t be handing me the Mother of the Year award any time soon.

So Jonah carried his behavior home today, bringing a whole new definition to the word obnoxious.  The respite sitter was here tonight (thank you to both the sitter and our local Catholic Charities for providing the respite) but Andy and I still have to shadow her, intervening when Jonah gets angry or loud, guiding her in how and when to give “time outs,” and, tonight, changing the 4 or 5 poops he did in rapid succession (none on the toilet, though we sure did try), so by the time the sitter left, our whole house stank to high hell, and now we’re very tired, and neither of us feels well, and we are collectively very cranky.

Bedtime is fantastic. After we put Jonah to bed (and thankfully he goes to bed well), I get myself settled with a book and a black soda, and I can relax for what seems, many days, like the first time I’ve had the opportunity all day.

Then I get to sleep.

Bliss.

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