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happy birthday grandma

I have been in New York City on business (Wednesday and Thursday) and am back today. 

Wednesday also happened to be my mother’s birthday.  I had given her a card and gift from all of us before I left for my trip, but Andy and Jonah went to visit for her birthday.

Then Jonah had a flip-out and shoved her expensive television over, smashing it to bits on the floor.

Happy Birthday, Grandma!

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Thanks to everyone who left such valuable comments on garnering the information I want about residential facilities. I really appreciate it!

On Saturday I came over to the house in the morning to spend some time with Jonah Russell and give Andy a bit of a break.  At first Andy and I took him places together:  the usual litany of train and mall and grandma’s house, though Jonah no longer really cares whether the train comes or not (and sometimes declares “all done train” as soon as it does come), and Jonah has changed up the route through the mall (oftentimes not even making it all the way to the other end before deciding to turn around and start back, and – most surprisingly – declaring “no coin” at the wonderful brand-spanking new coin-funnel spin-down-the-drain structure; three months ago he would have begged for every coin on my person to throw down to whatever-good-cause)…

…but he never wavers from his desire to see grandma.  Our cat Sugarpuss now lives at grandma’s house because Jonah was attacking her, picking her up by her fur and once trying to grab her collar, nearly choking her. 

Sweet little sugarpuss, who we rescued from a back Albany alley in 1999 and who wants nothing more than to love and be loved, purring and meowing and mushing her face into your face.  My mom likes to read at night and Sugarpuss actually crams herself between my mom and her book, then tries to sleep on her head.  My mom’s other cat, Bootsie, doesn’t seem to mind Sugarpuss so much but Bootsie’s definitely been displaced somewhat.  When Jonah is at her house we watch him extra carefully around the cats, lest he produce his best imitation of a hiss and chase them.

One thing that’s definitely increased by leaps and bounds is the amount of baths Jonah wants every day.  We can bathe him in our house and arrive at grandma’s with his hair barely dry, yet he’ll enter her house, run up the stairs, and immediately declare his desire:  bath!

It is no hyperbole to tell you some days he takes 6-10 baths a day.  And here we have certain rules and games and necessities as well – usually only one of us can be sitting in there with him, and sometimes we are all banned:  no grandma!  no daddy!  no mama! or, if he decides he wants one of us, hey daddy?! 

Then there are the bubbles.  There must be bubbles, lots of them, and water (pretty hot water)  as far up to the top of the tub as we’ll let him have it – so he can go underwater completely, take mouthfuls of soapy water and spit them in perfect whale-spouts into the air, and cavort about, making waves, always requiring a towel or two on the floor.

He loves the colorful Spongebob Squarepants container the bubbles come in, but they’re expensive so my mom secretly refills the bottle with something else every time he empties the whole damn thing into the tub, pouring water from the bottle to the cap and from the cap onto his head and then requesting various cups and containers into which he can continue the pouring extravanganza.

Sometimes he’ll stay in there for an hour, sometimes 5 minutes, and there’s no telling which it’ll be.  All done bath, he’ll declare, and then one of us has to hurry to grab up the towel while he runs into my mom’s room and jumps all over the bed, naked and dripping as we try to catch him.

Jump!  Jump!  ‘Errybody’ jump!  he sings and laughs, bouncing from one spot to the next like a jumping bean, until I catch him up in the towel and dry him as vigorously and quickly as possible before he can escape.  Once dressed he stomps Olympic-quick down the steps to ask grandma for ‘tune-fish samwich’ and black soda, which we usually let him have because he’s getting much better at going pee and poopy on the potty.

He did have an incident/attack where he lightning-fast shot out at his grandma, but Andy and I got to him before he did her any harm and then held him down on the living room floor until he calmed down again and we could go.

When we got back home on Saturday I gave Andy a much-needed break by playing endless silly games with Jonah in the heated basement – catch the beanbag (what color is it?), roll the pretend shopping cart, put the slinky down the stairs, stack the blocks (what color are they?) chase each other around – up and down the stairs – around the craft table – that kind of thing. 

It was fun and I snatched him up and hugged him tight, my sweet little boo.  Yesterday I didn’t go over; I felt stuffy and sickly.  When I called Andy he told me that Jonah had taken his radiator cover off and threw it into the hallway at 4am, which scared the bejeezus out of Andy, but I guess there was no fight or agression afterwards; Jonah just felt like kicking up the nighttime scene a notch, I guess. 

We’ll see how he does this week.  Another psychiatrist appointment on Wednesday for some further med adjustment, maybe, and I’m supposed to be hearing from Springbrook soon, once they get Jonah’s paperwork. 

I sure hope they have bathtubs.

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My car’s thermometer tells me it is -3 degrees outside today, but at least I got the hell out of the driveway and to work.  I have so much to do it is overwhelming, but maybe that’s for the best.  I can focus on something else besides residential schools and my son’s attacks and how to navigate it all. 

This was a good weekend for Jonah-boo.  I came over to the house both Saturday and Sunday; of course we go to grandma’s nearly every day and sometimes (on the weekends) more than once. 

He loves to enjoy a snack on her counter, with his favorite butt-in-the-air position, and though we usually make him sit in a chair, he gets special privileges at his precious grandma’s. 

Saturday I brought him over to the apartment with M where he enjoyed playing with the bead necklaces I make constantly/therapeutically:

….and playing with M’s dog, Jack:

who is a big 90-pound 2-year old galoot of a mutt-pup and evidently wishes to lick humans to death.

At first Jonah was intimidated by Jack, and he still is a little skittish every time he first sees Jack because Jack gets very excited when anyone comes over, but the dog quiets down soon and then Jonah is interested, petting him gently and throwing him treats.

Andy took Jonah sledding on Saturday too, so our boy had lots of fun – he got to go to grandma’s, take 15 or so baths, visit his favorite mall and traverse the circuit throughout it he’s invented, go to the grocery store a few times, and play more with his mama when I visited again yesterday for a few hours.  We played “ring around the rosy,” did slinky on the stairs, and repeatedly filled a yellow bucket with colored straws, flash cards, and moneycoin, then tossed it gleefully into the air and sang “clean up, clean up, everybody everywhere” while we picked it all up, only to transport it to another area of the house and start all over again.

So all in all it was a good weekend for boo.  I am afraid of falling into the negative, both temperature-wise, depression-wise, and Jonah’s behavior-wise.   I’m so scrawny I freeze to death in even the 30-40 degree weather, and I am bone-frozen and bone-tired…fighting apprehension, wearing long jonhs on under my work clothes…pushing back at the worry…that kind of thing.

I’m having some social anxiety, sometimes feeling unable to go places or do things – like the mall, or a restaurant.  It comes and goes.  I missed my Uncle John’s birthday party yesterday because I didn’t want to show up and see all my family and make small talk and all the while feeling surreal, trying not to cry.  Who wants the crazy member of the family to ruin all the fun? And even though I know they wouldn’t treat me any differently (I love my family), I might say or do something stupid, or get all paranoid, or witness the normalcy of everyone around me, the “regular” kids, feeling the resentment rise, wishing I were someone else, somewhere else, like I tend to do sometimes.  I will send him a card with some scratch-offs and a big apology and hope nobody thinks the worse of me for it.

And when I called my mom to tell her about my conversation with that one mom whose son is doing so well at Springbrook, I caught her at a bad, weepy, worrying time.  She seemed almost angry that I was continuing my investigations of these places.  “He’s doing so much better lately,” she claimed desperately, her voice cracking with anguish.  “You don’t need to send him to an institution.”  When I explained that I would rather be super-informed before making a decision that may or may not be imminent, she didn’t seem to hear me. 

I would rather be dead than see him in an institution,” she cried bitterly.  I told her I would stop talking about it – that it would be a last resort – that Andy and I would do everything we could to keep him at home.

We are taking Jonah to see the child psychiatrist again on February 2nd.  Maybe he has some ideas for tweaking his meds. Maybe Wildwood’s new behavior plan will begin to take hold.  Maybe the new stability in the house with Andy will improve his overall ability to adapt to changes and triggers and fears. 

In the meantime, I will continue my investigations – I see no point in remaining uninformed; if not for Jonah, than for other parents who may be facing these decisions.  I just won’t be telling my mother about it.

Ignorance may not be bliss in this case, but hopefully it’ll at least allow her to sleep at night.

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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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no, no, and no

Andy is tired.  Jonah is home until school starts again, and I know it’s not easy to watch him for hours on end with very few breaks.  I’m tired too, so going to work today was almost respite…something I felt a little guilty about, like my office is a sweet tropical escape Andy’s missing out on.

I had a doc appointment right after work today, too, so I was home even later than usual.  When I walked in the door around 7, Jonah ran up to me.

Without preamble or hesitation, in rapid succession, he fired:

“Wan go see train?”

train!

“Wan go see grandma?”

“Wan go number one park?”

I laughed weakly and silently responded:  No, no, and no.

By way of apology, I leaned down to hug him tight; we went downstairs and sang Guster songs in the basement instead.


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