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Archive for the ‘autism’ Category

Jonah has an amazing sense of where he is in the world.

I don’t mean metaphorically, like knowing his place in society or within a clique of children.  I mean he literally almost always knows where he is, geographically.  From the backseat of the car, he could instruct me to get from our home in Albany all the way to Andy’s parents’ house in Valatie, 30 miles or so away, by pointing and calling out that way and this way at intersections until we’re there.  Unfortunately, Jonah doesn’t know his right from his left (but then hell, neither do I, most of the time), so I’ve got to watch which direction he’s pointing.

I’m not even sure he’s got “straight” figured out.  Sometimes I’ll ask him “which way, bunny, straight?” and he’ll agree happily: Straight!

But then I’ll go straight through the intersection and he’ll flip out, yelling  That way!  That way! A glance in the rear view mirror and I see the problem; though he said straight, he’s frantically pointing right.  He wants his favorite park and knows it’s to the right – the one he calls Number One Park, the one where he shouted penis! over and over that infamous day until I dragged him away like some hapless Gong Show loser.

Incidentally, Number One Park was the scene of another embarrassing incident just a few weeks ago.  Number One Park is at a local elementary school.  It’s one of those huge wooden structures with slides & swings & rings & ropes & tunnels all interconnected.  My favorite times are when no people come and we have the play area to ourselves, but on this day the place had its fair share of assorted kids and parents.  I sat on a bench while Jonah ran around and played.   After disappearing from view for a second, he appeared at the topmost tower.

Without warning or provocation, he suddenly cupped both hands around his face and shouted: Daddy’s gonna take you home tonight!

Then, after a second’s pause, really screaming now, he emphasized:  TONIGHT!

The park went silent for a good minute.   Nobody seemed to know how to react; some people chuckled a little.  I’m not sure why Jonah felt it necessary to announce, at top volume, that my husband would arrive that evening to bring me back to our residence, but it made me laugh till I cried.

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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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