Archive for November 6th, 2010

Two attacks today.  It’s not the severity of them that kills me – it’s the constant false hope that they’re gone now, that he isn’t going to do this anymore, that we can reclaim some kind of normalcy.  We live a land mine life.

Some things in my life are on empty.  There is no more calm in me.  Teeth and jaw clenched, shoulders and neck crossbow-tight — this has become my body’s normal state.  There is no more mental rest either, no more letting my guard down, no more of anything approaching complacency.  There might be more coming; I hope more calm comes and more rest arrives, but it all feels so very far away.

They say God doesn’t give you more than you can handle, but I think they’re wrong.  <– If you click on those words, you’ll see an article I found by someone who agrees with me.  She quotes from the Bible, and I liked this one thing very much:

In 2 Corinthians 12:9, Paul wrote, “He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

If that’s true, I’ve got lots to boast about.  The power of perfect weakness.  I love it.

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So I’m hooked up now with in-home behavioral support that’s an ongoing service provided through Wildwood (it should be starting in early December), and my application through the Center for Disability Services for temporary/as-needed respite is being reviewed on the 30th of November.  I’m getting Jonah back on my health insurance, making an appointment for him to see an endocrinologist and a new pediatrician who’s got experience with autism, working full time, and learning my boy all over again.

Jonah’s not as dopey and out-of-it as I had complained about before, and his aggressions have gone down to almost none (at least at home – he still has one or two a day at school) but he is different.  He falls asleep now at 7pm and wakes at 4 or 5 am.  His appetite is enormous – he wants four or five things for breakfast every day:  banana dipped in syrup, followed by a banana with peanut butter spread on it, followed by a piece of pizza, followed by sugar (what he calls a Kit-Kat).  He’s indecisive about what he wants – even more fickle than before, changing his mind almost in mid-request – though Grandma’s house is still a winner every time, and he still wants to see the train as much as humanly possible.

He’s active in school, too; his latest love is roller-skating, they tell me, which makes me want to try Guptil’s in Latham to see exactly what the kid can do.

And he’s learning things by leaps and bounds.  This week he brought home colored-in paper representations of different coins.  “What’s this?”  I asked him, holding up the copper-colored one with Lincoln’s head on it.  “Penny!”  he answered confidently.  He got nickel right, too.   Well I’ll be damned.  Denominations. So much for moneycoin.  He’ll have surpassed my math abilities in no time.

Things are very changed in our lives too.  Part of it is the season – November:  my least favorite month of the year, when I don’t want to take him to the playground in the cold and wind, when I feel beaten down and dragged along by life.   Part of it is there hasn’t been anyone to share the care-taking duties with, so I’m too tired to write when I get him into bed and I’m reluctant to write about being sad or feeling crappy.  Hopefully soon Andy can start taking him more.  (He’s here watching Jonah now so I can write this).  Hopefully I can keep afloat.  Hopefully I will stop being afraid to be alone.

Looks like these afternoons of reverie are through
What’s left for me to say, what’s left for me to do?
Float along and feel the water on my back…
Try not to sink down to the bottom.

~ Guster

M watched Jonah for me last night so I could go with Mx and P to the Dave Matthews Band concert at the Knick (I don’t care how many times they re-name that place, it will always be the Knick to me).  It was the first time in a long time that I’ve been out anywhere, doing something fun.  I’d never seen DMB before and it was really a very good show, but still I lament missing my beloved Guster in Vermont on October 28th.

My second article for the Capital District Parent Pages hit the stands on Monday, and I have to admit it’s fun to see my writing in print.  I’m proud that people are reading  little stories about Jonah, though I keep most of what’s here in the blog out of my articles.  It’s all just a little too edgy for a column that’s positioned across from articles about Thanksgiving dessert recipes you can make with your children.

Now if Metroland ever gives me a column, I’ll let loose with foul language and tales of psych ward madness galore.  Until then, you’ll have to read that shit here.

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