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I just found NCSA, the National Council on Severe Autism, last week. From their website: Pursuing recognition, policy, and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders. 

That’s Jonah! That’s us! I haven’t been this excited to find an organization since never.

Last week I attended their policy summit, which was full of information and included panelists from many different autism organizations. There are other webinars coming up; they’re all free (and recorded if you can’t attend). I’ve signed up for Treating Challenging or Dangerous Behaviors, Part 1: Medical Support, which features 2 doctors from Kennedy Krieger and one from UCSF, discussing everything I want to know – what meds and interventions are working with people like Jonah. I’m drinking up NCSA’s resources like a thirsty camel.

This is excellent timing, too, because Jonah’s blood Clozaril levels have stayed high even though they lowered one of his doses, so they’ve lowered yet another dose. This is tricky territory; of course we don’t want the frequency or severity of the aggressions to go back up, but we want to keep Boo safe too.

The other day he sat in his room and sobbed tearlessly for 15 minutes. Briana texted to tell me he’d refused her offer of a campus walk, and when she returned to the house, he was in the midst of the crying jag. I asked if maybe he wanted to do a video call, but she didn’t think it was a good idea. When he cries like that, she told me, it’s usually because he’s ramping up to attack staff. I feel special kind of helplessness on these occasions. There’s nothing I can do to help him or make it better. At least I didn’t have to hear him cry, for my son’s sobs are long and loud and anguished. They break my heart.

I did get to see him again, on his 19th birthday, March 7th. I brought McDonalds, of course, and a piece of special cake my friend KP made sure to get to me. Jonah was okay until we went inside the Visitor’s Center and up the stairs, at which point he greeted me with a splayed hand to the face. My glasses went flying, just like in the old days, and he grabbed a chunk of my hair. Of course I had a strong companion with me – I daren’t visit alone – and he disengaged Jonah without much trouble. As aggressions go, it was only a 2 or 3 on the Richter scale, and the rest of the visit was fine. Our cinematic entertainment was the familiar Jungle Book. I think Jonah would have watched the whole thing, were our visit not limited to one hour. It was so good to see him. He even let me hug him at the end of the visit.

Even as I type this Jonah is just leaving the ER. Briana came to the house on her day off because staff was concerned about a boil on his neck. She and Caroline, another staff member, took him over to Northern Dutchess Hospital. I knew he had a bump, but I guess it was getting bigger and they were worried. The ER doc was all set to remove it with local anesthesia, but Briana explained Jonah would need to be fully sedated for that. They decided the risk of putting him under wasn’t worth the benefit, and they’re going to continue to tackle it with more meds. I guess Boo was wonderful in the hospital, so they took him through the McDonald’s drive-thru afterward. He probably really dug the car ride, too. I hope he enjoys his yummy food and has a good night.

I’ve strayed into the woods again to hike a few more times since I last wrote, and also went through a bout of angry depression that birthed the last post’s poem and started me to writing again. Since 2002, I’ve had a portfolio on writing.com (where I am winklett, of course) but I haven’t written much in years. Now the words are flowing again, mostly poems and a short story or two. The woods and the writing are positive forces in my life, and I am grateful for them both.

My phone *just* rang – it was Briana, sounding distressed. She said she had bad news. I guess somewhere between McDonald’s and the Anderson campus, Jonah attacked Caroline. It was bad, and it took 20 minutes for the two of them to get Jonah under control. Somehow they managed to drive back to the house, where 6 staff members are ready in case he attacks again.

See, this was almost a positive post. Almost happy. But no. Here we are again. The ever-loving shit show.

I didn’t find NCSA a moment too soon.

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I didn’t go to see Jonah this weekend.  Friday I took the day off work and caught a ride with some other folk to a friend’s son’s wedding in Brooklyn.  It was a beautiful day, & the wedding and reception went off without a hitch.

Strange timing, though.  Andy and I signed our legal separation papers on Monday.

Four days later I found myself sitting on a pew, in a big cavernous church, watching two people get married until death do them part.  I tried not to let it  make me all sad, or envious, or bitter, or any other dumbass emotion I’d have the tendency to entertain.

I forgot my camera, too, but I’ll share a cell phone picture of the reception table – lovely!

Anyway.

I miss Boo.  It feels too long for me to go two weeks without seeing him at all.  And when I call at night to see how he’s doing, he’s almost always already asleep.  It’s not like he’ll talk on the phone, and I don’t want the sound of my voice to upset him or start him pining for “home.”  Then again, I don’t want him to miss mommy and wonder where she is.  Of all the things I’ve had to kind of guess at with autism, this is one of the hardest.

Luckily Andy lives so close he can take Jonah to his apartment at least once a week, after the playground, then give him one or two much-enjoyed baths and feed him the “yummy-light-green-grapes” my mother brings along when she drives down every Saturday.

I think Andy actually visited Jonah three times this weekend, if you count tomorrow, because I think both he and Boo have the day off for Columbus Day.

Thank God and little baby Jason he’s down there, and has a bathtub and a big daddy heart as well to hold him close-by his only son.  I wrote Andy a Father’s Day poem a few months after Jonah’s autism diagnosis.  It applies to this day, for Jonah has been blessed with a fantastic dad:

Just Like Any Other Boy

You take your shirt off, hold me, newborn, to your chest,
your heartbeat drumming fa-ther, fa-ther, fa-ther –
and father arms, and unbelieving eyes, and warmth
so rocking, softly rocking, in your father arms I sleep.

You wear me in a baby sling, faced out so I can see.
You bend close to kiss my thistledown fine hair
and you are smiling, and jouncing me in jest, and singing
unashamedly off-key: the bear went over the mountain…

You see me spinning; hear me humming, seek a diagnosis,
your heartbeat drumming fa-ther, fa-ther, fa-ther –
now you hold me extra-special close, you whisper precious son
and place me before everything there was or ever will be.

You chase me on the playground past the toddlers who can talk
You bend close to kiss my thistledown fine hair
And I’m caught and tickled, giggling, just like any other boy
And you are smiling, and jouncing me in jest, and singing

You take your shirt off, hold me, two now, to your chest,
so rocking, softly rocking, in your father arms I sleep.
Your heartbeat drumming fa-ther, fa-ther, fa-ther –
You place me before everything there was or ever will be.

– – –

I, on the other hand, am maybe not so great a mom.  I don’t know.  I’m definitely not one of those born-to-be-a-mother moms who wanted three or four kids, special needs or not.  And mid-life has not increased my self-confidence in any arena.

I question my motives at every turn.  I require two different types of medication just to operate like a functionally employed human being, am falling far short of goal at what I’m paid to do despite my most earnest efforts, and wish only, really, to play the role of professional philanthropist.  I like people.  I trust them.  I’m a bleeding heart & want to help every cause that comes along.  Then when I’m inevitably betrayed in some small way I lose faith in humanity entirely…including faith in myself – as a mother, a partner, a daughter, an employee, a friend.

(I have a wonderful therapist and it’s obviously been too long since I’ve seen him).

It doesn’t help that it’s October ninth, my least favorite day of the year.  Ten/nine/eleven.  Nine years ago on this day my best friend Gina killed herself with a gunshot to the head.  I wrote ten billion poems afterward, like this one.  I guess I needed to, or I was going to go crazy.  Hell, I guess I went crazy anyway.

Every October 9th I buy a balloon, usually purple or blue, from the Party Warehouse, and I drive to Memory’s Garden, a park-like cemetery where Gina and I used to visit often to sit on a bench by a pond and talk.  Every year I go to the pond near the bench, I tell her I love her, and I let the balloon go.  Always she takes it quickly, removing it from my sight faster than seems possible.  This year the Party Warehouse gave me my dark blue balloon for free.  My God it was a beautiful day – 80 degrees, probably.

As usual, I released the balloon, managed to snap a picture of it with my phone (I forgot the camera again), put the camera down, and visually followed the balloon just above the tree tops until  POOF I couldn’t see it anymore, anywhere.

I’m sure the blue balloon on blue sky didn’t help me follow it up in the air, but I feel just as sure she got it.

Nine years.  Now she’s been gone just about as long as I knew her.  I hope all the memories don’t fade.

I can honestly say I’ve never been as close to another human being (except perhaps my son, but that’s a different kind of close) and I don’t anticipate I ever will be.  I’m blessed to have had that friendship at all.  Jonah was just 5 months old when she died, but I’m glad she got to see and hold him.

I ask her all the time to look after him.  Be his angel.  Keep him safe.  I wonder if this is delusion on my part, or if she hears me.  I’m pretty convinced she hears me.  I hope she comes for me when I die, and we can both look after Boo.

This concludes my stream-of-consciousness blog post for today.  I love bedtime, and am looking forward to waking up to a different day than this one.

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