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Posts Tagged ‘Brave New World’

“The “D” is silent.”  ~ Django, in the 2012 movie Django Unchained.

So I just saw Django Unchained, finally, and enjoyed it so much I watched it twice.  I can’t believe it lost to Argo for the Oscar, which I also saw but thought was a good (but lesser) movie.  I’m not a huge Tarantino fan and am glad I went into it without the knowledge that he had written and directed it, because I would have been somewhat prejudiced against it from the start, though it should have been obvious he directed it: the violence, the structure, and all that ignoring of plot holes and logic.  It didn’t matter.  I didn’t even mind the violence…it served a purpose, and as far as folks criticizing the word “nigger” being overused, it was set, after all, in the antebellum era before the Civil War.  It was true to its time, for the most part.  I loved it.  Perfectly cast, too.

Djonah has also acted in an unchained manner of late – he even “eloped” (which is the autism world’s word for running away) on Saturday when my mom and I visited and we were eating lunch at Andy’s apartment.  With no warning he ran at the screen door, flung it open, and ran full speed down the short-ish street right toward the 55-mile-per hour road it meets.  Andy acted lightning fast, and thank God he’s been working out for months now because he caught him easily.  I would hope that with my new exercise regimen and super-power momma instinct, I also could have caught him, but luckily I didn’t have to try.  Left unchecked, Djonah would certainly fly, headlong into the street, I’m sure, powered by an inner need to escape something inside him which would ignore all danger of speeding cars on the road.  This eloping is new; he has only done it once before, and on the school grounds, where he is trapped on all sides by fencing.

There are other new things amiss with Djonah.  He is having multiple aggressions every day (which has always been cyclic) but he has had zero aggressions for something like 2-3 weeks prior to this – and also, now he is exhibiting signs of OCD (obsessive-compulsive disorder) we’ve never seen before, touching doorknobs 100 times and spinning ever-increasingly in circles, round and round.  This is all different. His nurse and his behavioral specialist are both really concerned.  There is also some blood in his left ear; it isn’t pouring out of him but when we gently clean it there is blood on the swab.  I have to call today and see if I can drive down to meet with Djonah’s doc and talk to her about what to do about all these things.  After talking to other moms in similar situations, I think I want to take him off all his anxiety/aggression meds and then put him back on them, one at a time, to see what is working and what isn’t.  Right now he is on such a cocktail of meds that adding and subtracting meds at this point is just a guessing game.

On top of all this his eye operation is a week from tomorrow.  I can’t see that helping any of these behaviors.  Things will almost certainly get worse before they get better.

Also on Saturday, he attacked Andy twice in the apartment.  Andy managed to get him onto blue bed and hold him, and I came in to lay across his legs so he wouldn’t back-kick Andy in the kidneys.  Djonah wept and wept…in frustration, anger, I don’t know what, drool and snot and tears all mixing together in a pool of desperation on the bedspread.  It took a long time to calm him down.  I tried singing softly, shifting my body so my face was near his, and he’d jut his neck out toward me as far as he could and open his mouth, gnashing to bite me.  I recoiled as if facing a cobra.  I kept kissing him, on his legs and feet and back, wherever I could reach safely, telling him softly, over and over, “I love you, Boo.  God loves you.”

Eventually he was able to calm down, breathe normally, and relax his lithe body.   He ate his lunch and took his bath and wanted his car ride.

settled down somewhat

settled down somewhat

People sometimes ask me how he is doing and I never want to talk about it.  I direct them to my blog sometimes, because I can’t live it and talk about it all the time too.  A defense mechanism in my mind kicks in so I can live a life without a constancy of terror and anguish, helplessness and envy.  And yet I have to balance this with the necessity of advocating for our son and ensuring he is getting the care and medication that will help him.

A friend called me last night to vent because her teenage son is being very rebellious.  All I could do was listen.  I know nothing of teenagers but for memories of my own teenage years.  I wish I could have helped her more.  I sent her a list of books he may enjoy, and she may enjoy them too, for they are both readers and in my literature-loving mind, a good book is damn near a cure for anything that ails you.  If nothing else it provides escape.  Here is what I recommended (most of which I have read but some I have not and recommended based on reviews):

Fiction:

Looking for Alaska by John Green

Divergent by Veronica Roth (inspired by The Giver, I’d say)

Matched by Allie Condie

Every Day by David Levithan

I am the Messenger by Markus Zusak

Boy21 by Matthew Quick

Don’t Care High by Gordon Korman

The Chocolate War (and its sequel) by Robert Cormier (all his books are great)

The Curious Incident of the Dog in the Night-time by Mark Haddon

Brave New World by Aldous Huxley

Non-fiction:

Me Talk Pretty One Day by David Sedaris (really funny)

Life Without Limits by Nick Vujicic

One Man’s Wilderness: An Alaskan Odyssey by Dick Proenneke and Sam Keith

Black Like Me by John Howard Griffin

The Wave by Todd Strasser

A Heartbreaking Work of Staggering Genius by Dave Eggers

Books always help me.  Writing always helps me.  Both are ways to immerse myself so completely that I’m in a zone from which I cannot be awoken easily.  They are meditations. 

I pray and hope and will Djonah to get better, for all of this to subside, for the wheel to turn so he is not squashed at the bottom but rather riding on top – happy in the warm weather – and soon, swimming again.

But there are good things on the horizon as well.  My mind is feeling calmer, and happier –and the changes I’ve made in diet, behavior, exercise, and what I put into my body in general have given me more energy and a better perspective on everything I see and all I encounter.

In the midst of the Djonah turmoil, somehow, I am feeling very, very blessed and grateful.

Auf Wiedersehen…

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About 3 or 4 weeks ago I decided to order some Fish Oil chewables for Jonah (100mg a day).  I’d read some articles like this one saying most people don’t eat enough omega-3 fatty oils anyway, and there may be some basis to the theory that the Fish Oil supplements may alleviate symptoms of autism: (from http://autism.healingthresholds.com/)

Some scientists have proposed that autism, dyslexia, attention-deficit/hyperactivity disorder (ADHD) and dyspraxia are a related group of neurodevelopmental disorders that are caused by problems in the metabolism of EFAs (3, 12, 13). The idea is that, for unknown reasons, the brains and bodies of individuals with autism and related disorders have problems converting the EFAs from foods into the forms that are necessary for many biochemical reactions (7). In addition, omega-3 fatty acids seem to be lower in individuals with autism than in others (9, 14).

Both of the omega-3 fatty acids DHA and EPA have been found to affect many aspects brain function (1, 3). Specifically, changing the amount of DHA and EPA in the diet alters the amounts of certain critical genes in the brain, at least in rats (15). In addition, one study found that giving animals a diet with a ratio of omega-6 to omega-3 EFAs of about 1:4 improved experimental measures of cognition in the animals (1). Finally, mood and behavior problems in humans have been linked to a lack of omega-3 EFAs in the diet.

So I figured 100mg a day is innocuous enough (esp. since the kids in the studies cited were given 1-3 grams a day) and may even help his growing brain a little, and so he’s been chewing one daily along with the Risperdal ever since.

Then, on Monday and Tuesday, miracle of miracles, Jonah had zero aggressions at school.  This hasn’t happened in months – maybe a year.  I’ve lost count.  Of course I hear the words of doc Reider echoing in my head:

Correlation doesn’t necessarily imply causation,” and I know intellectually that 100mg of Fish Oil chewables for 3 weeks has not caused this two-day no-aggression anomaly, but the mother in me couldn’t help but hope, just a little, that I’d hit on something.

Then, on Wednesday, I went to Jonah’s CSE meeting at Wildwood.  I always hear stories from autism moms online whose CSE meeting experiences play out like horror stories, where parents feel ganged up on and must advocate, fight, hell, even hire an attorney to be present – to ensure their child gets the appropriate supports and services.

Maybe our experience was not like this because Jonah is undoubtedly autistic – it isn’t as if he is on any kind of borderline between autism and neurotypical (NT) – and now he is so obviously in need of residential educational placement.  Maybe we’re lucky to have such an enlightened team of teachers and special education school district administrators.  For whatever the reason, I don’t dread the meetings and have never come out of one feeling like Jonah wasn’t given every possible support, service, and consideration.

One thing I learned is we need to keep Jonah on the waiting lists of all the schools, so I called both Anderson and Tradewinds and asked them to put him back on their lists.  I guess I was wrong about the fact that you can’t keep your child on all the lists.

The thing is, November is a long way off, with 3 weeks of time at the end of August and beginning of September between the summer program and school starting up again.  Tradewinds or Anderson could have a spot before that 3-week hell descends upon Andy and me (especially Andy), and since we liked all 3 schools, we decided to take the first spot that has an opening.

I think.

Once again, my time line is gone.  Shit, I didn’t like having it, anyway.

At any rate, the folks from The Anderson School are thankfully willing to come and observe/evaluate Jonah in his school environment, and it’s going to happen on June 14th which is, among other things,

  • Boy George‘s birthday
  • my Aunt P’s birthday (I call her Tree-Shee)
  • Flag Day
  • and the day I found out I was pregnant with Jonah

Not that any of that necessarily means anything, but I still like that it’s happening on June 14th.  And so far as my Fish Oil theory is concerned, Jonah did only have one aggression both yesterday and today, but they were each “very high intensity” according to the dreaded log book, meaning they are aggressions requiring two or three staff members to remove him from the classroom and into the “safe room.”

The residential schools don’t have safe rooms.  They have the staff and capability to handle whatever is happening right then and there, ostensibly.  I don’t know.  One even toilet trains the kids immediately.  It’s all done with ABA, something I was never really on board with, but now of course I question my original stance.  All the residential schools we’ve toured use it.  It works.  All the kids looked happy, the staff dedicated and engaged.  I’m not looking for Jonah to be Einstein or Temple Grandin;  I just want him to be happy, as independent as possible, and able to learn and grow.

My problem with ABA was formulated in 2006, when Jonah was 4.   I think it was born from the hope/assumption that Jonah was going to end up higher functioning by now than he turned out to be (and certainly not aggressive at all).   I thought, if taught through ABA, he’d just be a robot…trained to act, speak, and look normal.  It seemed horrifying to me.  Something Orwellian.  But I had the confidence of a woman whose child, though autistic, was at the very least not a danger to himself or others.  He’d had every modern advantage a child with autism can get.

After all, doc Reider had noticed something was up with Jonah when he was just 6 or 8 weeks old:  our boy was staring at lights, not faces.   (In our infinite ignorance, Andy and I had already nicknamed him “Moth Boy.”)

So we stayed on top of the situation, got him early intervention before he was 19 months old, and enrolled in Wildwood School full-time just before his third birthday.  We thought we were doing the right thing.  If we had got on board with full-time ABA all along, would he be better than he is today?  I don’t know.  Who knows anything when it comes to autism?

If you’ve met one kid with autism, you’ve met one kid with autism.

It’s a puzzle inside a mystery inside an enigma inside a matrix of love, pain, frustration, guilt, helplessness and anger; amazement and joy.  You take wrong turns and make mistakes.  You come to question everything.

Autism is the agnosticism of impairments;

you have to be okay with “I don’t know.”

And so we sally forth.  Andy’s sick with something…the flu?  Walking pneumonia?  He managed to work today.  And I’m tired.  Lots of meetings today, a ton to do at work.

Time for Match Game.

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