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Archive for the ‘behavior’ Category

mother Mary comes to me

Posted in autism, behavior, tagged , , , , , on October 15, 2010| 2 Comments »

“and in my hour of darkness, she is standing right in front of me…”

~ The Beatles

I feel stronger right now than I have in weeks.  Months.  Maybe even years.  In this ‘hour of darkness’ I am getting things done for myself and for my son, and I am standing upright, and I find I am capable.   Reverting to my Catholic upbringing, I pray to Mary:

Help me, Mary.  You had a difficult son too.  You understand.  Help me please. I feel she has. (I always did like Mary).  Now I know a humility that has given me an unexpected strength,  if that’s not too much of a paradox.

I visited Andy in the hospital today and it was good.  There was no poison or animosity – only sorrow, and shared pain, and real love.  We will always love one another.  There is much yet to get through but I can do this thing.  I can do this.

Jonah did very well yesterday at after school program, so I took him to see the train and we saw one right away, which he (of course) loved.

He behaved at home last evening too, and he was a good little boy this morning.

He even woke up laughing. 

Hey mama!  Hey mama! he called — and echoing his laughter, I went to him and covered him in kisses.

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on the ocean

Posted in autism, behavior, Uncategorized, tagged on October 13, 2010| 7 Comments »

“On the ocean…
I think we’re taking on water…
the storm is on the way,
but I will hold on anyway.”
~ Guster

This is a ridiculously tough post to type, so please forgive any type-os.  I doubt I’ll be editing this one.

I’ve got enough of my mom in me to want to avoid “airing dirty laundry,” as she would put it.  But we’ve reached rock bottom here and I should at least explain why I haven’t been around to post.  Because I just put Jonah to bed and don’t have enough energy to tell the whole tale, I’ll present a Reader’s Digest version of our tumultuous time on the ocean…

This past weekend Jonah had a very rough time behaviorally.  A VERY ROUGH TIME.  On Saturday he threw a toy from the backseat and hit Andy in the head while he was driving.  Andy’s response was way over the top, without a doubt inappropriately so, and I had to take Jonah away from him.  After going back and forth with Andy over the phone – I wanted him to take a break and leave the house for a week or so; at first he refused – Andy decided to check himself in to a hospital.  This was Monday, I guess.  I am so frazzled.  I forget what happened which day.  I don’t know what order things happened in, or how we got here, or how this is became my life.

Jonah continues to be in “random attack mode” and since Monday I have gone into “taking care of business” mode.  I have taken many steps to mitigate the behavior and ensure our financial, emotional and safe survival, including applying for home behavioral support services, getting Jonah on a low dose of clonodine, arranging for a special harness seat on the bus, making a myriad of appointments and phone calls to schools, doctors, agencies, and coordinators to arrange for services so I can still go to work and care for Jonah as well…

…things I took for granted are now huge considerations.  How to go to the grocery store.  How to go to my therapy appointments.  How to sleep.  Eat.  Breathe.  Remain sane.

I’ll go into award-show mode now.  I’ve won nothing but nonetheless am on the podium and have just been called to give credit to those who so deserve it:  I couldn’t have gotten through this weekend without my cousins D and B, who dropped everything to stand by me & get me through this; they’ve helped with Jonah, incurred injury after injury from his attacks, and pulled me up from the waters that threatened to drown me.  My mom has offered her home, also suffered injury at the hands of my out-of-control son, and come to my aid to help even when I am stark raving bitchy.  My dear friend M has stuck by me through so much – rearranged his whole schedule to ensure my safety and ability to cope.  My dad has been very supportive.  My boss has been fantastic.  My friends are caring and there if I need them.  My cousin Brian is ready to jump to help me with whatever I need.  Even the people I supervise at work.  I am grateful.  I am grateful.  I am so incredibly grateful.

This is a trial by fire if there ever was one.  Andy and I had already decided to separate, but I hadn’t said anything just yet; now I may as well tell that too and get it all the major shit over with in one post.

Sorry if all the dirty laundry is stinking to high heaven.  I hope the meds and behavior supports and whatnot serve to bring my sweet boy back.  I hope Andy is getting the care he needs and is okay.  I hope I can keep it together.

If you’re the praying sort, I could use some of that.

We’re staying afloat…

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red barn?

Posted in autism, behavior, Uncategorized, tagged , , , , on October 9, 2010| 3 Comments »

Today has been a very hard day for Jonah behaviorally and I don’t feel like talking much about it.

The fact that it’s the 8th anniversary of my best friend Gina’s suicide doesn’t help. She’s been gone almost as long as I knew her.  Of course I can’t wrap my mind around her being “gone” at all, let alone for that length of time.

Time mystifies me.

In spite of my drama, it is absolutely deliciously crisp & autumn-gorgeous outside. And I have a list of good things that have happened today:

Jonah got to see two trains.

We went to grandma’s house, where Jonah pooped on the potty and got some black soda.

Jonah asked for red barn (a favorite landmark he enjoys passing by on car rides) and he got red barn.

My mom bought me a delicious turkey sandwich.

Jonah and I are listening to Guster’s brand new CD, Easy Wonderful, as much as possible, over and over.

Sometimes when he whines and yells incessantly from the backseat, I drown him out:

I was down for the count
Without any real way out
In this new submarine
Like the whale of Jonah’s dreams

What if I should rise up
From several fathoms deep
A scar on my soul
And a humbling tale of the world
That swallowed me whole…

swallowed me whole…

~Guster

 

 

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93.5% sugar free

Posted in autism, behavior, swimming, Uncategorized, tagged , , on October 7, 2010| 4 Comments »

It’s almost funny that my not-so-clever tag-line is “Autism, sans sugar coating,” because I actually do sift a liberal amount of sugar about.  A lot of the events and anecdotes I write about here are moments of cute, silly, Reader’s Digest-quips, between hours of struggle.  Fear. Overwhelming helplessness.  Jonah’s screaming, followed by our collective silence.  It’s been so long since I’ve experienced any life even close to normal.   But this blog is not a diary, and I didn’t come here to complain.

I don’t want to be a self-pitying person.  I try to focus on what is endearing.  But fuck it.  I can’t bring you into my world and then only show one side of it.  I don’t want this to be a happy little vapid blog that doesn’t say much of anything of any use.  I know other families are struggling like this.  They’ve got to be.

I know I am not alone in feeling like my son and I are societal pariahs, and I know other people must look forward to winter too, so they can hibernate in finished basements and empty malls.  At least I believe these things, if I can’t know them.  It makes me feel better to believe them.

Day after day, entry after entry in the dreaded school-to-home log book.. his sweet teacher trying valiantly to euphemize attacks and aggression with happy faces about the 5 minutes of the day when he was actually good.

He missed the school apple-picking field trip this week because he was so bad on the bus.  They took the rest of the class and one teacher went back to the school with him.  This is why I don’t try many outside “normal kid” activities.  Jonah’s not the nice little developmentally disabled boy on the SAFE (Sports Are For Everyone) softball team.  He can’t wait – softball is, almost by definition, waiting – and he’s not interested anyway.

He’s not the kid who will happily play at the birthday party at Jeeper’s.  He’s the kid in the very rear of the building, running up and down concrete steps leading to the emergency exit door.  He’s not even the kid who swims in an organized class, because he wants to get in the water and back out again at will.

He’s not any kid I ever dealt with
or handled
or loved
or feared
or was amazed by
or cuddled
or played with
or was depressed by
like this.

Some days we are worn down to barely functioning humans, Andy and I, trapped in this world we can’t navigate.  There is no barometer, no compass, no captain.  We don’t speak of it much because it always feels like there really isn’t anything to say.

Today Jonah attacked the bus driver, the after-school program coordinator, and Andy.  I got home before Andy and Jonah, and when they came in Andy was driving Jonah before him into his bedroom where he pinned him down on the bed.  I went to an eyeglass store so they could bend Andy’s mangled glasses back into wearable shape; Jonah had twisted the frames in the midst of his kick-hit-scratch-swat fest.  We’re tired.

Did I mention we are tired?

Pulling into the driveway after having Andy’s glasses fixed, I saw a fat rainbow:

and some floral-blooming sunset clouds:

And in the midst of my heart-pounding hand-shaking anxiety, I stopped to take pictures.  I had to.  I bring the camera everywhere.

I have to let all the beauty fill me

at every opportunity.

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knock knock knock?

Posted in autism, behavior, sensory stuff, Uncategorized on October 3, 2010| 1 Comment »

“Knock knock knock”?  Jonah asks me.

This is not the beginning of a joke, but a request.  He is asking me to knock on his head.  I knock three or four times on spots all over his noggin; he giggles and says “fast!”  So I knock faster, using both hands to create light little rhythms.  Jonah loves to be knocked on the head – what can I say?  Knick knack paddywack.

He also loves other kinds of sensory pressure.   Some folk on the autism spectrum are really sensitive to touch and can’t tolerate certain textures or pressures, but Jonah craves them all.  He wants to cuddle so close that he melts into the shape of you.  He wants tight squeezes and massaging pressure on his shoulders, neck, and back.  He wants to reach out from the backseat of the car and gently place his fingertips on my shoulders, sometimes pulling as if to gather me closer.  Sometimes if he is freaking out in the car, I calm him by pressing my hand on his knee.  (This technique got us from Cape Cod all the way back to Albany when Jonah had such a hard time keeping it together after vacation).

“Huck?  Huck?” he asks every time he’s done something wrong and wants to get back in your good graces.  It’s his unspoken apology, overused and often insincere.  You’re not sorry, you little shit, I think sometimes. You just want  a hug.

Worse is “up up up?” –  meaning he wants me to pick him up and carry him, usually from the car (where he has just flipped out) to the house (which is where he’ll end up, specifically in his room).  But this is where I draw the line.  The kid is eight and a half, for the love of God, and though he’s thin and lanky like his mama, he’s still at least a good 50 pounds and liable to break my back.

So I walk heavily, practically limping, Jonah hanging and clutching onto me; I’ve grown a massive, screaming tumor from my midsection and my mission is to deliver it inside.  It’s like we’re playing that three legged race game at the elementary school Olympics.   So, mushed together in a human blob, we walk as one up the stairs and into the house.

Where he’ll likely ask for a hug – and later, once he’s calmed down, “knock knock knock?”

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triangle man

Posted in autism, behavior, tagged , , , , , , , , on September 29, 2010| 2 Comments »

“Triangle man, Triangle man…

Triangle man hates Particle man;

They have a fight – Triangle wins…

Triangle man!”

~ They Might Be Giants

Jonah loves musical instruments.  While digging though his toy box to clean out broken or outgrown stuff, I came across a triangle and beater.  It was one of those things he didn’t have a whole lot of interest in two or three years ago, but I demonstrated its use and then handed it over to see if he’d like it.  Immediately he jammed out, playing in definite rhythm to a song in his head…I think it may have been “Jingle Bells.”  (Since Jonah doesn’t really understand the concept of seasonal music, he’s just as apt to perform a Christmas song in July as December).

Just the other day he was in the bathroom sing-shouting “Rudolph the Red-nosed Reindeer.”  He butchers both the reindeer names and their order of appearance:  You know Datter and Bitzen and Danter and Comma!  Dishen and Rudoff and Rudoff and Rudoff!

This from a kid who can memorize lyrics of most songs nearly perfectly, if you forgive his lack of diction.

I wish I could’ve taken him with me to see the Dark Star Orchestra, a Grateful Dead re-enactment band my cousin Brian and I went to on Saturday night.  We stayed in the back and danced, and I think Jonah would’ve loved it.  But is it worth the $31 ticket price to take the chance?  I suppose the concert would’ve been loud enough to drown out any of his annoying screeching or yelling, but what if he flipped out completely and we had to leave, or he ran through the crowd and got lost?  These fears keep me from taking him with me to a lot of things.  I’ve tried and regretted it too many times.  And I’m selfish enough to admit that I really enjoyed being at the show with just my cousin.  (I danced like I did when I was 20 at a Dead show… spinning, grinning, whirling, stomping around.  Stupid Deadhead, spinning’s for kids!  Eventually I spun myself right into a wall and had to sit on a step to rest.  And when it was all over, I limped back to the car like a peg-legged pirate.)  I guess I ain’t 20 anymore. 

So Jonah’s in his room now playing a keyboard toy.  He’s been banished there because he tried to attack Andy on the ride home from after-school program.  He was okay at school, and good at after-school, so Andy was going to take him to Burger King (right up there with Grandma’s house on the list of Jonah’s favorite places to go) — but then Jonah lost his shit.  So no Burger King.  Andy swears he’ll crack him and I think if anyone can do it, he can.  I’ve also got a meeting with a child psychiatrist who consults with kids at Wildwood; I guess the doc is going to observe Jonah (with my luck Jonah’ll be an angel that day) and then offer some recommendations.

I sure hope this dude’s got some good ones, ’cause we’re running short on ideas here in Jonah-land, and it isn’t a whole lot of fun.

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