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Archive for the ‘behavior’ Category

so far so good

Posted in autism, behavior, tagged , on January 13, 2013| 2 Comments »

So far so good today.  I am home and took a pic to show you my progess. Much better today, no?

O

Perhaps tomorrow I will actually look presentable for work.

M is better too, and so is Jonah, so far.  Andy picked him up this morning for a visit.  I hope Jonah has fun and is non-aggressive.  I hope they can go for a walk somewhere in the warmish air.  I hope they are happy together and there are no problems gt all.  We’ll see.  I have to learn not to expect too much. 

Radical acceptance is really quite radical.

I’ll keep you posted.

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a questionable improvement on the silence

Posted in Anderson School, autism, behavior, doctor, grandma, hospital, placement, The Anderson School for Autism, Uncategorized, tagged , on January 11, 2013| 2 Comments »

“Before you speak, ask yourself – Is it necessary?  Is it true?  Is it kind?  Will it hurt anyone?  Will it improve on the silence?”
~ Sri Sathya Sai Baba

How hurtful we can be without meaning to be.  You’d think I’d be used to being hurt, both physically and emotionally, but I’m just not.  And ’tis a horrifying thought to know I also have spoken quickly, without thinking, without asking myself these questions.  We all do it, I imagine.  This quote is so wise, whoever Sri Sathya Sai Baba is.  I learn lots by researching the person who uttered a quote I love. 

I saw Jonah on Wednesday at Albany Medical Center for his pediatric rheumatologist appointment.  E and J are back as the team who drives Jonah to and fro, but they do so much more than that, as I’ve mentioned.  I love these people and look forward to seeing them almost as much as I look forward to seeing Boo.  He did well at the appointment, mostly, but part of that was due to the caring doc’s speed and efficiency.  No waiting.  None.  We go straight to a room and as soon as she sees him, Dr. B is on her game and handling everything.  It’s refreshing.  I don’t know how she does it, but I’m more grateful for her than she will ever know.

I should have taken pictures but I keep forgetting my camera, or forgetting to charge my camera, so I’ll end the post with some more random pictures.  I like putting pictures in my blog post.  Tomorrow I’ll remember the camera when I go visit Boo, I promise.  I wish I had it at his doc appointment.  He was parroting in classic echolalia form.  “Jonah, sit on the table.”  Over and over.  He’d had enough at the exact moment she finished gently pulling and prodding his joints.

There are so many things I wonder about my boy.  I know the other kids like to cuddle with the caregivers on the couches and watch TV or play Wii, but Jonah doesn’t like it.  I know that much.  He wants to stay in his room a lot.  They coax him out when they can, it seems.   I hate thinking about him alone in his room.  If that’s what makes him happy, should I be more okay with it? 

I wish I knew more about what he likes to play with, and who he wants to be with, and things he says/does/sings.  They don’t tell you a whole lot beyond basic information but I want anecdotal stories.  I want to hear about it when he does good things, or funny things…not just whether or not he had “behaviors” that day, or how many, or what he had for dinner and whether or not he threw his plate.  I want to know more about my son. 

I know he is sick right now and I want to hold him close and let him lie on me and suck his thumb while we watch Barney or the Wiggles.  Of course I just described a fantasy.  Even if he were here in my home that scenario is highly unlikely, unless he were really, really sick.  He’d hit at me, pull my hair, scratch my face.  Is he angry at the world?  Is he angry at us all because we just don’t get it, whatever it is?

Some weeks it’s easier to have gratitude than others.  Sometimes I don’t sit down to add a blog post until I’m motivated by a hurt, worry, depression, shame, anger, or some other emotion that drives me to write.   I guess it means every blog post is skewed by its catalyst emotion.  I can’t do much about that, but today’s emotion, even though it’s Friday, is soul-tired.

I’m praying for a lot of people.  A lot.  They all have serious needs, problems, grief.  I don’t know what good the prayers do but I like to send them up anyway.  I’m a little unconventional with that, but I do pray from my heart and my heart always answers back you are not alone in your hurt.  You are not alone.  And that’s the gift you get back when you pray for others; it’s all mirrored back at you, offering perspective and empathy and, if you dig deep enough, peace.

Blah blah blah.  Some pictures:

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.

his mama's bony body and his daddy's tan

Mama’s lean body, daddy’s tan skin

old days, exploring in the forest near home

old days, exploring in the forest near home

the waterboy

Waterboy

daddy holds Jonah's hand and grandma walks beside them - away from his residence and across the campus to the car.

daddy holds Jonah’s hand and grandma walks beside them – away from his residence and across the campus to the car.

Mama will see you tomorrow, Boo.  Sleep tight.

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everything i never say

Posted in autism, behavior, Uncategorized, tagged , on December 27, 2012| 3 Comments »

It’s interesting when some people worry about/disapprove of/mock my disclosing so much of my life here. 

In fact it’s almost funny.  The truth is I only” type & tell” about thirty-fifty percent of what is relevant in any given post, and that’s not a time crunch problem – it’s a matter of what to say and how to say it.   Or if I even have it in me to do so. 

And so tonight I’ll post two quotes and a bunch of pictures and leave it at that, before I start saying a whole bunch of crazy shit.  I promised not to sugar-coat, but I never promised to reveal all.

I cry out for order and find it only in art.
~ Helen Hayes

Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.
~ Helen Keller

God knows how Helen Keller had that superpower.  I sure don’t, though I love the quote.

OLYMPUS DIGITAL CAMERA

O

O

OLYMPUS DIGITAL CAMERA

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not a merry christmas post

Posted in Anderson School, autism, behavior, The Anderson School for Autism, Uncategorized, tagged , , , , , , , on December 25, 2012| 3 Comments »

“oh ho, alas alas” ~ john berryman

my first ever no-capitalization post, i think.  i am playing e.e. cummings for a few paragraphs and oscar is dead.  i write only because i need to release a few things tied up inside me…

andy picked jonah up at anserson this morning and the other children in his house had been picked up the night before (we have yet to even attempt an overnight visit), and the ride up was okay.   quickly things went south, though, once they got to albany, and jonah spent the majority of his time weeping uncontrollably, despite presents from santa and bath and turkey sandwich.  he wanted a car ride to the train (which never came) and at some point during the ride, inexplicably, his face froze and melted into sadness, anguish, pain.  he wept and wept, then threw his coat, shoes, and socks at andy – most of which i was able to deflect.

O

Eventually there was nothing to throw.  So Jonah kicked the back of the seat, hit hard at his window.

Andy pulled over so he could hug Boo, but Boo pleaded mama? so I got out of the car and I opened Jonah’s door and leaned in and hugged him tight.  Then tighter, giving him sensory pressure, loving him loving him loving him, until finally he un-tensed, collapsed into me, and wept harder – crying and sobbing.  We cried together, the back door open on the side of the road.  Then we’d calm him down and we’d get 500 more feet down the road and it would happen again.  No go back to Anderson?  Hot dog?  Bath?  Pa comin’? — confusedly, desperately.

Andy drove, and I cried, and Jonah alternately calmed down (and even giggled once) before again becoming angry and then falling backward into something like despair.

Inside my mother’s house, after the car ride, he punched me hard in the face and and kicked me in the ribs.  He head-butted Andy, trying to bite, enraged and frustrated.  We had to just lie with him on the carpet for a good long while

and whatever it is I’d pay a million dollars to fix it.  He breaks my mother into a thousand pieces, every time.

There is too much to say and who the hell wants to read about this anyway on Christmas Day?

I will post something better, later. Funnier.  I’ll be David Sedaris.  Just not on this particular December 25th.  Lo siento.  And I cannot forget Connecticut; I pick at its horrific entirely like a scab, imagining the families, those familes and their unthinkable Christmas pain.

We sometimes mourn for what we do not or cannot have any longer, or at all — for things and concepts; dreams, wishes, and people – we mourn for what is irrevocably gone.  But also we mourn for what will go on and on and on and on, painfully and unceasingly beyond our capacity to fix.

O

I’m so sorry, Boo.  Mama loves you.

God please help him.

Help all in despair this day.

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97X. Bam!

Posted in behavior, echolalia, grandma, language, Uncategorized, tagged , , on November 23, 2012| 2 Comments »

Raymond:  97X. Bam!  The future of rock ‘n’ roll.   
97X. Bam!  The future of rock ‘n’ roll.  
97X, Bam!  The future of rock ‘n’ roll.

~ Raymond Babbitt in Rainman

Oh, my sweet, precious little boy.  What a wonder you are!

This is the third Thanksgiving I’ve described in this blog.  Hard to believe..  The first was awful – so awful, in fact, that just days later I would check myself into a mental health facility, the second was fun (and was paired with two Guster shows, so how could one go wrong?), and yesterday, Thanksgiving 2012, which was easy-wonderful.

Andy was nice enough to drive Jonah up to Grandma’s house, and I met them there.  My boo came crashing through the front door, shrieking with happiness.  We ate turkey sandwiches; Jonah ate one and a hot dog as well, and chips, and bacon, and “white ice cream.”  He asked for train and we drove him there even though we knew Thanksgiving trains are few and far between.  All the way there my mom sat in the backseat with Jonah, but he kept asking mama in the backseat?  And my mother told him, “yes, sweetheart, as soon as we stop for the train.”  It made me feel good; usually he wants grandma in the backseat.

He also wanted music, and daddy turned up this station that he and Jonah enjoy: 92.3 FLY.  After one of the songs they announced the call station with snazzy-jingle-music and the deep voice and all.  Jonah immediately parroted it, really well, too, if I don’t say so myself.  92.3 – WFLY!  92.3 – WFLY!  92.3 – WFLY!  None of us could help laughing, which only encouraged him.  Giggling, he kept at it for a while, just like Rainman.

So there was no train, but I got to sit in the backseat with my Boo – and instead of telling me move (which means get as far away from me as possible and do not even look at me), he asked for hugs.  Over and over again he wanted hugs.  Bear hugs, he even said.  And so I reveled in this, moved close to him, wrapped my arms around him, and hugged tight, raining kisses on his Beatle-length hair.  More bear hug?  he pleaded, looking up at me sweetly.  Yes, Boo, I replied, hugging him closer, tighter, until it felt like we were one.  Oh thank you, I said silently.  Thank you.

And this week I get to see him again – tomorrow, which I hope will be as beautiful as today – and Jonah as lovey.

daddy-hugs

Before Andy and Jonah left, they came inside to get their share of a Thanksgiving dinner my mom had made just for the few of us.  So she had a bag with all their food in it, and Jonah and Andy were saying goodbye, when Jonah opened the freezer, snagged the rest of the bacon, put it into the bag of food, then looked up at us all as if to say “k, let’s go.”  Of course grandma let him take the bacon.

Mom and I had coffee afterwards and laughed at Boo’s adorable little ways.  We both had tears behind our laughter, but they were mostly good, happy, thankful tears.

We’ve plenty to give thanks for, that’s for sure.

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all the livelong day

Posted in autism, behavior, singing, Uncategorized, tagged , , , , , , on November 11, 2012| Leave a Comment »

Usually I know how to calm him at first, to get him used to being with me.   Singing softly.  Today I try Guster and The Beatles but he gives me a no to both of those.  I’ve Been Working on the Railroad it is.  We take turns with the lyrics, me singing a line or two, then pointing to him, he picking up tune & rhythm without breaking tempo.

It’s a complicated song as children’s sings go, but he prefers complicated songs with distinct bridges into all-new musical directions, and back again.  Keep it Together by Guster, for example.  I should turn him on to Bohemian Rhapsody or A Day in the Life.

He asks me for hug and so I slide over to him, and he wants kisses on his head, and I wrap my arms around him gladly, taking advantage of this somewhat rare physical closeness I get with my son.  More kisses? he pleads, giggling.  I kiss him all over the top of his sweet little head and then lean back to face him for a kiss on the lips.

SLAP his hand flashes out and catches my upper cheek and eye.  SMACK comes the other hand, fingers now curled to grab and pull at me, though my glasses are off and I’ve tucked my hair under a hood, so contact is minimal.

I caught his wrists after that, and we got him to the apartment okay.

I forgot my camera; this picture is from another week.

When I got home, I did laundry and dishes and raked my whole front lawn, stripping off layers of sweaters and zip-up fleeces until I was wearing just a t-shirt.  I moved in hard sweeping lifts, leaves clinging to the rake, my clothes, my gloves.  The sun and the cool and the wind-less day made for ideal raking conditions.  I felt strong: alive and focused.  I shoved the leaves down inside the bags with one leg, my foot stomping hard, compacting – my nose filled with the almost-decayed smell of fallen leaves.

I’m just a hair shy of the kind of OCD that would have me picking up stray leaves one by one from the lawn.

It felt so good to work fast and hard, to know what to do to complete a task, to literally bag it all up, and to have a different result than when I started.  Anything I can do that brings with it a logical beginning, middle, and end is good.  These blog entries are vital.  Making a difference somewhere, somehow, any way I can.  Even if it’s just clearing a scattered gathering of autumn leaves.  The leaves aren’t going to pretend to go willingly into the bag and then suddenly stage a coup and escape, attacking me with their sharp pointy stems and edges.

Work is important. Tasks are vital.

Otherwise I would go mad.  Mad madder maddest. 

“Keep it together;
Can we keep it together?
We’re singing a new song now…
and everything starts today.”

~ Guster

My friend D send me a coloring book in the mail, and I’m about to go have brunch with two other wonderful friends, after which I will take a walk in the sunshine to the park. Maybe make some nature art with what’s left of the colorful leaves.  Or break out the crayons and play in my new coloring book.  Play UNO with M’s kids.  Play with my dog, pet my cat, send out some cards, maybe a package.  Perhaps I’ll even call someone I haven’t talked to in a while.

Just to pass the time away.

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dear boo

Posted in autism, behavior, doctor, hospital, iritis, language, placement, The Anderson School for Autism, uveitis, tagged , on November 8, 2012| 3 Comments »

Dear Boo,

Mama is so sorry, sweet angel, but it looks like you are going to need another eye surgery, and soon.  See, the one they would normally do requires the patient to avoid touching the eye for two weeks, and we know you can’t do that, and we can’t explain it to you, so we have to try something else, and these laser eye surgeries are the something else.

This might not even be the last surgery.  The surgeries aren’t helping so far, and what we’re trying to do is make sure you can continue to see.

People with autism are usually visual learners, and you seem to be one as well.  Thinking in Pictures by Temple Grandin explains this somewhat, and if you could read it I would give it to you and see if you agree.  I don’t really even know if you can read.  They talk about the sight words you know, but even illiterate people know what the STOP sign says.  I don’t know if it matters that you can read, even.  Sometimes I wish you understood more and sometimes I am grateful for your ignorance and innocence.

Have the eye appointments and surgeries become part of your normal?  I guess they must be, by now.  You tip your head back for the eye drops like an expert and read the eye chart like a brave little man.  You are as patient and tolerant of the neurotypical people around you as you can be.  I have no idea how difficult it is, to be surrounded by people who do not understand you.

I’m so sorry, sweetheart.  Mama and daddy are doing their best to make sure you are not in pain, that you have eyes that are healthy, a strong little body, and a calm, peaceful, happy mind.  I’m sorry you don’t have many of those things and I’m sorry there isn’t anything I can do but trust and pray and hope.  I can research, and listen to my instincts.  Hold you close for as long as you’ll let me.  Breathe you in.

You amaze me, Jonah Russell.  Daddy and I will do the best we can for you, for as long as we live.

Mama promises.

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the forgetting

Posted in autism, behavior, grandma on October 16, 2012| 4 Comments »

Our visit with Jonah on Saturday was fine, for the most part.

Jonah, trying to blow up both red balloon and orange balloon

getting ready for bath

I took a little video too and caught a brief moment of a ninja-like, out-of-nowhere attempted aggression at Andy.  It happened in the car.  Jonah was sitting behind me and Andy was driving. In this video you can get a tiny taste of how lightning fast Jonah can move.

This time, thank God, he quickly settled back into Dr. Jonah from Mr. Hyde – my mom distracted him.  And Andy is responsible for the music in the background.  My mom was afraid Jonah would choke on a balloon.  Jonah demanded cranberry soda.  I just filmed.

Sometimes things start to feel surreal.

The thing that might be strangest of all is the forgetting.  The forgetting what it was like to parent a child.  I’m beginning to only fuzzily remember what it was like to get him dressed and ready, to put him on the bus, to tuck him in at night.  To change him and play with him.  Then, further back:  watching him play so joyfully in the ocean.  And still further back:  nursing him, our eyes meeting, loving mama and her baby boy.

There is a lot of freedom now.  There is deliverance.  It feels really good.  But I am also in a purgatory of sorts.  I am Jonah’s mother and will always be his mother.  But I am not his caregiver and I can’t protect him, and I think I will always hate that part.  People usually have other children at home.  Jonah’s my only boo.  Well, I certainly was never going to be the great earth mother, knitting blankets and baking pies – spouting wisdom, president of the PT fucking A.

You gotta roll with the punches.  And we really are all in the same leaky boat.

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what she said

Posted in Anderson School, autism, behavior, Uncategorized on October 4, 2012| 6 Comments »

I should call Jonah’s behavioral therapist and go over some plan for what to do about all his aggression lately…

I thought it just yesterday at work when glancing at a picture of my smiling two-year-old boo made me remember what it was like when I had a child who had only autism, hold the violence.

But she called me first.  When my cell phone rang last night around 7pm I knew it was Jonah’s school from the area code.  I heard her voice, softly accented and smart, kind and comforting.  I like her very much; I think she truly cares about the kids and works hard.

She told me she wanted to talk about Jonah’s behaviors and I said yes, thank you but very little else as I broke down suddenly and quickly, and silently thank God, everything in me held tight, squatting crouched at the top of the basement steps.  Tears came in quiet, steady little streams down my face as she spoke, making two distinct darkened wet spots on the red carpeted landing…I stared at them, teeth clenched…holding my breath…my silence broken only by the occasional word of affirmation.  Right.  That sounds good.  Thank you.

“Jonah’s been here more than a year now and he is so much better at working with others and in groups than when he first came,” she started.  I don’t have to be a psych major to know this tactic:  present a positive first, then a negative, then another positive.  It’s a good plan but she knows I know what’s coming.

I’m unsure what snapped something inside me and made me cry that way, but something did, and when she talked about how Jonah’s behaviors have continued, how some have gotten worse or more intense, I wanted to scream.  They think perhaps it is the medicine affecting him a bit, and she thinks also he is so smart, my Boo, that he seeks attention to the point of aggressing or poop-smearing or whatever just to see what happens – to watch who does what – to be the center of attention.

I think she’s right.  He’s an only child and was very used to being so.  Maybe he’s mad about sharing so much with so many other kids.  Not material things, not tangible things, maybe…he wants games and fun and snuggles and chases and it’s all got to be about him…maybe.

We don’t know they’re not sure …she is going to try a positive reinforcer squeeze toy or something he can hold tight and squish – a stress ball or stuffed animal or something – a comfort object, as they would say in The Giver.  I wonder too if a weighted vest would help.  Sometimes I feel like I want to crawl out of my skin, abandon body altogether, this cage of bones, and fly away.  Maybe Jonah feels it too (although he probably wants to grow gills and swim away).

I want to help him.  I thought he would get better there.  I didn’t realize the placement was necessary but also, quite likely, permanent.  The only way I could do it at the time was to leave that part out and not think about whether or not it was a place where he can eventually come back home.  All I  knew was I was losing him and I needed quite desperately to lose him and it all felt like crawling through fire.

It feels like crawling through fire to consider him being away from me like this indefinitely, aggressing, battling blindness and arthritis and whatever the fuck else we don’t even know about.

It’s all so different from anything I imagined, this path.  God hold me steady on it.

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first world problems & lottery tricks

Posted in Anderson School, autism, behavior, grandma, placement, swimming on August 13, 2012| 3 Comments »

I haven’t felt like blogging, which is unlike me, but lately it feels like I’m whining.  I feel envy and anger and grief, then I feel guilty for feeling envy and anger and grief.

In the midst of earthquakes and shootings, all I bitch about lately are first world problems:

I forgot to buy coffee creamer.

Jonah has a “management” at school (which is a euphemism for an aggression requiring a “takedown.”)

I have to write two articles for the Capital District Parent Pages this month instead of one, so I’ll have them done before I go to Mansfield, Missouri to see Laura Ingalls Wilder’s home & Pa’s fiddle on my birthday.

I haven’t been practicing/learning my Spanish enough.

That kind of crap.

So I went to my first organized party since I was in Four Winds.  It was my cousin’s son’s son’s 1st birthday.  (Boy, that sure dates me!)  I was afraid to go.  I’m always afraid to go to parties, especially when there are children and those children are regular ol’ kids running, playing, and making everyone smile.  I’m afraid my envy will burst through the fragile veneer of my smile – afraid I’ll cry and make everyone feel weird or uncomfortable.

Then someone says “you should have brought Jonah over,” and I’m afraid my anger will burst through the fragile veneer of my calm – afraid I’ll get snotty and say, “do you think I’d have placed my child in a residential facility if I thought I could bring him to a party?”  He’d attack the little ones and wreak havoc on the party-goers in general.  Of course it’s not as if the person who said that to me was being anything but kind and accepting, but still the anger rises.

None of this is fair.

But I kept the envy down and the anger away and simply enjoyed the people I haven’t seen for so long, all my relatives I love.  I did cry at one point, but it was only because my uncle M was talking to me and made me feel so embraced that my tears were ones of heartfelt emotion, pulled out of me by his loving-kindness.

Small steps.

On Saturday Andy drove Jonah up to my mother’s house.  It looked so threatening in the sky – about to rain, about to rain.  I begged God:  please hold off the rain until he gets a chance to swim (in my mother’s neighbor’s pool).  And then the rain did hold off so he could swim, and Jonah asked for train and we did see a train, and we ate sandwiches and chips and drank black soda.

On another note, I’ll buy a few Powerball tickets because it’s up to $305M.  Because that’s what people do…a dollar and a dream.  I never realized it before but there are all these websites where you can increase your chances of winning through statistical analysis.  I’m sure now I’ll definitely win Wednesday night, and turn my son’s school into a freaking paradise for kids with autism.

A few pictures from Saturday:

pimpin’ his Guster shirt

Jonah, in his element

My boo is still up and down, still attacking with no motivation.  Today when he aggressed, they were taking him to the pool, for God’s sake.

Nice goin’, Jonah.

I’m off to send pictures from the party to my aunt, and then squeeze in some Rosetta Stone.  Then sleep — beautiful, wonderful, awesome, comfortable sleep.

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