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Archive for June, 2014

Jonah is well.  There is the usual stress for him associated with the end of school, the break in his routine and its resulting aggression or crying jag.

When there is a day off from school Boo is used to visiting with his daddy, but his daddy can’t come and get him every day and poor Boo can’t understand that – or perhaps he simply refuses to understand it.  I can’t wait to see him on Saturday.  Last Saturday I had less time to see him because I attended a parents’ group meeting on the Anderson campus.

Jonah has had a few aggressions since my last post.  My mind has blessedly shifted from a place of “watch the pendulum, hope it doesn’t keep too fast a tempo, wish it would silence itself into coda”  into a calmer spot of radical acceptance, where Jonah is Jonah and we all help him nurture, grow, and get through periods of stress, fear, or anger.  Especially his beloved daddy; long live Jonah’s amazing daddy.

Jonah and daddy = love

Jonah and daddy = love

This morning I walked outside to check my tomatoes (which will be miraculous plants if they are even close to “knee-high by the Fourth of July”).

I squinted at what looked like a piece of wood stuck in the fence…half on one side, half on the other.  I moved closer and saw it was a bird – a young bluejay, sitting as if too big to get out of its spot and fly away.  From about a foot away, I looked at the bird and the bird regarded me calmly.  I reached out to ever-so-gently touch its feathers, thinking maybe it had been stunned scared by Almanzo-my-cat, but Manzo was inside.

Then I crouched down so we were eye-to-eye and I stared deep into the bird’s  sparkling, black, liquid eye, feeling like Ricky Fitts filming the “beautiful dead bird” in the movie American Beauty…remembering him, for a moment, and how he felt about death, and that paper bag he danced with — how he said:

That’s the day I realized that there was this entire life behind things, and this incredibly benevolent force that wanted me to know there was no reason to be afraid, ever. Video’s a poor excuse, I know. But it helps me remember…I need to remember… Sometimes there’s so much beauty in the world, I feel like I can’t take it, and my heart is just going to cave in.

I snapped out of this and went into Wildlife Rescue Mode.

How do I help this bird?  It has to be injured; otherwise it would have flown away quickly the moment it saw me.  Confused and trying to remember everything I’ve ever learned about nursing a bird back to health (which is one chapter in a Laura Ingalls Wilder book where they find some baby birds and try to save them, failing one by one until they all died).

I went into the house and got a shoebox.  I put a soft dish cloth in it, then took another dishcloth and went back out to lift the precious little bird gently from its perch, lay it in the soft box, and examine it carefully.  When I came back, not one minute later, the little bird had flown away.

And circling above me was a larger blue jay, soaring from branch to wire to chimney.  Though they are chirpy and scolding birds, this one made not a sound.  It was as if he were saying hello, and maybe thank you, as well.  I double-checked around the fence to be sure the little one hadn’t fallen.

It was simply gone.

And so I clutched my box and soft cloths and went inside again, sweet tears coming into my eyes.

This day I was able to visit closely with a small bluejay, who was not afraid of me in the least, and have a conversation with his father (?)

A miracle to begin a beautiful day.

“And when I awoke I was alone
This bird had flown…
So I lit a fire
Isn’t it good?”

~ Norwegian Wood by the Beatles

I am so blessed.

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This post is in response to a comment I received on yesterday’s post, and in response to all the silent lurkers asking the same question:

If Jonah is so much better, why not bring him home?

First of all, Jonah does not live in an institution.  He lives in a house with 7 other kids and round the clock caregivers who love him.  He has a regular schedule & routine.  He goes to school on campus with wonderful teachers who nurture and educate him in a way that no one else could.  These people live and breathe autism.  Boo would never, ever have come as far as he has without being at the Anderson Center for Autism for the past three years.

Anderson also has pre-vocational and independence training, with mock apartments and mock work situations depending on each child’s ability.  The children learn to make beds, do laundry, help cook, etc.   The caregivers  take Jonah out in the community and teach him how to behave appropriately in the grocery store, at the movies, bowling, etc.  They have a huge pool on campus and Boo loves to swim.

Jonah is not “fixed.”  They have not cured him of autism.  I called it a “mini” major milestone for a damn good reason.

In fact, just last night Andy called and told me he’d taken him all day (which he does often, whenever he can, because Andy moved just 5 minutes away just to be close to his son)… and that Jonah was “squirrely” — he’d had an aggression just that morning because another kid came in his room and Jonah didn’t want him there.

Jonah ended up attacking a caregiver and pulling some of her hair out.  Now, that’s not a “two-person take-down” – the stuff I’ve been speaking of that has been mitigated to once a month or so — but it is aggression and he still needs to work on that.

I am still afraid to be alone with my son, Andy suggested I add once he read this.  I don’t like to type it but it is true.  Jonah cycles through his behaviors (what I’ve called the pendulum) and at any time he could really hurt someone during an aggression.

Andy also suggested I not answer flamers, so I took a lot of other stuff out.

‘Nuff said.

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So last week my mom and I are sitting at Andy’s kitchen table watching Jonah put his socks and shoes on (which he can now do pretty much by himself, although the ankle of the sock sometimes ends up on top).

If he needs help, Boo will ask “I need help please?” and you just know those teachers and caregivers at Anderson have been working on teaching him this since God knows when.  I don’t remember exactly when he started doing it but that’s what part of what this blog is for – to account for the history of things.  It’s also a cathartic process, a true-spun story, and an offering to anyone interested, most especially for those on a similar path…most MOST especially for those who need to feel they are not alone right now.

The whole “I need help please” was incredible.  It took so much frustration and anger out of my son.   Suddenly, like a flipped switch, a synapse turned ON.  He made the connection.  I can ask for help and someone will help me.

It’s such a simple thing.  So simple that many I could tell this tale to would think so what?  I suppose that’s because regular kids learn this stuff when they’re, what, one and a half?  I don’t even know.  But the point isn’t when Boo learns things.  It’s that he’s learning things!  No matter how slowly – no matter how long it takes – he is learning and doing so faster and better than before — and, along with it, only has a serious aggression every month and a half or so.

YES, you read that right,  Where three years ago Jonah had a serious aggression requiring a two-person take-down often 12 times in 12 hours, now it is fewer than 12 times in a year.

I owe the teachers and caregivers at Anderson everything.  I can barely talk to them sometimes; I am so grateful I start crying.  I wake every day and tell God thank you.  I can barely talk to God sometimes; I am so thankful there are no other words.

So yeah, last week. I get up from the table to accompany Jonah and Andy on car ride of which grandma traditionally doesn’t partake, for two reasons:

1) Jonah disallows anyone riding in the back seat with him if this is at all a possibility.  The kid likes his space.  And while it does not entail the lion’s claws, kicks, and headbutts that it used to upon daring the feat of entering the backseat with Taz-Boo next to you, it is still something that will frequently have him pushing you away, demanding more and more space, until you are smushed against the window and door.

2)  The car ride usually consists mainly of Jonah demanding whatever music he has chosen to be played louder and louder and still louderAdditionally, that music is typically of a genre my mother despises almost as much as she despises loud music of any kind.  (There are no back speakers in the car, so at least Jonah’s hearing is likely safe.  Plus we don’t take it past 6 out of 10 or so, ever). We just tell Jonah that’s the loudest it will go.

The point of this dissertation and tangential post:  When we left my mom behind at the kitchen table, Jonah turned back and said “bye, grandma.”  No prompting.

I think I was so in shock I went into automatic pilot and put that whole thing on a shelf for a good minute. These mini-leaps are simultaneously marvelously huge — but you can’t very well freak right out in the midst of it all.

And the car ride was fun, Jonah requesting a Public Enemy throwback to the late eighties and bobbing along to it like the thumb-sucking hipster he is…

Then yesterday, all of us are sitting at the table having lunch (and Jonah sits at the table to eat lunch now, wonder of wonders, rising to circle or walk around a bit notwithstanding).  We’re eating our “tune-fish” sandwiches and eating chips when Jonah takes a big sip of Vitamin Water (his new kick) and says, looking at each one of us in turn, “Hi, mama.  Hi, daddy.  Hi, grandma.”

Oh——kay.  Hi Jonah!  Hello!  Keep that synapse on, kid, I want to have a whole big conversation with you and I know it’s all baby steps but oh wouldn’t it be wonderful if it were the start of conversation?  Because there is so much I want to tell you and so much more I want to hear you say and I know I am dreaming but Oh God Jonah you are initiating conversation and that is BIG, Boo, I don’t need a speech therapist to tell me that, but I will definitely seek out your speech therapist and thank her, fall at her feet crying tears of joy, because I would love to know you on another level, Jonah, my son my only child, really know you…trust that mama will meet you halfway.

On our car ride yesterday I even caught one of Boo’s verbal breakthroughs on video — him answering me instead of repeating back to me what I’d said.

The thing about “verbal” children with autism is there as many variations of “verbal” as there are variations in autism itself.

Jonah is verbal, yes, but he didn’t say anything but mo (more) and point or use PECS  till he was, what, 4?  Andy can help me remember, for that was before this blog.  Anyway, verbal for Jonah has meant, at first, words to express wants (cookie?  black soda? car ride?) and then small phrases “want music on” (which he still says whether he wants it ON or LOUDER – maybe that’ll be his next verbal hurdle), then full, albeit very limited, full sentences — “I need help please” — but never before has he answered me.  Before, had I said to him “Hi, Jonah!” he would have parroted back “Hi, Jonah!”

Of course one of the major frustrations is he could never – and still rarely – tells us if something hurts.  I want him to get better at that so we can help when he’s sick or in pain.  One strange footnote and exception is when he was years younger, the day of his first eye operation.  In complete and utter despair, he leaned his head against the window in our kitchen and uttered, clear as day  “eye hurt?!” as if the pain forcibly yanked the language right out of him.  We gave him what pain meds we could and I remember cradling him close helplessly.

I could even get him to say “I love you mama” and he would parrot back to me “I love you mama.”  I still can.  In fact, it will be one hell of a day when my son turns to me without prompting and says “I love you mama.”

That one I’m still waiting for.  But I believe it will come, and the joy of that belief is indescribable!

– – –

There are other things I want to write about.

I’m taking art classes and I have ideas for a forum from which I can spout about my major preoccupations with Laura Ingalls Wilder, Guster, and Elfquest – among other more stuff, like my first attempt to learn the guitar and other musings.  Maybe I could start a new blog.  I want to write more.  I’m all about creation lately.  Bead necklaces and Sculpey clay, sketches and nature art.  It feels really good.

Some pictures for you:

Sketches from art lesson #2, done with a 4H pencil.  Mine is on the bottom left - the darker one.  My teacher wants to put it in a beginners art show!

Sketches from art lesson #2, done with a 4H pencil. Mine is on the bottom left – the darker one. My teacher wants to put it in a beginners art show!

Jonah and his "salad" (spinach leaves and ranch dressing)

Jonah and his “salad” (spinach leaves and ranch dressing)

This one is funny, but it DOES make sense…

My kid had it right all along.  He has always pooped the "right" way.  Glad we never corrected him!  ;-)

Jonah had it right all along. He has always pooped the “right” way. Glad we never corrected him! 😉

I love making collages.  This one I created on the back of an envelope in which I sent a card, necklace, and other goodies to Robin Roberts at Good Morning America.  Her book "Everybody's Got Something" was very good I wanted to write to her.  Never realized before what she'd been through.

I love making collages. This one I created on the back of an envelope in which I sent a card, necklace, and other goodies to Robin Roberts at Good Morning America. Her book “Everybody’s Got Something” was very good & I wanted to write to her. Never realized before what she’d been through.

Jonah's after-bath watching of endless trains coming and going.  Thank God for the railfanners that put these on You Tube,

(Jonah’s after-bath watching of endless trains coming and going. Thank God for the railfanners that put these on You Tube).

LOVE to all this happy Sunday!

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