The Never Normal

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 louder.  Additionally, 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!

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

This one is funny, but it DOES make sense…

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.

(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!