Month: October 2014

Storytime

Our local library has a “sensory storytime” for children on the spectrum or with other special needs. We went once last year but at the time we were still struggling with the whole ‘get in/get out of the car’ process. So we hadn’t been back. We’ve pretty much mastered that now so I signed us up again.
Welp… Sensory storytime was a bust.
The room was double booked so storytime was out in the kids area. And there were a LOT of kiddos there.
Okay like ten, but that’s 10x more than he can usually handle. And then add in the parents. And it was a different librarian. And there were drawers of shared Thomas and lego toys. Yeah.
He really did okay though until the bubbles. Bubble. MACHINE. That was just all kinds of exciting. So there he was, flapping his hands and doing what we call his “scarecrow dance,” just all kinds of happy.
Then it was ear hitting/face slapping panic when it was over.
We didn’t even get to check out the book he’d picked out. He was done.
Oh well.
We tried.
#AutismAwareness
#WhenSimpleThingsAreHard
P.S.
Pic is me carrying my 5 year old one BLOCK back to our car. Post-storytime.
Because I’m Wonder Woman.  And we all know it.

Eclipsed

My Boy’s language development has hit a bump.

He was making progress with his ‘wh’ questions in language therapy. Really awesome. He had finally figured out that a question is a prompt for an answer.

No, he doesn’t differentiate between who/where/when/how unless the subject or object implies a certain response. But the Back-and-forth of questions is a big deal for us. Very big. For a little boy who acknowledges his name 20% of the time to take questions as a prompt for conversation… is just… wow. I guess unless you’ve lived it you can’t quite understand.

It’s had us all in giggles.

Then suddenly last week we noticed something was wrong.

For all of last year and part of the summer he worked on prepositions. On. Under. Over. Behind. Paper prepositions came easiest. Pictures. Cutouts. Drawings. They came first and rooted the strongest.

Then we made our way up the ladder. Paper laying down may imply different prepositions than paper on the wall. “Under” moves, you see.

Then there are prepositions with objects. Putting the tiny Lego Michaelangelo behind the 3-D Lego house is a whole new perspective. Did you know it was this complex? It can be. For a child with language disorders these nuances that other children just naturally absorb… don’t always absorb.

And then there’s the belly whopper of prepositions. 4-D relational. The toy is behind him. Behind. HIM.

That was tough. Behind him wasn’t a general area. It was a mystic place in the sky. One that evaded him as soon as he turned around until he was just turning in circles. Where was this curious place we hid his toy? He would be so confused.

It was funny when he was 1. It was hilarious at 18 months. Not so much at 4. When you know it’s a problem.

But this summer before he turned 5 he started getting it. Finally. We could direct him verbally to an object he was looking for and he could find it!!! Pride in a child’s accomplishment may be a bit different for a Spectrum Mom, but it’s still pride in a child’s accomplishment. Hard. Earned.

And so we moved on to ‘wh’ questions. The bane of so many spectrum families. And he just started sailing through them.

Cue angels singing.

And that’s when we noticed. He lost the prepositions. He totally had them. He HAD them. A year and a half of work and he HAD them. And then they were gone. Not completely but so much so that I could feel myself physically shrinking under the worry. Some of his expressive prepositions are there still. The simple ones. Sometimes now he will understand receptively he is asked to perform the expressive ‘put this on’ something.  The rest? Gone.

It’s okay to feel that wonder bread knot in your throat choking you now. I know I did.

And since I’m always afraid of being that skiddish/paranoid Mom I asked Grandma if she noticed. She had. And was worried, too.

So yesterday I was hitting up the SLP’s with questions. Getting tips. Reeling in my connections. Panicking. Trying to break down possibilities. The causes. Track the next steps. Worried. Panicked. Scared. Overwhelmed. Sad. Panicked. Did I mention panic? It’s a great one when anything resembling regression or loss of skills pops up. Just. Great.

And then I had to go to school, because that’s what I do. And I’m sitting there in class trying to listen, trying to pay attention. Trying not to be distracted by anything and everything. Because it only takes one little chip off a porcelain cup before it starts crumbling. And my attention is fragile.

When it was time for the eclipse, I was grateful for the break from class and I ran outside to look. I blinked. I looked. My eyes watered. I blinked and looked again. Until I could see it. There was this tiny little bit of rock (aka the moon) blocking out a part of the sun.

And here’s where I’m about to get profound thoughts.

Where I stand there realizing that the moon can only block part of the sun because it’s closer to us. Because that big, freaking ball of fire in the sky could swallow the moon WHOLE if it was actually next to it and we wouldn’t even see it go.

And I thought about the sun. How I don’t run outside to look at it and marvel at it and stare at it until my eyes water and my head aches. Ever.

Yet there I stood. Staring at the eclipse.

Because, from my view, a huge chunk of the sun was obliterated by the moon.

And I realized that’s what we have right now. With my boy.

An eclipse.

A small, tiny thing in our lives was taking the glory that IS our lives away from me. The glory of him. The brightness of all the amazing things he has done and accomplished. The awesomeness of his determination. The strength of his will. Him. My sunshine.

Preposition loss eclipses ‘wh’ questions. Eclipse him. My son.

And my profound little mind decided that our eclipse was just a thing to look at. To notice. To address. To work on, yes. But not to be more than that. Not to panic over. Not to see instead of him.

I could either focus on it or focus on the sun.

So here’s to sunshine.

G’nite ❤

Ecliiiipse.
Not that you can tell from the pic. But I could tell.

Because I looked at it. 20 minutes before it was safe .

Because I’m a rebel.

#Eclipse.

T.G.I.F.

So.

My Boy did some new things.

He:

1. Got Legos wet yesterday at OT without screaming. He didn’t enjoy it, but he did it. He loves water. Loves. But wet Legos are poisonous. K? K.

2. He did not put on socks after getting his hands wet at OT. No, I don’t know. It his thing, k? K.

3. He sat down and played/shared with a male child he’s only seen a few times at OT. He lasted about 5 minutes. It typically takes us months of regular contact to get to this point. Dunno whuz up there.

4. He got himself a drink this morning. No biggie except 2 months ago he couldn’t even tell us (or seem to know) when he was thirsty. Now he’s getting it himself? Huh?

The kicker is though that this morning we are on orange alert. He’s seriously about to pop an anxiety rocket. Like his body/emotions can’t keep up with the new things his brain is doing.

He’s pacing. He’s verbally stimming. He’s screaming in spurts.

Let’s call this a psychic mommy warning;

Do not approach. 

Do not make eye contact. 

Do not speak unless spoken to. 

Stand ready.

Meltdoowwwwwnnnzz a comin.

Pic of my Boy yesterday in OT with a Lego Boat. In the water. His OT sent it to me. Because she couldn’t believe it.

The Look

Hey friend,

I got a “look” today from a woman as we were leaving the grocery store, but it wasn’t the usual look. It was the pinched smile, raised brow and sympathetic eye gaze of someone who, if nothing else, “got” that my Boy was miserable.

 I was alternating hips so his headphone-wearing self wouldn’t give me a black eye, walking full blast past the pumpkins toward the parking lot.
 And she got it.
She got that he was not wailing and screaming at the top of his lungs through the aisles because he thought he could manipulate me. He was not thrashing because he thought he could win. He was not crying and snotting and choking because he needed a stronger momma or a Bible thumping on his ass.

He was full on meltdown and long, long past rationalizing a way out of his torment.

I didn’t know her. I don’t know that I would recognize her again if I saw her. I have only a vague memory of light hair pulled back tightly from her face. Or maybe it was brown and just highlighted. I don’t know.

But I saw her.

And I was grateful.

There are lots and lots and lots of blogs and articles online complaining about the rudeness of other people when autism affects their day unexpectedly. I’ve had a few of those incidents myself, but only a few.

The rest can usually be categorized as either blank-stared shock or awkward avoidance. A small percentage, usually someone of the more… Ahem… Grandmotherly persona, occasionally attempts to cajole him into distraction, which doesn’t work and in fact usually makes the situation worse, but is actually very thoughtful.

The rarest of the rare though, the golden response, the creme de la creme of acknowledgment,

is sympathy. 

Not sympathy for me because ‘my child has autism and OMG!!!‘ but sympathy because ‘he is upset and his Momma is sad that he is upset.

It might come from a place of experience or empathy or compassion or just flat out kindness. I don’t know. And I don’t know because it is so rare.

It’s a very lonely feeling, having a child you love more than anything in the world fall apart in front of you when you know the only thing you can do to make it better is push through or leave. It’s isolating. I can handle it like a badass, don’t get me wrong. I can carry that 45lb, writhing five-year-old superhero under my arm like a football all the way through a super Wal-Mart and out through the parking lot like I carry the mail. I can stay calm and keep my head up, my keys ready, his shoes on and still make eye contact with anyone in my way. There is no defensive lineman that can block a Spectrum Mom.

I can usually even find my car in the lot the first row I walk down, too. This is part of my natural awesomeness: don’t be intimidated.

But no matter how well I can manage grocery shopping during a nuclear meltdown, I still feel the social isolation of it.

Deeply.

So, Ms. Eye Contact, I just wanna say “thank you.”  Thank you for holding my gaze long enough for me to smile back. Thank you for breaking me out of the zone and spending 2 seconds out of your day to acknowledge me.

Thanks for really seeing us.

Love,

Spectrum Mom

(& Super Underpants thanks you, too)