Little Fish

Noah spent four weeks at a OT/social skills camp this summer, and then we set him loose for two weeks at the YMCA's swim camp. It was our first crack at mainstream program in over three years. It ended on Friday.

He received a certificate for "Honesty." Which as far as I can gather he earned mostly because 1) everybody got one, and 2) whenever he got in trouble, it never occurred to him to lie about it. 

But he did it. He made it through all 10 days of camp. We signed one incident report for hitting and one for towel-whacking, and by the time the kicking happened...well, his counselor went easy on him and skipped the written report, which spared him from getting kicked out on the third-to-last day. We explained and reminded and begged him each morning to keep his hands to himself, to use words instead, come on, dude, you know this. We had to remind him to respond when other campers said hello, we had to provide the teenaged CITs with strategies to help him transition without tantrums or play competitive games without rigid frustration, and we had to face the hard fact that none of this is easy for him. Still. Not yet. 

But he did it. He learned to swim underwater.  He went down a waterslide. He swam in the deep end. He gained a pound of strong, solid muscle. He hung upside down from the monkey bars. He lost his first tooth at the lunch table. He learned that sticking both your fingers in your nose at the same time is HILARIOUS. 

I'm really proud of him, you guys. 

Apple Store of My Eye

I had to ask what, exactly, a "word retrieval disorder" meant, when we met with the child psychologist to go over the action-packed, 25-page report on Noah's evaluation. I understood most of what was in there -- ADHD, auditory processing, some too-early-to-tell red flags for dyslexia for us to "keep an eye on" -- but the word retrieval bit was a new one. 

Was it like apraxia? I asked.

No, she said. That's an inability to form words. This is more about plucking the right word from your brain soup. Basically having it right there on the tip of your tongue, but unable to remember it, or only coming up with words that are similar in concept, but not quite right. 

For example: saying shovel when you mean hammer, bicycle for motorcycle, or in a unique-to-Noah coping mechanism the psychologist noted, expanding a simple sentence to include a ton of extra, early "filler" words, thus buying himself more time to come up with the more difficult verbs and nouns that would come later. 

That was really fascinating to see, she said. He's already very aware of what's difficult for him, and is coming up with his own accomodations in lot of those areas. That's a very, very good thing. 

***

The suggested school-based accomodations for a word retrieval problem include providing Noah with a "word bank" to choose from during fill-in-the-blank tests, or allow him to write expanded responses instead of counting on him to remember a single specific word, and to use lots of mnemonic devices and categorization exercises to help with his word-memory skills. 

I couldn't help but think that man, we are getting crazy obscure here, with the stuff you can now officially label as a "disorder." I mean, really:

PROBLEMS WITH WORD RETRIEVAL! CAPS LOCK COMPULSION! PUNCTUATION DEFICIT DISORDER! I HAVE ALL OF THESE PLUS WEIRD DOUBLE-JOINTED RING FINGERS. 

***

Last night, after dinner, Jason suggested we all head to the Apple store to check out their selection of educational games, to see if they included some age-appropriate typing or keyboarding skills. (This was another accomodation the psychologist recommended, to teach Noah to type as a less-frustrating alternative to handwriting.) Noah demanded clarification, probably thinking that we wanted to take him to a fruit store, which would have to be one of the WORST IDEAS EVER, unless we were talking bananas. Did the apple store also have bananas? 

No, we told him. The computer store. The one with the Dora games you like to play. 

Oh, okay, he nodded. I like the computer store.

A few minutes later we hadn't left yet, and Noah was getting impatient. 

Are we going to the...

That's as far as he got before his face contorted and the tears started. 

The word! I can't say the word! My voice doesn't remember that word! Naughty voice, why won't you remember!

Then he balled up his fist and started punching himself in the throat. 

Holy shit, I thought. Stop!

Computer, I said, as soothingly as I could. The computer store.

He repeated it and immediately calmed down, taking big deep breaths. I don't like when my voice forgets the words. It makes me angry. 

Of course it does, I said. It's frustrating. Everybody's voice forgets the words sometimes, though. 

We decided to go to the fruit store another time. We went to the playground instead. 

I Should Also Tell You...

...that we got Noah's evaluation results on Monday.

We didn't get them in time for his IEP meeting, but no matter, the school district team agreed that he belongs in the smaller special education kindergarten program for most academic portions of the day, with a few hours in the (gigantic, one teacher and 28+ kids, oh my God) general education classroom, albeit with "support" and regular pullouts for one-on-one occupational therapy for fine-motor delays.

All in all, a very good outcome, with no need for us to halt proceedings with our last-minute evidence and change of diagnosis and THIS WHOLE IEP MEETING IS OUT OF ORDER dramatics.

But yeah. We do have a change of diagnosis. ADHD, or at least several assessment scores that put him at the top of the "very high likelihood" range. Also a word retrieval disorder, and confirmation of a bunch of ongoing sensory-based delays that we already knew about, so like, whatever. Pffft. Bring it. And yet: GAH, OMFG, ETC. 

You guys, I am so tired. I am beat. I read the reports, I shrugged my shoulders, I went upstairs and lay down. I told the ceiling fan that hey, we could really, really use some good and happy and easy around here, and soon.

***

I told Noah about PopPop last week, probably no more than five hours after I knew. He took the news so nonchalantly I might as well have told him "Noah, I'm really sorry, but...we're out of butter." 

And then, a few minutes passed, and he revisited the topic after some thought: "You lost your Daddy!"

"Yes, I did. And it makes me very sad."

"I'd be sad if I lost my Daddy."

"I know you would. But Daddy is fine."

"Can I have a banana?"

"Sure."

And then, after a few more minutes, he coughed.

"I coughed but I'm not going to die."

"No! No you are not. Don't worry, PopPop was a very different kind of sick. The kind we couldn't give him medicine for, or the kind the doctors couldn't make better, and when you're sick we can..."

"Look, this is Harry Potter and he has a wand. See? See his wand, Mommy?"

"Yep. I do. It's awesome."

***

Later, out of the blue, Ezra asked "Where's PopPop?"

He asked that a lot last week, never quite satisfied with our answers, because PopPop wasn't in his chair or in his bed, and where else could he be? Why are we visiting Nana's house without seeing PopPop too? What the hell, you guys?

"PopPop is gone, Ez."

"In da car?"

"No, not in his car. He's...well..."

At this point, every time, Noah would get exasperated with our pussyfooting around the obvious, correct answer.

"HE DIED," he'd say. "HE'S DEAD."

***

One night -- oh, I forget when, exactly, every night has been a blur of grief and/or pregnancy-related ailments, honestly -- I had a headache and was sprawled out on the couch, bleating to the boys to please keep the noise down.

Noah came over and snuggled next to me.

"I'm sorry your head hurts, Mommy."

"Thanks, dude."

"But you're not going to die."

"No, I am not."

"And Daddy isn't going to die. And Ezra isn't going to die. And none of my friends are going to die. None kids are going to die. Or mommies or daddies or brothers ever."

"..."

"Right. Okay. Can I play the Harry Potter game?"