Face Time

Lately, Henry's been in the mode of making goofy faces to see if I'd mimic him.  And of course, I have to.

This series of photos was kinda' difficult to take blindly while I was making sure I was making eye contact with him and making the same faces at him.  Pretty significant milestone for him, really.

#3, 5, and 9 are my favorites.

Non-Verbal and What It Means

"Non-verbal" when it comes to neurological disorders can manifest in many ways.  In Henry's case, it means that words don't come out of his mouth.  He makes sounds, and they're often a blend between intentional and unintentional.  He can still communicate, and he definitely understands words.  There's just some wire crossed in his brain to where the ability to use and form those words is interrupted somewhere.

The way I think about it is in terms of a foreign language.  Growing up, I only spoke Japanese until I got to school, and then I learned English.  During junior high and high school, I studied Spanish and Russian.  After school, I picked up a teeny bit of French.

Because I lack fluency in Russian, French, and even Spanish, speaking words in those languages either requires a lot of internal translation before I say something or I simply don't know what the word is that I'm looking for.  But if I hear a word or phrase, I'll know what it means, either because it triggered the dormant vocabulary, or I hear it in a particular context (noting, for example, that many words in Spanish and French have similar root constructs with English).

To put myself in Henry's shoes, I imagine what it would be like if I lived in a French-speaking household, but take away my personal innate drive to study and learn that language (for illustration's sake; Henry likely has the desire, but his FXS makes it much more difficult for him than for me).  Over time, I'll learn what certain sounds mean, but I won't necessarily be able to recall them myself to initiate conversation.

If my French-speaking parents ask me to get une assiette, I'll associate the sound of the word as well as the context to go get a plate.  But if I want a plate, I may not necessarily remember the word.  So I'll point, grunt, use my own terms, etc. to indicate a plate and hope that my parents figure it out while continuing to jabber at me in French.

I know he understands words, because at night, when I call out "Henry, bath time," he'll get up (most nights) and head toward the stairs to go up to his room so we can get ready for bath.  When I say "Henry, it's bedtime," he'll get up (most nights), and go to his room to go to bed.  I no longer have to carry him or drag him, because he knows what those phrases mean.

He just doesn't say them.

He may be non-verbal, but he's not non-communicative :)

Attachment

The emotional attachment we feel to our babies and children is an interesting thing to contemplate.  We often see and hear in movies, TV, books, and in discussion all the varying degrees of attachment to newborns, and until/unless one has experienced it, it can be hard to really understand how it's possible to instantly fall in love with a new creature like a newborn.

I know I didn't really believe it at first either, but as Lori's pregnancy with Henry progressed and all the things we went through with it, I was ready to meet Henry.

The delivery itself was a nightmare (if you haven't heard it already, it's another long story for a different day), so when I finally saw Lori and Henry being wheeled back into the room, I was already an emotional wreck with what was going through my head.

The nurses handed Henry to me.


and almost immediately, he opened his eyes.  I saw a little Asian kid that I knew instantly was My Son.  And I completely lost it.  And of course, the nurse wanted to take a picture of that moment which was not exactly at my best, but I tried to keep it together as best as I could.  I felt like I bonded instantly with Henry.

With Evie, it was different.

I don't know if it was because her delivery wasn't as emotionally fraught as with Henry so I wasn't as bought-in to the stakes or what.  But when she came into the world and I held her, I didn't feel that instant connection like I did with Henry.

Sure, she's cute, tiny, and helpless, so naturally, I'm going to take care of her.  But it felt strange even at the time that I didn't have the immediate bond with her.

Of course, that took care of itself over time, and the phrase "daddy's little girl" is a very apt description of not just her but our relationship.
       
 

Henry was "My Buddy" since Day 1 -- hell, since Minute 1, really.  With Evie, it took a little longer to warm up.  I honestly don't recall anymore when that moment was, if there was any particularly defining moment or whether it was just a gradual build-up over time.

We didn't bond right away, but I think it's safe to say that it's not a concern anymore!

Language Development

On the one hand, it's thrilling to watch language and vocabulary developing in a kid. On the other, there's a bit of sadness to the loss of the cute baby language.

Evie's words were always very cute, but as her language skills develop, the Evienese starts fading away.

Instead of "duckfries," she can now articulate "butterflies." Her old "woppen" is now clearly "what happened?" Now her "eppepant" has clearly become "elephant."

We're thrilled for her language and speech development. We mourn the loss of her adorable baby-speak, though.

(She still has "applebus" for "octopus," however)

Thank You

While I have a few moments to spare, I'd like to thank all of our family and friends who came out to Sherwood Brewing last night for the Utica Unicorns/FXAM fundraising night.  Some of you traveled a great distance on a Thursday night to hang out with us, and that hasn't gone unnoticed (Dennis & Beverly!).  Our local friends, so many of you came out tonight and between the rush of people as well as trying to calm the kids' anxieties, it was a whirlwind.  It almost felt like a wedding reception, with the blur of activity, people, snippets of conversation, and pausing for a few seconds to take a sip or bite of something.

Adam, Bruce, & Curtis, thanks for stepping out of your comfort zone and giving Sherwood a try. :)  You guys completely made Lori's night, more than we can express in words.

FXAM crew, this evening wouldn't have happened without you.  You welcomed us into the fold, showed us that we're not alone, and even though we can't participate as frequently as we'd like, you're always in our thoughts.  We wouldn't have gotten as far as we have with the kids without your support and guidance, as well as just the occasionally well-placed "it's gonna be okay."

From pediatrician and dentist recommendations to even something that seemed as simple as melatonin, they've been completely life-changing in our house.  To be able to meet a medical professional whose first question is NOT "fragile what?"

And of course, this evening DEFINITELY wouldn't have happened without Sherwood Brewing Company and the old Alpha Team & regulars (Mary, Erica, Meridith, Rob).  Lisa, Ray, and Corey, thank you all so much for this and so much more.  We had to leave in a rush, so we weren't able to say hi & bye to everyone, or even see who came after we left.

But know that you are all loved and appreciated.  We feel beyond humbled and grateful for your love, support, patience, and friendship.

The On and Off Switch

Part of neurological disorders is that the brain can be sending out so much uncontrollable energy on its own through the nervous system that, at the end of the day (literally), the body has no more of its own energy left and is just operating on the "fumes" of nervous impulses.

Think of it in terms of being so exhausted by the end of the day physically, but your brain won't shut up and so you have difficulty getting to sleep.  Now imagine that in a 4-year-old.

Every.
Damn.
Day.
Of.
His.
Entire.
Life.

We who are in our 20s, 30s, 40s, and beyond every so often have reprieve, because chances are that those fits of nerves come from our daily routines -- job, chores, errands, social obligations, etc.  Henry doesn't.  He doesn't have the luxury of being able to take a sick day to unplug and unwind (and thus, by extension, neither do we).

This is how his brain is wired, which means that, short of chemical intervention, he can't escape from it.

But this post isn't meant to be a downer or to bum everyone out.  It's meant to set the stage for a cute moment that just occurred (because we have to take these moments every chance we get).

Henry was clearly falling asleep while playing because he had nothing left, physically.  His body was cashed out but his mind kept going.  It got to that delicate point where even though he was trying very hard to remain engaged, his physical being had had enough.  So it was time for bed.

I called out, "Henry, bed time!"

He may be non-verbal and very delayed in communication and comprehension, but he knows certain terms, words, and phrases.  "Bed time" is one of them (as is "bath time," thankfully).

I walked up the stairs and he tried to sit up....and failed.  He curled up into a ball, forehead to kitchen floor.  "Bed time," I said again, gently.

He struggled mightily to push himself up to his feet.  He got up, and made the semi-circle around me toward the stairs.....and misjudged his turn radius.  He was so tired that he turned too wide and nearly crashed face-first into the wall.  Luckily, he stopped himself just in time, but it was enough.

I grabbed both his hands and helped him up the stairs into his room.  He collapsed onto his bed, and, as per our nightly routine, I tried to lift the bottom half of his body onto his bed and he started giggling because he's just naturally ticklish.  I flopped him into bed, gave him his monkey, pulled his comforter over him, patted his head and said "good night."

This was about 15 minutes ago.  He's already asleep.

Going Camping

Not in the literal sense.

No, Henry's latest gig at bedtime is to get a bit hopped up and play around for a while in his room.  And since he's in an actual bed, he can climb out of it.

At first, we'd hear a lot of stomping on the floor coming from his room.  He wasn't screaming or crying, so we weren't too concerned, but we checked on the monitor anyway.

He was missing.

Uh, wut?

Using the camera controls, we found him lying on the floor, just mumbling to himself.  And occasionally, we'd pan the camera to see him not only lying on the floor, but with his pillow, blanket, and Monkey on the floor with him.

This is what we've taken to call "camping" (and based on the noises I hear above me right now, he's doing it again).

UPDATE: he fell asleep after this latest "excursion."  I did manage to lift him up and get him back into bed without waking him.  Hooray, deadlift workouts! :)

On This Father's Day

I posted as a joke that I'm a third-rate father on a friend's post, but in a way, I realized that it's kinda' true.  I don't want to be labeled as "the best father, the best husband in the world," because then, if I was already the best, what do I have to aspire to, to work toward?

What's my goal and inspiration if I've already achieved the status of "the best?"

I have to work at this thing every damn day (and I sure as hell know that I'm not 100% successful every day).  Sure, today might be the day that Dads are celebrated, but we can't rest on those laurels, even for one day.  If nothing else, then today should remind us that we need to keep working, to continuously earn this praise and respect, not just expect it.

From a kid's perspective, I know it's hard to have lost a father.  Many of you are in this scenario, and those of you who know my history know that I'm right there with you (ESPECIALLY those for whom this occurred so recently).

I certainly had a hard time coming to grips with the loss of my dad in 2003.  I still feel pangs of wistfulness (and to a degree, guilt), but it drives me to be better in my own role.  To make my father proud of me as well as doing the best that I can for Henry and Evie.  I may not grieve anymore, but it's still weighing in the back of my mind.

Was my father the Best Dad in the World?  Of course not.  He was struggling and learning the best he could within his own circumstances, just as I am.  I know I'm not the Best Dad in the World either.  I'm just a guy trying to not be a total screw-up for these kids, and as we've seen, being a total screw-up is not defined by levels or amounts of social status, wealth, or privilege (coughDanTurnercough).

If nothing else, then today is a day of reflection and contemplation.  As the kids are upstairs blessedly having a nap so that I can sit here, drink a few beers, and work on this post, I think about my role in their lives, the degree of influence I have, and the responsibility that comes with it, especially given the "status" assigned to them and their particular needs (and the reality is the depth and breadth of that responsibility really can't be fathomed unless one is a parent of a child with special needs; it's a different world that has to be lived, not explained).

This week marks the official beginning of my summer schedule at work.  It means I'm putting in more physical labor at a higher pace and urgency than at any other time of the school year.  In a way, it's fitting that Father's Day comes as the day before this "second season" so to speak, because now I have to shift into higher gear as an effect of financially providing for the family.

This is the day of crystallizing my place in the family dynamic, of defining my role and responsibilities.  Of reminding myself within myself, "don't screw this up.  Your family needs you not to screw this up."

Today, I reflect upon my family.  Tomorrow, I get back to work, in more ways than one.

Woppen

Evie's newest word over the last two days: "woppen."

No idea what the hell she was saying or what it meant, until today when it suddenly clicked in my head: "what happened?" It must be it, because before, I'd just parrot it back to her, and she was clearly not satisfied.

Today, Lori and I both responded with "what happened? Well...." and then briefly explained what we were doing at that moment. That seemed to satisfy Evie, so by inference, that's what she meant to say.

Steps to Dealing With the Zoo

1. purchase annual membership to Detroit Zoo (because you calculated that two trips with a family of four will more than pay for the membership fee).
2. burn a vacation day on a weekday that your son has a day off from school because special-education schools need to alter their schedules and furlough days in order to continue providing services through the summer while adhering to the whole "days in session" thing (it's a K-12 thing; just follow along with me, if you're uncertain about what I'm referring).
3. pack everyone up into the van and head down to the Detroit Zoo on a Friday morning.
4. determine right away that you should have parked on Level 3 where the ramp is, because the kids freak out in elevators.
5. be thankful that you packed snacks in the backpack to stave off the hangry.
6. understand that the kids can handle about an hour at the zoo, and make your way with due haste toward the front entrance when they lose all coping ability at the back of the park.
7. be prepared for unreasonable wait times at the restaurant that you stopped at for lunch and determine that even 15 minutes is too long of a wait for a table. Leave immediately and go to a restaurant you know won't have that long of a wait for a table.
8. order your kids' lunches and a couple of extra-tall beers for Mom & Dad.
9. finish lunch, head home, dose the kids with Magic Sleepy-Time Juices.
10. Mom and Dad high-five each other. You just took the kids to the zoo and nobody had an unrecoverable meltdown.
11. think about going to the zoo again to see other things you didn't see the first time, but now armed with more information about what the kids can handle and how much time you have before having to pack it in and just GTFO.
12. use this information to plan other, longer trips elsewhere because we can't live shut in at our house for the rest of our lives.

Thanks, Evie

This Winter 2016 semester is winding down to a close. I have to attend one more class tomorrow night, and then next Tuesday is the final in another class. After that, my first year of grad school is done, and I have the summer off until September, when I begin my final year of any and all college ever again.

"Ricardo"
Cordoba GK Studio classical

But I have to thank Evie for one little thing. She insists that I play my acoustic guitar, to the point where she'll pick it up and bring it to me. She'll bat away at the strings on occasion but most of the time, she just walks away after I strum a couple of chords. But she makes me play it anyway.
You might have seen my recent project to clean up Madeleine (a very heavy-metal guitar, because it has pointy bits). I wouldn't have been inspired to do that had I not started playing again, and I wouldn't have started playing again had Evie not insisted upon it.
I started saving my allowance since the beginning of this year to do what I've wanted to do for a long time: buy an honest-to-goodness Gibson Les Paul just to be able to say that I own one (kinda' fell in love when we toured the Gibson factory in Memphis in 2007).
I don't intend to join any more bands or head out to jam nights at a bar. That's not in my lifestyle anymore. But call it a bit of a status symbol. And I was calculating about the end of this year that I'd have collected the cash to buy what I was looking at (and also proud of myself for planning the purchase with cash rather than credit). This weekend, I found a "blemished" item for about $400 less than its retail price, so I moved on it after thoroughly examining the shop's purchase/return policies and also exchanging messages with them.
Had Evie not demanded that I play, the LP might have remained an unattainable dream, and I wouldn't have thought to start saving part of my allowance every week. Or sell my bagpipes in order to generate additional funds for an instrument I WOULD play (the set that has remained in its case untouched since 2008, after I made the decision to return to college; see how all of this comes together?). The sale of the pipes pushed my savings to the point where I could move on the blem guitar.
So of course, to match the rest of the arsenal, it had to be the right color.

"Madeleine"
Jackson KE3 (standard D tuning*)

"Ty"
Conklin GT-5

This is a stock photo of what's coming:

"???"
Gibson Les Paul Studio T

It's entirely possible that I name this guitar "Evelyn," because she was pretty much responsible for this happening (and I'd have to use Evie's full name because there'd be no confusion then, since she has no idea who the hell "Evelyn" is anyway).

* Because standard D tuning makes it more metal, naturally.

"Cat's in the Cradle" Moment

Yesterday, when I was getting ready to leave for work, Henry was already up, in a great mood, and playing (much to Lori's chagrin, of course).  I had to sit with him for a few minutes just because his nature was infectious.  But time was ticking away, and I had to leave if I wanted to get ahead of the awful traffic on Hall Rd. that always backs up from Van Dyke before it dumps onto the M-59 highway portion.

I had my jacket on, just as Henry sat down at the top of the stairs leading down to The Pit and threw the vinyl basket that usually holds the small toys down the stairs (it was empty).  It's a game of "catch" that he plays.  Someone has to be at the bottom of the stairs to throw the basket up at him, and he throws it back down.

He wanted me to play "catch" with him.

As I started walking around him, he reached up his hands and tried to grab my hand to indicate that I should go down the stairs (remember: non-verbal, but not non-communicative).  I reflexively said, "oh, I'm sorry, buddy, but I can't play right now.  I gotta go to work."

He followed me into the kitchen as I stood by the back door, putting my shoes on.  He reached up to hug my neck (also to bring my head down for our customary head-bonk).

Then all of a sudden, that intro lick to Harry Chapin's "Cat's in the Cradle" started floating through my head.

That was a difficult roll out of the garage, into the driveway, and onto the street, and not because of the weird angle of the driveway and the size of the van.

Big Boy Bed

We've moved Henry to a big-boy bed!  A twin-size daybed with a trundle.  He's outgrown the crib that he's slept in for almost 4 years, just because he's just too tall.  The only problem is that because of the bed rail that we got requires a flat, stable surface, we also had to get a box spring....which makes his sleeping surface about 25 feet tall.

We may need to improvise a bit....

Things My Kid Says

Evie: French fry!  French fry!
Lori: [hands Evie a muffin]
Evie: French fry!
Lori: No, baby, that's a muffin.
Evie: Muffin fry!