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! :)
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.
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.
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).
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).
pack everyone up into the van and head down to the Detroit Zoo on a Friday morning.
determine right away that you should have parked on Level 3 where the ramp is, because the kids freak out in elevators.
be thankful that you packed snacks in the backpack to stave off the hangry.
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.
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.
order your kids' lunches and a couple of extra-tall beers for Mom & Dad.
finish lunch, head home, dose the kids with Magic Sleepy-Time Juices.
Mom and Dad high-five each other. You just took the kids to the zoo and nobody had an unrecoverable meltdown.
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.
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.
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.
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.
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.
Years ago, Lori and I went out to dinner to Joe's Crab Shack, when it still existed at the Utica Park Blvd. location (the one by Dave & Buster's, the building which is now a Red Ox Tavern). It was a warm evening, though not hot so we were wearing light jackets. I don't remember if it was spring or fall.
But it was a busy enough night to where we were waiting outside, along with other parties who were ahead of us. Among one of those parties was a little girl who was keeping herself busy while her adults were preoccupied. She was maybe 8, 10 years old. She caught our attention because she was indeed keeping herself occupied during the wait. She was examining the fixtures, the landscaping, and then was clearly wandering around, making up games in her own head.
I don't remember the exact circumstances anymore, but for some reason, she had a bucket. Maybe it contained crayons or other things, but either way, she had one. And at some point, she ended up wearing the bucket on her head while wandering around aimlessly, waiting for a table.
We thought that was awesome, because she did so without any sense of foolishness or attention-grabbing. She just did it because she wanted to. None of her adults paid her any heed.
Based on her actions, her body language, and the degree of self-assuredness she projected, we immediately knew this girl was a dork. And that is meant in the highest of complimentary ways. We chuckled and remarked to each other that one day, when we have kids, we would be blessed to have our own bucket-head girl.
That girl is Evie.
Evie is our bucket-head girl. She has zero qualms about looking or acting silly, because quite frankly, she doesn't know of such a thing. Granted, she's young enough to where she hasn't been broken down by the system, telling her "don't be so silly," "stop acting foolish." But maybe that's the point. To her, silly is fun. Foolish is a good thing, because it makes the adults in her life laugh.
Where is the harm in playing? What is to be negatively impacted if one is walking around with a bucket on one's head when one is harming no one, or disrupting another? Social norms are, of course, a complicated set of circumstances and rules. But when one is a child, why not?
Evie has put all sorts of objects on her head, and on our heads. She checks out her reflection, and smiles. She poses. She admires herself, wearing a basket on her head. She talks on a stick of cheese as if it was a cellphone. She has conversations with her stuffed animals.
She's two. She hasn't been told that she's being silly, or foolish.
In that, we adults could learn something. Within the social norms, we've, in one way or another, been told to stop playing.
To take the buckets off of our heads.
Stop having pretend conversations through inanimate objects.
That gap between the couch and the end-table is not a secret passage to a mysterious land.
There is no hidden world inside the bookshelf, so stop climbing in it.
Maybe this is why we're so angry with and mean to each other on the Internet. We've been told to stop playing so often in our real lives that out of envy, we want to make sure others don't have the fun we can't have. Because when they do, they don't seem to grasp the gravity of the horrors of reality.
But who says we have to? Why do we have this need to memorize the horrific details of every current event, whether criminal or merely salacious? Why are we not allowed to play?
What happened to our buckets?
Evie has hers (even if it's a cheap vinyl basket). I hope she never loses it.
Woh woh = any four-legged animal, regardless of whether it's a dog or not
Appo = any round red fruit or vegetable, though color is sometimes optional
Up down = pick me up or lift me higher
Thit thit thit thit = Lucy, sit, before Dad puts your food bowl down (she's heard me tell Lucy to sit in this situation)
Sesedo = Super Grover
Sti = veggie stick
Sheee = cheese
Henry
*headbonk* = I love you
AI!!! = See you later, I love you
*grab hand, drag to spot in basement, squat down, pat floor* = Please lay out this quilt, then lie down on it so that I can lie on the floor next to you and play with my plastic ball.
*wave off with hand as someone approaches him standing at his basketball* net, then look toward the person he wants to play with him* = No, I want Dad to play basketball with me.
Henry has more pantomimes and physical actions to indicate what he wants.
A while after we got the official diagnosis for Henry's FXS, and we had to explain not just his behaviors, but delays in progress to the layperson, I started harboring thoughts in the back of my mind that I sometimes wished that Henry would just be officially diagnosed with autism, just so I could stop having to explain what FXS is, how it works, and what it means.
We had a consultation with a neurologist to look into Henry's sleep patterns, and while I won't get into the utterly ridiculous suggestions this doctor had to "resolve" Henry's sleep issues, part of the paperwork involved exactly what I wrote above in the first paragraph.
A review/examination to determine if Henry is on the ASD spectrum.
I think it's a foregone conclusion, actually. Since ASD is such a broad-ranging condition, no one person with ASD can be effectively compared to anyone else with ASD and expect to see similar results. Henry doesn't necessarily exhibit the "typical" characteristics of an autistic person, but that's because there's really nothing "typical" about autism.
What a lot of people may think when they hear "autistic" is Dustin Hoffman's Rainman. That's not a typical representation. Not every person with autism looks forward to fish sticks and Judge Wapner.
We hear qualifiers like "high functioning." That's pretty much a rationalization to say that a person with autism isn't nearly as Rainman-like, which may make those who are unfamiliar with this world a bit uncomfortable. It's a way to reason a degree of "normal" when such "normal" is not an option. It's how to determine how close to "normal" the person with autism is, so that it's not as uncomfortable to deal with.
To note: this is not meant as a criticism; I understand that the world of special-needs kids and adults can be rather scary to the general public, because it's a world of unfamiliarity. As a parallel illustration, while Lori has familiarity with Japanese culture, it was a complete world-turner when we all went to Japan a few years ago and experienced the train station at rush hour. Even going to the Outback Steakhouse that was down the street from our hotel and sitting at the bar to have a few beers was just slightly different than what we would experience here in the US.
Nevertheless, there is a recommendation to determine officially if Henry is on the spectrum. This, to me, is a mere formality and confirmation that Henry is indeed autistic. Of course, that also means that I have to work out how to describe it -- is he autistic, as a characteristic in the vein of being tall or half-Asian? Does he have autism, akin to having brown hair?
At the end of the day, I think that's something I'll have to work out later. But for now, it's just one step closer to pretty much having that one word to describe him without having to spend any additional sigh-filled effort in explaining the ins and outs of FXS.
While I do explain FXS whenever I can and at every opportunity, I read my audience and most times, I see that glazing of eyes when the attention is slipping and I'm about to lose them. Those are the times when I'd wished I could just say "he has autism," and be done with it, because despite the controversies surrounding Autism Speaks, it has at least put autism closer to the forefront of the social consciousness such that people understand that even if they don't know what it means to be autistic, it's at least something they've heard of to understand that when we say our child has autism, or that they see that we're sporting that colored-puzzle-piece merchandise, they understand that we have a long and hard road ahead of us, even if they don't know what it'll be like.
(and that was a hell of a run-on sentence, if I do say so myself)
Point is this: people have heard of autism and as such, can display more sensitivity and tolerance toward our children's behavior. I don't have to explain what it is, which can get exhausting (and thus making me feel like a terrible FXS advocate as a feedback loop). I had wished for a DX of autism just so I could stop explaining all that Henry is.
It appears I may be getting this wish.
Of course, just because it's on paper doesn't mean that my son is any different. The diagnosis doesn't change who he is or what he does. He's still that same goof who wants to be tickled until he collapses; who tries to walk from the car whenever we got to the store, but starts to get nervous when we enter the store until he feels secure in a cart; who loves Aldi's veggie sticks; who has incredible hand-eye coordination to be able to track a rolling ball no matter how big or small it is.
What it would do, though, is give us an out. Which was what I'd wished for earlier. And now that it's becoming a likely reality, I'm having second thoughts. Doubts. I don't think I want to let the explanation go with just "he's autistic."
I think he and the FXS community deserve more than just me blowing it off because it's inconvenient for me.
At almost 2, Evie's vocabulary continues to grow slowly. She happily babbles to herself in what sounds like words she's making up, even if they make no sense to adults. There are variations in intonation, enunciation, and definite repeated sounds that might as well be words, even if we don't know what they mean. She also has a few adult-perceptible words, like "appo," "shee," "awdun," and "whoa whoa."
(Apple, cheese, all done, and animals that might as well all be dogs)
I see also that her patience is sometimes a hindrance to using words. She's lately dropped the "awdun," because she just wants out, dammit. She's said "up" on a few occasions, but she insists more with just arms raised. And she's learned how to throw a fit when she doesn't get what she wants or is told "no."
I want to hear what's going on Henry's head.
When the bus got home yesterday, I went down the driveway to pick him up. I saw his face peeking out of the window of his seat, split into his wide, toothy grin where his eyes just disappear into slits. The bus aide helped him to the stairs, and he squealed with glee. As soon as he was in my arms, he leaned in for a head bonk (it's what we do). He didn't even give me a chance to say good-bye to the driver or the aide.
As we made our way up the driveway, I put him down so he could walk the rest of the way. He excitedly scampered toward the door, and waited with barely restrained happiness for me to open it. He clambered up the steps with his hand in mine, and announced his return with his usual "AHHH!!" He ran to the living room to play with his toys, shoes still on, and barely an acknowledgement of Mom or Obaa-chan.
Later, when my mother was gearing up to take the kids for their afternoon walk, she got the brand new double-stroller we got unfolded, and we saw Henry's face in the window of the screen door. With his face-splitting grin, he began excitedly hopping up and down.
Henry was the embodiment of pure joy at that moment.
Once seated and belted in, he was just babbling with happiness. But unlike Evie's babbling, Henry's babbling is just noise and syllables, no real discernible words or word-like sounds.
I want so desperately to listen to what's going on in his head and understand it.
This played out later on at dinner when he was upset. But upset about what, we don't know. He was clearly frustrated that we weren't clued in on what he wanted, which then turned into a negative feedback loop. He got more upset that we couldn't fix the problem, but we didn't know what the problem was, so he kept getting more upset, which then made us frustrated and helpless.
We want so desperately to hear what's in his head.
I know he loves us and knows we're his safety net. His teachers and even bus driver say that he says "mama" as an actual word rather than as a noise, and that it seems like a typical emotional safety blanket that kids this age use. They asked Lori if she ever gets sick of hearing it.
I imagine that Lori's heart broke a little at that moment, because we don't hear it at home at all. They were surprised by that. What we hear is the nonsensical "mamamamamamamamamamama," which is more like lip or mouth exercise than actual intent to say "mama." The only time Lori heard Henry say "mama" and mean it was when it was in absolute terror during the failed sleep study, when he was screaming and shrieking to be saved.
We want to hear what is in Henry's head because this means that he's assimilating what he's hearing. It's just not coming back out after processing.
I'm going to take a detour for a moment, but it's in the context of an analogy as only my geek-nerd self could do in order to make a point.
In the core of a star, the chemical and physical processes result in photons. Those photons are what result in what we call "light." Light is mathematically and theoretically (in a scientific sense) composed of photons (which makes the whole idea of a "photon torpedo" from Star Trek a little silly at first glance...what are we going to do, shine flashlights at the Klingon fleet?! I digress.....). A photon is calculated to take about a million years or so following its generation in the core of the star to escape to the surface, which then takes about 8 minutes to travel to Earth in the form of visible light.
The reason it takes so long for a single photon to escape the interior of a star is because of the utter chaos of physics that occurs in a star. Energy and gravity play havoc on the path of that photon, so it gets bounced around in its journey within that star. And considering the mind-numbingly insane sheer size of a star, even one as small as our own yellow sun (yes, it's a smaller one, on a cosmic scale), can make the journey of a single photon a really long one.
This is how I imagine language to be in Henry's head. He has some words and others are developing. We know this because he understands more than what he speaks. He comprehends. Not just tone of voice, but the actual words. He can differentiate meanings even in different languages (English and Japanese). It's just that they're not returned outward from within his own stellar core...or at the very least, they're on a very long journey.
I just hope I don't have to wait a million years and eight minutes to hear them. I want to know what's going on in my boy's head, because I imagine he's got a lot of interesting things to say....if only he could.
Henry's situation has set the bar of expectations rather low for Evie, which I've mentioned before as being both a good and bad thing in my other posts. So the fact that she's pointing at objects and clearly having conversations that only make sense to her rather than just meaningless babbling noises is significant, but also new territory.
While the words and sounds she's using are meaningless to us, they clearly have some sort of definition and structure in her mind because of how specifically she's using them. So in other words, she's learning to speak as a typical child.
Our hearts are swelling at this prospect.
She has a few words and phrases now, and it began a while ago with her learning how to sign "more," and use it properly in context. She uses that one interchangeably between "more" and "again," but I suppose the intent is still the same.
When she hears "peekaboo," she responds with "I see...."
When she sees (and wants) either an apple or tomato, she says "appo" (she doesn't actually want to eat it. She just wants to play with one, which makes me fearful of one day walking into a room covered in squashed tomatoes).
Occasionally, when she wants out of the high chair or bathtub, she says "awdun."
And the one that kills us is one that I just managed to interpret, although she's been saying it for at least a week. She would say something that sounded like "see whoa whoa." We only caught the "see" part, so we figured it was just her exploring various ways to say "I see it."
No, she's actually referring to dogs. And here's how I made that connection.
I just happened to notice coincidentally that she was including the "whoa whoa" consistently after "see," but not all the time. So then I was curious as to what the difference was, and then it became clear.
Lucy.
Lucy was the common connection. Which also explains why she would say "see whoa whoa" when my mother would take the kids out for walks and they pass by the house that owns a boxer who constantly runs up and down the fence, barking.
Evie is associating Lucy (the "see" part) with barking ("whoa whoa"), because that's all Lucy ever does.
"See whoa whoa" is Evie's word for dogs, because of Lucy.
Henry was taken to see a neurologist a while ago in the hopes of figuring out why he's so awful at sleeping, whether it's in going to sleep or staying asleep. Right now, we dose him with melatonin so that he'll fall asleep within a half-hour; before the melatonin, it was a nightly battle of 1½ to 2 hours to get him settled down enough to fall asleep.
Every. Night.
The reason: he was just hyper and could not calm down. We got a suggestion from our FX support group members that a common manifestation for kids with FXS is a non-stop production of cortisol, which puts them physically in a constant fight-or-flight mode. To combat that, we were given the suggestion of giving him melatonin supplements to counteract the overproduction of cortisol.
The first night we gave it to him was a miracle. He went to sleep within a half hour, and we haven't looked back since. A bottle of melatonin liquid is a staple now, and we've come dangerously close to running out a few times. That meant dropping everything and going to buy more, because, like beer, we shall not run out!
The neurologist was unable to examine him because, well, as anyone who knows Henry knows, he is not comfortable around strangers. And it's magnified when he's in a medical facility, because as far as he's concerned, only Bad Things have happened at medical facilities. The neurologist recommended we submit him to a sleep study through Children's Hospital.
Okay, fine.
Tonight was his appointment, and tonight was the night when the inner beast was unleashed.
Since I had class tonight, Lori was to take him in just before bedtime and spend the night in the observation lab. Henry apparently went Incredible Hulk. Because what the neurologist failed to tell us was that the study required all kinds of sensors and wires to be stuck on, around, and even in him (up his nose).
Just hearing that, I could tell you that it was not going to happen. He reacts to hair cuts like we're killing him. It took all of my strength and dexterity to restrain him for a mere hair cut. And yes, I had to restrain him.
Unfortunately, Lori took the brunt of Henry's explosion. Scratches, bites, punches, and even a fistful of hair ripped out. Lori said that she had never seen an expression of contorted terror on Henry's face like that before, or the kind of back arching and physical contortions he was in to try to get away.
Then the tech offered to try again.
Needless to say, they came home. I knew something was wrong when I saw Lori's car in the garage when I pulled into the driveway coming home from class. She had just gotten Henry to sleep -- calmly and in his own bed -- when I came in the house.
So the moral of this story is this.
To all of my friends who are in the medical field and those studying to go into the medical field, please remember your street smarts on top of the book smarts. Don't treat kids with special needs like a by-the-book numbers game, because unfortunately, we've run into more doctors and nurses ill-equipped to handle special-needs kids than we could have reasonably expected.
I mean, isn't it a thing in one of their classes or something? If not, shouldn't it be? Even if it's just a 10-minute Powerpoint titled "Don't Treat Parents of Special Needs Kids Like Morons Who Don't Know What They're Talking About, They Know Their Kid Better Than We Will?"
Slide 1: should you treat your special-needs patient's parents like uneducated fools?
Slide 2: no.
End of presentation
The neurologist was so entrenched in book knowledge that she apparently had no ability to extrapolate or think beyond the procedure. I get that there are liability issues, but come on. If the kid wasn't going to let you near him, let alone touch him, why would you think that hooking him up to what amounted to a transmission flush machine would be successful?
In the past, when Henry got another ear infection, we went to an urgent care clinic and I told the attending physician what his Dx was to be, and what needed to be prescribed. With the way I presented the information to him, he asked if I was a doctor.
No, I'm a parent who is also a troubleshooter by profession so I know how to present the data of a problem in order to seek resolution. Whether it's a computer or a human body, the technique is the same. Ask the right questions, think analytically, think critically.
On top of the ENT doctor who got annoyed that Henry was terrified of him, the med-student kids who asked inane and irrelevant questions of us while Henry was coming down with bronchial pneumonia, and the pediatric surgeon who decided to hold class for his med student kids in our room while Henry was trying to sleep, please, please, please remember that your patients are people, not chapters in a book.
And just because you may have seen countless similar cases in the 20, 30, 40 years you've done this, not all cases will have the same outcomes. Don't get lazy.
Henry's first day of school was today. A special school, of course, given his diagnosis. I learned quickly what the letters SCI and SXI meant, and am rather thankful that Henry's condition is only SCI.
SCI: severe cognitive impairment
SXI: severe multiple impairments (which includes physical)
Henry was, of course, unhappy at the beginning of the day, but his teacher called home to give an update on how he was doing. After he saw the playground equipment outside, he apparently calmed down, and then started playing with all the balls available in the room, as well as the lighted musical toys. He ate all of his lunch and even drank from a sippy cup (and if you've been following along in Henry's development path, that in and of itself is huge).
Lori, however, was a wreck this weekend :)
And why shouldn't she have been? Her baby boy was leaving home by himself, without either of us. Strangers were taking him away and managing him all day. I think this is a very reasonable worry, even if it is drawn more from emotion than reason.
Because in matters of parent-child relationships, reason sometimes flies out of the window and sails away on the updrafts of remembering their newborn photos. Hell, Evie is -- currently -- totally Daddy's Girl, so much so that when Lori and I were standing in the middle of the living room, my arm around her to comfort her in preparation for today, Evie came up to us and pushed Lori away so that she could raise her arms to be picked up by me.
Which, as many of my female friends will giggle over (as well as my male friends who have daughters), was totally expected!
Anyway, Henry has reached this new milestone. This was the first day of a journey that will last a likely 23 more years. I have no idea how he'll grow, how he'll evolve, and what he'll learn, but I'm betting that he'll grow, evolve, and learn a lot. Despite our own relative intelligence and wisdom as smart people, we are not trained in the arts of educating special-needs children. For this, we need the experts and specialists.
To bookend that, I myself am getting closer to the end of my education. Or at least, these immediately obvious traffic stops. After tonight's (mind-numbing) class, I'm 3 away from completing the first half of the last semester of my undergraduate career. After next week, Summer Session I will be done. A week after that, Summer II begins with my final class as an undergraduate.
In August, I will be done.
I began my college efforts in the fall of 1991, as a dutiful high school graduate. My first semester was excellent. My second semester, though, as an arrogant 18/19-year-old was not so excellent (in fact, it was downright miserable, and I only passed one class by 0.1 over the bare minimum; I think my professor took pity on me for at least making the effort to submit make-up work after not even showing up for the majority of that semester).
I'll be concluding my 4-year university program after a total of 24 years of trying.
Henry will have two weeks of school to begin, then with about two weeks off. After that, he'll slowly be ramping up into the traditional fall schedule. By then, I'll have completed my bachelor's degree and begun my master's program.
(and yes, the Star Wars reference has crossed my mind more than once; let's not dwell on it too long, okay?)
I'm not sure how I'll leverage my education with my experience, but given both of those, plus what Henry (and maybe Evie) will be experiencing, I'm wondering if I should look for opportunities to incorporate technology and training in the special education world. If I can somehow do that where I currently work, that'd be the best of all worlds.
Not sure how that degree of specialization would be sustainable but I guess I'll find out, right? :)
But even today, as Lori and I greeted the bus when it pulled up to our house to drop off our baby boy after his first day of school, I wonder what kind of journey is ahead of him and what he'll experience. As hard as it is to hand off our kid to someone else, at the same time, I'm really hoping that the social aspect will be beneficial.
Henry's 3rd birthday is next weekend, and we're not planning a birthday party for him. The chief reason: he doesn't have any friends to invite. He doesn't know anybody. That realization hit me hard last week. Even if we threw a party, it wouldn't be for him. It'd probably be more for us, with our adult friends (not that that's a bad thing, but I still have to pretend that I'm a good father and think about Henry here ;) ).
As Henry takes these first steps into the next phase of childhood, we have to end our phase of Henry being our home-bound infant/toddler. He needs this growth opportunity, and we can't hold him back. And similarly, we need this growth opportunity, so that we grow as parents. As I alluded in my last post, it's still a question, given his situation, of how much space do/can we give, and how much sheltering/support do we give. That's a dilemma we have to resolve ourselves.
We don't know where/when that journey of his will lead. Just as I never expected my college career to last longer than many of my classmates have been alive.
