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!

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! :)

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.

"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....

The Kids' Words

Evie:

• Naan, choo, swee, DOOHHH! = one, two, three, GO!
• Ee efchee ay chai chi = E F G, H I J
• 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.  

* By "basketball," I mean this thing:

Confirmation, Maybe?

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.

The Voice Inside

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.

Street Smarts

A short one.

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.

One Beginning, One End (Sorta')

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.

Too High or Too Low

The kids are both pretty dang awesome.  Both of them just thrill me to no end, despite how exhausting it is to keep up with them and also maintain adult responsibilities.  Henry is clearly the sensitive one while Evie is the adventurous one.  She has no qualms or fears about just exploring everything in sight, whether we want her in these crevices between furniture or not.  Henry is content to play and explore the objects around him and how they work.

She's going to be the "play in the dirt" kid

Evie would be pleased as punch to destroy them.

With Henry, we were rather spoiled (special needs aside).  He slept through the night early on (though that stopped recently), he was content to lie around or sit around in one place and contemplate the universe.  Of course, part of that was due to his physical limitations that didn't start resolving until about January/February of last year when he slowly grew strong enough to be able to stand then walk on his own.  But despite that, he seemed to be satisfied just playing in one place.

Evie cannot be stopped.  Her phases of rolling, belly crawling, then full crawling, then walking took barely just over a year whereas Henry was about 19 months old when he was able to walk with confidence.  Evie learned on her own how to get up and down stairs.  If Henry is quiet, it's okay -- that meant he was playing by himself, which was a brief and rare respite.

If Evie is quiet, it's cause for worry.

So when it comes to developmental milestones, we are unprepared for Evie.  For most of them, she's not only meeting them but surpassing some.  The only one she hasn't hit yet is speech, but we'll tackle that one later.  The point is that because Henry was and is so behind in many of his milestones, we just didn't know what it was like to have a more typical child.

For the average family, think of it this way.  Your first child is growing and developing as expected.  Speech, behavior, physical and cognitive abilities are all on track.  You get used to it, so when he's 5, you have your second child.  Then that second child turns out to be a second-coming of Mozart.  At 3 years old, she's composing sonatas and then investigating methods of safe-cracking (on the Internet while using a proxy so that the NSA can't track her), all with the self-control, restraint, and social development of a toddler.

Because of the difficulties we faced and will face with Henry's growth and development, and with his diagnosis, there was that requisite period of despondency and quite frankly, mourning.  The reality is that we mourned what might never be with him.  We lived in denial for a while, but eventually, we had to come to terms with the fact that Henry will never be "normal."

I even hate typing that, but that's what it is.

We're terrified about matters of succession; if something happens to us, who can take care of him?  We don't know.  He may surprise us later in life, but we can't rely on that.  We've come to terms with the fact that it's not realistic or reasonable that he'll study astronomy at the University of Hawaii straight out of high school.

In fact, we're not even confident he'd go to a traditional high school at all.

If he can one day go grocery shopping on his own as an adult, we would be over the moon.  That's the level of hope that we've had to adjust to.

But with Evie, because of her developmental track, we're cautiously optimistic that she'll be the one who's going to be more okay with life than Henry.  I'm sure she'll still have her issues, but we're less worried about her future than Henry's.

And that brings me to the point of the title of this post.  Because of the crushing defeat we felt with Henry's diagnosis, we're guarded and actually somewhat pessimistic about Evie's potential as a defense mechanism.  We don't want to let ourselves get too far ahead in terms of Evie's future lest those hopes get dashed even harder against the rocks.  And that can't be a good thing.

We end up being cautious not to expect too much of Evie despite our emotions, but at the same time, we have to be careful not to expect too little of Henry, because that's not fair to him.

But it's a hard balance to strike when you're caught in the middle of uncharted territory like this.

Neither of the kids are very physically affectionate in a traditional sense.  They don't cuddle, they don't come up for hugs, or just absently hold hands.  Both of them have tactile defensiveness, which means they don't like being touched in certain ways.  Their hands are particularly bad such that trimming nails is not just an ordeal but if someone stood on the driveway outside our side door and listened, they'd wonder if we were torturing and beating them for as much as they protest (Henry more than Evie; Henry screams and thrashes while Evie merely yells and cries...."merely," he says).

But recently, Henry has come up to me and asked to be picked up (in his own non-verbal way, of course).  And when I do, he simply melts.  He lays his face down on my shoulder and absently twirls my hair around his fingers.  And of course, my heart explodes.  I don't care if I'm already 10 minutes late in leaving for work.  I'll take that for as long as I can.  Evie smiles at me when I come home from work and greets me in her own unique series of grunts, babbles, and noises.

I know they love us, in their unique ways.  So admittedly, they're both surprising us in their development.

With their play, their interactions with us and lately with each other, I'm seeing two children who are growing on their own individual paths that are intertwined with us and each other.  Maybe not necessarily to the expectations of the rest of the world, though.  And while it's cliche to say that doesn't matter, sometimes it's hard because we're still a part of the world and we do have to interact with it.

We do have to answer questions about them and other people want to interact with these kids.  Other kids want to play with them, and sometimes don't understand why they're not talking or playing in a way that's expected of them.  In that, I worry less about Evie's ability to cope and I'm probably a little over-protective of Henry.

But again lies the danger of expecting too much of Evie while expecting too little of Henry.

And then I wonder if I'm overdoing that.  In my desire to protect them from the cruelties of the world -- especially toward anyone different, toward anyone with the label "special needs" -- am I instead doing them a disservice?  This is a rhetorical question, because that's part of my homework assignment as a father.  I need to figure out not only what they need, but what my responsibilities are.

So just as kids don't come with instruction manuals for parents, there's at least some kind of Ikea-like diagrammatic guide for neuro-typical kids.  What we have for special needs kids is an instruction manual for assembling a Whirlpool refrigerator that was included in the package for a suspension system for a Ford F-150, written backwards with French words using the Greek alphabet.

Yet somehow, this suspension system is somehow keeping our beer and hamburger patties cold.  And we don't know why or how, but we'll take it.

How much room to fly do I give Evie?  How much of a cushion do I provide Henry?  Or do I reverse that?  How much of a cushion do I provide Evie and how much room do I give Henry to fly?

Or how much room do I give both of them to fly?  And what do I do with myself when/if they keep flying?  Should that "if" have even been in that sentence, and if not, how can I make myself comfortable without it?

I got this iPad for Evie because she showed an aptitude for technological devices. Yet Henry's the one who surprised me with his interest and ability with it.

Developmental Delays

The funny thing about the term "developmental delays" is the connotation that it invokes in people's minds.  Admittedly, it does the same to me, too, even though I know it's not accurate.  But the image is that it's an across-the-board assessment of a person's position on a sort of timeline of expected development.  For instance, if a child who is 2 years old is developmentally delayed and assessed at about the 6-month mark, the assumption is that the 6-month development milestone applies broadly to all aspects of development.

But of course, that's not true.

Developmental milestones run the gamut of development.  Even in the broad term of "cognitive" or "intellectual," it only means that in general, the patient is approximately at whatever level that was determined.  It doesn't mean that it applies to all things across the board, while those of us who don't have developmental delays are expected to be at our age-appropriate stages.

Henry is, of course, behind on a lot of things.  The easiest way that I describe it to others is that he's a 2½-year-old in a 4-year-old's body with the mind of a 1-year-old.  It's far too simplistic, of course, but given that it's tough to get engagement in casual conversation with people who aren't invested in his well-being to actually give a damn, that's about the extent of the conversation before it treads into an area of discomfort.

It's the easy way to set the stage without forcing someone who isn't ready to deal with this to deal with it.

However, I know in my own head and with my own experience with Henry that such a blanket statement doesn't actually apply to him.  I know he's capable of more and he's shown it.  He's shown a lot of advanced abilities to us, but not to those at MISD who are doing his assessments, so his paperwork says one thing, but we know he's beyond that in certain areas.

He doesn't speak in words, but he does speak....to us.   Even though we don't know all of his grunts and vocalizations, we do a reasonably decent job in deciphering what he wants to say, because Henry-speak is a combination of his babbles and body language.  We know he's capable of more, and that becomes evident in some of his play.

I don't remember exactly when we started doing this, but Henry has a plastic cereal bowl that he likes to play with in the kitchen.  He's never actually eaten cereal out of it.  It's not a utensil.  It's a toy.  He and I throw and slide things across the floor to each other, like a game of "catch."  This bowl was one of them.  What I don't remember is when I started rolling this bowl on its side to him, and he fell in love with that.

(normally, we're both better at this than what the video shows)

What's significant is that, barely two or three times after I rolled it on its side to him, he started trying to do the same.  And he's actually pretty good at it, despite his age, coordination, and difficult lot in life.  Maybe there is something to certain talents that kids who are on the autism spectrum have that belie their other difficulties (not saying that Henry is on the spectrum, but just using it as illustration).

But this is just one example of the things that Henry is actually very good at.  Things that therapists and teachers at school don't always see, and things that our pediatrician's office definitely doesn't see (because they are so unprepared and almost kind of unwilling to deal with special-needs kids, it seems -- the only doctors at that office who were prepared for this and even embraced it have left the practice, of course).  Also included in the differences between what they see and what we see is also a bit of shrewd calculation in Henry.

What may come across as inability or incomprehension to perform a task, we can actually sometimes see it as apathy or preference.  In other words, is there a chance that, when he doesn't perform a task, it's just that he doesn't want to versus unable to?  We can see it in his body language and in how he behaves at home.

So the term "developmental delay," while it's applicable in a general sense to categorize a person, it certainly doesn't tell the whole story.

It Begins

I haven't posted much recently, because there hasn't been anything major in the development of the kids beyond what we've posted on Facebook.  Most of it has been Evie growing from infant to toddler, and Henry....well, Henry's development is as kinda' expected.  He does still surprise us with what he perceives and understands, but in other ways, he's still very much delayed.

Since the last write-ups, Evie has learned to pull herself up with support, then walk, then squat to reach an object on the floor, then stand up without support.  She knows her brother's name, because at her school/therapy sessions, when another boy named "Henry" is mentioned, she looks for him.  Her PT has mentioned that, because she's now on track for typical development, she is growing out of MISD's PT services.

Henry is getting taller and taller.  When we take him to public play areas, it's simultaneously confounding and heartbreaking.  For one, there are kids older than him but obviously smaller.  Which means that they think he's an older boy.  On the other hand, his intellectual disability means that these kids who think he's older can't comprehend why Henry isn't engaging with them like they think he should.

And how do you explain an intellectual disability to a 3 or 4-year-old?

Recently, we were supposed to have a meeting with MISD to discuss Henry's future after a psych evaluation.  But of course, in the comedy of errors, we and Henry's teacher and support staff are frustrated by bureaucracy.  The psychologist who evaluated Henry a few months ago hasn't completed the psych report because she got distracted by personal matters and even Henry's teacher hasn't been successful in trying to get a response from her.

We were supposed to meet with a representative from Utica Community Schools, but that got cancelled due to the recent cold-weather closures, and when that meeting was rescheduled, UCS never showed up.  Although, really, UCS has little motivation to participate because I believe the purpose of this meeting with UCS is to get their sign-off to release Henry as a student head-count to MISD.  This means that even though we live in the UCS district, they wouldn't be receiving the per-pupil foundation allowance from the state for him.

What we could get as far as information from his evaluation was that he's categorized in a broad sense as being around the 6 month mark in intellectual development.  As such, we have an idea of what his future holds.

I'd be lying if I said that I was totally okay with this.

Now, don't get me wrong.  We will do everything necessary to put this boy up in as comfortable a life as we can give him.  Because, holy crap, have y'all seen this kid smile in pure and unrestrained joy?  I love this kid with every ounce of my being.  I shudder for the day when he strikes out on his own, and the people around him look at him and treat him like.....yes, a "retard."

That hurts me, knowing that I can't protect him for the rest of his life.

Those of you who know Henry, who've known him since birth, who know us, know that the R-word is a terrible word because you now know someone else to whom it's being applied by an ignorant society.  We could argue semantics all day about the connotations and denotations of the word "retard" (REE-tard vs. re-TARD) and its context (we had this discussion already on FB), but for the sake of argument, just follow me along this train of thought and believe me when I say that it's not being used in its clinical context but rather in its vernacular form.

Therefore, in that context, please understand and abide by our wishes to stop using that word, at the very least in our presence.  And if you can, strike it from your own vocabulary and put it in the same bin you hopefully put "nigger" and "fag."

Lori had an experience recently when she took Henry to Burger King to play in the play area, just to blow off some steam.  Another boy was there, one smaller than Henry but older (and neuro-typical).  The other boy expressed frustration to Lori that Henry wasn't engaging in play the way he was expected to, and what's she to do?  She doesn't know this kid, and it's none of his or his completely disengaged mother's business to understand the ramifications of genetic issues, neurological disabilities, and cognitive/intellectual disorders.

All this kid knows is that Henry isn't playing the way he wanted Henry to play.  And Henry didn't really care or engage that much anyway.

In the special-ed circles, Henry is officially SCI.  For the layperson, that stands for "severe cognitive impairment."  This means that our 2½ year old son has the mental capacity and capability of pretty much an infant (for now).  We don't know what his development path will be, when he will achieve milestones, how he will behave in the future, none of it.

He may very well be another version of that young woman who was roughed up by Livonia police at Walmart.

Which also makes the well-meaning but ultimately empty assurances from others that "it'll be okay, kids will grow out of it" that much more hollow and actually a bit hurtful, because no, no it won't.  Henry will be going to a special school in MISD's system for special needs kids, and the age range of students there is 3 to 26.

Let that sink in for a moment.

26.

That's the boundary for government aid for schools to take care of kids with disabilities.  Henry will be going to this school for the next twenty three years.

Saying that "they'll grow out of it" just feels dismissive because it comes from a perspective that just cannot be fathomed by those who've never gone through this, people who just don't know.  Who will not have to go through this.  We who have children may joke that our kids won't leave our households until they're in their 30s.

We are living that possible reality.

By the time Henry outgrows the school, I'll be in my mid-60s.  I intend to be physically vital well into my 80s.  But good intentions can't mitigate reality.  And that reality includes the possibility that Henry will be relegated to an assisted-living facility for the rest of his life, or that I'll get taken down by something I can't predict or prevent.

And then there are the costs of such care.  I have to think of financial ramifications that "normal" families don't have to consider.  I occasionally have conversations with folks who don't have special-needs children, and the most common reaction I've gotten has been surprise and a little bit of guilt because I have to think of things they don't, and didn't realize were so significant.

So I hope you can understand why it's a bit irritating to hear "oh, it'll be okay, it'll work out."

All of these are, of course, those emotionally-charged thoughts that tumble around my head when I'm by myself.  Usually on the highway driving to and from work.  They're irrational, I know.  But I need these moments to lash out and blow off steam even if it's inside my own head, just to clear the air so that I can approach what needs to be done with clearer purpose and forethought.

I've spent the majority of this post talking about Henry.  But what about Evie?

So far, Evie is on track in development.....except in speech and vocalization.  Now, one could say "don't worry about it, it'll come in due time."  But how much of that is denial?  She has the same genetic condition Henry does.  And while Fragile X affects girls differently than boys, it doesn't mean that there's no effect.

I'm not sure how much of her responsiveness is due to her condition or just the fact that she's a bit more headstrong than Henry.  I don't know if she's just ignoring me or if she's not processing communication.  I lived with that denial with Henry at around the same age, so now I'm worrying whether I'm overreacting with Evie as a result of having gone through this with Henry.

For her therapy sessions, though, she's going to be moved to the group environment pretty soon.  She doesn't have much opportunity to play with other kids so this is a better chance in a controlled situation, rather than the indoor play area at Lakeside Mall.

Evie impresses us every day.  Her physical ability, her reasoning, and her curiosity are all things that we're just not used to, because Henry never did these things at the same age.  He still doesn't go down stairs by himself (although he's getting better at it as long as one of us is holding his hand).  We can't stop Evie, short of physically picking her up.

I bought them a wind-up lobster as a tub toy, and when it runs out, Evie will pick it and give it to us so that we can wind it up again.  If we don't respond right away, she grabs our hand, puts the lobster in it, then looks at us expectantly.

She plays independently, and she's the one where, if it's quiet, we have to worry.  If Henry was quiet, that was a relief, a brief reprieve in an otherwise whirlwind of nonstop activity -- because it's Henry.  Evie, on the other hand, is probably in the middle of destroying something.

And that makes my heart fill with happiness.

I do also catch myself feeling a bit guilty because I have to worry about Evie less than I do about Henry.  So then comes the question of equity -- with Henry's needs, am I worrying about him more at Evie's expense?  Am I inadvertently ignoring her because Henry requires more attention?  Or do I shower Evie with attention as compensation and if I do, am I ignoring Henry?

I know these questions affect all parents of multiple children regardless of any special needs or conditions, so I'm not looking for answers here.  Just more rhetorical statements than anything else.

But they are the ones that tumble through my head, the things I don't talk about at the bar.

Language Comprehension

Henry is, as we've likely mentioned before and elsewhere, non-verbal.  This means that despite his age, he hasn't spoken an intelligible word.  I idly wondered how to characterize this or describe it in another way so that it's more comprehensible to the uninitiated.  We've said before that Henry may be non-verbal, but he's not non-communicative.  Most times, he finds a way to get his message across.

We also know that he comprehends certain words -- he knows "dinner" and "bath" in both English and Japanese.  He knows "bedtime," and hates it.  He knows what I mean when I say "let's change your butt" (diaper change).

He'll pantomime what he wants and he also knows who will play certain games or do certain activities.  I'll play basketball with him on his little basketball toy, Mom plays "showerball" and "basementball" with him.  Lori is his comfort zone.  He also knows not to go to Lori with the Japanese books :)

What this reminds me of is akin to an average person being in a foreign land and hearing a foreign language around us without any interpreter or guide or even lessons from high school to fall back on.  I have enough of a background in Spanish to where I could likely make my way in Spanish-speaking countries.  I may stumble for a little while, but I'll eventually pick up on it.

But suppose I was in Finland (and forget for a moment that Finnish people speak English well enough and are accommodating to non-Finns).  I've heard songs in Finnish, I've heard Finnish people speak.  There is, to me, no discernibly familiar verbiage upon which I can even base an understanding.  It's all a bunch of gibberish to me.

Now let's say I'm part of a Finnish family.  I don't speak Finnish, they don't speak English.  How do I communicate with them?  How do they communicate with me?

We'd have to resort to pantomime, right?  I would need to physically indicate something and work through the communication in that way, and maybe if I did say a few words here and there, they'd sound like just meaningless noises to my Finnish family.  And vice-versa,  But if I began associating a certain sound to an action, they would start to understand what I'm trying to convey.  Likewise, if they started saying one particular word -- for example, one that sounds to my ears as "pie-vuh-linen" ("pie" as in apple, "linen" as in fabric) -- and then serving me a meal in the evening, I'd soon associate "päivällinen" with "dinner."

But those heavy-metal umlauts make it difficult to pronounce, so it's going to take me a while to pronounce it correctly.  But in the meantime, if I get hungry, I'll go to the table, sit down, and look to my family with a hopeful expression, hoping that they'll understand that I'm hungry and want to eat.

This is what Henry does.  He grunts his common "ah," goes to the kitchen table, pushes out his highchair, and then looks to the nearest adult with an expectant expression.

He wants to eat.

Or he'll go to the basement door, look at it, then turn around, look up at me, and raise his arms to be picked up.

He wants to go downstairs and have me walk around while carrying him.

But this is still pretty basic stuff, and in reality, my Finnish family and I wouldn't have too much trouble coming to an eventual understanding about these basic needs like food, shelter, clothing, and sleep.  It's because we have these life experiences.

However, our 2½ year old does not.  So let's take this context out further.

Put me in an automotive manufacturing plant.  Again, I don't speak Finnish, they don't speak English, and I don't have an automotive-manufacturing background, so we don't even have common life experiences to draw from.  How do they warn me of danger if I don't even know where to be cautious?  When do I look up?  When do I look down?  Where do I wear a hardhat and where do I not have to?  What are these things hanging from the ceiling that are slowly moving from one point to another?

All I hear around me is Finnish, and specialized Finnish at that (and then to enhance this analogy, add the loud noises and hum of a manufacturing plant that makes hearing difficult even when language barriers aren't an issue).  When the plant manager points at a käytetyt next to the kori on the other side of the plant floor, what exactly is he pointing to?  And what does he want to tell me about it?  Which is he pointing to?  I see a big rectangular thing, a circular thing, some shelves, a window, a big machine with sticks in front of it, a big machine without sticks on it, and a rectangle thing on top of some circular things.

Maybe he's not even trying to tell me anything specific about whatever is over there.  Maybe he's trying to tell them to do something, even if they're on the other side of the building (I have no idea that those things may or may not be able to understand him).

I can see Henry's mind working often.  He may have very basic interests and sometimes a hyper-focus on certain things (we knew this would be a chance of a characteristic) but what I can see from the outside makes me desperate to know what's going on in his mind, what he's thinking.  I'd love to hear his voice make words to explain his world.  But until then, his babble and pantomime will have to suffice.

What is "Normal?"

There are several words that evolve into words that should not be used in polite society.  They may have begun innocuously in use to start but over time, grew to become unacceptable as the values of society evolve.

"Negro" was once a term to describe black people in a neutral manner (which may in and of itself not be entirely accurate, but the origin of the term is beyond the scope of this entry), but became highly charged and is no longer acceptable to use to describe African-Americans.

"Gay" was initially commonly used to mean joy or happiness, then associated with homosexuality, and then negatively to indicate something stupid or ....

"Retarded," which medically means stunted or having not reached its typical (or "normal") potential.  Negatively, it connotes an insult toward people with special needs, and is commonly portrayed as a school-yard insult, used among kids who are still trying to establish their own social pecking order.

These are some of the common examples of words that simply should not be used anymore because of their negative connotations.  However, even words that are typically interpreted as positive can also bear a little backlash of their own.  "Normal" seems to be one of those words.

What is normal?  Generally, it's the definition of the baseline of our environment, an average of sorts.  What is common.  As a baseline, there are elements or data points that can be above or below that line.  A person can have above-average athletic ability, average athletic ability, or below average athletic ability.  That average is defined by the commonly occurring traits within the sample population.  That sample population is whomever the observer chooses.

In most cases, we the observers choose the world around us.

We have ideas of what constitutes "normal," in terms of ability and behavior.  Anything that deviates from those norms become cause for concern or attention.  That concern or attention can either be helpful or harmful, regardless of the intent of the individual.  When it singles out someone as a result of that deviation, shining a spotlight on that person as if on display, that person is subject to more than regular scrutiny.

It can make a person feel different, outside of society, an outcast.  Not normal.  Not average.

Years ago, although political correctness is derided by those who typically display more selfish (or perhaps lazy) behavior by being obstinately resistant to altering their vocabulary, PC speech dictated that we should replace "handicapped" -- with its negative connotation of being inferior -- with "challenged."

"Challenged" indicated that a person was otherwise the same as you or me, but had an additional "challenge" to overcome, like that last field goal attempt or knocking down that 7-10 split in bowling.

However, even though the terminology changed, it didn't change the underlying condition it was meant to describe or that condition's connotation.  "Challenged" was still an indicator of a condition that's commonly seen as a disability or inability, in the grand scheme of things.  "Gay" is a more acceptable term for those of us who are more enlightened, but for those who cannot reconcile that homosexuality is real and deserving of equality, it's still an epithet.

"Challenged" has therefore lost its meaning as a positive alternative to "handicapped" or "disabled."  As an aside, I've even heard the term "differently abled," which even for me is going too far beyond putting positive spins on words and terms, and straight into pandering and patronizing.

So now we come back to "normal."  In the special-needs world, we don't like to call our kids "normal" or "not normal," whether it's in what they do, how they behave, what they comprehend, what they can do or say.  It implies that our children are deficient in some way, which is the same theory behind the R-Word movement.

We use "typical."  It described the situation in more statistical terms, rather than in terms of acceptability.  Going back to the introductory scenes in the movie 300, Spartan children who were found to be deficient in some way were discarded and left to die.  Despite its dramatization, it served as a clear delineation between such warrior cultures and ours.

Henry was not left to die at the bottom of a canyon.  Despite the fact that, and not to mince words anymore, he's not "normal."

Henry is a 2-year-old who is the physical size of a small 4-year-old.  His cognitive abilities, perceptions, and reactions are akin to a 6-12-month-old.  An impolite society might label him retarded, intellectually disabled, mentally handicapped, and so on, as a result of Fragile X Syndrome.

And yes, it did churn my guts to commit all of that to writing, even if it was to make a point.

So to rephrase it, Henry is not a typical kid.  He's in a different place, and he does have special needs as compared to other children his age.  And that variation from typicality is indeed a challenge, not just for him but for us as parents as we try to balance his needs given his physical and intellectual stages with the need to get him out into the world and not just closeted away inside our protective home behind intangible barriers.

We have to pick our battles when talking about our kids to strangers or passing acquaintances.  Most people aren't interested in Henry's development stage, so they may see what they think is a 4-year-old...then wonder why he's still in diapers and doesn't speak.  3- and 4-year-olds at parks and playgrounds want to play with him because he's the same size as they are, but they don't understand that Henry is much younger and doesn't have the social mechanisms in place to comprehend them.  Other parents and grandparents may provide well-meaning advice that simply doesn't apply, and I have to quell the urge to correct them or engage in explanation that would ultimately become uncomfortable for them (and again, picking my battles).

But then there's Evie.

Evie seems to be more on track in her cognitive and intellectual development than Henry was at her age.  When she was about 7 months old, she was already picking up small bits of food in her hands and putting them in her mouth.  Henry didn't start feeding himself until this year -- early this year, in fact. He was about a year and a half old by this point.  We'd actually been worried that because he was so far back in self-feeding, we had panicked paranoid visions of this kid never being able to feed himself (and then he surprised us by starting without any warning or lead-up).

Evie's desire to crawl and the comprehension of the mechanics of crawling is far ahead of Henry's equivalent stage in development.  She's eating solid foods much earlier then Henry did.  We had transitioned Henry to "adult food" fairly recently.  He began crawling on his hands and knees recently.  Evie is already slowly working up the strength and coordination to get onto her knees and support herself with her hands.

In other words, she seems more "normal" than Henry and that's where I find more traps.  First, I have no idea what a "normal" kid is or does.  So I have no frame of reference other than on-line resources and innumerable baby books, pamphlets, and brochures.  Second, I cannot jump too far ahead in assumptions that Evie is "typical," because that can be one foot into the pool of denial.  It can also lead to a tendency to focus more attention on Henry than on Evie because we'll think that Evie needs less of our help.

Words can hurt.  That cliche about sticks and stones is a nice theory and all, taught to children with the goal to toughen up and pick battles rather than getting upset at everything that comes along.  But that's not true.  Words can indeed hurt (and don't even get me started on that "I'm rubber, you're glue" nonsense), especially when used carelessly or without regard for context, environment, and even tolerance of your audience.

I struggle with the word "normal," because its use implies that my children aren't, or that they're deficient in some way.  And maybe in the eyes of society, they are.  Maybe we are fortunate that we don't live in Frank Miller's Sparta.  But for us, this is normal.

It's hard, yes.  But that's what we have, and that's what our baseline is.  It's often reaffirming and comforting because we get so caught up in our own world of special needs, FXS, possibly autism, when we find out that our kids' behavior is actually exhibited by countless other children their age (thus, "normal" or "typical" in a greater perspective).  We feel like we're constantly doing something wrong....but then we find out that every parent feels that way.

This seems to be our "normal."