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.

No More Tears

Evie always, mostly without fail, gets up around 10-11 pm for one of her nighttime feedings.  We'd really love to wean her off of that habit, but it seems that no matter how much she eats for dinner, she will always wake up around 10 or 11, need a changing and a bottle.

Tonight, VH-1 Classic is playing an hour's worth of Ozzy Osbourne videos.  Clearly, this program is targeted at people like us, because it's a Friday night, after 11pm....and we're at home watching Ozzy videos.  Therefore, we're obviously not going out anywhere to exercise what other people may refer to as "a life."

And I'm betting that the programmers at MTV/VH-1 were also thinking "yup, this one's definitely for a diaper change" when selecting the videos to play.

So this was Evie's first experience with Ozzy.  She took down most of her bottle while watching intently the performance video of "Breakin' All the Rules."

(and now I'm listening to Lori muttering about how awful old videos were while I finish up this post)

More Cautious Optimism

Evie is now 10 months old and is bound and determined to walk on her own.  Despite the lack of balance, coordination, core strength....

No, she doesn't care.  She's gonna do it.  And she's gonna get mad when she can't quite get to where she needs to be when she needs to be there, and vertically.

At this same age, Henry was still doing the military crawl across the floor.  His FXS-related lack of tonus made 4-point crawling (hands and knees) difficult and certainly delayed his physical ability to stand.  When he finally did get up on his feet, he was still stumbling while suspended from our hands.  His PT encouraged us to help him walk by holding his hips instead of his hands, so that he'd develop both the physical and mental abilities to balance and coordinate better.  That was hard since that mean that we had to get down closer to the floor and scoot around on our knees.

Evie, however, merely uses our hands for balance.  She's learning how to use objects -- the couch, a table, her father -- to climb up onto her feet.  One day, I watched her calculate how to get from the exer-saucer over to her walker and make the determination that the distance was a bit much for her to reach over, so she instead reached for my face as an intermediary handhold.

Then, after being clawed and raked across the face by her tiny hand, I had to trim her nails.

I know every kid is different, and that we can't just think that because she's a girl and girls statistically are less affected by FXS than boys that everything's just going to be fine.  I can't compare her to Henry because that's unfair to both of them.  But there's still that hope in the back of my head, that maybe she will be okay.

There was, of course, that gut punch from my post in April about her evaluation.  We'd gotten her enrolled in EarlyOn, but apparently, she progressed significantly in physical development over the summer.  At the end of her spring sessions, we were to work on her ability to get from place to place on her own by any means necessary, whether by crawling, cruising, scooting, rolling, etc.

Within the first few weeks, she was on the move, doing the military crawl.  Maybe about a month ago, she started transitioning more toward traditional crawling (something Henry only started doing earlier this year strangely just after his ability to walk kicked in seemingly without warning).  She's transitioning from floor to seated position more frequently and on her own.  We were overjoyed when she started picking up food and eating it on her own, and that she's already started on solid "human" food (some; she still has a bit of texture issue).

It's hard to restrain the hope that she won't have as many developmental issues.

Thank You, Tide

Over the last year or so, a particular commercial would occasionally air.  The commercial is for Tide, and features a father talking about his daughter's favorite princess costume.

So what's different about it?

The fact that the father is not being portrayed as a bumbling, incompetent fool.  That he's not an egregious male stereotype who's giving this "interview" in his converted Man-cave in the garage or basement.  That this is a parent of a child and happens to be capable of performing chores around the house.

This sort of thing has been around forever.  After all, just pick any random sitcom and you see incompetence abound at the home, and pure chaos if Mom isn't around to swoop in and save the day.  In ads for cleaning products, it's generally the wife or mother using it to her satisfaction while Dad's only role is to either mess things up by not knowing how a sponge works, or stand around clueless about what to do with the mustard-and-spaghetti splatter on the wall.

In reaction to an ad campaign that Huggies ran a few years ago that catered to this notion that we're utter incompetents, a group of fathers loudly and vocally expressed their displeasure at the obvious marginalization -- a sort of "misandry," if you will.  Huggies' original campaign suggested that because we're so stupid when it comes to babies and diaper changes, Huggies products could even withstand our own incapability.  They instead changed that after the backlash to something more positive.  The statement from a spokesperson from Kimberly-Clark (parent company of Huggies) said:

"We respect the job that all parents do in helping to raise and care for their children. We also recognize that Dad is playing a larger role in the family and deserves to be celebrated."

Truthfully? I don't need to be celebrated. I'd just like to not be insulted.

That's what I get from the Tide commercial. It's not going out of its way and falling all over itself to prop me or any other capable father up on pedestals. It's just stating a simple fact, and the simplicity of its delivery spoke volumes greater than any proverbial orchestra or marching band ever could.

Postscript: of course, I know I'm not alone in this line of thinking, and others more cogent than I have expressed similar sentiment.  And because it's The Internet, one typical reaction will be "oh get over yourselves, lighten up, get a life, it's just a joke" as if to say that our very real reaction is merely overreaction.  To that, I would retort: a joke is only real if everyone is laughing, not if someone is being laughed at.

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."

Research Study

This week, we met with a research scientist and her graduate assistant who traveled up to Michigan from South Carolina to observe the kids and interview us.  They have been conducting research into Fragile X Syndrome and have a need for volunteer subject families.  We found out about the project through our local Fragile X support group, so a few months ago, we made contact with them.

The first thing I suppose I should mention is that there is no actual treatment for the kids to be had here.  This wasn't a medical evaluation or a "check-up."  This was pure science.  We're not going to receive a prescription or a magic pill to make their FXS go away (wouldn't that be awesome?).

What this does enable, though, is more research, data collection, and analysis so that future treatments can be made possible.  While we may not benefit immediately or even in the near term, this aids in the effort for long-term results and conclusions.  And who knows?  Maybe our kids are the trigger or that last piece of the puzzle to help make that pill that makes FXS go away. :)

The experience was similar to the kids' evaluations at MISD for their early-intervention programs -- lots of questions and evaluations to determine a baseline for their development and abilities.  That was rather emotionally draining, because it shined that spotlight again on where the kids are versus where kids who don't have developmental or cognitive disabilities are at their respective ages.  But, they needed to know where the kids are in order to gather data and conduct observations, so we had to just buckle down and do it.

What was interesting was that their research apparently has a shortage of girls in their studies that fall within the age brackets that they need, and Evie was the perfect subject.  Near the end of the year or next year, they want to do a follow-up with her, and we're not sure yet whether that means they're coming back up to Michigan or whether they're going to fly us down to South Carolina (depends on their grant funding).

Nonetheless, it's both exciting and scary.  It's exciting that we get to help with Fragile X research in the hopes that future children and families can benefit.  It's scary too because it also means that it's all the more real.  Then again, I suppose one wouldn't know it to just look at these guys:

Happy 2nd Birthday, Cannonball!

Henry is two years old today.

And while he's certainly on a different track than typical 2-year-olds, he is who he is.  While there are times when I'm wistful that he doesn't speak, and that I'm not sure that he listens to us, his unique qualities are what make him unique, and therefore, our boy.

He's made so many milestone leaps this year that I have trouble remembering them all or when they precisely occurred.

• He's now able to crawl on his hands and knees, though not for very long or very far.
• He's grasping pieces of food with his hands and bringing them to his mouth.
• He walks from place to place in the house by himself and is starting to show signs of running.
• He understands certain words or unspoken meanings when we ask him to find a page in his baby farm animals book.
• He can squat down to pick up an object off of the floor.
• He can lower himself to the floor, as long as he's bracing onto a larger object like a couch or the entertainment center.
• He can climb onto the couch and also climb off of it (helps that he's the height of a 4 year old).

I'd be lying if I said that I didn't wish things were different, that I wish he wouldn't have been affected by Fragile X, so that I could hear what goes on in his mind because he's apparently got a whole world going on in that giant skull.  I don't know when or how we can potty-train him, and that worries me a lot.

Then again, I hardly think there's a person out there who thinks "gosh, it'd be great if my kid could have a disability of some kind!"

This doesn't mean that I regret him or the circumstances.  Far from it.  It may not have been what we'd have wished for, but it's the situation that we have.  So we all buckle down and go to work.  Because for as difficult and as scary as the future is (because I'd also be lying if I didn't worry about what would happen to the kids with their anxieties and communication issues if we weren't around anymore), it's what we know and what they know.  This isn't their fault or ours.  It just is.  Sometimes, it's just the accompanying burden of knowledge.

And then, how can I look at this face, hear his laugh, or feel his hand in mine, and not feel my heart swell?

A Big Kid

Today, after torturing our poor boy with a visit to the otolaryngologist to check on his tubes and then subjecting him to a haircut, we took Henry over to the play area at Lakeside Mall to chill him out.

Though in reality, as soon as we left the haircut place, he was fine.  However, we'd never seen him rage THAT hard before, to the point of clenching his fists and trembling in pure and utter emotional meltdown.  Anyway...

There was an older boy who was playing with whom I presume was his younger brother.  The younger boy was interested in playing with Henry, who was having a ball walking between Lori and me.  Henry also occasionally veered from his path between us to go exploring on his own (!!!! MILESTONE !!!!!).

On those explorations was when the younger boy would approach Henry to get him to play with them.  But Henry being who he is just walked away and continued on his own path.  No big deal.

What I did notice, though, was that younger boy -- whom I estimated to be about 3 or 4 years old -- was maybe only a half an inch to an inch taller than Henry.  That was quite a shock to me, but it also probably explained why the younger boy was hoping the Henry would be amenable to playing with them.

He likely thought Henry was the same age.  And that's not even getting into the whole "developmental vs. physical age" topic in my own head.

Today was also Evie's 6-month check-up at the pediatrician (and on a side note, we found out that the doctor we really like at this office is leaving in July...hopefully, she's staying in the area and not, say, opening her own practice in Tennessee.  But she has a unique name, so I'm sure the Internets will help us in tracking her down).  Evie is still in the 75th percentile in height and weight.  Henry was in the 95th for height while between 50-75th for weight, so Evie may be big for her age but she's proportional whereas Henry is tall and skinny.

And yeah, just grasping his little noodle arms while he's walking, I'm harboring some secret fears that I'm going to just accidentally snap them like kindling.

Our 2-year-old is the size of a kindergartener.

Two Minutes

Two minutes of Evie and me wandering around in her carrier while she tests out her face and her voice.

Knew It Was Coming, But...

...it doesn't make it any easier to hear confirmation.

I have to admit that I've been deluding myself.  Deluding myself into thinking that Evie would be okay, that she'd beat the genetic odds and have nothing to worry about...maybe a bit of shyness and difficulty in math, but otherwise totally typical and average.

She went for an evaluation today, and the analysis was that, at five months old, she's at about three months in cognitive and physical development.  That was a bit of a gut punch, I have to admit.  I was really, really hoping that it would come back with a near-dismissive "pheh, she's FINE!  Why are you even here?!"

I really wanted to hear that (I wasn't there personally; I only got the message afterwards).

The optimistic view would be to fall back on the "all children develop at their own pace" cliche.  But we lived through that with Henry already.  And denial can be a powerful defense mechanism to protect oneself against news one doesn't want to accept or acknowledge.  Henry needed help and he's getting it, but it's a slow battle and it certainly hasn't been easy by any stretch of the imagination.

The prospect of repeating it with Evie seems daunting right now.  It was that reason that made me wish and hope that Evie would be the one we didn't have to worry about.

But then that brings on another issue in that if Evie was the one we didn't have to worry about, would we inadvertently neglect her in favor of caring for Henry so much?  I often find myself getting hauled off by the boy in his next quest to ramble face first through the kitchen and front room, while Evie lays by herself on the floor or in her bouncer seat.

There are times when two of us adults are wrangling Henry while the third is preparing dinner....and Evie is left alone.  And I feel a crushing guilt when I see that.  I think that may be a contributing reason to why I've gotten so attached to the carrier harness thing that I stick her in so that we can walk around together while my hands remain free (I've eaten sandwiches above her head while wearing it...I used a plate!).  Henry complained quickly when he was put in it, so I only used it once with him.  Evie doesn't complain so she goes in it as often as possible.

And of course, then comes the snowball effect of "if I start paying more attention to her now, is it because of equity or because she needs the extra care now as well?" and round and round I go in my head in a self-defeating circle of rhetoric.

So, Evie's therapy sessions begin next week and like Henry's, they'll go up to the end of the school year.  I won't get to see her awake today because it's nearly the end of this winter semester for me. The guys in my group project wanted to meet early before class to finalize our presentation, so I'm off to school without stopping at home.  That makes me sad, but it's all for the greater good, right?  All to improve my future employment prospects and chances, right?

Quick Drops

Not a long, poignant novella this time.  Just a few quick hits.

Last weekend, Lori and I took the kids out to Somerset Collection just to get out of the house for a bit.  Evie ended up falling asleep in her car seat, and Henry did well in the different environment.

While Lori and I stopped briefly for a late lunch, we gave Henry some small pieces of chicken from Lori's order.  And to our great surprise and delight, he didn't choke or gag on any of them.  He actually ate Real Food!

When it was time to leave, I had him stand on his own while I put his jacket on him.  Lori began walking away with the stroller, and Henry, instead of raising his arms to be picked up, started toddling off after her.  Not just that, but walking without holding my hand.  Lori kept looking at his reflection in the store windows and there he was, just following behind her while I walked behind him to catch him if he stumbled.

We tried to put him back in the stroller when we got to the exit, but he wanted to keep being held.  So I indulged him there, but we gave him lots of hugs and praise.

Yesterday was some more tummy time for Evie.  She actually managed to stay in that position for about 3 minutes before she started complaining.  Not just that, but she did her best to lift her head to look ahead of her.  Still no "mini push-ups" yet, though.

"It's Normal"

Two words that seem insignificant in some contexts, possibly a backhanded compliment in other contexts, but sometimes, hearing those two words can certainly make some weight lift from one's shoulders.

While I'm not so naive as to think that one day we're all going to just wake up and Henry is going to be a typically chatting and moving 2-year-old, hearing his physical therapist remark that his separation anxiety reaction was "normal for this age" was truly a big thing for me to hear.

We started off in the occupational therapy room where Henry had a fairly good time playing.  He started off, as he usually does, very clingy, very whiny, and not wanting to lose the reassurance of my presence (this was also the first time since I went back to work that I took him to his sessions).  But when it came time for PT, it all fell apart.

He was nervous and agitated as we neared the PT room (which is a giant playroom filled with all sorts of toys and equipment with which we adults could go crazy for an evening after drinking...), and became even more disconsolate as our therapist took him over to one of the toys to begin.  Then I realized that I left all of our stuff down the hall in the OT room, so I ducked out to go retrieve them.

I could hear Henry howling at the top of his lungs all the way down the hall, into the OT room, then back up the hall toward PT.  When I returned, his face was contorted in utter despair, fat tears streaming down his cheeks.  He desperately reached his arms toward me, and when therapist Jen put in him the platform swing (something he usually likes), he made every attempt he could with his skinny arms clawing at the air to get to me, giving no thought to the unstable platform or the 3 inches of empty air between the swing and the mat on the floor.

He clambered toward me, crawled in my lap, and buried his face in my neck, wailing as if the world was ending.

That was when Jen reassured me that his reaction.... was normal.  The separation anxiety that kids feel at this age was typical, and Henry displayed something typical!

There are definitely some regrets over pulling Henry out of daycare.  He doesn't have the daily social interaction anymore with other kids and adults, with structured routines and other daily activities.  His social anxiety levels have climbed because of the insulation of living at home and not going to school every day anymore, and while I don't have any hard data on causation/correlation, I have to believe that his lessened exposure to other people is a significant contributor to his nervousness.

But given his age, his body size, and his developmental stage, he likely would've found himself in that limbo -- he's still cognitively an infant in many respects (and in some physical aspects), but he's otherwise physically a toddler.  The Toddler Room next door to the Infant Room was where he'd have gone had he been on the typical developmental track, but those kids would've run over him like trains.  The likely course would be one of the special ed rooms but I have no idea what the pricing structure for that would've been, had it even been an option.

So to hear that he's doing even one thing "normal" felt like a relief, a brief respite.  We'll keep going to as many social functions and services as we can to keep Henry from becoming too socially withdrawn, though it's hard.

"Keep sending him up."

Miles for a Pickle

By now, I think my dear and appreciated audience understands that certain achievements that the kids reach that would otherwise be "normal" for typically developing kids are huge deals to us instead.  We often go through a day worried that the kids will never walk or eat or talk as expected for children of their age, and it's a hard thing to reconcile on most days.  We have fears that, because we're older parents, we're going to be taking care of a 20-something-year old 5-year-old when we're in our 60s.

So it's moments like below that fill our hearts with so much joy and hope that we feel the need to share what would otherwise be a run-of-the-mill event in typically developing kids.

Henry showed interest in eating solid foods:

We were at Sherwood, like we tend to be.  In the afternoons, it's a wonderful place because, well, we love the owners, we love the staff, and there's room for Henry to run around.  They understand our circumstances, and only newbie customers who just don't get it look at us askance when Henry's in "wrecking ball mode."

But Henry not only took an interest in Lori's pickle spear, but started eating it.  This was huge.

He didn't gag, he didn't choke, and he didn't throw up.  In fact, as the video shows, he showed interest in the pickle.  He showed more interest in the pickle than what's shown in the video clip because I didn't think to actually record it until he was almost done with pickles.  But the pickle spear that he's eating in this clip is actually the second spear we gave him.

I cannot express how happy we are that he's showing an interest and tolerance for food that isn't pureed baby food.  The worry up until this point has been wondering how to get more calories into this skinny boy, because Gerber Stage 3 baby food wasn't meant for two-year-olds in terms of quantity or nutrition.  So while we're not out of the woods yet, this gives us hope.

Welcome, New Friends

To my Facebook friends I've added recently, welcome.  You're here because I directed you here to explain a very significant aspect of my life.  Many of you know that I have young children, but you may not be aware that my kids aren't typical.

Clearly, the theme of this blog may give you some idea of what's going on, but to summarize, the kids have Fragile X Syndrome, a genetic disorder that manifests in a way similar to autism spectrum disorder.  In fact, FXS is leading genetic cause of ASD.  But this doesn't necessarily mean that the kids are autistic.

What it really means is that they will have some challenges in life, as will we.  We don't know what the extent of their challenges will be.  So if you read me talking about accomplishments that they achieve that sound a little "behind," like going nuts over the fact that my nearly-two-year-old son has finally begun speaking, it's not because of "all children develop at their own pace," or some other cliched platitude like that.

It's because for a kid with developmental delays and possible intellectual disabilities, something like that is huge, for both him and us.

The problem is, again, that we don't know what is in store for these kids.

So I invite you all to peruse the pages and links I've put up.  This will hopefully give you some background into why I may post a few statuses on FB that may come across like a 21st Century Helicopter Parent of the Year candidate.  It is, in fact, the culmination of a long road that we've traveled thus far, and the long road ahead of us.

We don't have typically-developing kids.so it'll be somewhat difficult to relate at times.  Just as it's difficult for me to relate to the parents of kids who don't have these developmental issues to contend with.  I may occasionally look with envy at parents who are having "normal" problems with their kids, because I know that I may not experience those "normal" problems.

It may seem awful to use the term "normal" in that respect, as if my kids are subhuman somehow.  But to be blunt, they don't fit into the "normal" stream of life -- not necessarily "lower" or "inferior" or "unworthy," but just off to the side somewhere.  The reality also is that when medical professionals respond to us with "fragile what?" at various appointments, it's hard not to get discouraged.  It's hard when medical professionals have to act with confidence and dignity but give us bad advice that we know is bad advice -- advice that's geared toward typically developing kids that doesn't apply to our case.

So on occasion, you may read about our frustrations and our celebrations.  Hopefully, you now have a better understanding of why we're making a big deal out of certain things that would otherwise seem like it should be routine.

Thank you for reading, and see you out on the ocean of social media.

Regression Analysis

(yes, another math play on words)

With luck, Henry's regression period is coming to a close.  He's starting to stand on his own again instead of just folding up his legs whenever being lowered to the floor.  A few days ago, he'd started again to stand on his own power when he was distracted, and only collapse in a pitiful heap when he realized that he was standing and that we were paying attention.  Lately, his standing has been less and less surreptitious and more deliberate.

It was heartbreaking, really.  In light of the developmental delay, when he had really gotten into the walking-with-assistance/charging headlong into adventure, it was tiring for us, but a good thing because we thought he was physically catching up to kids his age.

Then Evie arrived, I went back to work, we switched bottles on him, and things went to hell.  He suddenly reverted back to "helpless little baby."

At first, we thought he was injured somehow, between all the running and the braces we have for his feet.  But neither we nor the doctor could detect any physical injury or discomfort.  That led to our only remaining option of toddler-based regression.

One step forward, two steps back, as it were.

But if I was to force myself to look at the positive takeaway of this, this means that Henry has enough situational awareness to have regressed at all.  If he was completely out of touch with his surroundings, I doubt this would have happened.  Small comfort, truly, but comfort nonetheless.

(though admittedly, constantly having to look for the positive in daunting situations just to keep from giving up and crying does get very exhausting after a while)

Paper Cuts and Lemon Juice

An interesting write-up, how The Princess Bride can equate to parenting a child with developmental disorders such as ASD or, in our case, Fragile X.

I especially have to be mindful of #8:

There’s not a lot of money in revenge

- Inigo Montoya

Don’t spend your life feeling bitter, blaming yourself, hating autism or resenting parents of typically developing kids. It’s a fruitless and costly waste of energy that can be directed into more productive things.

Admittedly, it's difficult to rein in the snap reaction when well-meaning parents of typically developing kids offer us advice.  They can't possibly have any idea of what this is like, or how much it hurts to hear that our kid is actually that far behind, developmentally, because he hasn't achieved the same milestones as his typical peers.

That's what's going through my head, silently hidden behind the plastic smile with gritted teeth, deliberate eye contact, and strenuously controlled rhythmic breathing.

"Yes, I'm sure he will start talking incessantly soon," I say.

"HOW THE HELL WOULD YOU KNOW THAT HE'S JUST ON THE VERGE OF TALKING WHEN HIS SPEECH PATTERNS ARE THAT OF AN 8-MONTH OLD??!!?" screams my brain.

"He's 20 months?  Oh, it's gotta be tiring trying to chase after him, huh?" says the grocery clerk, sweetly.  "He's a handful!" I say cheerfully but vaguely.

"NO IT REALLY ISN'T THAT TIRING BECAUSE HIS BODY IS BETRAYING HIM BY NOT DEVELOPING THE MUSCULATURE HE NEEDS TO BE ABLE TO SURVIVE ON HIS OWN," my spirit cries.

"Oh, he'll be okay soon!  Hahaha," say my conversation partners who are growing uncomfortable because I'm starting to scratch beneath the superficial and meaningless, and want to change the subject quickly.

"WHAT THE HELL IS 'SOON?'  WE CAN'T EVEN BEGIN TOILET TRAINING BECAUSE HE'S NEITHER WALKING NOR COMMUNICATING COHERENTLY.  DON'T TELL ME HE'LL BE 'OKAY.'  YOU.  DON'T.  KNOW," my desperation scolds.

But again, these are the hair-trigger knee-jerk reactions.  Nobody deserves that.  Not the people with whom I'm speaking, not myself, and definitely not the kids.  The kids don't deserve me giving up like this or giving in to the Dark Side of the Force.

Yes, I'll be frustrated a lot, and I may get frustrated because I'm feeling like I'm being shown my own inadequacies by the parents of typically developing kids who proudly and smugly seem to proclaim that they're all Normal.  Or that it does get exhausting trying to read the tone of the conversation and determine that those who are listening are not prepared enough to deal with everything I want to say, but have to keep bottled up.

But unless someone comes as straight-forward as to call my boy a "retard" directly, then they don't deserve my fury.  They're not doing this out of malice or superiority -- that's my own head filling in these gaps and attempting to rationalize a question that I can't answer.

It's unfair.  It's unproductive.  And ultimately, it's a waste of time.  This is not Ultimate Suffering.  This is not the Fire Swamp.  I can't be in the revenge business for so long that I no longer know what to do with my life.

My kids need a father, my wife needs a husband.  Not Batman (well....maybe that's not entirely a bad thing...).

Post-script:  Then I look at these faces and all becomes right with the world:

Regression? Or Normal?

Sometime last week, Henry must have had something occur that made him scared.  For the last week, he has not only refused to walk anymore, but also resisted standing.  If we put him in position to stand, he would be revving up and ready to take off before.

Now, he draws his legs up like he's afraid to stand.

Lori took him to the doctor, who didn't notice any obvious injuries.  I've surreptitiously checked out all of his muscles and joints, and he doesn't react to any touch as if it hurt.  So, like any 21st Century parent, what do I do?

To the Internet!  Which is, of course, a huge mistake all on its own.

I've gotten everything from toxic synovitis to the "onset" of autism (which, in and of itself, is suspect phrasing).  He is physically able to stand and jump -- that much is obvious whenever we put him in his too-small-for-him exercise saucers.  He just refuses to anymore, and seems completely gun-shy. Other Internetters have said that they've experienced this with their typically-developing children and that they got over it in a few weeks (!!!), with no known cause.

Another symptom that indicates a fear-based reason is that he seems very reluctant now to swan dive backwards out of my arms when I'm holding him.  Before, it was his rush, his adrenaline-junkie way.  Instead, when I leaned him back to begin that motion, he started clinging desperately to my arms to avoid falling backwards.

All I can think of is that he must have fallen or stumbled to where it may not have physically hurt him but mentally hurt him somehow.

So that puts us in a tough position.  Do we coddle him in the hopes that it goes away naturally and he regains his confidence on his own terms (with the risk that he won't and his physical development regresses), or do we act like Viper and Jester in "Top Gun" and keep sending Maverick up in the hopes that he'll get over Goose's death and engage?


UPDATE: Henry's OT and PT aren't worried about this.  They suggested that a huge series of rapid fire changes probably just overwhelmed the poor kid.  From me going back to work (when previously, I'd spent most every day at home with him), to switching bottles (he got the smaller 5 oz. bottles while we gave Evie his larger 8 oz. bottles so that we can increase her feeding), to potentially figuring out how to speak, to just the presence and increased awareness of a little baby in the house who's getting more of the attention that he used to get exclusively, and that he's approaching 2 years old probably all did it and something had to give.  They're fairly comfortable that he'll remember again when he's ready.

Consolidation

Just a blog update on this one, rather than any deep thoughts.  I decided to consolidate the kids' picture sites into this one so that there's just a single location for the blog and their month-by-month photo diary.  Maintaining some separate Tumblrs as well as this blog got to be a little too much of a hassle.

So both the Henry by the Month and Evie by the Month (had to change it from "Evelyn," since I'm no longer used to calling her by her full name) are now housed here on Blogger.

The Obligatory Retrospective

I've avoided subscribing to the seemingly typical "20XX was terrible, here's to hoping that 20XY is better" mentality as much as possible.  I think even during the transition of 2003 -- the year my father suddenly died -- to 2004, I either minimized it or at least was justified if I did succumb to that thinking.

Perhaps a bit overly optimistic, but I tended to latch onto the notion that the quality of a year is dependent upon perspective.  One could choose to focus solely on the challenges and trials, and when doing so, see the quantity of such negativity populating the year.  That would therefore make it very easy to write off the year as a terrible one, worthy of being forgotten.

Or, conversely, one could choose to focus solely on the rewards that came during the year, and therefore see the year as a success.  Maybe a bit too optimistic, and perhaps unrealistic because who truly has a perfect life?

Everyone has a blend of negative and positive aspects of their year.  In the words of one P. Rogers Nelson, "we have gathered here today to get through this thing called 'life.'" The quality of a year and how we view it is solely up to ourselves.  The year is what we make of it.

I don't think anybody would fault me for saying that 2013 was a pretty darn good year.  We welcomed our new daughter toward the end of the year, making Henry a big brother already.  I still have a job, I'm in pretty good health and take no medications, and my car still runs.

If I was to take that pessimistic "2013 sucked; here's to hoping that 2014 is better" track, I could latch onto the fact that 2013 was the year that both kids were diagnosed with Fragile X Syndrome, that Evie's early ultrasound showed a physical characteristic that was highly indicative of Down Syndrome.  That the pregnancy with Evie was not without its complications for Lori, or that Lori had to quit her job because paying for daycare for two children was going to cost about as much as she was making (and the implications that brings, of being a single-income household with two young children with special needs in today's economical environment).  That Henry's cognitive development is that of a 6 to 9 month old and he's at about 12 months in physical development when he's actually 18 months old.  That Henry could have died earlier in 2013 when he came down with H1N1 and pneumonia which put him in the hospital for four days, and that the bill for his care after insurance was around $5,000.

But that's not me.

First, I feel it unrealistic to hope that a new year is better than the previous.  A year is but a year.  It's a chronological series of events that neither hinders nor helps a person along in and of itself.  A year is not going to be better or worse in and of itself in response to my wishes in exclusion.

Second, I am not one to be satisfied in coasting along the timeline with the expectations that whatever happens was purely a result of external forces,  forces over which I have no control.  I think this in particular is the attitude that confounds me over that statement of "here's to hoping...." 

Don't hope.  Take.  Do.  Make happen.

Whether it's taking control or taking responsibility, I feel it less productive to hang back and wishing for success (whether out of some sense of helplessness or entitlement, I can't be sure which) as opposed to making it happen or at least weathering the storm by battening down your own proverbial hatches, then determining the next course of action.

So both kids have Fragile X Syndrome.  That might mean that Henry may not form coherent words until he's three years old, or that he may be diagnosed autistic in a little while, but so what?  What is going to change if I sit here and moan about it?  If I wallow in self-pity, the "why does this have to happen to meeeeeee?"  I'm certainly not going to be able to change his genes.

But it may also mean that Evie won't even be affected, considering the FXS hits boys typically harder than it does girls.  Or she could be severely affected; we have no way of knowing, and it's not like we can take steps to prevent or alter its manifestation.  We haven't failed, so why worry?  In this regard, the only way we can fail as parents is if we live in denial of the help that these kids will need.

I suppose in that regard, we can hope, but it'd also be unrealistic to let that dictate our actions rather than proactively taking the necessary steps to get the kids the assistance they need.  We could either hope that Henry and Evie reach developmental milestones, or we can continue to take them to MISD's Early On program to get the physical and occupational therapies, the specialized instruction, and guidance for them.

So we're down to one income.  But that's okay because I spent the bulk of 2013 preparing for it.  I switched our household finance & budget system from the Excel system that I'd used for close to 20 years to a more formalized software system that filled a significant gap that I didn't realize needed filling: how to budget.  Previously, I spent up every spare dollar we had, but also failed to account for several budget accounts.  That was why our income always seemed insufficient to meet our needs, even though our combined household income was just shy of six figures.

By comparison, we should've been swimming in money.  But we weren't because I wasn't budgeting correctly.  2013 was instead the year I got a cold wake-up call with regard to budgeting, and after admitting my error (which in and of itself was hard, considering my stratospheric degree of pride), I made that course correction which put us on a more comfortable path to reducing our income.

My mother's in good health and she's been a tremendous help in the family.  Lori's on the path to physical recovery from Evie's birth.  I ran three half marathons, one of which was a new personal record.

I'm still employed, got good grades in each of my classes, and we even paid off Lori's car (about 3½ years early).  2013 was pretty darn good, and 2014 is shaping up to be a good one as well.  I could moan about the amount of time, effort, and money it took to renovate the upstairs bathroom in December but the end result was a product of me doing it myself.  And a takeaway from that is that I learned how to lay tile and do a better job installing and patching drywall.

2014 started off with a leaking dishwasher and burned out sump pump....but I ordered a new dishwasher with cash, and replaced the sump pump myself.  I could have moaned about the cost of the dishwasher, or congratulated myself on managing our finances to the point where we can buy a major appliance with cash.

I don't own any of the 2014 NHL Winter Classic jerseys....but we're getting a new dishwasher.

So it's all perspective.