What does one do when one is trapped in a prison from which there is no escape? When that prison is one's own body? And what does one do when observing from the outside, seeing one's own child as that prisoner, with a body that won't cooperate?
What I've been seeing with Henry is a mind that wants so very badly to explore his world and do things. But that mind is inside a body that is increasing in strength and coordination so agonizingly slowly. It's frustrating for me because I want him to experience the freedom of jumping, running, and exploring on his own and it must be frustrating for him because he sees what he wants just out of reach and it's hard to get there.
With what I know of the concept of low muscle tone with regard to childhood development as well as the principles of strength from my own weight-lifting endeavors, muscular strength and coordination isn't just about physical force. The central nervous system plays a very large role in the effect of physical strength; sending the right signals to the muscles has as much of a role in strength as the mass of the muscle itself, if not more.
This is why I may not be a large, muscular person, but can lift heavy objects that might otherwise seem out of the boundaries for an average guy my size. Why I can out-lift some of the guys at the gym who are physically larger than me. My nervous system fires more efficiently, and I also use leverage to my advantage. It's why I can lift a 250 pound friend off of the ground, as long as I use leverage and center of gravity in combination with brute strength.
Henry's lack of physical strength obviously isn't because he's not benching enough or doing enough deadlifts. It's part of the effects of delayed neurological development. But we can see that he desperately wants to stand, walk, crawl, and climb. He had wanted to crawl from about the same time as "normal" kids begin crawling. His form was that of "swimming" on a solid surface -- he instinctively knew what to do, but lacked the strength to actually place his limbs underneath himself to push himself along.
Months later, with consistent practice and placing him in that position, he's effectively army-crawling everywhere now. And he's beginning to show signs of spatial relationships, figuring out that if the things he wants are up high, he need to reach up to a nearby surface and haul himself up higher to reach them.
And that takes strength and balance that he doesn't have yet.
He's also beginning to show signs of trying to climb up onto the couch, but hasn't quite figured out how to get a foothold on the space between the couch and the cushions. He's slowly getting there, though, although it's tough to reconcile some feelings of envy on occasion when seeing other kids his age who are already flying all over the place on their own power and have been for months.
I know it's not fair to anyone to compare, and also inappropriate to do so. Special-needs kids are even more individual and unique because nobody can predict what their needs actually are, and how to provide them. It's all an improvisational game that needs constant course corrections outside of the "standard rules of engagement."
So while I continue to coach and train the boy on his own merits, and celebrate his accomplishments with as much pomp and circumstance as I have in me, I do have occasion to look wistfully at times at other parents and kids who aren't seemingly experiencing delays and difficulties. At least, not apparently on the surface anyway. Those moments are fleeting, though, because a brief little babble or giggle or a look of abject fascination crosses that kid's face and snaps me out of that "what if" world and back into his.
And I remember that this isn't a trap. It's a maze. We just need to figure out the path.
Sunday, September 1, 2013
Wednesday, August 28, 2013
Road Rage Bubbling
I'm traditionally an aggressive driver. I like to get to where I'm going efficiently and expediently. I get very annoyed when other drivers who don't remember the rules of the road impede my progress.
In contrast, I will also acknowledge etiquette on the road. If a driver signals to be let in to a lane, I will back off. All I ask is the traditional hand-wave in return.
With that being said, there were two instances this week where -- had Henry not been in the car with me -- I may have proverbially dropped the gloves and engaged in some road wars. The first was in a lane merge, and the other was a lane change on the highway.
In the first, the right lane ends. Everyone who drives that stretch during rush hour traffic knows that. And by the body language of the Chevy truck that I passed, he knew it, too. He just didn't care. He was going to get in front of everyone. I skipped past him and closed the space between the car in front of me and myself, while he sped up to keep pace with me.
The body language indicated that he as going to merge right then or run me off the road (by that, I mean "into the lane to my left, other cars be damned"). As everyone in the lane was playing the same game, Red Truck With the Metal Toolbox was boxed out and left about two car lengths behind me, but not before he had opportunity to angrily slam on his horn and flash his highbeams at me.
As we all went about our chosen lanes, I pulled into the right-turn lane and saw him aggressively zoom up behind me and slam his brakes, an angry Chevy logo looming in my rear-view mirror. I turned and got into the subsequent left-turn lane. I saw him cut across traffic, turn left into a parking lot to bypass the traffic signal and a defiant middle finger flashed in my direction. I watched him speed down a residential street, fuming.
The second was nearing a highway junction. I saw my opening and merged. The Dodge Ram thought I cut it too close, and expressed his displeasure with highbeams. Fine. So I screwed that up. However, there was a large construction flatbed truck so I pulled back into the lane to the left....just as Dodge Ram was doing the same thing, and therefore cutting him off a second time. Again, more highbeams.
Now he was mad. After all, I should have read his mind despite the lack of his turn signals, and the presence of mine.
When I got back into my lane after passing the flatbed truck, I saw out of my peripheral the Ram approach on my left. He was also edging very close to my door, which meant that he was planning to cut me off.
I think he watches too much NASCAR.
Thus, body language prepared me for his next move, which was indeed to cut me off at what appeared to be a hair's breadth between his back bumper and my left fender. He tapped his brakes as a fear/intimidation attempt but I was also ready for that and already slowed to increase distance (and I was getting off of M-59 and onto I-75 at that point anyway). Hillbilly Ram Boy was continuing on M-59, probably swearing to himself.
Had I not had Henry in the car, I may have given in to the self-righteousness and engaged. Or at the very least, given it some more serious thought. But that constant presence of a happily babbling kid in the seat behind me kept me in check and kept my perspective.
In that respect, I won.
(as an aside, why is it that drivers who are older and therefore have been driving longer than I typically seem to be the ones who've forgotten the rules?)
In contrast, I will also acknowledge etiquette on the road. If a driver signals to be let in to a lane, I will back off. All I ask is the traditional hand-wave in return.
With that being said, there were two instances this week where -- had Henry not been in the car with me -- I may have proverbially dropped the gloves and engaged in some road wars. The first was in a lane merge, and the other was a lane change on the highway.
In the first, the right lane ends. Everyone who drives that stretch during rush hour traffic knows that. And by the body language of the Chevy truck that I passed, he knew it, too. He just didn't care. He was going to get in front of everyone. I skipped past him and closed the space between the car in front of me and myself, while he sped up to keep pace with me.
The body language indicated that he as going to merge right then or run me off the road (by that, I mean "into the lane to my left, other cars be damned"). As everyone in the lane was playing the same game, Red Truck With the Metal Toolbox was boxed out and left about two car lengths behind me, but not before he had opportunity to angrily slam on his horn and flash his highbeams at me.
As we all went about our chosen lanes, I pulled into the right-turn lane and saw him aggressively zoom up behind me and slam his brakes, an angry Chevy logo looming in my rear-view mirror. I turned and got into the subsequent left-turn lane. I saw him cut across traffic, turn left into a parking lot to bypass the traffic signal and a defiant middle finger flashed in my direction. I watched him speed down a residential street, fuming.
The second was nearing a highway junction. I saw my opening and merged. The Dodge Ram thought I cut it too close, and expressed his displeasure with highbeams. Fine. So I screwed that up. However, there was a large construction flatbed truck so I pulled back into the lane to the left....just as Dodge Ram was doing the same thing, and therefore cutting him off a second time. Again, more highbeams.
Now he was mad. After all, I should have read his mind despite the lack of his turn signals, and the presence of mine.
When I got back into my lane after passing the flatbed truck, I saw out of my peripheral the Ram approach on my left. He was also edging very close to my door, which meant that he was planning to cut me off.
I think he watches too much NASCAR.
Thus, body language prepared me for his next move, which was indeed to cut me off at what appeared to be a hair's breadth between his back bumper and my left fender. He tapped his brakes as a fear/intimidation attempt but I was also ready for that and already slowed to increase distance (and I was getting off of M-59 and onto I-75 at that point anyway). Hillbilly Ram Boy was continuing on M-59, probably swearing to himself.
Had I not had Henry in the car, I may have given in to the self-righteousness and engaged. Or at the very least, given it some more serious thought. But that constant presence of a happily babbling kid in the seat behind me kept me in check and kept my perspective.
In that respect, I won.
Sunday, August 11, 2013
I Have But Two Faces
"One for the world,
One for God, save me.
I cannot cry for the shoulder cries more..."
(and I cut the lyrics off there because the context falls off the cliff at that point)
These are part of the chorus of "The Poet and the Pendulum" by Finnish symphonic metal band Nightwish. The song itself doesn't really apply to this entry, but I wanted to shoehorn this specific snippet into this post, how we put forth two appearances, depending on the situation.
And how one of those appearances just gets exhausting after a time to maintain, but we must.
Henry is, of course, over a year old at this point. As such, there are certain expectations for a kid of that age, in terms of physical, social, emotional, and mental development. But with Fragile X or autism or any other developmental disability, the so-called "regular time-tables" have to be thrown out, and improvisation becomes the name of the game.
And with that said, it sometimes becomes difficult to put up the plastic smiles in response to the myriad of "is he crawling? Is he walking? Is he talking?" A few months ago, it might have been "typical" to say "no," and expect that it's just a delay of "each kid is different." But at some point, certain milestones come and go, and with no visible progress, others grow concerned.
Well, this is something that we already know. We know that Henry's delayed, and as such, we've already taken steps to get the help that both he and we will need. But to explain that to others who aren't as intimately familiar with the situation can get tiring.
On the one hand, we want to explain why Henry isn't quite at expected milestones but on the other, we also know that it might be a bit much information to digest at any given time if one isn't prepared for it. And in a casual, social situation, one is not quite at a sitting-down-on-the-couch-with-a-look-of-genuine-concern moment.
So we play off those questions with a "yeah, he's doing fine" or "yep, not yet, but he'll get there," all the while wondering when our resolve will crack and the facade crumbles.
We know to celebrate and encourage every milestone he does achieve, no matter how seemingly insignificant. For example, his crawling is starting to get more defined now, as he's gradually alternating his legs rather than exclusively scooting across the floor like a baby sea turtle struggling to reach the ocean. But his upper body strength isn't quite up to the task yet.
It's hard to avoid comparing to his classmates, who are already walking and have been for months now, by this point in their development.
So we have these two faces. One to show the world that everything is peachy-keen and totally under control, and the other we hold for ourselves when we have the luxury of letting loose our frustrations and confusion, processes that I know intellectually are natural and necessary....but still hard to reconcile nonetheless.
One for God, save me.
I cannot cry for the shoulder cries more..."
(and I cut the lyrics off there because the context falls off the cliff at that point)
These are part of the chorus of "The Poet and the Pendulum" by Finnish symphonic metal band Nightwish. The song itself doesn't really apply to this entry, but I wanted to shoehorn this specific snippet into this post, how we put forth two appearances, depending on the situation.
And how one of those appearances just gets exhausting after a time to maintain, but we must.
Henry is, of course, over a year old at this point. As such, there are certain expectations for a kid of that age, in terms of physical, social, emotional, and mental development. But with Fragile X or autism or any other developmental disability, the so-called "regular time-tables" have to be thrown out, and improvisation becomes the name of the game.
And with that said, it sometimes becomes difficult to put up the plastic smiles in response to the myriad of "is he crawling? Is he walking? Is he talking?" A few months ago, it might have been "typical" to say "no," and expect that it's just a delay of "each kid is different." But at some point, certain milestones come and go, and with no visible progress, others grow concerned.
Well, this is something that we already know. We know that Henry's delayed, and as such, we've already taken steps to get the help that both he and we will need. But to explain that to others who aren't as intimately familiar with the situation can get tiring.
On the one hand, we want to explain why Henry isn't quite at expected milestones but on the other, we also know that it might be a bit much information to digest at any given time if one isn't prepared for it. And in a casual, social situation, one is not quite at a sitting-down-on-the-couch-with-a-look-of-genuine-concern moment.
So we play off those questions with a "yeah, he's doing fine" or "yep, not yet, but he'll get there," all the while wondering when our resolve will crack and the facade crumbles.
We know to celebrate and encourage every milestone he does achieve, no matter how seemingly insignificant. For example, his crawling is starting to get more defined now, as he's gradually alternating his legs rather than exclusively scooting across the floor like a baby sea turtle struggling to reach the ocean. But his upper body strength isn't quite up to the task yet.
It's hard to avoid comparing to his classmates, who are already walking and have been for months now, by this point in their development.
So we have these two faces. One to show the world that everything is peachy-keen and totally under control, and the other we hold for ourselves when we have the luxury of letting loose our frustrations and confusion, processes that I know intellectually are natural and necessary....but still hard to reconcile nonetheless.
Wednesday, July 31, 2013
Portent of the Future
RiptApparel.com is on my daily Web site tour, to see what goofy/cool t-shirts they may have on any particular day. They sell the images on multiple products in addition to t-shirts and provide templates of models to see what the designs look like on real people. I inadvertently scrolled over the toddler size and saw this:
I just about fell over in my chair.
I just about fell over in my chair.
Tuesday, July 23, 2013
More Milestones
Today marked another set of triumphs. However brief, however tiny in a universal sense, they are monumental in our case.
As I sat on the couch, watching Henry play on the floor, I saw him patting his cheek while playing with his Leapfrog activity table. Nothing new; he absently does that often whether to himself or to my face or hands.
But this time was different. Allow me to preface one thing, however.
Henry and I have a little game of sorts. It started early but whenever he is vocalizing with his mouth open, I'll pat his mouth with my hand to make that stereotype-Indian "ababababababa" sound. At first, when he was really young and had no idea what anything was, he was confused and displeased by what I was doing. But it was a funny noise so I kept doing it for my own amusement.
But as he gained more awareness of the world, and he grew amused by sounds, he started enjoying it because of the funny noise. It has gotten to the point where he'll either draw my hand to his mouth himself so he can make the noise, or if I just start patting his lips, he'll vocalize:
Back to present day.
He started patting his own mouth. I immediately started doing the same thing, patting my mouth and making the noise so that I was making the "abababababa" sound in the hopes of encouraging him to do it again and to correlate the hand-on-mouth-while-making-a-noise = funny noise.
He repeated it!
Three times! This wasn't coincidence. This was deliberate.
The other accomplishment is that he's slowly gaining strength and coordination to pull himself up on his own. I had him standing while my arms encircled him but not making contact, to ensure that he'd stand on his own power while still having the safety net of not landing face first on the carpet.
He lost his balance and tumbled onto my lap and over my arm, but then he made the effort to right himself back up vertically. It wasn't pretty, and he wasn't 100% successful, but he made the effort to stand by grabbing my hands and my arms and giving it everything he had to haul himself up.
This tells me that his mind is acknowledging what needs to be done, but his body hasn't quite caught up to his brain yet.
This is a good sign, and something we need to keep practicing.
As I sat on the couch, watching Henry play on the floor, I saw him patting his cheek while playing with his Leapfrog activity table. Nothing new; he absently does that often whether to himself or to my face or hands.
But this time was different. Allow me to preface one thing, however.
Henry and I have a little game of sorts. It started early but whenever he is vocalizing with his mouth open, I'll pat his mouth with my hand to make that stereotype-Indian "ababababababa" sound. At first, when he was really young and had no idea what anything was, he was confused and displeased by what I was doing. But it was a funny noise so I kept doing it for my own amusement.
But as he gained more awareness of the world, and he grew amused by sounds, he started enjoying it because of the funny noise. It has gotten to the point where he'll either draw my hand to his mouth himself so he can make the noise, or if I just start patting his lips, he'll vocalize:
Back to present day.
He started patting his own mouth. I immediately started doing the same thing, patting my mouth and making the noise so that I was making the "abababababa" sound in the hopes of encouraging him to do it again and to correlate the hand-on-mouth-while-making-a-noise = funny noise.
He repeated it!
Three times! This wasn't coincidence. This was deliberate.
The other accomplishment is that he's slowly gaining strength and coordination to pull himself up on his own. I had him standing while my arms encircled him but not making contact, to ensure that he'd stand on his own power while still having the safety net of not landing face first on the carpet.
He lost his balance and tumbled onto my lap and over my arm, but then he made the effort to right himself back up vertically. It wasn't pretty, and he wasn't 100% successful, but he made the effort to stand by grabbing my hands and my arms and giving it everything he had to haul himself up.
This tells me that his mind is acknowledging what needs to be done, but his body hasn't quite caught up to his brain yet.
This is a good sign, and something we need to keep practicing.
Monday, July 22, 2013
The Epiphany
I'm going to leave my Facebook cover photo up for a little bit longer, even after today, because while a bunch of you know what's going on, I know that many, many others don't (and no fault being placed; it's a matter of who we've chosen to tell and such).
Both of our kids are diagnosed as having full-mutation Fragile X Syndrome. Little Girl, the unborn one, we found out first. I just got verbal confirmation today for Henry, although we already knew in the back of our minds.
While correlation does not always equal causation and vice-versa, the simplest way to explain it is that FXS is the leading GENETIC cause of autism-like characteristics or autism itself (and of course, not all autism has a genetic root). And like with autism being a spectrum disorder, there is no way to predict where on the FXS spectrum the kids will be -- both Henry and Little Girl could exhibit little to no signs of disability or could require a lot of assistance or somewhere in between. We just don't know and can't predict.
The point is that we and the kids are going to have a tough road ahead of us. We will get through it, because I'm going to fight like hell for these kids. This is why I'm also leaving my profile pic from Warrior Dash up to go along with the cover photo.
I am too metal to let this go down without a fight.
But I'm writing all of this not to beg for sympathy or other social media sanctimonious melodrama, but as edification. By speaking it out loud, I acknowledge its existence, determine a preliminary plan of action, and prevent myself from hiding in denial.
It's out there now. I can't pretend that it doesn't exist, which would ultimately do the kids a disservice.
And if Henry is this cute now and I am utterly disarmed by the boy, then I can't imagine how my spirit will melt once Little Girl and I make eye contact.
And then the both of them in alliance against me....oh, take the lighter, the blowtorch, the saws-all, and the car keys now. You win. No, in fact, I'll just GO to Home Depot and BUY a saws-all since we don't already have one. I lose. I get it.
No, I write this for myself. I can't backtrack now. I owe the kids this much if not more.
Both of our kids are diagnosed as having full-mutation Fragile X Syndrome. Little Girl, the unborn one, we found out first. I just got verbal confirmation today for Henry, although we already knew in the back of our minds.
While correlation does not always equal causation and vice-versa, the simplest way to explain it is that FXS is the leading GENETIC cause of autism-like characteristics or autism itself (and of course, not all autism has a genetic root). And like with autism being a spectrum disorder, there is no way to predict where on the FXS spectrum the kids will be -- both Henry and Little Girl could exhibit little to no signs of disability or could require a lot of assistance or somewhere in between. We just don't know and can't predict.
The point is that we and the kids are going to have a tough road ahead of us. We will get through it, because I'm going to fight like hell for these kids. This is why I'm also leaving my profile pic from Warrior Dash up to go along with the cover photo.
I am too metal to let this go down without a fight.
But I'm writing all of this not to beg for sympathy or other social media sanctimonious melodrama, but as edification. By speaking it out loud, I acknowledge its existence, determine a preliminary plan of action, and prevent myself from hiding in denial.
It's out there now. I can't pretend that it doesn't exist, which would ultimately do the kids a disservice.
And if Henry is this cute now and I am utterly disarmed by the boy, then I can't imagine how my spirit will melt once Little Girl and I make eye contact.
And then the both of them in alliance against me....oh, take the lighter, the blowtorch, the saws-all, and the car keys now. You win. No, in fact, I'll just GO to Home Depot and BUY a saws-all since we don't already have one. I lose. I get it.
No, I write this for myself. I can't backtrack now. I owe the kids this much if not more.
Confirmation
It's been suspected, of course, because Henry's development and all the surrounding aspects couldn't indicate anything else. But I just got off the phone with the genetic counselor we spoke with a few weeks ago, and she confirmed for us that Henry has FXS.
I'm not entirely certain how I feel about this. On the one hand, we knew that he's got Fragile X. But on the other, it didn't stop that initial feeling in my sternum, a bit of a burning sensation, when I heard the confirmation first-hand. I guess it put more reality into the situation even if I already knew it.
I'm not entirely certain how I feel about this. On the one hand, we knew that he's got Fragile X. But on the other, it didn't stop that initial feeling in my sternum, a bit of a burning sensation, when I heard the confirmation first-hand. I guess it put more reality into the situation even if I already knew it.
Monday, July 15, 2013
I Can Haz Closure?
It's been over 4 weeks now since Henry got his blood drawn to test conclusively for Fragile X and we still haven't heard anything, despite the "10-14 days." It's rather irritating and exhausting having to fight with reluctant health systems to get any answers or reasonable appointment dates.
Monday, July 8, 2013
Crawling!
Since one of the symptoms of Fragile X kids is delayed development, one of the common observations I've noticed among other parents is the joy in celebrating the achievement of those milestones when they finally do come, even if those achievements are months to years behind their peers.
When Henry sailed past the "typical" milestone of crawling by a certain age without any sign of interest or ability, we became concerned, and the reassurances of "kids develop at their own pace" became more and more hollow. This was exacerbated by watching the other kids in Henry's daycare class, kids who are nearly the same age as him and seeing how they're moving around on their own power.
One is two months older and by the time the school year ended, he was nearly walking. Another is one month older, and she's hauling herself up onto her feet, though her walking was still shaky and unsteady. Before the 4th of July week break, Henry was still content to lay on the floor.
But over this past week, he started showing some physical ability and cognition in the mechanics of crawling. His usual routine was, when on his stomach, he would flail all of his limbs, as if in a swimming motion. I suspect that this was his attempt at crawling, but he lacked the strength and mechanics to put his limbs underneath him for locomotion. Within the last few days, however, he began shifting his hips and using whatever he could of his legs and feet to push himself forward.
He still seems to lack the strength and coordination in his arms, but I can see that it's coming along slowly. He's holding himself up off the floor with his arms extended occasionally now instead of leaning on his elbows. I know his core is strong based on how he's able to "fly" when I hold him up horizontally.
Strength is more than just the physical mass of muscle tissue. Strength also comes from a neurological source, in how the brain sends signals to the muscles to contract. This is among the reasons why a smaller, skinnier person may seem to be as strong or stronger than a large bodybuilder or athlete (and are typically called "wiry"). The more efficiently the brain can communicate with the muscle fibers, the more they can do, in a very simplistic illustration.
This concerned me when discovering the neurological effects of Fragile X and how it relates to low muscle tone. If it's not just a matter of physical underdevelopment but a neurological issue, then developing strength becomes more difficult. It's not just as simple as increased weight-lifting or other strength-training exercises. It becomes a mental exercise...and how does one train a person in mental exercises when that person is not yet consciously communicating?
But to see Henry lifting his butt and scooting over as best as he could to his toys on the floor was a joy to witness.
When Henry sailed past the "typical" milestone of crawling by a certain age without any sign of interest or ability, we became concerned, and the reassurances of "kids develop at their own pace" became more and more hollow. This was exacerbated by watching the other kids in Henry's daycare class, kids who are nearly the same age as him and seeing how they're moving around on their own power.
One is two months older and by the time the school year ended, he was nearly walking. Another is one month older, and she's hauling herself up onto her feet, though her walking was still shaky and unsteady. Before the 4th of July week break, Henry was still content to lay on the floor.
But over this past week, he started showing some physical ability and cognition in the mechanics of crawling. His usual routine was, when on his stomach, he would flail all of his limbs, as if in a swimming motion. I suspect that this was his attempt at crawling, but he lacked the strength and mechanics to put his limbs underneath him for locomotion. Within the last few days, however, he began shifting his hips and using whatever he could of his legs and feet to push himself forward.
He still seems to lack the strength and coordination in his arms, but I can see that it's coming along slowly. He's holding himself up off the floor with his arms extended occasionally now instead of leaning on his elbows. I know his core is strong based on how he's able to "fly" when I hold him up horizontally.
Strength is more than just the physical mass of muscle tissue. Strength also comes from a neurological source, in how the brain sends signals to the muscles to contract. This is among the reasons why a smaller, skinnier person may seem to be as strong or stronger than a large bodybuilder or athlete (and are typically called "wiry"). The more efficiently the brain can communicate with the muscle fibers, the more they can do, in a very simplistic illustration.
This concerned me when discovering the neurological effects of Fragile X and how it relates to low muscle tone. If it's not just a matter of physical underdevelopment but a neurological issue, then developing strength becomes more difficult. It's not just as simple as increased weight-lifting or other strength-training exercises. It becomes a mental exercise...and how does one train a person in mental exercises when that person is not yet consciously communicating?
But to see Henry lifting his butt and scooting over as best as he could to his toys on the floor was a joy to witness.
Tuesday, July 2, 2013
Little Milestones
While we await the official test results from Henry's blood test from about a week and a half ago, I noted with extreme joy yesterday and today when Henry seemed to accomplish something that comes normally to "average" kids much earlier.
Yesterday, when I stopped by my office to pick up the Asus Nexus 7 tablet that work had ordered for me (and was delivered late, late, late Friday so I missed the UPS guy), Henry exhibited the first instance of stranger anxiety, when one of my coworkers came up to say "hi." It wasn't a coincidence because about 5 minutes later when we were out front by the secretary's desk, Henry started whining again when he saw the same coworker. Although I quickly distracted him by flipping him upside down a few times, I noted the significance of this, despite feeling bad for my coworker who made my son cry.
The second thing occurred this morning. While I sat next to his crib as he quietly played, he rolled onto his front and reached up with one hand to the top of the rail. I saw his arm tense, as if he was just trying to figure out how to pull himself up. It only lasted a millisecond and he went back to what he was doing before that, but that was another significant moment in development that I was overjoyed to see.
UPDATE: Forgot to add that, this morning, while I was rubbing his back, he was drawing up his legs into a frog-like position and then kicking back, as if trying to propel himself forward. He hasn't crawled yet, so if this was an indicator, it was nice to see as well. Most of the time, he lays flat on his stomach and thrashes his limbs around like he's swimming. I've surmised that this is his attempt to crawl, but his low muscle tone means that his nerves aren't firing his muscles the way they need to coordinate that movement.
Yesterday, when I stopped by my office to pick up the Asus Nexus 7 tablet that work had ordered for me (and was delivered late, late, late Friday so I missed the UPS guy), Henry exhibited the first instance of stranger anxiety, when one of my coworkers came up to say "hi." It wasn't a coincidence because about 5 minutes later when we were out front by the secretary's desk, Henry started whining again when he saw the same coworker. Although I quickly distracted him by flipping him upside down a few times, I noted the significance of this, despite feeling bad for my coworker who made my son cry.
The second thing occurred this morning. While I sat next to his crib as he quietly played, he rolled onto his front and reached up with one hand to the top of the rail. I saw his arm tense, as if he was just trying to figure out how to pull himself up. It only lasted a millisecond and he went back to what he was doing before that, but that was another significant moment in development that I was overjoyed to see.
UPDATE: Forgot to add that, this morning, while I was rubbing his back, he was drawing up his legs into a frog-like position and then kicking back, as if trying to propel himself forward. He hasn't crawled yet, so if this was an indicator, it was nice to see as well. Most of the time, he lays flat on his stomach and thrashes his limbs around like he's swimming. I've surmised that this is his attempt to crawl, but his low muscle tone means that his nerves aren't firing his muscles the way they need to coordinate that movement.
Monday, June 24, 2013
1st Birthday
On a lighter note, we celebrated Henry's 1st birthday this weekend. Nothing over the top -- he's only 1, for crying out loud! -- but a nice day nonetheless. After his afternoon nap and the torrential downpour that came through, we filled up his kiddie pool to let him splash around for a while.
I took a few pictures with my fancy camera, but the focus was a bit off. Going from a cool, air-conditioned house to hot-and-humid outside made the lenses fog up. And since I'd just woken from a nap myself, my eyes were still a bit foggy since I fell asleep wearing my contact lenses. But I got a few cute shots of Henry in the pool, this one being my favorite:
We took him inside and gave him a bath (so more splashing, but this time with warm water) and got him dressed for cake (and in hindsight, I shouldn't have chosen a long-sleeved t-shirt).
He got a second bath that night.
I took a few pictures with my fancy camera, but the focus was a bit off. Going from a cool, air-conditioned house to hot-and-humid outside made the lenses fog up. And since I'd just woken from a nap myself, my eyes were still a bit foggy since I fell asleep wearing my contact lenses. But I got a few cute shots of Henry in the pool, this one being my favorite:
We took him inside and gave him a bath (so more splashing, but this time with warm water) and got him dressed for cake (and in hindsight, I shouldn't have chosen a long-sleeved t-shirt).
He got a second bath that night.
Waiting
Last Wednesday, we took Henry in to meet with a geneticist to discuss his development, progress, and evaluate the necessity for a blood test. They attempted to draw blood from him, but his veins weren't cooperating so they ended up sticking him twice to no avail, all while he's screaming and looking up at Lori with that look of "why can't you make this stop?"
It was heartbreaking.
The nurse came back with an order to make an appointment for the next day or two to try again. We got him calmed down and packed up, and headed back to the front desk. That was when the fun of misaligned communication & training in the medical administration field reared its face.
I handed the draw order to the person at the desk, assuming that she would be able to read the order and understand that we need an appointment to come back. We were immediately met with a "we don't make appointments here. You have to call this number and they'll schedule it."
I politely argued that the nurse in the back personally stated that we were to come back up front to make arrangements for "The Nurse" to do the blood draw. The woman with whom I was speaking even turned to her colleague to ask what she should do, and her colleague even confirmed that I needed to possibly go downtown for additional procedures, and that because the doctor had gone to lunch, they couldn't confirm the order right away.
I nearly snapped, and Lori saw the tension in me reach stratospheric levels. I again reiterated that the nurse who tried to draw Henry's blood specifically said we needed to make this appointment that day so that I could come back to that facility. The woman said she would go talk to her.
5 minutes later, she returned and wordlessly began typing at her terminal. We got an appointment for the next day at 3:20pm. I curtly thanked them and we left.
That was when Lori mentioned that my tolerance limit for miscommunications was at an end, despite my traditionally superhuman levels of patience.
I returned the next day with Henry, determined to put the previous day behind me and be more pleasant. This experience went much more smoothly as the pediatric nurse was able to draw Henry's blood much more easily. Sure, he screamed, but it subsided rather quickly after we were done.
So his samples are off to testing, and we wait another week or so to confirm that he has Fragile X. At this rate, I can't realistically or logically believe it's anything else, especially after speaking with the geneticist and the genetic counselor.
It was heartbreaking.
The nurse came back with an order to make an appointment for the next day or two to try again. We got him calmed down and packed up, and headed back to the front desk. That was when the fun of misaligned communication & training in the medical administration field reared its face.
I handed the draw order to the person at the desk, assuming that she would be able to read the order and understand that we need an appointment to come back. We were immediately met with a "we don't make appointments here. You have to call this number and they'll schedule it."
I politely argued that the nurse in the back personally stated that we were to come back up front to make arrangements for "The Nurse" to do the blood draw. The woman with whom I was speaking even turned to her colleague to ask what she should do, and her colleague even confirmed that I needed to possibly go downtown for additional procedures, and that because the doctor had gone to lunch, they couldn't confirm the order right away.
I nearly snapped, and Lori saw the tension in me reach stratospheric levels. I again reiterated that the nurse who tried to draw Henry's blood specifically said we needed to make this appointment that day so that I could come back to that facility. The woman said she would go talk to her.
5 minutes later, she returned and wordlessly began typing at her terminal. We got an appointment for the next day at 3:20pm. I curtly thanked them and we left.
That was when Lori mentioned that my tolerance limit for miscommunications was at an end, despite my traditionally superhuman levels of patience.
I returned the next day with Henry, determined to put the previous day behind me and be more pleasant. This experience went much more smoothly as the pediatric nurse was able to draw Henry's blood much more easily. Sure, he screamed, but it subsided rather quickly after we were done.
So his samples are off to testing, and we wait another week or so to confirm that he has Fragile X. At this rate, I can't realistically or logically believe it's anything else, especially after speaking with the geneticist and the genetic counselor.
Wednesday, June 12, 2013
One Step Closer
We met with the assessment folks at the county's intermediate school district for an evaluation on Henry. After two hours of assessment, evaluation, questions, and observations, the result was that Henry -- at 12 months old chronologically -- is at about a 9-month level for motor skills and 2-4 months for social/behavioral.
This essentially means that my one-year-old son is approximately at the same developmental level as a 2-4 month old infant, which explains why he's calmed down more readily by cradling and rocking as well as a lack of mimicry, self-initiated communication, and reciprocal play.
That's a hard pill to swallow.
But we were concerned enough as parents to get him checked out. It wasn't good news, but it's better than just hanging back in denial and hoping that he "gets better" on his own, and letting this persist for more time. Time that could be better spent getting him the help that we all need to get him up to speed.
This essentially means that my one-year-old son is approximately at the same developmental level as a 2-4 month old infant, which explains why he's calmed down more readily by cradling and rocking as well as a lack of mimicry, self-initiated communication, and reciprocal play.
That's a hard pill to swallow.
But we were concerned enough as parents to get him checked out. It wasn't good news, but it's better than just hanging back in denial and hoping that he "gets better" on his own, and letting this persist for more time. Time that could be better spent getting him the help that we all need to get him up to speed.
Monday, June 10, 2013
Sanctimonious Rage Parent
Ever since we discovered we were pregnant, we made a pact not to become those sanctimonious "the world should bend for our precious" type of parents. They're annoying, and we wanted to be anything but annoying.
If our kids have a meltdown in a restaurant, that's our fault, not the restaurant's and the other patrons shouldn't have to suffer because we're either too oblivious to our kids' screaming, or we haughtily expect everyone else to bask in the glory of our children.
But despite that, I had a Sanctimonious Rage Parent moment this weekend. I recognized it right after it happened, and I felt a little bad, although I at least restrained myself not to have a meltdown myself.
Since Henry's surgery on Wednesday, he hasn't been able to burn off his usual excess energy by jumping and bouncing, so he's been rather anxious and antsy. Also, weekends tend to be pretty bad for me, food-wise, because the distractions at home render it difficult to get my usual 5-7 meals in. So on Sunday, my first meal was around 10:00am and that was a BLT.
(on normal days, I'd have already had two meals by that time and looking for my third)
So we went to a local outdoor mall, both to get Henry some distraction and fresh air, and a small snack for me. After wandering the loop twice, we headed to California Pizza Kitchen, which had patio seating. Maybe a small pizza and a beer would be good and not too filling so I can still have dinner.
This CPK has a revolving door, which is of course terrible for anyone who isn't bipedal. The sign on the regular door read "Please Use Revolving Door." I ignored it and just opened the stupid door to push Henry's stroller through. We asked if we could sit outside, and the host boy said that we could leave the stroller behind the host stand. Given that Henry had been tending to get bored and anxious when sitting in a restaurant highchair lately, we asked that we keep him in his stroller for sake of familiarity for him.
Then the kid said that they don't allow strollers onto the patio.
Lori picked up on my flash of rage, although I kept calm on the exterior. Disappointed, I said "oh. Okay, never mind then," and we turned around and left.
As we were walking out to the car, that was when I came to this realization that I had just had my first Sanctimonious Rage Parent moment. I get that it's not the host kid's fault, and I get that it's probably a safety issue not to allow strollers into the main restaurant. But that intellectual approach didn't stop my kneejerk reaction of being offended.
And I knew I had no right to be offended; again, safety issues and the world does not revolve around Henry or us.
If our kids have a meltdown in a restaurant, that's our fault, not the restaurant's and the other patrons shouldn't have to suffer because we're either too oblivious to our kids' screaming, or we haughtily expect everyone else to bask in the glory of our children.
But despite that, I had a Sanctimonious Rage Parent moment this weekend. I recognized it right after it happened, and I felt a little bad, although I at least restrained myself not to have a meltdown myself.
Since Henry's surgery on Wednesday, he hasn't been able to burn off his usual excess energy by jumping and bouncing, so he's been rather anxious and antsy. Also, weekends tend to be pretty bad for me, food-wise, because the distractions at home render it difficult to get my usual 5-7 meals in. So on Sunday, my first meal was around 10:00am and that was a BLT.
(on normal days, I'd have already had two meals by that time and looking for my third)
So we went to a local outdoor mall, both to get Henry some distraction and fresh air, and a small snack for me. After wandering the loop twice, we headed to California Pizza Kitchen, which had patio seating. Maybe a small pizza and a beer would be good and not too filling so I can still have dinner.
This CPK has a revolving door, which is of course terrible for anyone who isn't bipedal. The sign on the regular door read "Please Use Revolving Door." I ignored it and just opened the stupid door to push Henry's stroller through. We asked if we could sit outside, and the host boy said that we could leave the stroller behind the host stand. Given that Henry had been tending to get bored and anxious when sitting in a restaurant highchair lately, we asked that we keep him in his stroller for sake of familiarity for him.
Then the kid said that they don't allow strollers onto the patio.
Lori picked up on my flash of rage, although I kept calm on the exterior. Disappointed, I said "oh. Okay, never mind then," and we turned around and left.
As we were walking out to the car, that was when I came to this realization that I had just had my first Sanctimonious Rage Parent moment. I get that it's not the host kid's fault, and I get that it's probably a safety issue not to allow strollers into the main restaurant. But that intellectual approach didn't stop my kneejerk reaction of being offended.
And I knew I had no right to be offended; again, safety issues and the world does not revolve around Henry or us.
Saturday, June 8, 2013
How Do You Say "Fragile X" in Japanese?
Or any foreign language, for that matter?
I am 100% Japanese by heritage. My parents immigrated to the US in the '70s and then I came along almost immediately thereafter. They tried very hard to speak only Japanese to me as I grew up so I actually knew no English on my first day of school. In fact, my cousins in Japan who learned English in school knew more English than I did, the kid who lived in America and was born there.
Last fall, we moved my mother in with us after she had retired and her house started falling apart. That turned out to be a boon for the family because not only did I feel better know that my technically-senior-citizen mother wasn't living alone 45 minutes away, but she now gets unfettered access to her grandson and occasionally, we get a de facto babysitter.
It also means that I got to rebuild my Japanese vocabulary, which had gotten rusty over the years. But that also means that medical terms that affect the kids -- her grandchildren -- have to be either translated or at the very least explained in a different language.
Now, my mother isn't completely helpless with the English language. Before she retired, she worked for well over 25 years for an international commodity brokerage firm, so her English -- while heavily accented and somewhat broken -- is perfectly serviceable. But medical or scientific concepts were certainly not part of her usual lexicon, and while she understands medical terminology if they're presented in Japanese, the disconnect occurs when medical terms are stated in English without knowing what the Japanese equivalent is.
She understands what "autism" is, even when said in English. But rarer or less popular conditions like Fragile X is a bit more of a mindnumber.
Since she's a part of the family, since these are her grandkids that we're talking about, since she lives in our home, my mom has been paying close attention to what we'd need to expect with the kids and also digging for more information. I love my mother -- she takes charge just enough to contribute to the child-rearing without interfering, acknowledging that despite her own years of experiencing raising me and my sister, Lori and I are still Henry's parents and the parents of our new baby to come. I suspect that this level of deference isn't common, especially among multi-generational households.
Nonetheless, when we went for the tests, we had to tell my mom something, so I tried my best to explain what was going on, despite not knowing the exact terms. And as we were talking tonight in the living room, we talked about what Fragile X is, and the fact that statistically, there's no way that Fragile X is a new thing (newly discovered, perhaps, but there's no way that it hasn't been around for decades before its discovery).
So I started searching for Fragile X in Japanese, and while I couldn't find any direct translation, I did stumble across some abstracts of scholarly articles written about studies on Fragile X conducted by Japanese universities.....from the late '80s.
That makes me wonder, therefore, a few things. First, was 1991 really the first year of discovery of FMR1? And second, if Japanese researchers knew about FX, what does that mean for the usual homogeneous society of Japan, where congenital disabilities of any kind tend to be culturally shunned, and the kids who do have Fragile X, Down Syndrome, or other hereditary conditions?
Since I'm unable -- yet -- to find a neat and tidy term that translates Fragile X from English to Japanese, that got me to wondering how medical conditions are translated into other languages.
On Wednesday, when we were at the hospital for Henry's surgical procedure, there was a Latino family, who was apparently getting some either bad or potentially bad news from the surgeon, who was explaining everything in Spanish. I understand just enough Spanish to get by, but not at conversational speeds, and certainly not in a situation where I'd have to rudely eavesdrop. Nonetheless, we surmised that it was unhappy news, because after the doctor left the waiting room, the mother started sobbing. Lori even went over to give her the box of tissues. It was heartbreaking because regardless of language or culture, no parent wants to get bad news from the surgeon regarding their baby's procedure.
Medical conditions are universal, but speaking between languages about uncommon concepts is tough. So now, with my mother wanting to know what's going with her grandkids so that she can help out in appropriate ways, we have to figure out how to translate the needs of the kids from English to Japanese and vice versa.
Thus, I wonder how medical concepts do get translated from one language to another. Are there Fragile X support groups and societies in Japan? French Canada? Belgium? Italy? And what is it called there?
I am 100% Japanese by heritage. My parents immigrated to the US in the '70s and then I came along almost immediately thereafter. They tried very hard to speak only Japanese to me as I grew up so I actually knew no English on my first day of school. In fact, my cousins in Japan who learned English in school knew more English than I did, the kid who lived in America and was born there.
Last fall, we moved my mother in with us after she had retired and her house started falling apart. That turned out to be a boon for the family because not only did I feel better know that my technically-senior-citizen mother wasn't living alone 45 minutes away, but she now gets unfettered access to her grandson and occasionally, we get a de facto babysitter.
It also means that I got to rebuild my Japanese vocabulary, which had gotten rusty over the years. But that also means that medical terms that affect the kids -- her grandchildren -- have to be either translated or at the very least explained in a different language.
Now, my mother isn't completely helpless with the English language. Before she retired, she worked for well over 25 years for an international commodity brokerage firm, so her English -- while heavily accented and somewhat broken -- is perfectly serviceable. But medical or scientific concepts were certainly not part of her usual lexicon, and while she understands medical terminology if they're presented in Japanese, the disconnect occurs when medical terms are stated in English without knowing what the Japanese equivalent is.
She understands what "autism" is, even when said in English. But rarer or less popular conditions like Fragile X is a bit more of a mindnumber.
Since she's a part of the family, since these are her grandkids that we're talking about, since she lives in our home, my mom has been paying close attention to what we'd need to expect with the kids and also digging for more information. I love my mother -- she takes charge just enough to contribute to the child-rearing without interfering, acknowledging that despite her own years of experiencing raising me and my sister, Lori and I are still Henry's parents and the parents of our new baby to come. I suspect that this level of deference isn't common, especially among multi-generational households.
Nonetheless, when we went for the tests, we had to tell my mom something, so I tried my best to explain what was going on, despite not knowing the exact terms. And as we were talking tonight in the living room, we talked about what Fragile X is, and the fact that statistically, there's no way that Fragile X is a new thing (newly discovered, perhaps, but there's no way that it hasn't been around for decades before its discovery).
So I started searching for Fragile X in Japanese, and while I couldn't find any direct translation, I did stumble across some abstracts of scholarly articles written about studies on Fragile X conducted by Japanese universities.....from the late '80s.
That makes me wonder, therefore, a few things. First, was 1991 really the first year of discovery of FMR1? And second, if Japanese researchers knew about FX, what does that mean for the usual homogeneous society of Japan, where congenital disabilities of any kind tend to be culturally shunned, and the kids who do have Fragile X, Down Syndrome, or other hereditary conditions?
Since I'm unable -- yet -- to find a neat and tidy term that translates Fragile X from English to Japanese, that got me to wondering how medical conditions are translated into other languages.
On Wednesday, when we were at the hospital for Henry's surgical procedure, there was a Latino family, who was apparently getting some either bad or potentially bad news from the surgeon, who was explaining everything in Spanish. I understand just enough Spanish to get by, but not at conversational speeds, and certainly not in a situation where I'd have to rudely eavesdrop. Nonetheless, we surmised that it was unhappy news, because after the doctor left the waiting room, the mother started sobbing. Lori even went over to give her the box of tissues. It was heartbreaking because regardless of language or culture, no parent wants to get bad news from the surgeon regarding their baby's procedure.
Medical conditions are universal, but speaking between languages about uncommon concepts is tough. So now, with my mother wanting to know what's going with her grandkids so that she can help out in appropriate ways, we have to figure out how to translate the needs of the kids from English to Japanese and vice versa.
Thus, I wonder how medical concepts do get translated from one language to another. Are there Fragile X support groups and societies in Japan? French Canada? Belgium? Italy? And what is it called there?
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