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.
Sunday, February 9, 2014
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.
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.
Tuesday, January 14, 2014
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
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.
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
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.
Monday, December 9, 2013
Sitting Up
Henry achieved his milestone of getting into sitting position from his stomach.
One of the features of Fragile X is low muscle tone. This isn't the "muscle tone" of the fitness marketing industry that actually means "low body fat percentage achieved by wasting time lifting 5 lb. dumbbells." The term "muscle tone" is derived from the word tonus, which is a state of contraction for the muscle.
FXS's neurological component means that Henry's muscular strength lags behind children the same age as him who aren't affected. The nervous system has as much to do with strength as the physical size of the muscle.
Henry lacks upper body strength, which is why you see him crawling on the floor using his arms instead of on hands and knees. But through the last few weeks of physical therapy, we've been slowly building his upper body strength, and the result is the above video.
I first noticed him do this last week when after a long crying bout in bed, I went to check in on him and found him actually sitting up in his crib. This was significant because the typical milestones have this tabbed at around 6-9 months of age. Earlier this week, when I saw him drag himself over to where I was feeding Evie then saw him sitting, I nearly cried.
The PT has clearly been helping. He's getting an intense workout that we normally wouldn't have known about. And as further aggravation with our pediatrician's office, it's a workout that he wouldn't have gotten through them, either -- they seem to be more content to cycle through well-baby visits and the occasional colds.
They're not equipped to handle special cases that fall outside the norm.
In fact, when we stopped by there this morning after Henry's PT session to ask them for a prescription for orthotics for his feet, they seemed ill-equipped to process the fact that we went to the county's early intervention program of our own volition rather than getting the prescription (because again, we wouldn't have gotten one because the doctors there don't seem to be on the ball about special needs).
So anyway, Henry has about a year's worth of physical development to catch up on, and then to keep up with the expected development for kids typical of his age.
But with moments like the video above and also this morning when he pulled himself onto his knees then onto his feet are the significant rewards. I'm simultaneously overjoyed to witness these milestones as well as aggravated that we have to make such an effort, that we couldn't have had just a typical run of things with the kids.
One of the features of Fragile X is low muscle tone. This isn't the "muscle tone" of the fitness marketing industry that actually means "low body fat percentage achieved by wasting time lifting 5 lb. dumbbells." The term "muscle tone" is derived from the word tonus, which is a state of contraction for the muscle.
FXS's neurological component means that Henry's muscular strength lags behind children the same age as him who aren't affected. The nervous system has as much to do with strength as the physical size of the muscle.
Henry lacks upper body strength, which is why you see him crawling on the floor using his arms instead of on hands and knees. But through the last few weeks of physical therapy, we've been slowly building his upper body strength, and the result is the above video.
I first noticed him do this last week when after a long crying bout in bed, I went to check in on him and found him actually sitting up in his crib. This was significant because the typical milestones have this tabbed at around 6-9 months of age. Earlier this week, when I saw him drag himself over to where I was feeding Evie then saw him sitting, I nearly cried.
The PT has clearly been helping. He's getting an intense workout that we normally wouldn't have known about. And as further aggravation with our pediatrician's office, it's a workout that he wouldn't have gotten through them, either -- they seem to be more content to cycle through well-baby visits and the occasional colds.
They're not equipped to handle special cases that fall outside the norm.
In fact, when we stopped by there this morning after Henry's PT session to ask them for a prescription for orthotics for his feet, they seemed ill-equipped to process the fact that we went to the county's early intervention program of our own volition rather than getting the prescription (because again, we wouldn't have gotten one because the doctors there don't seem to be on the ball about special needs).
So anyway, Henry has about a year's worth of physical development to catch up on, and then to keep up with the expected development for kids typical of his age.
But with moments like the video above and also this morning when he pulled himself onto his knees then onto his feet are the significant rewards. I'm simultaneously overjoyed to witness these milestones as well as aggravated that we have to make such an effort, that we couldn't have had just a typical run of things with the kids.
Wednesday, December 4, 2013
All Too Easy
Although there's no official diagnosis, it's clear that Evie has torticollis, just like Henry did. We noticed that her head tilts toward her left shoulder and she prefers turning her head over her right, which is a significant indication.
For Henry, it took an early intervention specialist at his daycare last year to notice it and to make the suggestion that we bring it up with our pediatrician (who never noticed). We did so, and our pediatrician subsequently wrote a prescription for a referral to a physical therapist. The therapy lasted about two and a half months, going from three times a week to eventually once a week as Henry's neck got stronger and more straight.
Since we're familiar with the symptoms of torticollis, we noticed it in Evie right away. Which means we're going to have to do the same exercises with her that we had to do with Henry last year.
Because things have been so simple and easy so far that we just needed something else to worry about.
On a more serious note, here's the difference. The left picture shows Henry's torticollis before therapy, and the right picture is after several weeks (though only soon after therapy ended and before he gained even more strength and flexibility in his neck to even out his head position).
Note not just the tilt of his head, but the shape of his jawline. The tilt of the head flattened his face on the left side, and got to the point where even the shape of his eye was affected. You can still see remnants of that misshapenness in the "after" photo, where his left eye seems narrower.
Today, his face is much more rounded, but if you look very closely, you can see that his left eye is still narrower than his right.
This is an awesome photo of him after he just woke up. He wasn't very thrilled with me.
So we'll have to do a bunch of manipulation with Evie's head and neck now. Whether we need to go to a physical therapist for her for this, I don't know. But the 3-a-week is probably going to have to start, because we didn't have enough to worry about already.
For Henry, it took an early intervention specialist at his daycare last year to notice it and to make the suggestion that we bring it up with our pediatrician (who never noticed). We did so, and our pediatrician subsequently wrote a prescription for a referral to a physical therapist. The therapy lasted about two and a half months, going from three times a week to eventually once a week as Henry's neck got stronger and more straight.
Since we're familiar with the symptoms of torticollis, we noticed it in Evie right away. Which means we're going to have to do the same exercises with her that we had to do with Henry last year.
Because things have been so simple and easy so far that we just needed something else to worry about.
On a more serious note, here's the difference. The left picture shows Henry's torticollis before therapy, and the right picture is after several weeks (though only soon after therapy ended and before he gained even more strength and flexibility in his neck to even out his head position).
Today, his face is much more rounded, but if you look very closely, you can see that his left eye is still narrower than his right.
So we'll have to do a bunch of manipulation with Evie's head and neck now. Whether we need to go to a physical therapist for her for this, I don't know. But the 3-a-week is probably going to have to start, because we didn't have enough to worry about already.
Monday, November 18, 2013
Things I Took for Granted Before Kids
Finishing a whole cup of hot coffee.
"Hey, you wanna go get a drink? I know we have some beer in fridge but....aw, let's just go!"
"It's 10 o'clock. I think I'll get out of bed."
"Hey, you wanna go get a drink? I know we have some beer in fridge but....aw, let's just go!"
"It's 10 o'clock. I think I'll get out of bed."
Sunday, November 17, 2013
Evie's Here
Little Evelyn was born yesterday around 8:00am. Her birth went much more smoothly than Henry's -- I think the records that the hospital had from Henry's birth (and what they did wrong) stood out so the staff took a little more care and caution this time.
But this beautiful little girl is currently napping across my stomach as I type on the laptop. And I have to admit that, knowing she has the full mutation of FXS, I've caught myself looking for telltale signs since yesterday morning.
I also feel it's horribly unfair to her, but I can't seem to help it. I look at her palate when she cries or yawns, I look at her ears. Her ears aren't as prominent as Henry's, and neither of them have the elongated face that's characteristic of FXS.
But when I do realize what I'm doing, I stop. I can't condemn this little girl into a predetermined path just because I know too much for my own good. Just as I can't predict how Henry's life will turn out, I can't shoehorn Evie into an overly cautious path just because of the medical information that floats through my head.
Just as I'm quick to criticize medical professionals for relying on statistics too much to determine a course of action or inaction, I admonish myself for doing the same to this little girl who's barely two days old.
I then remember to hang back and put away the technical manual on babies. I give her a smile and just enjoy the presence of this little squeaky thing with the cutest cry that sounds like a baby panda.
But this beautiful little girl is currently napping across my stomach as I type on the laptop. And I have to admit that, knowing she has the full mutation of FXS, I've caught myself looking for telltale signs since yesterday morning.
I also feel it's horribly unfair to her, but I can't seem to help it. I look at her palate when she cries or yawns, I look at her ears. Her ears aren't as prominent as Henry's, and neither of them have the elongated face that's characteristic of FXS.
But when I do realize what I'm doing, I stop. I can't condemn this little girl into a predetermined path just because I know too much for my own good. Just as I can't predict how Henry's life will turn out, I can't shoehorn Evie into an overly cautious path just because of the medical information that floats through my head.
Just as I'm quick to criticize medical professionals for relying on statistics too much to determine a course of action or inaction, I admonish myself for doing the same to this little girl who's barely two days old.
I then remember to hang back and put away the technical manual on babies. I give her a smile and just enjoy the presence of this little squeaky thing with the cutest cry that sounds like a baby panda.
Tuesday, November 12, 2013
Another Chapter in "Fragile What?"
Yesterday was Henry's surgery to get tubes in his ears. One of the many nurses came up for her turn to ask the same questions -- his name? his DOB? do you know why we're here? are you his parents? is he on any medication? -- and got to the part where she had to confirm any other issues or conditions not covered in the "normal" range of questions. As such, she was ready to blow past the question and move on to the next step.
The question was "any other issues? No developmental delays, he's walking and crawling....."
*sudden screech of tires*
Us: "Uh, actually, yes. He has Fragile X Syndrome, so he's got some developmental delays."
*pause*
The nurse was clearly not expecting anyone to actually answer this question in the positive, so her reflexive routine and memorized script were thrown off.
Her: "Oh, is that the one where his bones can break easily.....?"
*brief stunned silence -- tide goes in, tide goes out, you can't explain that *
It's getting to the point where we're encountering so many medical professionals who don't know what Fragile X is or have heard of it that I'm tempted to carry a box of pamphlets with me so that the people who are being tasked (and paid) to provide care for my children get educated in what to expect and how to deal with it.
I also don't know if my attitude is a result of looking to pick a fight, of expecting to have to explain FXS to people who, one would think, should know more than I do. But so far, the percentages are not in favor of the medical professionals.
The question was "any other issues? No developmental delays, he's walking and crawling....."
*sudden screech of tires*
Us: "Uh, actually, yes. He has Fragile X Syndrome, so he's got some developmental delays."
*pause*
The nurse was clearly not expecting anyone to actually answer this question in the positive, so her reflexive routine and memorized script were thrown off.
Her: "Oh, is that the one where his bones can break easily.....?"
*brief stunned silence -- tide goes in, tide goes out, you can't explain that *
What we said:My private thought was rather sarcastic, so I was glad that I was looking down and playing with Henry instead while Lori handled the explanation.
"No, it's a genetic condition that's related to autism, though he's not yet been diagnosed as autistic...." (and then continued with the usual litany of FXS characteristics)
What I thought in my head:
"No, sweetheart, that's osteogenesis imperfecta; just because the word 'fragile' is involved doesn't make a leap to a conclusion appropriate."
It's getting to the point where we're encountering so many medical professionals who don't know what Fragile X is or have heard of it that I'm tempted to carry a box of pamphlets with me so that the people who are being tasked (and paid) to provide care for my children get educated in what to expect and how to deal with it.
I also don't know if my attitude is a result of looking to pick a fight, of expecting to have to explain FXS to people who, one would think, should know more than I do. But so far, the percentages are not in favor of the medical professionals.
Sunday, November 3, 2013
FXAM
Yesterday, we went to our first meeting with the Fragile X Association of Michigan. I didn't know what to expect, really, because it was my first time attending any kind of a support-group type of meeting. And calling it a "support group" is simultaneously accurate and inaccurate.
It's a support group in that everyone there is a parent of a child with Fragile X Syndrome, so they get it. Even though every child is different, there are and will be aspects that set the kids apart from the track of typical kids, or kids who trundle along the average development path.
But at the same time, it's also not quite a support group in that stereotypical image of a 12-step program or "Anything Anonymous" type of group. We're not there to say that it's been two weeks since our last sensory-overload public meltdown and yay, congratulations to us for achieving that milestone.
No, things like that don't exist.
Nevertheless, Lori and I immediately felt like we belonged there. It was a small group that night, and the president of the association figured it was because of the Michigan-MSU game, but it was beneficial to us because it allowed us to experience the group meeting without feeling overwhelmed by the sheer number of people.
It allowed us to get comfortable with the group and what others are dealing with and that we aren't alone in this. There are other families out there who are struggling with acceptance and acknowledgement, fighting with doctors and educational institutions to take our children's needs more seriously, just as we are.
The very things I was frustrated with, when doctors are confronted with a child's condition and development schedule that don't fit neatly inside prescribed compartments of How Things Should Be. That came as a huge relief, to actually meet people in real life who truly understand what we're going through and what is in store for us in the future.
The group won't meet again until February, so we'll still be the New Family then. But by getting our feet wet, I think we'll be a bit more comfortable next time now that we know where the meetings are, how to get inside, and what to expect.
It was nice to be able to talk and listen to people who understand where we are without having to hear "fragile what?" or others making presumptions that "oh, he'll get there! In the meantime, you should do this, that, and this, too!!! My kids LOOOOOOVE it...."
(yeah, your kids don't have FXS or any other genetic disorder that'll affect them for the rest of their lives)
It was nice not to have to run that parenthetical sentence in my head from behind a plastic smile and nod.
It's a support group in that everyone there is a parent of a child with Fragile X Syndrome, so they get it. Even though every child is different, there are and will be aspects that set the kids apart from the track of typical kids, or kids who trundle along the average development path.
But at the same time, it's also not quite a support group in that stereotypical image of a 12-step program or "Anything Anonymous" type of group. We're not there to say that it's been two weeks since our last sensory-overload public meltdown and yay, congratulations to us for achieving that milestone.
No, things like that don't exist.
Nevertheless, Lori and I immediately felt like we belonged there. It was a small group that night, and the president of the association figured it was because of the Michigan-MSU game, but it was beneficial to us because it allowed us to experience the group meeting without feeling overwhelmed by the sheer number of people.
It allowed us to get comfortable with the group and what others are dealing with and that we aren't alone in this. There are other families out there who are struggling with acceptance and acknowledgement, fighting with doctors and educational institutions to take our children's needs more seriously, just as we are.
The very things I was frustrated with, when doctors are confronted with a child's condition and development schedule that don't fit neatly inside prescribed compartments of How Things Should Be. That came as a huge relief, to actually meet people in real life who truly understand what we're going through and what is in store for us in the future.
The group won't meet again until February, so we'll still be the New Family then. But by getting our feet wet, I think we'll be a bit more comfortable next time now that we know where the meetings are, how to get inside, and what to expect.
It was nice to be able to talk and listen to people who understand where we are without having to hear "fragile what?" or others making presumptions that "oh, he'll get there! In the meantime, you should do this, that, and this, too!!! My kids LOOOOOOVE it...."
(yeah, your kids don't have FXS or any other genetic disorder that'll affect them for the rest of their lives)
It was nice not to have to run that parenthetical sentence in my head from behind a plastic smile and nod.
Friday, October 25, 2013
The Home Stretch
We're at 36 weeks now. If she needed to come now, Evie would likely be fairly okay.
I don't know if we would be, but physically, Little Miss E should be fine with some extra medical care.
We submitted our cancellation notice to daycare to end Henry's time there. It's a bit bittersweet because we'd gotten used to the routine, and Henry gets a lot of socialization time there. Plus, with the daycare facility being a part of my employer's organization, I had the option of just dropping in to see him on occasion, especially if I had work to do in that building.
There's a mom-to-mom sale at Gibraltar Trade Center this weekend, so we're thinking of hitting that to look for some supplies and equipment for Evie, particularly a bassinet for her to sleep in. We have Henry's old rocker-sleeper as well as a small cradle-like thing that came with the playpen that can be used in a pinch, but both of them are pretty low to the ground. They'd be more appropriate for afternoon naps rather than middle-of-the-night when we're trying to sleep.
I think we'll be okay. To say I'm not nervous would be a lie, though.
I don't know if we would be, but physically, Little Miss E should be fine with some extra medical care.
We submitted our cancellation notice to daycare to end Henry's time there. It's a bit bittersweet because we'd gotten used to the routine, and Henry gets a lot of socialization time there. Plus, with the daycare facility being a part of my employer's organization, I had the option of just dropping in to see him on occasion, especially if I had work to do in that building.
There's a mom-to-mom sale at Gibraltar Trade Center this weekend, so we're thinking of hitting that to look for some supplies and equipment for Evie, particularly a bassinet for her to sleep in. We have Henry's old rocker-sleeper as well as a small cradle-like thing that came with the playpen that can be used in a pinch, but both of them are pretty low to the ground. They'd be more appropriate for afternoon naps rather than middle-of-the-night when we're trying to sleep.
I think we'll be okay. To say I'm not nervous would be a lie, though.
Tuesday, October 8, 2013
Correlation Leads to Consternation
A seemingly common theme purported by medical experts is that there is no scientifically proven correlation between teething and the collective symptoms of runny noses, fevers, and general crankiness.
This is the problem when one's conclusions are based on statistical analysis rather than a fussy baby that one sees every day.
While there may be a whole mean/median thing to it, I believe there is a correlation. Especially when the coinciding occurrences of fevers, runny noses, and the vomiting that comes from not feeling good and possible nasal drainage going into the stomach curiously seem to accompany new teeth.
Each. Time.
So based on such statistical evidence, my son has been catching a cold and then getting a new tooth as a result every few months for over a year. Got it.
In other news that seems unrelated but will eventually converge back into the central point, we had an appointment with an otolaryngologist. Henry will be scheduled for tubes in his ears because he's been getting ear infections pretty much non-stop since February/March. It's been so frequent that we know how to store amoxicillin and cefdinir (amoxi in the fridge, cef at room temp) now without the pharmacy tech having to explain it to us.
While the procedure won't eliminate ear infections, it will reduce the frequency, and that alone is a vast improvement.
How this relates to the central theme of selective reliance on medical professionals' opinions and scientific evidence is this. We have thus far experienced more encounters with medical professionals who don't seem to be as qualified or prepared to deal with children who fall outside the "Normal" spectrum.
And by "normal," I mean kids who fall around the 50th percentile in everything and reach the vast majority of developmental milestones on time or even earlier.
I understand that doctors see a lot of patients every day, so there's little time to dedicate to special cases. I get it. In my line of work, I have little to no time to deal with the Linux operating system because the majority of my work centers around the Windows world, and to a smaller extent, Macs. So if someone comes to me with a Linux problem, I have to refer them to a Linux expert.
But that comes back to the whole irritation that I've had lately with medical professionals. So my kid doesn't fall into neat and tidy statistical norms. I get that. But at least take our concerns a bit more seriously than floundering around in the shoals of Not Knowing How to Deal With This.
I appreciated that the otolaryngologist at least looked up what Fragile X Syndrome is and its effects and symptoms minutes before coming into the exam room to talk to me, but I couldn't help feeling a bit put off by that. This was apparently the first time he'd ever heard of it or had to look seriously into it because voila, here's a patient in his facility who has this mythical condition.
I appreciate that research studies have carefully analyzed results to determine that there is not strong enough evidence to support a correlation between teething and fever/runny nose/lethargy/nausea. Yet, despite the lack of statistical evidence, there is anecdotal evidence that it's a possibility or else, would it really be that popular an Internet search?
I'm a fan of statistics, logic, and evidence. But sometimes, there will be enough observations that fall outside the normal distribution, outside of the n samples, and well into the alpha range (sorry; getting all stats-happy here). The point is that the numbers on the sheet of paper that studied maybe 300-1000 children don't always adequately explain the one kid sitting and crying in front of you, who has shown an actual observable linked pattern.
I don't expect scientists to be watching Henry every day for the last 15-16 months to develop their hypotheses (and I'd be a little creeped out if they did). All I ask is for medical professionals to maybe take me slightly more seriously, even if they're constantly deluged by hyperactive hysterical hypochondriac parents more frequently than they see me.
Maybe even let me finish a sentence. That'd be nice.
I'd like a medical professional to be able to get to know us just a little bit more to understand that we're trying not to be Those Parents.
I try to research problems with my child before approaching the doctor so that I know what information they need. I troubleshoot professionally, and while perhaps a bit cold to consider it in these terms, I am essentially troubleshooting my boy.
One night in urgent care, I gave the attending physician the level of detail and observations on Henry to where he asked if I was a doctor. No, I've just answered the same questions from doctors enough times to where I know what questions are going to come next. I also questioned the nurse's skills in weighing the boy when she declared him to be about 6 lbs. heavier than what I knew him to be.
It was from that moment that I resolved not to be so damn passive.
I have the utmost respect for medical professionals, but it became clear that they're also very prone to making mistakes and that rolling over when I know they've made a mistake just because I'm intimidated by their educational credentials and professional prestige is a bad way to go. So there's the constant course correction I'm having to make, that consternation.
Balancing their medical expertise with the expertise I have in my son. How much do I listen to, and how much do I ignore. Which battles are worth fighting and for how long.
This is the problem when one's conclusions are based on statistical analysis rather than a fussy baby that one sees every day.
While there may be a whole mean/median thing to it, I believe there is a correlation. Especially when the coinciding occurrences of fevers, runny noses, and the vomiting that comes from not feeling good and possible nasal drainage going into the stomach curiously seem to accompany new teeth.
Each. Time.
So based on such statistical evidence, my son has been catching a cold and then getting a new tooth as a result every few months for over a year. Got it.
In other news that seems unrelated but will eventually converge back into the central point, we had an appointment with an otolaryngologist. Henry will be scheduled for tubes in his ears because he's been getting ear infections pretty much non-stop since February/March. It's been so frequent that we know how to store amoxicillin and cefdinir (amoxi in the fridge, cef at room temp) now without the pharmacy tech having to explain it to us.
While the procedure won't eliminate ear infections, it will reduce the frequency, and that alone is a vast improvement.
How this relates to the central theme of selective reliance on medical professionals' opinions and scientific evidence is this. We have thus far experienced more encounters with medical professionals who don't seem to be as qualified or prepared to deal with children who fall outside the "Normal" spectrum.
And by "normal," I mean kids who fall around the 50th percentile in everything and reach the vast majority of developmental milestones on time or even earlier.
I understand that doctors see a lot of patients every day, so there's little time to dedicate to special cases. I get it. In my line of work, I have little to no time to deal with the Linux operating system because the majority of my work centers around the Windows world, and to a smaller extent, Macs. So if someone comes to me with a Linux problem, I have to refer them to a Linux expert.
But that comes back to the whole irritation that I've had lately with medical professionals. So my kid doesn't fall into neat and tidy statistical norms. I get that. But at least take our concerns a bit more seriously than floundering around in the shoals of Not Knowing How to Deal With This.
I appreciated that the otolaryngologist at least looked up what Fragile X Syndrome is and its effects and symptoms minutes before coming into the exam room to talk to me, but I couldn't help feeling a bit put off by that. This was apparently the first time he'd ever heard of it or had to look seriously into it because voila, here's a patient in his facility who has this mythical condition.
I appreciate that research studies have carefully analyzed results to determine that there is not strong enough evidence to support a correlation between teething and fever/runny nose/lethargy/nausea. Yet, despite the lack of statistical evidence, there is anecdotal evidence that it's a possibility or else, would it really be that popular an Internet search?
I'm a fan of statistics, logic, and evidence. But sometimes, there will be enough observations that fall outside the normal distribution, outside of the n samples, and well into the alpha range (sorry; getting all stats-happy here). The point is that the numbers on the sheet of paper that studied maybe 300-1000 children don't always adequately explain the one kid sitting and crying in front of you, who has shown an actual observable linked pattern.
I don't expect scientists to be watching Henry every day for the last 15-16 months to develop their hypotheses (and I'd be a little creeped out if they did). All I ask is for medical professionals to maybe take me slightly more seriously, even if they're constantly deluged by hyperactive hysterical hypochondriac parents more frequently than they see me.
Maybe even let me finish a sentence. That'd be nice.
I'd like a medical professional to be able to get to know us just a little bit more to understand that we're trying not to be Those Parents.
I try to research problems with my child before approaching the doctor so that I know what information they need. I troubleshoot professionally, and while perhaps a bit cold to consider it in these terms, I am essentially troubleshooting my boy.
One night in urgent care, I gave the attending physician the level of detail and observations on Henry to where he asked if I was a doctor. No, I've just answered the same questions from doctors enough times to where I know what questions are going to come next. I also questioned the nurse's skills in weighing the boy when she declared him to be about 6 lbs. heavier than what I knew him to be.
It was from that moment that I resolved not to be so damn passive.
I have the utmost respect for medical professionals, but it became clear that they're also very prone to making mistakes and that rolling over when I know they've made a mistake just because I'm intimidated by their educational credentials and professional prestige is a bad way to go. So there's the constant course correction I'm having to make, that consternation.
Balancing their medical expertise with the expertise I have in my son. How much do I listen to, and how much do I ignore. Which battles are worth fighting and for how long.
Catching Up and Cutting Loose
Parents everywhere -- not just those of special needs kids -- get caught up in the day-to-day affairs of their children, and it's very easy to lose sight and lose perspective of the world at large. This is, of course, a significant contributing factor to the adversarial confrontations between childless couples and those who are parents, or stay-at-home mothers versus working mothers.
Perspective is lost, and both sides demand acknowledgement and attention.
Nonetheless, when we do get lost and caught up in the daily affairs of Henry and of Lori's pregnancy, we forget that the rest of the world is still merrily chugging along. And in a way, we do miss it. We look upon certain aspects of the past wistfully.
So when we receive the occasional buzz from friends who want to schedule time for us to enjoy adult company with advance notice, we're reminded that we do need the adult contact. And it's greatly appreciated that they remember to fish us out of the proverbial lake of daily child care, because we certainly didn't. And it didn't cross our minds to give them a buzz when we have some down-time.
And really, we do actually have down time. All that talk of parents not being able to relax for the next 18-20 or more years is exaggeration. After all, Henry's napping right now and what am I doing? I'm writing a blog post! I could be out running. I could be playing the guitar. I could be lifting some weights. I could be drinking a beer. I could be doing some more homework.
Down time exists, although perhaps not all at once or in a single large chunk.
But I digress.
Hanging out with other parents outside of the presence of our children has its benefits in that we are kindred spirits of sorts. Even more so if the other parents have children close to the same age as ours, so we're all growing and learning as parents together, rather than being made to feel like we're behind the curve when conversing with parents of older children who've already grown past these stages and their contributions to the conversation are nothing more than jaded warnings, rather than celebration the wonders and discovery.
But it's also refreshing to spend time with other adults in a purely adult setting. No talk of kids, schools, or pediatrics. F-bombs are dropped with impunity. Topics of running off for a weekender on a whim are rehashed.
This is also why I enjoy the company of teachers during the summer or even after the school day when the kids have gone home. It's refreshing to be able to see my colleagues as regular, hard working adults. Few things are as heart-warming as seeing the young, bubbly, blonde third grade teacher drop her shoulders, lose the plastic smile, and start swearing like a truck driver.
We all need some kind of balance and outlet. It's very easy to forget when caught up in the day to day grind, whether kids are involved or not.
Perspective is lost, and both sides demand acknowledgement and attention.
Nonetheless, when we do get lost and caught up in the daily affairs of Henry and of Lori's pregnancy, we forget that the rest of the world is still merrily chugging along. And in a way, we do miss it. We look upon certain aspects of the past wistfully.
So when we receive the occasional buzz from friends who want to schedule time for us to enjoy adult company with advance notice, we're reminded that we do need the adult contact. And it's greatly appreciated that they remember to fish us out of the proverbial lake of daily child care, because we certainly didn't. And it didn't cross our minds to give them a buzz when we have some down-time.
And really, we do actually have down time. All that talk of parents not being able to relax for the next 18-20 or more years is exaggeration. After all, Henry's napping right now and what am I doing? I'm writing a blog post! I could be out running. I could be playing the guitar. I could be lifting some weights. I could be drinking a beer. I could be doing some more homework.
Down time exists, although perhaps not all at once or in a single large chunk.
But I digress.
Hanging out with other parents outside of the presence of our children has its benefits in that we are kindred spirits of sorts. Even more so if the other parents have children close to the same age as ours, so we're all growing and learning as parents together, rather than being made to feel like we're behind the curve when conversing with parents of older children who've already grown past these stages and their contributions to the conversation are nothing more than jaded warnings, rather than celebration the wonders and discovery.
(as an aside, why do parents who have older children feel the need to do this? It's vaguely insulting at best and outright rude at worst, as if what we're experiencing now as parents of a toddler is meaningless or insignificant compared to the haaaaarrrd worrrrk and trraaaagedeeeee of raising a teenager, or that we have NOOOOO idea.... Just because it's been several years past already doesn't give these parents the right to take away the joys and wonders that we're experiencing for the first time, and would like the chance to relish, as they already did. It's condescending, and almost seems like a selfish need to turn the attention back onto themselves)
But it's also refreshing to spend time with other adults in a purely adult setting. No talk of kids, schools, or pediatrics. F-bombs are dropped with impunity. Topics of running off for a weekender on a whim are rehashed.
This is also why I enjoy the company of teachers during the summer or even after the school day when the kids have gone home. It's refreshing to be able to see my colleagues as regular, hard working adults. Few things are as heart-warming as seeing the young, bubbly, blonde third grade teacher drop her shoulders, lose the plastic smile, and start swearing like a truck driver.
We all need some kind of balance and outlet. It's very easy to forget when caught up in the day to day grind, whether kids are involved or not.
Sunday, September 1, 2013
Trapped
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.
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.
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.
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